Over 26 years, I have been married to the best husband any man could be. He has been taking such good care of me since (and before, but in a different way) this illness began. Without his love and patience, I might not even make it out the bed until late in the evening each day.
As I've mentioned before, he helps me to sit up, places the icepack on my back and brings me a cup of macchiato in the morning. He knows that the icepack (with meds of course) is my lifeline and without it, I can't even begin to move myself out of bed. He shows me so much love by making sure I'm able to function each day, before he leaves for work. I know, and appreciate, how hard this is when you're trying to focus on getting ready, and making it to work on time. His love shows in all the adjustments, rearranging, etc., he does around the house to make sure I can get around with the wheelchair. For instance, as soon as we moved, he built sort of a deck like ramp so I could get to the car. With steps leading to the drive, it just wasn't a simple type of ramp.
I don't get around much with all the pain and what not, but he makes sure I'm able to get out of the house at least once a week. I have visual high hopes of getting out and about, but my body doesn't seem to let me do all that I want. Mickey says he knows when I'm having a really hard time if I turn down going to stores like "Walmart". I love to just browse around, pick up little odd and ends, and shop for snacks. I don't make it there as much as I'd like to, or even close to it.
Well, Saturday we (me, Mickey, Keonna - daughter, and Tanira - granddaughter) went to pick up a puppy for me. I already knew we couldn't afford a full bred "Yorkie" so we got a "Chorkie". A yorkie and chiwauwau mix. I wanted a boy puppy but they were all black and looked more like a chiwauwau. So, I ended up with an adorable girl puppy who is just the tiniest thing and she was the only pup out the batch that looked like a yorkie. For now, she has a black and brown coat but eventually she'll be a steel cobalt-blue color. She's so precious and playful. Thankfully, she won't grow over five pounds, at least we hope not because that's my weight restriction.
Mickey really didn't want to ever get a puppy so I really appreciate him changing his mind for me. She had an accident yesterday and he said it's alright, she has to learn. I love him so much for always being there for me, in all the ways that really count. We have plenty of ups and downs, just like any other couple but over time they don't seem to be a really big deal.
We say what we feel, one or the other might get upset for a short spell or a couple days, but overall we know we love each other and it will be alright. He even seems to manage (and I don't know how) my deep depression periods. Thank GOD they usually don't last longer than a week and lately they've only lasted as much as a day.
Since Pinky's first accident, she's gone to her spot the rest of the day and night, and again so far today. I make sure to give her a snack afterward, while clapping. I'm so thankful to always be reminded that I have the gift of love and caring from Mickey. He's adjusting to having Pinky around and that's terrific.
I hope everyone is having a glorious day!! Please continue to keep everyone at ASAP in your thoughts and prayers. Remember, guests are welcome. www.asap.org/forum
Monday, December 22, 2008
Friday, December 19, 2008
A Small Christmas Get Together
On Wednesday, before my doctors appointment, I had several friends over to the house. They bought lunch, gifts, and more important, memories, conversation and many laughs. It seemed more like a Christmas party than just a lunch.
We had so much fun talking about old times at work, times spent with grandmothers when we were children, and just about anything and everything. I hadn't laughed so much and enjoyed such a good time with a small group of friends in a very long time. Actually, the rain was so bad outside with flooding everywhere, I thought they might have to cancel. My dear friend Jacque said no way, they were going to pick up lunch and be on the way around noon, so I wished them a safe trip.
There were four (I expected three, I had gifts for three) friends that showed up. After an hour, or so, three had to return to work. We took time for photos and then they left. NoraLee remained behind, bless her heart, she cleared everything away. I got an icepack out of the freezer, then she helped me go through the two baskets of goodies. We had so much fun going through everything, it was like Christmas. One of the baskets had a few decorations in it and NoraLee placed them, in a decorative fashion, on the mantle. We chit chatted for a while, then NoraLee saw me to bed and let herself out.
This was a time I will always cherish. Please keep everyone at ASAP in prayer. Thank you.
I hope everyone is having a glorious time, preparing for the holidays, or just living life!
We had so much fun talking about old times at work, times spent with grandmothers when we were children, and just about anything and everything. I hadn't laughed so much and enjoyed such a good time with a small group of friends in a very long time. Actually, the rain was so bad outside with flooding everywhere, I thought they might have to cancel. My dear friend Jacque said no way, they were going to pick up lunch and be on the way around noon, so I wished them a safe trip.
There were four (I expected three, I had gifts for three) friends that showed up. After an hour, or so, three had to return to work. We took time for photos and then they left. NoraLee remained behind, bless her heart, she cleared everything away. I got an icepack out of the freezer, then she helped me go through the two baskets of goodies. We had so much fun going through everything, it was like Christmas. One of the baskets had a few decorations in it and NoraLee placed them, in a decorative fashion, on the mantle. We chit chatted for a while, then NoraLee saw me to bed and let herself out.
This was a time I will always cherish. Please keep everyone at ASAP in prayer. Thank you.
I hope everyone is having a glorious time, preparing for the holidays, or just living life!
Thursday, December 18, 2008
Appointment w/Dr. X
I had an appointment w/Dr. X. yesterday. He said the pain in my thighs are nerve related and told me to speak w/my pain management (PM) doctor about prescribing Baclofen. We'll see how that goes. I let him know that the PM doctor was trying to get my pain under control right now and doesn't want to add too much at one time. This way, we know what's working and what's not. Since it was recommended by the main doctor following my case, I'm sure he'll add it.
Dr. X. seems to think that I haven't accepted that this is a permanent condition. I believe I have. I think he said this because I asked if a CT scan will show more than an MRI. I told him that something has occurred in the last few months in order for my pain to spike up so bad, and for so long. He said if the Baclofen, and others medications the PM doctor adds, doesn't work he'll order the MRI. I let him know that I'm currently due to have one in February anyway, according to my Neurologist.
We discussed the spinal cord injury program at Sharp hospital again and I let him know that my insurance company (none of them) won't authorize it because it's considered non-medically necessary. He wants to do a peer-to-peer review but we'll wait until January because Mickey's company is switching from BCBS, back to Cigna then. Three switches in one year, crazy!! Hopefully once he does the peer review, Cigna will cover the program. The program is designed to train patients the proper use of a wheelchair and hand control driving. I need the latter training class. Not that I'll be able to afford the installation and modifications to my vehicle but at least the training portion will be out of the way. Mickey wants me to call Sharp and see how much the program costs, out of pocket. I'll get to that, I have a few weeks to get it done.
Basically, we continue to monitor my situation and make sure I'm comfortable. Dr. X. feels that if I'm able to drive, I will not have as much pain because I'll be able to get up and go whenever I want. He says that being stuck at home isn't good and can have a negative mental impact. Basically, not being able to drive, contributes to depression and pain levels. If I'm able to get the independence of driving back, I might begin to feel better. I don't think so. I'm a passenger in the car and riding contributes to an increase in pain. When we're in the car for longer than 30 minutes, I'm crying from the pain. I carry on because I feel that if I have to be in pain, I may as well be headed to some place fun.
Please continue to pray for all the members, and caregivers, of the ASAP support group. All are welcome to visit: www.asap.org/forum.
I hope everyone has a pleasant day!!
Dr. X. seems to think that I haven't accepted that this is a permanent condition. I believe I have. I think he said this because I asked if a CT scan will show more than an MRI. I told him that something has occurred in the last few months in order for my pain to spike up so bad, and for so long. He said if the Baclofen, and others medications the PM doctor adds, doesn't work he'll order the MRI. I let him know that I'm currently due to have one in February anyway, according to my Neurologist.
We discussed the spinal cord injury program at Sharp hospital again and I let him know that my insurance company (none of them) won't authorize it because it's considered non-medically necessary. He wants to do a peer-to-peer review but we'll wait until January because Mickey's company is switching from BCBS, back to Cigna then. Three switches in one year, crazy!! Hopefully once he does the peer review, Cigna will cover the program. The program is designed to train patients the proper use of a wheelchair and hand control driving. I need the latter training class. Not that I'll be able to afford the installation and modifications to my vehicle but at least the training portion will be out of the way. Mickey wants me to call Sharp and see how much the program costs, out of pocket. I'll get to that, I have a few weeks to get it done.
Basically, we continue to monitor my situation and make sure I'm comfortable. Dr. X. feels that if I'm able to drive, I will not have as much pain because I'll be able to get up and go whenever I want. He says that being stuck at home isn't good and can have a negative mental impact. Basically, not being able to drive, contributes to depression and pain levels. If I'm able to get the independence of driving back, I might begin to feel better. I don't think so. I'm a passenger in the car and riding contributes to an increase in pain. When we're in the car for longer than 30 minutes, I'm crying from the pain. I carry on because I feel that if I have to be in pain, I may as well be headed to some place fun.
Please continue to pray for all the members, and caregivers, of the ASAP support group. All are welcome to visit: www.asap.org/forum.
I hope everyone has a pleasant day!!
Sunday, December 14, 2008
Pain Management Visit - December 9th
I've been having such a hard time managing my pain level over the last three or four months. During that time, I was switched from a pain management doctor to a physical medicine and rehabilitation doctor. My pain management doctor made the switch.
My first visit with the new PM doc, in November, was more of a consultation. This last visit he increased the extended release medication and added an immediate release medication. I began taking them the same day of my visit. So far, I haven't noticed too much of a change and I'm still having to use the icepack more than once each day. Prior to the last three or four months, I would only need the icepack first thing in the morning. My husband would sit me on the pillows and add the icepack. I would leave it on for an hour before attempting to transfer into my wheelchair.
Lately, I've been using the ice packs anywhere from two to four times a day. I've also been sleeping a lot more because when I'm sleeping, I'm not crying from excruciating pain. I'm hoping and praying that this increase does something soon. Overall, between the pain, the progression of other symptoms, and the constant muscle spasms in my thighs, I'm not doing too well health wise but I do still keep a smile on my face most of the time. The deterioration the doctors have spoken of, over the last two years, has become much more obvious to me.
Please continue to keep everyone in the ASAP support group in your thoughts and prayers. We also need to remember to give thanks and prayer to all the caregivers.
I hope everyone has had a wonderful weekend!
My first visit with the new PM doc, in November, was more of a consultation. This last visit he increased the extended release medication and added an immediate release medication. I began taking them the same day of my visit. So far, I haven't noticed too much of a change and I'm still having to use the icepack more than once each day. Prior to the last three or four months, I would only need the icepack first thing in the morning. My husband would sit me on the pillows and add the icepack. I would leave it on for an hour before attempting to transfer into my wheelchair.
Lately, I've been using the ice packs anywhere from two to four times a day. I've also been sleeping a lot more because when I'm sleeping, I'm not crying from excruciating pain. I'm hoping and praying that this increase does something soon. Overall, between the pain, the progression of other symptoms, and the constant muscle spasms in my thighs, I'm not doing too well health wise but I do still keep a smile on my face most of the time. The deterioration the doctors have spoken of, over the last two years, has become much more obvious to me.
Please continue to keep everyone in the ASAP support group in your thoughts and prayers. We also need to remember to give thanks and prayer to all the caregivers.
I hope everyone has had a wonderful weekend!
Tuesday, December 2, 2008
Update
I hope everyone had a lovely, memorable Thanksgiving. I was able to enjoy a wonderfully glorious Thanksgiving with my family. My brother surprised me with a visit from Chicago, I was excited beyond belief.
I haven't been doing so well lately so I haven't been keeping up on my blogging. This is the worse time I've had since February when I experienced a significant progression. I haven't required nursing care this time but it's still very debilitating and overwhelming. In time, I'm learning to adjust to the changes, and new symptoms, but it's been extremely difficult to say the least.
I'm thankful that depression has not reared it's ugly head this time around. When I cry, it's completely due to the excruciating pain I've been struggling with.
I hope everyone has a great day! Please keep everyone at ASAP in prayer. Each of them is battling a similar evil every day. Special prayers for Angie and Kira, as they are both awaiting decision on surgery. Thank you all.
I haven't been doing so well lately so I haven't been keeping up on my blogging. This is the worse time I've had since February when I experienced a significant progression. I haven't required nursing care this time but it's still very debilitating and overwhelming. In time, I'm learning to adjust to the changes, and new symptoms, but it's been extremely difficult to say the least.
I'm thankful that depression has not reared it's ugly head this time around. When I cry, it's completely due to the excruciating pain I've been struggling with.
I hope everyone has a great day! Please keep everyone at ASAP in prayer. Each of them is battling a similar evil every day. Special prayers for Angie and Kira, as they are both awaiting decision on surgery. Thank you all.
Thursday, November 13, 2008
New Doctor
My current pain management doctor is also a surgeon. He had gotten so overwhelmed in his practice and working every weekend that he decided to refer all his prescription only patients (this is where I fall in) to other doctors in the area. He chose doctors who specialize in physical medicine and rehabilitation. He now has more time to dedicate to surgical patients without working on the weekend. He told me if I ever have a problem with getting my prescriptions, don't hesitate to give him a call and he'll write my scripts out for me.
So, I saw the new pm doc Wednesday. It was an interesting visit, to say the least. His computer system malfunctioned right in time for my visit. He had all my previous medical records in his computer. He apologized continuously because this was the first time his computer malfunctioned and he does all his work from the computer. Basically, Mickey and I gave him an overview of what I've been going through over the last few years.
I then told him my condition prior to seeing Dr. V. At that time, I couldn't sit or lay down because I'd be in such extreme pain I'd classified it as closer to 15 on the pain scale. The pain scale goes from 1 to 10, with 10 being the highest level. I could only prop up against about five pillows trying not to move.
I explained that prior to the last three months, or so, my pain level was ranging from 5 to 7 throughout the day, sometimes spiking up to an 8. I explained that this was manageable for me. I was able to function. However, the last three months, or so, my pain level has been ranging from 7 to 9 and I'm having a really hard time functioning. I'm sleeping most of the day, and night, trying to keep from dealing with the pain.
I almost forgot to inform him that I've been experiencing a new type of pain in my thigh muscles. I've always had tightness in them, since this whole situation began. Now, I'm experiencing this pain that's so strong it causes me to yell out. It happens whenever I put pressure on my toes. For instance, I'm sitting in the wheelchair and get to the edge to pick something up, OUCH!!!!!!! My goodness this pain is intense and sharp. He nodded as though he knew what he could do to help me with this but didn't do anything yet. He promised that he'd be more organized for my next visit and we would begin to see what can be changed, or adjusted, to help decrease the pain.
I told him that my goal of being in pain management is to have my pain level back at a manageable level. If he could get it lower than that, I'd be forever grateful, but I'd be really happy just be able to function again, with a high (yes) but manageable pain level. I told him it's terrible to say that you're use to high level pain now. It shouldn't be this way. I explained that Dr. V and I were working on bringing the pain back down but so far, the 10mg/day increase in Oxycontin literally does nothing.
At the end of the appointment, the doc was so funny in telling us how he hasn't had to write out prescriptions in years. It's all done by computer. So, we shall see if I can get relief with any changes or adjustments he makes. Time will tell, I'd prefer sooner, rather than later.
Please keep my friends at ASAP in prayer. Everyone in this support group struggles so hard everyday and could really use your help through prayer.
I hope everyone is doing well and having pleasant days!
So, I saw the new pm doc Wednesday. It was an interesting visit, to say the least. His computer system malfunctioned right in time for my visit. He had all my previous medical records in his computer. He apologized continuously because this was the first time his computer malfunctioned and he does all his work from the computer. Basically, Mickey and I gave him an overview of what I've been going through over the last few years.
I then told him my condition prior to seeing Dr. V. At that time, I couldn't sit or lay down because I'd be in such extreme pain I'd classified it as closer to 15 on the pain scale. The pain scale goes from 1 to 10, with 10 being the highest level. I could only prop up against about five pillows trying not to move.
I explained that prior to the last three months, or so, my pain level was ranging from 5 to 7 throughout the day, sometimes spiking up to an 8. I explained that this was manageable for me. I was able to function. However, the last three months, or so, my pain level has been ranging from 7 to 9 and I'm having a really hard time functioning. I'm sleeping most of the day, and night, trying to keep from dealing with the pain.
I almost forgot to inform him that I've been experiencing a new type of pain in my thigh muscles. I've always had tightness in them, since this whole situation began. Now, I'm experiencing this pain that's so strong it causes me to yell out. It happens whenever I put pressure on my toes. For instance, I'm sitting in the wheelchair and get to the edge to pick something up, OUCH!!!!!!! My goodness this pain is intense and sharp. He nodded as though he knew what he could do to help me with this but didn't do anything yet. He promised that he'd be more organized for my next visit and we would begin to see what can be changed, or adjusted, to help decrease the pain.
I told him that my goal of being in pain management is to have my pain level back at a manageable level. If he could get it lower than that, I'd be forever grateful, but I'd be really happy just be able to function again, with a high (yes) but manageable pain level. I told him it's terrible to say that you're use to high level pain now. It shouldn't be this way. I explained that Dr. V and I were working on bringing the pain back down but so far, the 10mg/day increase in Oxycontin literally does nothing.
At the end of the appointment, the doc was so funny in telling us how he hasn't had to write out prescriptions in years. It's all done by computer. So, we shall see if I can get relief with any changes or adjustments he makes. Time will tell, I'd prefer sooner, rather than later.
Please keep my friends at ASAP in prayer. Everyone in this support group struggles so hard everyday and could really use your help through prayer.
I hope everyone is doing well and having pleasant days!
Saturday, October 25, 2008
Here we go again. Why?????
Unfortunately, I'm now back to icing my back many times throughout the day. Today, I actually feel like going to the ER to get an injection so I can have some peace of mind. A time without pain. I really don't know how much more of this I can take. My back is killing me and so are the abnormal spinal sensations. I'm trying my best to remain positive. I'm trying to do other things to keep myself distracted.
ASAP is very light today so not much of a distraction. I went to chat today and that was great until I had to give some time to my granddaughter. She loves her Nana attention I give. I love being able to provide this quality time to her. It provided some distraction while I was also on the icepack.
I've been trying not to spend so much time in the bed since we've moved. It started with my mother-in-law visiting. I didn't want her to get hurt trying to look after me so it helped to keep the positive flow going by not letting her help me. Once she left, I stayed in the mode of getting up, visiting ASAP and staying away from the bed so much. It really helps to keep the depression down too. I've noticed that when I'm up more, I'm not depressed so much.
Being up, I think, is not so good for my back. It's good for my mood so I guess that's a plus. It's all connected. Relieving one thing (depression), helps out with the rest in the long run, I guess. I do know this, I just think sitting contributes to my increased pain level. I do make sure I take frequent breaks and naps. Actually, my body never lets me forget. I get so exhausted and feel so tired (can't hold my eyes open and sometimes they burn) that I have no choice. Still, the pain won't stop or even let up for a while.
It's like a catch 22. Have more pain or be depressed??? I don't want either. Depression is horrible and it's really hard to get out of that mode, once you're there. It's a miserable feeling and so is the pain. It's a lose/lose situation.
With all that's going on and the intensity of pain I'm dealing with, I must thank GOD that I'm able to still think rationally and not hide myself in bed, away from the world. I thank GOD for the time I'm able to spend in the ASAP forum. I thank GOD for my family and all the people at ASAP who understand what I'm going through. I thank GOD that I'm up and about, living life, instead of hiding in the bed feeling sorry for myself and useless.
I will continue to use as many ice packs as it takes to give me even a moment of relief. I will continue to manage the best way I can, with a smile on my face. When the pain becomes too much, I will continue to sleep through the worst as I've always done.
I hope everyone is having a pleasant weekend!!!
ASAP is very light today so not much of a distraction. I went to chat today and that was great until I had to give some time to my granddaughter. She loves her Nana attention I give. I love being able to provide this quality time to her. It provided some distraction while I was also on the icepack.
I've been trying not to spend so much time in the bed since we've moved. It started with my mother-in-law visiting. I didn't want her to get hurt trying to look after me so it helped to keep the positive flow going by not letting her help me. Once she left, I stayed in the mode of getting up, visiting ASAP and staying away from the bed so much. It really helps to keep the depression down too. I've noticed that when I'm up more, I'm not depressed so much.
Being up, I think, is not so good for my back. It's good for my mood so I guess that's a plus. It's all connected. Relieving one thing (depression), helps out with the rest in the long run, I guess. I do know this, I just think sitting contributes to my increased pain level. I do make sure I take frequent breaks and naps. Actually, my body never lets me forget. I get so exhausted and feel so tired (can't hold my eyes open and sometimes they burn) that I have no choice. Still, the pain won't stop or even let up for a while.
It's like a catch 22. Have more pain or be depressed??? I don't want either. Depression is horrible and it's really hard to get out of that mode, once you're there. It's a miserable feeling and so is the pain. It's a lose/lose situation.
With all that's going on and the intensity of pain I'm dealing with, I must thank GOD that I'm able to still think rationally and not hide myself in bed, away from the world. I thank GOD for the time I'm able to spend in the ASAP forum. I thank GOD for my family and all the people at ASAP who understand what I'm going through. I thank GOD that I'm up and about, living life, instead of hiding in the bed feeling sorry for myself and useless.
I will continue to use as many ice packs as it takes to give me even a moment of relief. I will continue to manage the best way I can, with a smile on my face. When the pain becomes too much, I will continue to sleep through the worst as I've always done.
I hope everyone is having a pleasant weekend!!!
Monday, October 20, 2008
Facebook Account Includes ASAP Cause
I have a facebook account and I've recently joined the ASAP cause. I would encourage others who are struggling with SM/CM to join. You can invite your friends/family who are facebook members to join and then they can make a donation to ASAP. It's a great way to spread the word about CM/SM and raise money for research.
You can access my facebook account at http://www.facebook.com/profile.php?id=1396671112
If you don't have an account, you can create one. Once you get your account set-up and connect with any friends/family currently on facebook, you can join the cause. If you'd rather not join the cause but still want to make a donation, you can make a donation through my account.
I hope everyone is having a great day!
You can access my facebook account at http://www.facebook.com/profile.php?id=1396671112
If you don't have an account, you can create one. Once you get your account set-up and connect with any friends/family currently on facebook, you can join the cause. If you'd rather not join the cause but still want to make a donation, you can make a donation through my account.
I hope everyone is having a great day!
Tuesday, October 14, 2008
Update - No changes
There's really nothing new to tell other than I'm getting use to "all" the new/old symptoms/changes. Unfortunately that's just all there is to it. It won't go away so I just have to learn to deal with it, so I am.
Today, I started feeling the numbness in my thigh, up to my private area. I can't really say why exactly, but for some reason I just broke down in tears. Maybe it was the thought of knowing that area was going numb, I wish I knew. Regardless, it's not like it matters because I'm celibate these days.
Anyway, I've adjusted and I just need to start handling these situations better. I think I did rather well this time, no depression that is. However, I'd rather know that I'm just use to it and not make a big deal out of them anymore. Well, I'd still document it here but only for reference and hopefully without stating that I need to adjust to it.
I hope everyone is doing well.
Today, I started feeling the numbness in my thigh, up to my private area. I can't really say why exactly, but for some reason I just broke down in tears. Maybe it was the thought of knowing that area was going numb, I wish I knew. Regardless, it's not like it matters because I'm celibate these days.
Anyway, I've adjusted and I just need to start handling these situations better. I think I did rather well this time, no depression that is. However, I'd rather know that I'm just use to it and not make a big deal out of them anymore. Well, I'd still document it here but only for reference and hopefully without stating that I need to adjust to it.
I hope everyone is doing well.
Friday, October 10, 2008
Another Progression - Different But Too Soon
It seems I just got use to an increase in the pain and tremors. Here we go again now with every other symptom becoming much stronger than ever before.
The right sided numbness and tingling is driving me bananas. The tremors in my hand are now starting to dramatically effect my typing speed and errors. My left foot is numb now. I'm having an even harder time with sleep because the intensity of the tremors, pain, chronic itching and abnormal spinal sensations make me sick. It all feels so bizarre that I get nauseous and sick to my stomach. I can't stand it all so if I don't fall asleep right away, I have to sit up, or prop against several pillows, until I do fall asleep. It's maddening and enough to make me want to pull my hair out. I hate it all and I'm extremely tired of it all. I don't know how much longer I can manage.
I can't even talk right half the time. Some days are worse than others, but along with the hoarseness, I'm stuttering more. This really bothers me a lot and frustrates me to no end. Once I'm frustrated, it becomes a vicious cycle because I get stressed and then I stutter more. I know this, yet I can't stop getting frustrated over it. It's like the word is right there but it just won't come out, or the wrong word comes out sometimes. I can handle the wrong word coming out, it's when the word is right there but I can't get it to come out of my mouth that's causing the problem.
The tremors are happening more frequent when I'm sitting. It's invading all my safe places. It's not just tremors, they hurt and cause my muscles to spasm and increases the pain in my back. If it was just as simple as having tremors, I could probably deal with it a little better. I feel like I've run a marathon after one episode and I actually have to lie down afterward. This action causes the tremors to start up again. Then it will happen a few more times before they will actually calm down for a little while and allow me to rest or nap. It's exhausting.
Sometimes, I wish others could feel what it feels like to have to live each day like this. I don't make a big deal out of it because it won't change anything. Mostly, I stay positive and smile, even when I'm at my worse. If I'm hurting too bad (or the other symptoms become too much) and can't remain positive, I go to bed and sleep through the pain, or other symptoms.
Yesterday, the pain management doctor said it was OK for me to up the Lyrica another 75mg (total 450mg) by taking two in morning. However, I can only do this when the pain is unbearable. I asked him because I had some rough days and had already increased the Lyrica, on the worse days. It's not everyday. At least, I pray it's not everyday that every symptom bothers me and becomes intolerable. For the most part, it's all here to stay and I know this, so I try to deal with it the best way I can. However, there does seem to be days where it bothers me more than other days. Maybe it's during that time of the month. I still have PMS, even though I no longer have a cycle, because I still have my ovaries.
I hope everyone has a "FUN" weekend!!
The right sided numbness and tingling is driving me bananas. The tremors in my hand are now starting to dramatically effect my typing speed and errors. My left foot is numb now. I'm having an even harder time with sleep because the intensity of the tremors, pain, chronic itching and abnormal spinal sensations make me sick. It all feels so bizarre that I get nauseous and sick to my stomach. I can't stand it all so if I don't fall asleep right away, I have to sit up, or prop against several pillows, until I do fall asleep. It's maddening and enough to make me want to pull my hair out. I hate it all and I'm extremely tired of it all. I don't know how much longer I can manage.
I can't even talk right half the time. Some days are worse than others, but along with the hoarseness, I'm stuttering more. This really bothers me a lot and frustrates me to no end. Once I'm frustrated, it becomes a vicious cycle because I get stressed and then I stutter more. I know this, yet I can't stop getting frustrated over it. It's like the word is right there but it just won't come out, or the wrong word comes out sometimes. I can handle the wrong word coming out, it's when the word is right there but I can't get it to come out of my mouth that's causing the problem.
The tremors are happening more frequent when I'm sitting. It's invading all my safe places. It's not just tremors, they hurt and cause my muscles to spasm and increases the pain in my back. If it was just as simple as having tremors, I could probably deal with it a little better. I feel like I've run a marathon after one episode and I actually have to lie down afterward. This action causes the tremors to start up again. Then it will happen a few more times before they will actually calm down for a little while and allow me to rest or nap. It's exhausting.
Sometimes, I wish others could feel what it feels like to have to live each day like this. I don't make a big deal out of it because it won't change anything. Mostly, I stay positive and smile, even when I'm at my worse. If I'm hurting too bad (or the other symptoms become too much) and can't remain positive, I go to bed and sleep through the pain, or other symptoms.
Yesterday, the pain management doctor said it was OK for me to up the Lyrica another 75mg (total 450mg) by taking two in morning. However, I can only do this when the pain is unbearable. I asked him because I had some rough days and had already increased the Lyrica, on the worse days. It's not everyday. At least, I pray it's not everyday that every symptom bothers me and becomes intolerable. For the most part, it's all here to stay and I know this, so I try to deal with it the best way I can. However, there does seem to be days where it bothers me more than other days. Maybe it's during that time of the month. I still have PMS, even though I no longer have a cycle, because I still have my ovaries.
I hope everyone has a "FUN" weekend!!
Tuesday, October 7, 2008
Update
My days have been average. I fight pain in the morning, try to visit ASAP in the late morning or afternoon, nap, visit ASAP again then I wait for sleep.
I'm really exhausted and so very tired of dealing with pain. I hate it and there's nothing I can do about it.
My oldest son came home October 4th and my grandson is here for a week visiting him, and his other grandma and aunties. He is such a little darling boy. He's very helpful, very respectful, well mannered and polite, and so very adorable. I've missed him terribly since his last visit. I really need to take him out to Chuck-E-Cheese and Toys'R'Us. I'm hoping I feel well enough to take him and my granddaughter on Saturday, before Jaeden returns back to Las Vegas on Sunday.
It was so exciting seeing my son again and really wonderful to see the joy and excitement in his son's eyes when he ran to him yelling "Daddy......". Once my docking station for my camera is hooked back up to my computer, I'll post the photos of their reunion. It was such an overwhelming time. I haven't been able to get a good rest since then. Today is actually the first day I was back on schedule with my rest periods and naps.
Hopefully, today is the beginning of me getting back on schedule and hopefully being able to get the pain back under control. I really don't want to be in bed lying down while my grandson is here. I want to enjoy spending time with him while he's here. Tomorrow morning he's off to visit his other relatives so that's the perfect time for me to work on managing the pain. By doing this, I know I'll be prepared to spend quality time with both my grandkids on Saturday.
I hope everyone is having a good day!
I'm really exhausted and so very tired of dealing with pain. I hate it and there's nothing I can do about it.
My oldest son came home October 4th and my grandson is here for a week visiting him, and his other grandma and aunties. He is such a little darling boy. He's very helpful, very respectful, well mannered and polite, and so very adorable. I've missed him terribly since his last visit. I really need to take him out to Chuck-E-Cheese and Toys'R'Us. I'm hoping I feel well enough to take him and my granddaughter on Saturday, before Jaeden returns back to Las Vegas on Sunday.
It was so exciting seeing my son again and really wonderful to see the joy and excitement in his son's eyes when he ran to him yelling "Daddy......". Once my docking station for my camera is hooked back up to my computer, I'll post the photos of their reunion. It was such an overwhelming time. I haven't been able to get a good rest since then. Today is actually the first day I was back on schedule with my rest periods and naps.
Hopefully, today is the beginning of me getting back on schedule and hopefully being able to get the pain back under control. I really don't want to be in bed lying down while my grandson is here. I want to enjoy spending time with him while he's here. Tomorrow morning he's off to visit his other relatives so that's the perfect time for me to work on managing the pain. By doing this, I know I'll be prepared to spend quality time with both my grandkids on Saturday.
I hope everyone is having a good day!
Sunday, September 28, 2008
Update On The Pool Therapy and Smoking
The pool therapy really wasn't going all that well so I stopped going. I also had a problem trying to get on the schedule because I required more one on one time. I'd try to schedule at the end of my visit and be told that I'd get a phone call for scheduling because the therapist wanted to make sure she had time. I'd never receive a call and have to call back. I'd been forgotten about. I went in for the second visit, then the third (which was with a substitute therapist). I didn't schedule the fourth visit because the therapist was on vacation so I was told that I'd get a phone call. I never got a call and this time I didn't call in to remind them that I needed an appointment.
A few weeks after the last visit I had, I received a call from the therapist wondering why I hadn't been in. I explained that no one ever called to schedule. I even explained that I'd actually finally gotten a call from someone who was inquiring as to why I hadn't returned. I told her I explained that I was awaiting a phone call for scheduling but no one ever called. This person told me that someone would be calling me that day with an appointment. I told her that was alright because scheduling was just too difficult and since I had the pool at home, I'd just make sure to keep up on my own. The therapist then apologized for the lack of communication and scheduling, then she asked if I wanted to schedule an appointment then. I told her no, I'd continue working on my own.
Well, we've moved and there's no place to set-up a pool. The front yard is huge but there's spots for trees which makes it very difficult to actually find the right location for the pool. There's no back yard. That would work out great but it's just not an option. So, I haven't been participating in any pool activity since the last weekend in July. We moved that weekend.
As far as the smoking goes, I tried really hard to quit but it just didn't happen. I even used the patches but they didn't help either. Overall, I have cut back but I haven't stopped.
A few weeks after the last visit I had, I received a call from the therapist wondering why I hadn't been in. I explained that no one ever called to schedule. I even explained that I'd actually finally gotten a call from someone who was inquiring as to why I hadn't returned. I told her I explained that I was awaiting a phone call for scheduling but no one ever called. This person told me that someone would be calling me that day with an appointment. I told her that was alright because scheduling was just too difficult and since I had the pool at home, I'd just make sure to keep up on my own. The therapist then apologized for the lack of communication and scheduling, then she asked if I wanted to schedule an appointment then. I told her no, I'd continue working on my own.
Well, we've moved and there's no place to set-up a pool. The front yard is huge but there's spots for trees which makes it very difficult to actually find the right location for the pool. There's no back yard. That would work out great but it's just not an option. So, I haven't been participating in any pool activity since the last weekend in July. We moved that weekend.
As far as the smoking goes, I tried really hard to quit but it just didn't happen. I even used the patches but they didn't help either. Overall, I have cut back but I haven't stopped.
Life Happens
On the 19th, my dear friend Cindy invited me (as a gift of friendship) to a Janet Jackson concert. I went with her, on the 20th, and we had a blast. I'll post pictures when I get a chance. I was completed surprised and excited although I knew it would take a lot out of me, I can't just put my life on hold because I have all these symptoms that try to take over my body and life.
I had so much pain, and the glaring lights were blinding as lights always are for me, it was unbelievable but how many more times will I have a chance to see Janet Jackson in concert. Being there with a close friend was more than I could ask for. It was exciting, thrilling and all the other wonderful words in the dictionary. The performance was AWESOME and the outfits were absolutely adorable, each and every one of them. The choreography was totally amazing and made me think of my daughter often throughout the performance. Keonna loves to dance and choreograph dance moves. She actually teaches young children to dance as well. It was so very well put together and I'm so very thankful to have a friend think of me in this way.
It takes a lot for a friend to manage being able to take for an outing. It takes a true friend to even think of going through all the trouble with the wheelchair. You have assemble and dis-assemble it because it's electric, you also have to connect the batteries. Being electric means the chair is heavier than a manual one also. I appreciate that my friend didn't let the thought of all this trouble prevent her from thinking of taking me to this concert with her. She figured I'd really enjoy and felt that I also could use the outing. I was deeply touched. She even bought my favorite drink from Starbucks with her, to start the adventure out right.
It's been a week and I'm still in the recovery process but I also had my regular weekly outing on Tuesday. It's been rough because I never really recovered from the first outing before I took the second outing. This is the part that depresses me about just doing something as normal as going to a concert or going out to dinner with my husband. I just don't bounce back right away. It takes a few days to get the pain under control. The numbness becomes more pronounced because when I'm sitting (even now typing this blog), I experience a lot of tingling up and down my spine. When I go to lay down, the nighttime pain, tremors and sensations are become totally unmanageable and unbearable.
If you live a completely active free life without even the slightest reaching, twisting or activity, you might have a chance at having the symptoms to a lesser degree. The bottom line is that there really is no way of knowing. I rarely ever get out of the house and I spend a great deal of my time trying to keep my symptoms at bay because I just can't stand all the symptoms that happen throughout the day. Doing nothing is no guarantee that the symptoms won't flare-up to a degree where they are unmanageable. As I mentioned, I spend most of my time doing nothing but I still have excruciatingly bad flare-ups where I want to go to the ER but experience has taught me that all the ER does is provide a temporary time of relief. Once the effect of the injection wears off, you're still stuck with the same symptoms that led you there for a week, a few weeks, a month, or several months. You never know what you're going to get.
That said, when the rare occasion comes up that I'm able to have an enjoyable outing with family and/or friends, why turn it down. Enjoying an outing means you'll pay for it later but you'll pay for it later whether you're out enjoying life or sitting (or laying in the bed) at home. I'm only 45 years old and I refuse to live like a person on their deathbed, even if it feels like that most days. I'm not on my deathbed and I am here among the living and can enjoy a good time, just like everyone else.
I can be in pain and experience life with all these horrible symptoms from anywhere. No matter where I am or what I'm doing, these symptoms are a part of my life. I may as well enjoy some parts of life along the way. I can lay in bed and be in pain or spend time laughing with a friend while still being in pain. Distraction helps just like using a TENS unit or an icepack.
I'll be sure to post photos from the concert when I feel better up to all the functioning it will take.
I hope everyone is having a TERRIFIC weekend!!
I had so much pain, and the glaring lights were blinding as lights always are for me, it was unbelievable but how many more times will I have a chance to see Janet Jackson in concert. Being there with a close friend was more than I could ask for. It was exciting, thrilling and all the other wonderful words in the dictionary. The performance was AWESOME and the outfits were absolutely adorable, each and every one of them. The choreography was totally amazing and made me think of my daughter often throughout the performance. Keonna loves to dance and choreograph dance moves. She actually teaches young children to dance as well. It was so very well put together and I'm so very thankful to have a friend think of me in this way.
It takes a lot for a friend to manage being able to take for an outing. It takes a true friend to even think of going through all the trouble with the wheelchair. You have assemble and dis-assemble it because it's electric, you also have to connect the batteries. Being electric means the chair is heavier than a manual one also. I appreciate that my friend didn't let the thought of all this trouble prevent her from thinking of taking me to this concert with her. She figured I'd really enjoy and felt that I also could use the outing. I was deeply touched. She even bought my favorite drink from Starbucks with her, to start the adventure out right.
It's been a week and I'm still in the recovery process but I also had my regular weekly outing on Tuesday. It's been rough because I never really recovered from the first outing before I took the second outing. This is the part that depresses me about just doing something as normal as going to a concert or going out to dinner with my husband. I just don't bounce back right away. It takes a few days to get the pain under control. The numbness becomes more pronounced because when I'm sitting (even now typing this blog), I experience a lot of tingling up and down my spine. When I go to lay down, the nighttime pain, tremors and sensations are become totally unmanageable and unbearable.
If you live a completely active free life without even the slightest reaching, twisting or activity, you might have a chance at having the symptoms to a lesser degree. The bottom line is that there really is no way of knowing. I rarely ever get out of the house and I spend a great deal of my time trying to keep my symptoms at bay because I just can't stand all the symptoms that happen throughout the day. Doing nothing is no guarantee that the symptoms won't flare-up to a degree where they are unmanageable. As I mentioned, I spend most of my time doing nothing but I still have excruciatingly bad flare-ups where I want to go to the ER but experience has taught me that all the ER does is provide a temporary time of relief. Once the effect of the injection wears off, you're still stuck with the same symptoms that led you there for a week, a few weeks, a month, or several months. You never know what you're going to get.
That said, when the rare occasion comes up that I'm able to have an enjoyable outing with family and/or friends, why turn it down. Enjoying an outing means you'll pay for it later but you'll pay for it later whether you're out enjoying life or sitting (or laying in the bed) at home. I'm only 45 years old and I refuse to live like a person on their deathbed, even if it feels like that most days. I'm not on my deathbed and I am here among the living and can enjoy a good time, just like everyone else.
I can be in pain and experience life with all these horrible symptoms from anywhere. No matter where I am or what I'm doing, these symptoms are a part of my life. I may as well enjoy some parts of life along the way. I can lay in bed and be in pain or spend time laughing with a friend while still being in pain. Distraction helps just like using a TENS unit or an icepack.
I'll be sure to post photos from the concert when I feel better up to all the functioning it will take.
I hope everyone is having a TERRIFIC weekend!!
Saturday, September 20, 2008
Better Days
It's so amazing and intricate, the way SM works on the body. You never know from minute to minute, how you're going to feel. I am continually at a lose of the "no rhyme or reason" philosophy on how SM works. When you think you know why increases in symptoms occur, you find out, you're wrong. It's basically a disorder that does "what it wants, when it wants".
Thank GOD, I have been feeling a little better since Wednesday. I still have swelling on the right of my spine, and across the lower back. Overall, I'm beginning to feel less days of 8-10 pain, and more days of 7-8 level pain.
I find it rather strange that the body begins to accommodate all the suffering that's placed on it. I might think, I need to go to the ER. However, I know that all they really do is give you an injection and send you on your way. That's a huge price to pay for such a short-lived comfort effect. Once the effect of the injection wears off, you're still stuck with the overwhelming, excruciating pain that led you to the ER in the first place. It's very frustrating. I can sleep at home without paying hundreds of dollars for an injection to put me to sleep. The only difference being that the injection allows me to sleep peacefully without any recollection of the hours that passed.
That said, the body eventually adjusts to the abuse of increased pain and other symptoms. It's sad, but the pain, numbness, tingling, tremors, breathing difficulty, tinnitus and any symptoms I experience, are not life-threatening. Once the body adjusts to the abuse and stress being placed on it, you just learn to live with everything and move on. You find ways to live with them, maintain some sense of normalcy and a chance at a "new" normal way of living.
I have continued, over the last two years, to learn that I can and will, survive. It's truly such an amazing experience to go from crying and being in the fetal position in bed, to being up in the wheelchair with a smile on my face, going about my day.
The last few days have been livable and I certainly pray for livable days. Today, I can even deal with all the strange sensations going through my spine, all day long, with a dramatic increase when I lay down.
Thank GOD for better days!! :-)
I hope everyone is having a great weekend!!
Thank GOD, I have been feeling a little better since Wednesday. I still have swelling on the right of my spine, and across the lower back. Overall, I'm beginning to feel less days of 8-10 pain, and more days of 7-8 level pain.
I find it rather strange that the body begins to accommodate all the suffering that's placed on it. I might think, I need to go to the ER. However, I know that all they really do is give you an injection and send you on your way. That's a huge price to pay for such a short-lived comfort effect. Once the effect of the injection wears off, you're still stuck with the overwhelming, excruciating pain that led you to the ER in the first place. It's very frustrating. I can sleep at home without paying hundreds of dollars for an injection to put me to sleep. The only difference being that the injection allows me to sleep peacefully without any recollection of the hours that passed.
That said, the body eventually adjusts to the abuse of increased pain and other symptoms. It's sad, but the pain, numbness, tingling, tremors, breathing difficulty, tinnitus and any symptoms I experience, are not life-threatening. Once the body adjusts to the abuse and stress being placed on it, you just learn to live with everything and move on. You find ways to live with them, maintain some sense of normalcy and a chance at a "new" normal way of living.
I have continued, over the last two years, to learn that I can and will, survive. It's truly such an amazing experience to go from crying and being in the fetal position in bed, to being up in the wheelchair with a smile on my face, going about my day.
The last few days have been livable and I certainly pray for livable days. Today, I can even deal with all the strange sensations going through my spine, all day long, with a dramatic increase when I lay down.
Thank GOD for better days!! :-)
I hope everyone is having a great weekend!!
Sunday, September 14, 2008
Good and Bad Times
My friend NL came to visit on Friday. She is such a wonderful person. She keeps me company until I need to lay down. We chat it up and just have the best time.
Well, she came bearing gifts from herself and another mutual friend. It felt like Christmas. Before she left, she helped me put everything away and placed the most gorgeous pink, luxurious robe (from the mutual friend) on the end of my bed. Gifts or no gifts, I truly enjoy time spent with friends.
Saturday, for some reason, I woke up with the worse pain in the back, that goes around to the chest, on the right side only. I have Dilaudid that I take for emergencies only but it's not helping at all. Not to mention, I'm still taking my regular medications. I should go to the ER but I'm so tired of the same routine. They give me an injection for pain, wait for it to take effect, then send me home. Once in a while, they might do an MRI and give me the status of my syrinx (if it's grown or shows no change).
Depending on the doctor in ER, they seem to take the lazy way out and just say the pain is from the syrinx. What if it's not? Simply giving me a shot and sending me home isn't finding the problem.
I can't even sleep through the night again. Although I still toss and turn in pain, since I've been on Lyrica, I just yell out from the intensity of the pain and then fall right back to sleep, once I change sides. Well, the last few nights, I haven't been able to just go right back to sleep. It's like a never ending nightmare.
Once I get into a, somewhat, comfortable position (in bed or in the wheelchair) if I move one inch, the pain is so excruciating that all I can do is yell out. It hurts to breathe in, talk or move. It came on so suddenly that I believe it could be related to the syrinx. That's normally how the SM symptoms present themselves, for me anyway. "All of a sudden a new symptom (or increase in existing symptoms) is there, no warning"!
I'll give it another day or so, if no better, I'll call the doctor's office and schedule an appointment. I'm just so sick of it all. It's a constant merry go round with SM symptoms, and with the doctors. When it gets this bad, I always say "I don't know how much more of this I can take". The bad part is that I am still having a problem with pain management, overall. So far, nothing has brought the pain level back down to the range between 5 - 7, so on top of this new type of pain, I'm still struggling with the pain level ranging between 7 - 9.
I know I can't give up and I will do whatever it takes to stay positive because I know that "this too shall pass". It's sad that all that really means is that I'll become adjusted to the level of pain I'm at. It's taking so long to get the pain under control that by the time the PM doctor gets it right, I'll have a new feeling of what level 10 feels like. I will survive by the Grace of GOD and lots of sleep.
I hope everyone has had a great weekend!
Well, she came bearing gifts from herself and another mutual friend. It felt like Christmas. Before she left, she helped me put everything away and placed the most gorgeous pink, luxurious robe (from the mutual friend) on the end of my bed. Gifts or no gifts, I truly enjoy time spent with friends.
Saturday, for some reason, I woke up with the worse pain in the back, that goes around to the chest, on the right side only. I have Dilaudid that I take for emergencies only but it's not helping at all. Not to mention, I'm still taking my regular medications. I should go to the ER but I'm so tired of the same routine. They give me an injection for pain, wait for it to take effect, then send me home. Once in a while, they might do an MRI and give me the status of my syrinx (if it's grown or shows no change).
Depending on the doctor in ER, they seem to take the lazy way out and just say the pain is from the syrinx. What if it's not? Simply giving me a shot and sending me home isn't finding the problem.
I can't even sleep through the night again. Although I still toss and turn in pain, since I've been on Lyrica, I just yell out from the intensity of the pain and then fall right back to sleep, once I change sides. Well, the last few nights, I haven't been able to just go right back to sleep. It's like a never ending nightmare.
Once I get into a, somewhat, comfortable position (in bed or in the wheelchair) if I move one inch, the pain is so excruciating that all I can do is yell out. It hurts to breathe in, talk or move. It came on so suddenly that I believe it could be related to the syrinx. That's normally how the SM symptoms present themselves, for me anyway. "All of a sudden a new symptom (or increase in existing symptoms) is there, no warning"!
I'll give it another day or so, if no better, I'll call the doctor's office and schedule an appointment. I'm just so sick of it all. It's a constant merry go round with SM symptoms, and with the doctors. When it gets this bad, I always say "I don't know how much more of this I can take". The bad part is that I am still having a problem with pain management, overall. So far, nothing has brought the pain level back down to the range between 5 - 7, so on top of this new type of pain, I'm still struggling with the pain level ranging between 7 - 9.
I know I can't give up and I will do whatever it takes to stay positive because I know that "this too shall pass". It's sad that all that really means is that I'll become adjusted to the level of pain I'm at. It's taking so long to get the pain under control that by the time the PM doctor gets it right, I'll have a new feeling of what level 10 feels like. I will survive by the Grace of GOD and lots of sleep.
I hope everyone has had a great weekend!
Wednesday, September 10, 2008
Today's Pain Management Visit
I have been having an extremely difficult time with pain management over the last few months. My doctor increased the Oxycontin by 10mg's last month to see if that would help. Mickey told him that it helped a little but that I was still suffering a lot. I said pretty much the same thing but he's accustomed to asking Mickey if that's what he sees happening. We've been with him a year so he knows Mickey wants to chime in anyway.
I told him that the 10mg helped a little but I really couldn't tell until I ran out of it. I only had 30 days but my appointment was after the 30 days. This gave me a chance to really see if it helped. As I said, it helped a little.
Thanks to Barbara, I then asked him about a neurostimulator vs a TENS unit. He said the neurostimulator went deeper into the nerve and stated that most insurance companies don't cover it, but he thought mine would. He will have the person he goes through get in touch with me but to be sure and ask about trying it out for a week, for free. This will give me a chance to see if it will really make a difference before he requests it through the insurance company.
I then explained that my pain has been ranging, throughout the day, from 7-9 when prior to the last few months we had it between 5-7. I asked him what other types of changes could be made. He wants me to try the neurostimulator but then he prescribed "Voltaren Gel". He said this is another medication that not many companies approve but that mine should. Regardless, he gave me several tubes of it to try for now, then told me to call the insurance and see if they will cover it. If I like it, of course.
I told him that the 10mg helped a little but I really couldn't tell until I ran out of it. I only had 30 days but my appointment was after the 30 days. This gave me a chance to really see if it helped. As I said, it helped a little.
Thanks to Barbara, I then asked him about a neurostimulator vs a TENS unit. He said the neurostimulator went deeper into the nerve and stated that most insurance companies don't cover it, but he thought mine would. He will have the person he goes through get in touch with me but to be sure and ask about trying it out for a week, for free. This will give me a chance to see if it will really make a difference before he requests it through the insurance company.
I then explained that my pain has been ranging, throughout the day, from 7-9 when prior to the last few months we had it between 5-7. I asked him what other types of changes could be made. He wants me to try the neurostimulator but then he prescribed "Voltaren Gel". He said this is another medication that not many companies approve but that mine should. Regardless, he gave me several tubes of it to try for now, then told me to call the insurance and see if they will cover it. If I like it, of course.
A Letter on Dealing with Chronic Pain
A while ago, a member of ASAP posted this letter. I thought it was worth adding to my blog, as a link from her blog to mine. Her link is now unavailable so I'm posting the letter directly.
Letter to people without chronic pain; tips on dealing with chronic pain folks
LETTER TO PEOPLE WITHOUT CHRONIC PAIN:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN**********************************
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.
5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.
6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
author unknown
Letter to people without chronic pain; tips on dealing with chronic pain folks
LETTER TO PEOPLE WITHOUT CHRONIC PAIN:
Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body. I still worry about school, my family, my friends, and most of the time - I'd still like to hear you talk about yours, too.
Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.
Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on ... it applies to everything. That's what chronic pain does to you.
Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it¨ may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctor and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder..." Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.
Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.
If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.
If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know that I have asked a lot from you, and I do thank you for listening. It really does mean a lot.
AUTHOR UNKNOWN**********************************
TIPS FOR DEALING WITH PEOPLE IN PAIN
1. People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
3. Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don't take it personally, or think that they are stupid.
4. The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.
5. Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.
6. Don't always ask "how are you" unless you are genuinely prepared to listen it just points attention inward.
7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.
12. We may not have a good "reason" for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized "disease". That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.
author unknown
A Few Interesting and Informative Links
If you haven't viewed the link on "A Syrinx Photo", you should. I have posted the link below so others can see what a syrinx looks like in the spine and learn some interesting facts regarding symptoms. Keep in mind that a syrinx can present in several different shapes as well.
http://neuromuscular.wustl.edu/spinal/syrinx.htm
Another interesting link relates to the do's and don'ts. Many ask the question of "What should or shouldn't I do?". The link is provided below.
I hope everyone is having a fabulous day!
http://neuromuscular.wustl.edu/spinal/syrinx.htm
Another interesting link relates to the do's and don'ts. Many ask the question of "What should or shouldn't I do?". The link is provided below.
http://www.pressenter.com/~wacma/bhm-list.htm
I hope everyone is having a fabulous day!
Sunday, September 7, 2008
Update
My days have been pretty regular lately, aside from the weakness which increases the tremors. I'm just taking one day at a time, as usual, and managing the best way I can.
I've adjusted to the new house and all the strange noises that occur only when you're home alone. LOL!
My daughter did visit for a short while yesterday in between getting new tires for her car. She'll probably come to visit in a few weeks and stay the weekend.
Please keep Kira in your thoughts and prayers. She has been struggling with loss of sleep and extreme pain in her thigh.
Take care and have a terrific weekend!
I've adjusted to the new house and all the strange noises that occur only when you're home alone. LOL!
My daughter did visit for a short while yesterday in between getting new tires for her car. She'll probably come to visit in a few weeks and stay the weekend.
Please keep Kira in your thoughts and prayers. She has been struggling with loss of sleep and extreme pain in her thigh.
Take care and have a terrific weekend!
Monday, September 1, 2008
Weekend Holiday Fun
My holiday fun started on Saturday with a visit from my friend Hanh. It was an unexpected visit, but very welcomed. I was having one of the worse days possible when all of a sudden Hanh comes up to the door with a smiling face and flowers in hand. I probably talked her ears off but it was just great to see her during a day that started out very bad for me. I continuously used the icepack and TENS unit, throughout the day.
Hanh was very sweet in offering (ok, I nudged a little) to help out with the cleaning for the holiday party on Sunday. She did a terrific job in cleaning the kitchen and it was greatly appreciated. Unfortunately, she didn't make it over for the party, regardless I was thrilled to see her and happy to have something to focus on, besides the pain I was struggling through.
Sunday my son planned a holiday party and it turned out really nice. I had a lot of fun, once the horrible headache I had, calmed down. I was very sad most of the day thinking I wouldn't be able to attend the party, although it took time, I eventually attended for a little while. I chatted with everyone and was introduced with those I had not met before. Alcohol was served but I do not mix alcohol with my meds. It could be very dangerous for me and I'm not willing to jeopardize my life, so I had none. My feet were numb most of the day as well. This was new for me. I've had numbness on my leg and thigh, on the right side only. However, both feet were numb when I woke up Sunday morning.
My daughter came to visit and attend the party. She helped me (pretty much, I told her what to do) with the spaghetti and sauce, and Mickey helped me boil the ribs before he put them on the grill. Thank goodness I only had a few food items to attend to. One of the guys cooked the other items, boiled and grilled the chicken, while Mickey grilled everything else. I was taught as a pre-teen to boil chicken and ribs before grilling. Both can take forever to grill and have the tendency to be dry because they take so long to grill before they are done. By boiling them first, you limit the grilling time and the meat doesn't dry out. The other cook wasn't sure about the idea of boiling the chicken first, however, during the grilling process he mentioned that it was a terrific idea and that he'll be boiling his meats before grilling from now on.
The food, music and company was wonderful and the party lasted until approximately 10PM. I had planned to be in bed around 8PM but Cindy came to visit so I stayed up to enjoy company time with her. She made pink panties for the remaining folks and everyone commented on how good they were. Around 9:30 or so, I couldn't take anymore and told Cindy I was done for the night. Then I couldn't get to sleep until around midnight or so.
Of course, I used the TENS unit and icepack throughout the day. So far today has been the same with pain and other symptoms. The numbness still exists in my feet but not nearly as numb as they were on Saturday when I woke up and for most of that day. I'm still using the TENS unit and the icepack today. I use the TENS unit on a very low setting so that it basically feels like a light massage. I slept a lot up until around noon and I'll rest a lot as well, but I wouldn't trade a moment of fun time I had the entire weekend.
Between my daughter, Hanh and Cindy, I didn't have much time to focus on the pain or to be depressed. It was great and I am thankful to have had this special weekend.
I hope everyone is having a wonderful Labor Day!!
Hanh was very sweet in offering (ok, I nudged a little) to help out with the cleaning for the holiday party on Sunday. She did a terrific job in cleaning the kitchen and it was greatly appreciated. Unfortunately, she didn't make it over for the party, regardless I was thrilled to see her and happy to have something to focus on, besides the pain I was struggling through.
Sunday my son planned a holiday party and it turned out really nice. I had a lot of fun, once the horrible headache I had, calmed down. I was very sad most of the day thinking I wouldn't be able to attend the party, although it took time, I eventually attended for a little while. I chatted with everyone and was introduced with those I had not met before. Alcohol was served but I do not mix alcohol with my meds. It could be very dangerous for me and I'm not willing to jeopardize my life, so I had none. My feet were numb most of the day as well. This was new for me. I've had numbness on my leg and thigh, on the right side only. However, both feet were numb when I woke up Sunday morning.
My daughter came to visit and attend the party. She helped me (pretty much, I told her what to do) with the spaghetti and sauce, and Mickey helped me boil the ribs before he put them on the grill. Thank goodness I only had a few food items to attend to. One of the guys cooked the other items, boiled and grilled the chicken, while Mickey grilled everything else. I was taught as a pre-teen to boil chicken and ribs before grilling. Both can take forever to grill and have the tendency to be dry because they take so long to grill before they are done. By boiling them first, you limit the grilling time and the meat doesn't dry out. The other cook wasn't sure about the idea of boiling the chicken first, however, during the grilling process he mentioned that it was a terrific idea and that he'll be boiling his meats before grilling from now on.
The food, music and company was wonderful and the party lasted until approximately 10PM. I had planned to be in bed around 8PM but Cindy came to visit so I stayed up to enjoy company time with her. She made pink panties for the remaining folks and everyone commented on how good they were. Around 9:30 or so, I couldn't take anymore and told Cindy I was done for the night. Then I couldn't get to sleep until around midnight or so.
Of course, I used the TENS unit and icepack throughout the day. So far today has been the same with pain and other symptoms. The numbness still exists in my feet but not nearly as numb as they were on Saturday when I woke up and for most of that day. I'm still using the TENS unit and the icepack today. I use the TENS unit on a very low setting so that it basically feels like a light massage. I slept a lot up until around noon and I'll rest a lot as well, but I wouldn't trade a moment of fun time I had the entire weekend.
Between my daughter, Hanh and Cindy, I didn't have much time to focus on the pain or to be depressed. It was great and I am thankful to have had this special weekend.
I hope everyone is having a wonderful Labor Day!!
Saturday, August 30, 2008
Update
I appeared to be getting a little relief from the 10mg increase of Oxycontin. I only got 30 days which ran out recently. I realize that although I didn't really think the increase was helping, it really was. The pain I've had over the last few days is back to excruciating. I can't take this kind of pain on a regular basis. Unfortunately, I no longer have any dilaudid to take during increased periods of pain. I ran out of that really early in the month. It did last a very long time because I only took it when absolutely necessary.
Without the 10mg Oxycontin, and no dilaudid, I have been forced to do whatever it takes to bring the pain down. I have used the icepack, as always, and will use another one soon. I am using the TENS unit frequently, throughout the day and I had to take an additional 20mg's of Oxycontin since I don't have anymore 10's. Of course, I took it at the same time of the scheduled 10mg dose and I was thrilled to finally get some relief. I hate the feeling of being in so much pain that you don't know what to do with yourself. You hurt so bad that you don't know whether to sit, prop against pillows, or lay down.
The increase also causes a loss of sleep. I couldn't get to sleep until early in the morning and even then, I tossed and turned from the burning, stabbing pain in my hips and back. I usually try to go to bed as late as possible so I don't have to deal with the painful, spinal sensations that occur when I lay down. However, I only toss and turn during the worse periods of increased pain. Unfortunately, it always brings back the horrible hip pain.
A new symptom, (or maybe an increase in an existing symptom) I've been experiencing, and I'll speak to my doctor about it, is very painful muscle twitches in my legs. I felt it a little bit in my arms, but an overwhelming amount in my legs. It happens continuously throughout the day, over the last few weeks.
I'll see what my doctor has to say but I think it's just an increase in the spasticity symptom, only it feels more like a "charlie horse", if anyone has every experienced a charlie horse, you know what I'm talking about. However, a charlie horse happens every once in a while. The feeling I'm experiencing is happening throughout the day.
I hope everyone is enjoying the wonderful 3-day, holiday weekend!
Without the 10mg Oxycontin, and no dilaudid, I have been forced to do whatever it takes to bring the pain down. I have used the icepack, as always, and will use another one soon. I am using the TENS unit frequently, throughout the day and I had to take an additional 20mg's of Oxycontin since I don't have anymore 10's. Of course, I took it at the same time of the scheduled 10mg dose and I was thrilled to finally get some relief. I hate the feeling of being in so much pain that you don't know what to do with yourself. You hurt so bad that you don't know whether to sit, prop against pillows, or lay down.
The increase also causes a loss of sleep. I couldn't get to sleep until early in the morning and even then, I tossed and turned from the burning, stabbing pain in my hips and back. I usually try to go to bed as late as possible so I don't have to deal with the painful, spinal sensations that occur when I lay down. However, I only toss and turn during the worse periods of increased pain. Unfortunately, it always brings back the horrible hip pain.
A new symptom, (or maybe an increase in an existing symptom) I've been experiencing, and I'll speak to my doctor about it, is very painful muscle twitches in my legs. I felt it a little bit in my arms, but an overwhelming amount in my legs. It happens continuously throughout the day, over the last few weeks.
I'll see what my doctor has to say but I think it's just an increase in the spasticity symptom, only it feels more like a "charlie horse", if anyone has every experienced a charlie horse, you know what I'm talking about. However, a charlie horse happens every once in a while. The feeling I'm experiencing is happening throughout the day.
I hope everyone is enjoying the wonderful 3-day, holiday weekend!
Thursday, August 28, 2008
When Someone Ask: How Are You Doing?
It's funny that I use to go into detail on "how I'm doing?". From the time we're old enough to talk, we learn to tell of how we're actually doing. If we're sick, we say so and go into detail on what's wrong and how we feel. If we're having a good day, we do the same. If we have exciting news, we share our excitement with others. That's just the way people, including myself, have communicated over time, for many years.
I didn't realize it initially but I've found myself simply responded with "I'm managing". It's so much easier than going into detail whenever someone asks me how I'm doing. If they want details, I'll tell more. It seems that, for now, this will be my usual response. I'm taking the path of least resistance and it works. I usually don't have to go into detail and, honestly speaking, I'd rather not. It's too depressing to actually say the words, I'd rather just write about it in my blog.
Take care and I hope everyone has a very "FUN" and "EXCITING" holiday weekend!
I didn't realize it initially but I've found myself simply responded with "I'm managing". It's so much easier than going into detail whenever someone asks me how I'm doing. If they want details, I'll tell more. It seems that, for now, this will be my usual response. I'm taking the path of least resistance and it works. I usually don't have to go into detail and, honestly speaking, I'd rather not. It's too depressing to actually say the words, I'd rather just write about it in my blog.
Take care and I hope everyone has a very "FUN" and "EXCITING" holiday weekend!
My life with Syringomyelia aka: SM: Troubles At Home
Mickey and I have talked in depth about the comment he made. He has assured me that it didn't come out the way he intended. He did not mean that I was bugging him. He does not want me to do things I shouldn't be doing. He would rather me call on him and it is truly, no problem at all. He helps me because he loves me and he wants to do whatever he can to make things easier for me.
As Barbara mentioned in her comment, all that he has done over the last two years, tells her that he didn't mean what he said. My MIL said that he just had so much on his mind and was so busy with the move that he was under a lot of stress. My friend NL pretty much said the same thing. She sees all that Mickey does and how he reacts during bad situations (me screaming and crying from the pain) and simply said that he was just under a lot of pressure with the move and everything else going on.
As I said, we talked and I understand that at the present time he was really busy. It's no excuse but I believe that the words did not come out as he intended. We're fine and back to life as usual.
As Barbara mentioned in her comment, all that he has done over the last two years, tells her that he didn't mean what he said. My MIL said that he just had so much on his mind and was so busy with the move that he was under a lot of stress. My friend NL pretty much said the same thing. She sees all that Mickey does and how he reacts during bad situations (me screaming and crying from the pain) and simply said that he was just under a lot of pressure with the move and everything else going on.
As I said, we talked and I understand that at the present time he was really busy. It's no excuse but I believe that the words did not come out as he intended. We're fine and back to life as usual.
Saturday, August 23, 2008
Alone Again
It felt great to have my MIL here to keep me company throughout the day. She left today and it's been a very sad day for me. I'm faced with the reality of being alone again, throughout the day, while everyone else is either at work, or school. I will miss my MIL so much. I ran out of ointment for my back a week ago, but I'll still miss having someone around to take time to rub down my back in the day time.
She filled my day with someone to communicate with, knowing someone was always here if I needed help, having someone to talk my depression phases out with, someone to laugh with, and so much more. In more ways than she'll ever know, she helped me to keep the pain at bay, when I could, or learn to manage it when I couldn't. Having someone here forced me to smile, rather than cry. I had a few moments of crying, but overall, I felt I had to keep my strength and spirit up so she wouldn't worry about me. Having her here was very therapeutic for me.
I'll miss all that she offered in the way. It's harder trying not to cry, when you're alone. There's no one here until later in the evening, so I don't have to be strong. I can just let go. I'd rather not because I personally feel so much better when I hide the suffering I'm experiencing from the pain, as strange as that might sound. The old saying, there's strength in numbers, might be a good example.
I hope everyone is having a Terrific weekend!
She filled my day with someone to communicate with, knowing someone was always here if I needed help, having someone to talk my depression phases out with, someone to laugh with, and so much more. In more ways than she'll ever know, she helped me to keep the pain at bay, when I could, or learn to manage it when I couldn't. Having someone here forced me to smile, rather than cry. I had a few moments of crying, but overall, I felt I had to keep my strength and spirit up so she wouldn't worry about me. Having her here was very therapeutic for me.
I'll miss all that she offered in the way. It's harder trying not to cry, when you're alone. There's no one here until later in the evening, so I don't have to be strong. I can just let go. I'd rather not because I personally feel so much better when I hide the suffering I'm experiencing from the pain, as strange as that might sound. The old saying, there's strength in numbers, might be a good example.
I hope everyone is having a Terrific weekend!
Thursday, August 21, 2008
My Mother-In-Law (MIL)
My MIL came to visit for a month. She's been here since July 26th. It's been a true blessing having her here at this time in our lives. She had no idea we were in the process of a move. She jumped right in and helped with packing and unpacking. She unpacked everything and organized the entire kitchen.
She continues to let me know that she's here to help out every time I tell her she's doing too much and she needs to rest. Her presence has been welcomed and appreciated by every person in this household, especially me. My granddaughter gets a cooked breakfast on the mornings she doesn't want cereal. We have had hot, home cooked meals. She's shopped, cleaned, cooked, kept me company, rubbed my back when I needed it most, and has done whatever she could to help out.
She's at the end of her stay, she leaves on Saturday and I, for one, will miss her terribly. She has done the most for me without really knowing it and just by being here. My daily routine was moving from the chair, to the bed, propping against pillows and back to the chair again. Over the last month, I have been up and about the house almost everyday. There have been days I didn't dare get out of bed for any reason, other than the bathroom.
It's been extremely hard to be up and be in excruciating pain throughout the day. I've been use to putting on a smile every evening when my family returns home from work. I smile no matter how bad the pain is. In my book, no one wants to be around someone who frowns from pain, day in and out. It gets old, real fast and I refuse to be a burden to everyone knowing that this is a lifetime disorder. I also have learned to smile during the weekend when everyone is home. If I'm not able to smile, I sleep instead to keep from crying. There's only so much pain you can take in a day before your body becomes more exhausted than you can handle.
I tried hard to keep from sleeping so much in order to avoid the pain. Instead, I just dealt with it, plus the doctor did give a 10mg increase in Oxycontin when I told him my pain has increased from being up so much.
I wanted my MIL to have a wonderful trip; I wanted this time to be a relaxing vacation for her as I would want for my own mother, if she were alive. My MIL has her own problems without being burdened down with mine. It's bad enough that I cried on her shoulder during my few days of depression. I admit, it was nice to have someone here to talk to so I could release the tears and keep the depression at bay. There are times when the depression starts and then escalates real fast, because I have no one to talk to. Having her here to talk to was a blessing of it's own.
As I said, her presence has been a life saver for me. It's gotten harder to be up over the last few days so I've been doing chores. Of course I know I'll pay dearly with an increase in pain and other symptoms, but it keeps me up so my MIL doesn't feel like she's alone in this house. It's true that I might have gone through the extra pain for nothing, because she could have wanted to be alone. It might have been good on my part to find out if she wanted company throughout the day, but it's too late now. Besides, I enjoyed the company and I have let her know as much as I can, and I didn't want her to have to worry about me during her vacation. She's getting up in age and having to worry about me could add extra stress on her. She would want to do something, not knowing or understanding that there's really nothing more that can be done. Going to the ER is a joke and I see my doctors regularly, that's as good as it gets with SM.
She was a much needed blessing. I needed to know that I can manage, no matter what, being up most of the day. It's not something I will continue doing because the truth is that I'm a wimp when it comes to pain. I'm smiling on the outside and screaming from the burning pain, on the inside. I like keeping the pain at a manageable level. However, it was truly great having someone here with me for a short while. I have spent the last two years alone and I guess it was worth the increase in pain to not be alone.
She continues to let me know that she's here to help out every time I tell her she's doing too much and she needs to rest. Her presence has been welcomed and appreciated by every person in this household, especially me. My granddaughter gets a cooked breakfast on the mornings she doesn't want cereal. We have had hot, home cooked meals. She's shopped, cleaned, cooked, kept me company, rubbed my back when I needed it most, and has done whatever she could to help out.
She's at the end of her stay, she leaves on Saturday and I, for one, will miss her terribly. She has done the most for me without really knowing it and just by being here. My daily routine was moving from the chair, to the bed, propping against pillows and back to the chair again. Over the last month, I have been up and about the house almost everyday. There have been days I didn't dare get out of bed for any reason, other than the bathroom.
It's been extremely hard to be up and be in excruciating pain throughout the day. I've been use to putting on a smile every evening when my family returns home from work. I smile no matter how bad the pain is. In my book, no one wants to be around someone who frowns from pain, day in and out. It gets old, real fast and I refuse to be a burden to everyone knowing that this is a lifetime disorder. I also have learned to smile during the weekend when everyone is home. If I'm not able to smile, I sleep instead to keep from crying. There's only so much pain you can take in a day before your body becomes more exhausted than you can handle.
I tried hard to keep from sleeping so much in order to avoid the pain. Instead, I just dealt with it, plus the doctor did give a 10mg increase in Oxycontin when I told him my pain has increased from being up so much.
I wanted my MIL to have a wonderful trip; I wanted this time to be a relaxing vacation for her as I would want for my own mother, if she were alive. My MIL has her own problems without being burdened down with mine. It's bad enough that I cried on her shoulder during my few days of depression. I admit, it was nice to have someone here to talk to so I could release the tears and keep the depression at bay. There are times when the depression starts and then escalates real fast, because I have no one to talk to. Having her here to talk to was a blessing of it's own.
As I said, her presence has been a life saver for me. It's gotten harder to be up over the last few days so I've been doing chores. Of course I know I'll pay dearly with an increase in pain and other symptoms, but it keeps me up so my MIL doesn't feel like she's alone in this house. It's true that I might have gone through the extra pain for nothing, because she could have wanted to be alone. It might have been good on my part to find out if she wanted company throughout the day, but it's too late now. Besides, I enjoyed the company and I have let her know as much as I can, and I didn't want her to have to worry about me during her vacation. She's getting up in age and having to worry about me could add extra stress on her. She would want to do something, not knowing or understanding that there's really nothing more that can be done. Going to the ER is a joke and I see my doctors regularly, that's as good as it gets with SM.
She was a much needed blessing. I needed to know that I can manage, no matter what, being up most of the day. It's not something I will continue doing because the truth is that I'm a wimp when it comes to pain. I'm smiling on the outside and screaming from the burning pain, on the inside. I like keeping the pain at a manageable level. However, it was truly great having someone here with me for a short while. I have spent the last two years alone and I guess it was worth the increase in pain to not be alone.
Great Times!!
My long-time friend CT, came by two nights this week. A friend after my own heart, she bought me a caramel macchiato each time. She even remembered how I like it.
It was great to spend time with a friend and catch up on new business. I was in excruciating pain and it gave me a chance to totally escape from it all. Is the pain gone? Absolutely not!! However, when you sit around with nothing to do but think and breathe pain, you're constantly reminded of it. When you sit around with a friend or doing something fun, you just escape outside of the usual for a while.
If I have to sit in pain anyway, I'd rather be in pain visiting with a friend, doing something fun with my family, or watching a comedy. It's worse to just sit there in pain with nothing to take your mind away from it all. Those visits were very refreshing, welcomed and definitely needed.
Thank GOD for ANY and ALL distractions from the pain.
I hope everyone is having a pleasant day!
It was great to spend time with a friend and catch up on new business. I was in excruciating pain and it gave me a chance to totally escape from it all. Is the pain gone? Absolutely not!! However, when you sit around with nothing to do but think and breathe pain, you're constantly reminded of it. When you sit around with a friend or doing something fun, you just escape outside of the usual for a while.
If I have to sit in pain anyway, I'd rather be in pain visiting with a friend, doing something fun with my family, or watching a comedy. It's worse to just sit there in pain with nothing to take your mind away from it all. Those visits were very refreshing, welcomed and definitely needed.
Thank GOD for ANY and ALL distractions from the pain.
I hope everyone is having a pleasant day!
Wednesday, August 13, 2008
Update
This pain is still kicking my butt. The 10mg increase in Oxycontin really didn't do all that much, as far as providing any significant relief. However, life does go on and so shall I, no matter how much I hate living like this. It's the way it is and I'm not sure myself how I survive each day but by the Grace of GOD.
I sleep a lot to keep from dealing with the pain and to keep from being depressed. I take several naps throughout the day. I have a hard time sleeping at night for two reasons. I can't fall asleep with the strange and, sometimes, painful spinal sensations so I make sure I am dead tired to ensure I fall asleep fast. Also, I'm sure that it doesn't help with the night sleep, with me taking naps all day.
Mickey and I did have a talk but nothing was resolved, regarding the hurtful words he spoke. He only said he didn't say them. Regardless, we are back to our normal relationship. After 26 years, we go through periods of having arguments, some serious and some not so serious, and then we get over it and move on. That's pretty much the way it's been and it's probably why we are still together. We accept our disagreements and/or differences and then move on. Sometimes, it may take more time to move on, than other times.
I hope everyone is having a great day!
I sleep a lot to keep from dealing with the pain and to keep from being depressed. I take several naps throughout the day. I have a hard time sleeping at night for two reasons. I can't fall asleep with the strange and, sometimes, painful spinal sensations so I make sure I am dead tired to ensure I fall asleep fast. Also, I'm sure that it doesn't help with the night sleep, with me taking naps all day.
Mickey and I did have a talk but nothing was resolved, regarding the hurtful words he spoke. He only said he didn't say them. Regardless, we are back to our normal relationship. After 26 years, we go through periods of having arguments, some serious and some not so serious, and then we get over it and move on. That's pretty much the way it's been and it's probably why we are still together. We accept our disagreements and/or differences and then move on. Sometimes, it may take more time to move on, than other times.
I hope everyone is having a great day!
Saturday, August 9, 2008
Troubles At Home
I know I have to keep going but to tell you the truth, I really don't want to. I'm so tired of living like this and being such a burden to my husband. He actually told my MIL that I'm always bugging him. Mind you, whenever I do things, he always says, don't do that or I told you to call me before you do things. It hurts to know that he really didn't mean any of that. It hurts to know that all along, the times I have called on him, he was truly feeling like I was bugging him.
I have no way to get around and no place else to go. My parents are deceased so I basically feel like I'm stuck in a situation where I can't take the best care of myself but I have no one else to count on either. My son can only do so much too, he's not here most of the day. To be honest, I rarely call on Mickey unless it's something I really can't do. I don't understand where the comment came from. He spends his evenings, after work, in the living room and I'm in the bedroom all day. Once he takes care of me in the morning, before work, I don't see him again until bedtime. No one can imagine how hurtful it is to hear the person you love and depend on, say that you're bugging him/her, especially under the circumstances.
Now, I can't even call on him when I really need him. It really sucks that I have to wait until my son is around or call my friend to help me. It hurts more, I guess, because I always ask him if he minds and he says no problem. So, basically, I'm damned whether I call on him or not. He's mad when I don't call him, and apparently, he's mad when I call him. If I had someone else to live with, I would. When Medicaid kicks in I will definitely ask about an assisted living facility. I can't stand knowing that I have to grind through the pain and do things regardless of how I feel, or how it will make me feel. I shouldn't have to live like this. I'll keep saying, I'm truly hurt over this until I feel better about the situation, I guess. I had no idea he felt this way. None at all, especially when he makes comments to suggest the opposite. It's confusing, to say the least.
I'll keep pushing on here, because I have no place else to go. Honestly, now I am just ready to bail out. I struggle through the worst of times, the pain and suffering, the debilitating symptoms because of my family. I never wanted to be a burden to any of them so it kind of defeats the purpose of pushing on.
I have no way to get around and no place else to go. My parents are deceased so I basically feel like I'm stuck in a situation where I can't take the best care of myself but I have no one else to count on either. My son can only do so much too, he's not here most of the day. To be honest, I rarely call on Mickey unless it's something I really can't do. I don't understand where the comment came from. He spends his evenings, after work, in the living room and I'm in the bedroom all day. Once he takes care of me in the morning, before work, I don't see him again until bedtime. No one can imagine how hurtful it is to hear the person you love and depend on, say that you're bugging him/her, especially under the circumstances.
Now, I can't even call on him when I really need him. It really sucks that I have to wait until my son is around or call my friend to help me. It hurts more, I guess, because I always ask him if he minds and he says no problem. So, basically, I'm damned whether I call on him or not. He's mad when I don't call him, and apparently, he's mad when I call him. If I had someone else to live with, I would. When Medicaid kicks in I will definitely ask about an assisted living facility. I can't stand knowing that I have to grind through the pain and do things regardless of how I feel, or how it will make me feel. I shouldn't have to live like this. I'll keep saying, I'm truly hurt over this until I feel better about the situation, I guess. I had no idea he felt this way. None at all, especially when he makes comments to suggest the opposite. It's confusing, to say the least.
I'll keep pushing on here, because I have no place else to go. Honestly, now I am just ready to bail out. I struggle through the worst of times, the pain and suffering, the debilitating symptoms because of my family. I never wanted to be a burden to any of them so it kind of defeats the purpose of pushing on.
So Far, No Good
The increase in Oxycontin really hasn't helped all that much. If anything, there is a small change but nothing to put a dent in this pain and get it back to a manageable level. I was barely managing at 5-7, if I can get back to that level, I'll be better off.
I am doing more now. I spent most of my days trying to keep the pain at bay by rotating positions from bed, chair and propping on pillows. For the past 2 weeks, I've been up almost the entire day and doing little things. Today I'm actually washing 3 loads of clothes. Well, 2 loads of linens and 1 load of clothes. It's rough, but I had the ice pack on my back (in the chair) for the first load.
I also have the little ones to look after. They are a hand full but I love them enough to make the sacrifice. Meal time is the worse. There's so much reaching that there's a constant tight, pulling sensation in my spine now. It hurts like hell and the tightness bothers me.
Mickey placed the ramps around the stairs so I can get out to the front yard. This way, I can go out with the kids and keep a better eye on them. I'm praying the entire time that neither one gets hurt.
I hope everyone has a great weekend!
I am doing more now. I spent most of my days trying to keep the pain at bay by rotating positions from bed, chair and propping on pillows. For the past 2 weeks, I've been up almost the entire day and doing little things. Today I'm actually washing 3 loads of clothes. Well, 2 loads of linens and 1 load of clothes. It's rough, but I had the ice pack on my back (in the chair) for the first load.
I also have the little ones to look after. They are a hand full but I love them enough to make the sacrifice. Meal time is the worse. There's so much reaching that there's a constant tight, pulling sensation in my spine now. It hurts like hell and the tightness bothers me.
Mickey placed the ramps around the stairs so I can get out to the front yard. This way, I can go out with the kids and keep a better eye on them. I'm praying the entire time that neither one gets hurt.
I hope everyone has a great weekend!
Wednesday, August 6, 2008
The New House
Well, we're working through all the kinks of new plumbing, electrical issues, bad cable signals, etc. It's been interesting, since Friday, to say the least.
Thank GOD my MIL is here with us. Since she's here, I'm staying up more during the day. This is what the pain management doctor wanted and now I have a reason to be up. I have someone to talk to (or just be here with me during the day) so I really haven't been suffering with depression at all lately.
My wheelchair can fit comfortably in all the rooms, even the bathrooms. I would constantly fall trying to walk to the bathroom at the other house. I had the bedside commode but really only used it when the tremors were uncontrollable. The only exercise I would get was my walks to the bathroom. I ignored the safety risk to feel normal for a bit.
I have the most magnificent view from my front porch and there's always a breeze. It's up on a hill, I guess that accounts for the breeze. At night, it's absolutely amazing. I could sit out on the porch until sunrise if I knew I didn't have to pay for it later.
The kitchen is spacious with lots of cabinets. My breakfast nook fit in perfect, with a view. We could go all day (until the sun falls) without turning on the lights because there's so much sunlight in every room.
I love it here. It really was a good move.
Thank GOD my MIL is here with us. Since she's here, I'm staying up more during the day. This is what the pain management doctor wanted and now I have a reason to be up. I have someone to talk to (or just be here with me during the day) so I really haven't been suffering with depression at all lately.
My wheelchair can fit comfortably in all the rooms, even the bathrooms. I would constantly fall trying to walk to the bathroom at the other house. I had the bedside commode but really only used it when the tremors were uncontrollable. The only exercise I would get was my walks to the bathroom. I ignored the safety risk to feel normal for a bit.
I have the most magnificent view from my front porch and there's always a breeze. It's up on a hill, I guess that accounts for the breeze. At night, it's absolutely amazing. I could sit out on the porch until sunrise if I knew I didn't have to pay for it later.
The kitchen is spacious with lots of cabinets. My breakfast nook fit in perfect, with a view. We could go all day (until the sun falls) without turning on the lights because there's so much sunlight in every room.
I love it here. It really was a good move.
Dr. Appointments
Yesterday, I had my follow-up appointment and hearing test with the ENT doctor. Everything is fine. He checked again for the infection and it's all clear. I have hearing loss but he wants me to use increased volume on everything. Even asking people to speak one at a time, clearly and/or louder.
Today, I had my monthly appointment with the pain management doctor. I told him I can no longer manage the pain since it has increased in intensity and burns a lot. I stated that the pain has gone from 5-7 daily (it changes throughout the day), to ranging from 7-9 daily. This has been happening for the past few weeks and I can't take it anymore. He added another 10mg of Oxycontin per day. He told us to fill the prescription today and take one right away. Starting tomorrow, I add 10mg in with my 11:00AM medications. My pain level was at an 8 while we were there. Less than 10 minutes out the door, the pain had jumped to a 9.
We'll see how it goes. So far, no change but it's only the first pill.
I hope everyone is having a terrific day!
Today, I had my monthly appointment with the pain management doctor. I told him I can no longer manage the pain since it has increased in intensity and burns a lot. I stated that the pain has gone from 5-7 daily (it changes throughout the day), to ranging from 7-9 daily. This has been happening for the past few weeks and I can't take it anymore. He added another 10mg of Oxycontin per day. He told us to fill the prescription today and take one right away. Starting tomorrow, I add 10mg in with my 11:00AM medications. My pain level was at an 8 while we were there. Less than 10 minutes out the door, the pain had jumped to a 9.
We'll see how it goes. So far, no change but it's only the first pill.
I hope everyone is having a terrific day!
Tuesday, August 5, 2008
Frustration
Everything is happening all at once. I can't stand how I'm feeling these days. I wear a smile whenever I can because I try to remember that there's someone in the world who has it worse than I do. However, I'm having a very hard time trying to adjust to this new level of pain.
I've been up and about the house, since Friday because of the move. I've been sitting in my wheelchair for longer periods of time than I ever have. I end up rushing off to my bedroom, sometimes on the verge of tears but most times in tears.
This burning feeling that has been relieved since I started the Lyrica, last year, is now up and roaring throughout my spine. Nothing I'm doing is taking it away or even decreasing it back to the level is was previously. All I know, is that I can't take it anymore. I feel like at any minute I could just break out and start screaming. The top in the shoulder area, the middle and the lower back are all screaming from the burning, at the same time. It's too much.
I'm having a difficult time controlling the tremors in my right hand. I guess because I'm up more, I'm using the hand more and it's caused an increase in the tremor. I'm being awaken in the middle of the night, more and more, each night. I keep getting the feeling of water being spilled on different areas on my extremities, throughout the day.
The numbness is more prominent and hasn't gone away this time. I'm trying my very best to hang in there. I see the pain management doctor tomorrow and I need to call and schedule an appointment with the neurologist so he can put in a referral for my MRI this month.
The nausea is another thing that's making it hard to manage. The more symptoms that are present at one time, the harder it is to manage.
I can't take much more but I'm reminded that other's do have it much worse than I do. Which in turn keeps me in the frame of mind to "just deal with it". I think the worse part is that no one knows how hard this is for me. It's amazing the I find myself apologizing if other's do happen to see me cry. It's not fair for me to impose this on my loved ones. It's a disorder, with progressive symptoms, that I have, not them. This is another thought that runs through my mind.
I hope everyone is having a great day.
I've been up and about the house, since Friday because of the move. I've been sitting in my wheelchair for longer periods of time than I ever have. I end up rushing off to my bedroom, sometimes on the verge of tears but most times in tears.
This burning feeling that has been relieved since I started the Lyrica, last year, is now up and roaring throughout my spine. Nothing I'm doing is taking it away or even decreasing it back to the level is was previously. All I know, is that I can't take it anymore. I feel like at any minute I could just break out and start screaming. The top in the shoulder area, the middle and the lower back are all screaming from the burning, at the same time. It's too much.
I'm having a difficult time controlling the tremors in my right hand. I guess because I'm up more, I'm using the hand more and it's caused an increase in the tremor. I'm being awaken in the middle of the night, more and more, each night. I keep getting the feeling of water being spilled on different areas on my extremities, throughout the day.
The numbness is more prominent and hasn't gone away this time. I'm trying my very best to hang in there. I see the pain management doctor tomorrow and I need to call and schedule an appointment with the neurologist so he can put in a referral for my MRI this month.
The nausea is another thing that's making it hard to manage. The more symptoms that are present at one time, the harder it is to manage.
I can't take much more but I'm reminded that other's do have it much worse than I do. Which in turn keeps me in the frame of mind to "just deal with it". I think the worse part is that no one knows how hard this is for me. It's amazing the I find myself apologizing if other's do happen to see me cry. It's not fair for me to impose this on my loved ones. It's a disorder, with progressive symptoms, that I have, not them. This is another thought that runs through my mind.
I hope everyone is having a great day.
Sunday, August 3, 2008
Update
I haven't been on in a while due to moving to a different location in the same city. I'm now connected again. What did we ever do before the Internet?!?
I've been experiencing intermittent spikes of intense, burning pain (it's been up to 8 and 9). The right-sided facial and leg numbness went away for a few days, but it returned Saturday. It's hard to keep a smile on my face and try not to invade everyone else's life with my illness. I have to remember that it is my illness, and this keeps me from burdening everyone around me. No matter how hard it is, it's important to me, that I don't impose too much on others. I have to remember that the less I depend on those around me, the better off our relationships will be in the end.
Don't get me wrong, when I really, really need help, I ask my loved ones. However, I try to do things myself, first. I'm only 45 but with a chronic, progressive illness, I know I'll get worse before I get better. If I burden my loved ones too much, they may not be around when I'm not able to do anything for myself. I'm not too far from there now (between the pain, tremors and other symptoms), but I'm not there yet. I do too much reaching and bending, all the time. Yes, I have a reacher and I need to remember to carry it with me, always. I'm getting there, slowly but surely. It's the reaching and bending that does the most damage.
My mother-in-law (MIL) is visiting now, for a month. It's been a while since she visited us last. We're always very happy to see her and have her visit. She has been very helpful during the move. I say, she's doing way too much. It does make me feel even worse that, at my age, I can't help out. Having her here has been a blessing but I have let her know that she's doing too much. She didn't come here to work, she came to relax and vacation.
She's also very helpful for me. I've had no one to rub my back down and she does. It's great and it helps for a while. Anything to help with the pain is a blessing. I have been up more in the last few days than I've probably been up the entire time I've been sick. I can tell too, my back is constantly on fire. I cry, sit on the porch, get on the computer, put on an icepack, talk on the phone or whatever it takes to help. The meds only do so much. My doctor says it's up to me to find ways to keep the pain level from 5 - 7 (with spikes of 8 - 9 out of 10) under control.
My friend, NL, came to help out on Saturday. With no hot water yet and no boxes in the house (yet) to unpack, there wasn't a whole lot she could do. She definitely helped out as much as she could though and it was a blessing. Unfortunately, my pain spiked up to around level 9 (burning, intense pain) and I had to hurry up and get to the bed while my MIL rubbed ointment on my back. I took Dilaudid (which I ended up taking the last one) and my normal meds to try to bring the pain down. I fell asleep rather quickly. Being up so long the past few days, I was depending on the Dilaudid to help with the increase in pain. Now, I have no choice but to follow the signs my body gives me when it's time to sleep, or rest.
I hope everyone had a fabulous weekend!
I've been experiencing intermittent spikes of intense, burning pain (it's been up to 8 and 9). The right-sided facial and leg numbness went away for a few days, but it returned Saturday. It's hard to keep a smile on my face and try not to invade everyone else's life with my illness. I have to remember that it is my illness, and this keeps me from burdening everyone around me. No matter how hard it is, it's important to me, that I don't impose too much on others. I have to remember that the less I depend on those around me, the better off our relationships will be in the end.
Don't get me wrong, when I really, really need help, I ask my loved ones. However, I try to do things myself, first. I'm only 45 but with a chronic, progressive illness, I know I'll get worse before I get better. If I burden my loved ones too much, they may not be around when I'm not able to do anything for myself. I'm not too far from there now (between the pain, tremors and other symptoms), but I'm not there yet. I do too much reaching and bending, all the time. Yes, I have a reacher and I need to remember to carry it with me, always. I'm getting there, slowly but surely. It's the reaching and bending that does the most damage.
My mother-in-law (MIL) is visiting now, for a month. It's been a while since she visited us last. We're always very happy to see her and have her visit. She has been very helpful during the move. I say, she's doing way too much. It does make me feel even worse that, at my age, I can't help out. Having her here has been a blessing but I have let her know that she's doing too much. She didn't come here to work, she came to relax and vacation.
She's also very helpful for me. I've had no one to rub my back down and she does. It's great and it helps for a while. Anything to help with the pain is a blessing. I have been up more in the last few days than I've probably been up the entire time I've been sick. I can tell too, my back is constantly on fire. I cry, sit on the porch, get on the computer, put on an icepack, talk on the phone or whatever it takes to help. The meds only do so much. My doctor says it's up to me to find ways to keep the pain level from 5 - 7 (with spikes of 8 - 9 out of 10) under control.
My friend, NL, came to help out on Saturday. With no hot water yet and no boxes in the house (yet) to unpack, there wasn't a whole lot she could do. She definitely helped out as much as she could though and it was a blessing. Unfortunately, my pain spiked up to around level 9 (burning, intense pain) and I had to hurry up and get to the bed while my MIL rubbed ointment on my back. I took Dilaudid (which I ended up taking the last one) and my normal meds to try to bring the pain down. I fell asleep rather quickly. Being up so long the past few days, I was depending on the Dilaudid to help with the increase in pain. Now, I have no choice but to follow the signs my body gives me when it's time to sleep, or rest.
I hope everyone had a fabulous weekend!
Tuesday, July 22, 2008
No Change
I'm not sure what's going on but today, I'm experiencing numbness on my entire right side. This has been one of the temporary symptoms that come and go. I've had the numbness the entire day, including my face. It feels really strange.
The worse part of this is that there is really nothing the doctors can do. I've provided the information to my doctors, in writing and verbal, and the basic response is to manage it the best way I can. If it starts effecting both sides of the body, I'm heading into the ER, ASAP!!
It's strange because it also effects the private areas of my body. It's not painful, of course, however, it does feel extremely weird.
Between everything going on lately, I'm beat. The pain alone, exhausts the heck out of me. Add everything else in and I'm done for.
The strangest thing happened this morning. I woke up from a quick nap, after Mickey left for work, and I went to the bathroom. I've been using the bedside commode over the last few days but decided to give the short distance walk a try. I'll go when I feel I can but Mickey wasn't home to help me back if I couldn't make. Anyway, I felt like a drunk person. I was swaying from side to side, imagine that with the existing uncontrollable tremors. My head felt like I had been out all night drinking and therefore, had a hangover. I was a little disoriented but mostly I was trying to get control of myself and wondering what the heck was happening. I didn't figure it out but it went away within the half hour so I let it go. If it happens again, I'll definitely let my doctor know.
I take a lot of meds and I know for a fact that I can have a reaction after taking a med for a long time. For this reason, I would want to make sure I'm not experiencing some type of weird reactions from a med. Any more drunken mornings and I'm off to the doctor.
I hope everyone is having a wonderful day!
The worse part of this is that there is really nothing the doctors can do. I've provided the information to my doctors, in writing and verbal, and the basic response is to manage it the best way I can. If it starts effecting both sides of the body, I'm heading into the ER, ASAP!!
It's strange because it also effects the private areas of my body. It's not painful, of course, however, it does feel extremely weird.
Between everything going on lately, I'm beat. The pain alone, exhausts the heck out of me. Add everything else in and I'm done for.
The strangest thing happened this morning. I woke up from a quick nap, after Mickey left for work, and I went to the bathroom. I've been using the bedside commode over the last few days but decided to give the short distance walk a try. I'll go when I feel I can but Mickey wasn't home to help me back if I couldn't make. Anyway, I felt like a drunk person. I was swaying from side to side, imagine that with the existing uncontrollable tremors. My head felt like I had been out all night drinking and therefore, had a hangover. I was a little disoriented but mostly I was trying to get control of myself and wondering what the heck was happening. I didn't figure it out but it went away within the half hour so I let it go. If it happens again, I'll definitely let my doctor know.
I take a lot of meds and I know for a fact that I can have a reaction after taking a med for a long time. For this reason, I would want to make sure I'm not experiencing some type of weird reactions from a med. Any more drunken mornings and I'm off to the doctor.
I hope everyone is having a wonderful day!
Sunday, July 20, 2008
Bad Times
I've been under the weather and it really sucks. This morning I slept really late and when I woke up, I had a difficult time just sitting up for the icepack. After my morning ritual, I had so much pain in my legs and back that I just wanted to scream as loud as I could, for as long as I could.
When I could no longer take it, I called Mickey in the bedroom and told him I was having a really bad time. He rubbed ointment on my back and stayed with me for a while. Before he could leave the room, I had to change positions. I couldn't do it on my own. My hands and legs were tingly and numb feeling, so with the pain, it was too much. I had to change positions because it was getting more painful by the second.
Mickey was trying to help but I was having a hard time and not speaking clearly so it was a little chaotic for a bit. Michael was there to see me in tears that I was trying really hard to hold back. I couldn't so I just let it out. I don't like my kids seeing this side of what this illness does to me but I'm not sure why. Maybe because part of being a mom is taking care of your children, being a nurturer and a care giver when they need it. Regardless, it was too late because the pain was excruciating. Once I moved to a better position, the tears were gone and the smile was back. That's just the way I cope with it. Smiling rather than crying. Making the best of a bad situation.
Mickey was great and I was soon on my back and able to get a little relief for a while. I had to change again before the half hour was up. Mickey helped me prop up against my pillows and I stayed in that position for quite some time. I was afraid to move because every other position was so uncomfortable and painful. Besides, I'm sure by then Mickey needed a much deserved break.
Around 6:30PM, I was finally able to see a little light at the end of the tunnel. The tingly, numbing feeling was only in my fingers and the side of my legs. That's a lot better than before. The back pain had gotten to a level of about 6 (out of 10), so I was finally able to sit in the chair.
Trying to read emails and ASAP from a little handheld thingy with Internet connection, is extremely difficult. I'll have worse vision, sooner rather than later. Sometimes I can send responses but most times I can't. I get frustrated because the darn thing moves so slow that I'd rather sit in the chair. At least by typing about 85 words a minute, I can type what I need to rather quickly and be done.
Kira doesn't have computer access at the moment but she has communicated that she's doing much better since the pain pump was implanted and will be starting school at the University real soon. Unfortunately, Keesha and Penny are both really under the weather and in need of your prayers. Thank you for these much needed prayers. Hopefully both will be feeling better soon.
It's actually weird to say we feel better when the reality of the situation is that we're truly not. Not better, I mean. Feeling better means getting the symptoms back to a tolerable level. It means feeling better from an extreme increase in symptoms or other complications that brings us down, or puts us in bed for hours, days or weeks at a time. I pray they are able to get back to a tolerable level. If they can do better than that, it's a much needed blessing that's well deserved.
I hope everyone had a great weekend!! Fun in the sun, or snow, depending on where you are in the world.
When I could no longer take it, I called Mickey in the bedroom and told him I was having a really bad time. He rubbed ointment on my back and stayed with me for a while. Before he could leave the room, I had to change positions. I couldn't do it on my own. My hands and legs were tingly and numb feeling, so with the pain, it was too much. I had to change positions because it was getting more painful by the second.
Mickey was trying to help but I was having a hard time and not speaking clearly so it was a little chaotic for a bit. Michael was there to see me in tears that I was trying really hard to hold back. I couldn't so I just let it out. I don't like my kids seeing this side of what this illness does to me but I'm not sure why. Maybe because part of being a mom is taking care of your children, being a nurturer and a care giver when they need it. Regardless, it was too late because the pain was excruciating. Once I moved to a better position, the tears were gone and the smile was back. That's just the way I cope with it. Smiling rather than crying. Making the best of a bad situation.
Mickey was great and I was soon on my back and able to get a little relief for a while. I had to change again before the half hour was up. Mickey helped me prop up against my pillows and I stayed in that position for quite some time. I was afraid to move because every other position was so uncomfortable and painful. Besides, I'm sure by then Mickey needed a much deserved break.
Around 6:30PM, I was finally able to see a little light at the end of the tunnel. The tingly, numbing feeling was only in my fingers and the side of my legs. That's a lot better than before. The back pain had gotten to a level of about 6 (out of 10), so I was finally able to sit in the chair.
Trying to read emails and ASAP from a little handheld thingy with Internet connection, is extremely difficult. I'll have worse vision, sooner rather than later. Sometimes I can send responses but most times I can't. I get frustrated because the darn thing moves so slow that I'd rather sit in the chair. At least by typing about 85 words a minute, I can type what I need to rather quickly and be done.
Kira doesn't have computer access at the moment but she has communicated that she's doing much better since the pain pump was implanted and will be starting school at the University real soon. Unfortunately, Keesha and Penny are both really under the weather and in need of your prayers. Thank you for these much needed prayers. Hopefully both will be feeling better soon.
It's actually weird to say we feel better when the reality of the situation is that we're truly not. Not better, I mean. Feeling better means getting the symptoms back to a tolerable level. It means feeling better from an extreme increase in symptoms or other complications that brings us down, or puts us in bed for hours, days or weeks at a time. I pray they are able to get back to a tolerable level. If they can do better than that, it's a much needed blessing that's well deserved.
I hope everyone had a great weekend!! Fun in the sun, or snow, depending on where you are in the world.
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