Saturday, August 30, 2008


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!

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!

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.

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!

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.

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!

Wednesday, August 13, 2008


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!

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.

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!

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.

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!

Tuesday, August 5, 2008


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.

Sunday, August 3, 2008


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!