Sunday, June 29, 2008

Interesting News

While visiting ASAP last night, I heard the most interesting news. My neurosurgeon did say that he wouldn't operate on the syrinx until I was either paralyzed or until it encompassed more of the spinal cord. That's all the explanation we got.

Well a new comer provided more valuable information that I found very interesting. She stated that the doctor included that he wouldn't operate because the syrinx was the same size as the shunt. Therefore, being the same size, it would cause paralysis. If not paralysis, close to it, due to the severe numbness it would cause to the legs. She did receive conflicting information regarding the body parts that would be paralyzed. She first heard it would be from the waist down. Then she heard later that it would be from the neck down, causing a need for both a catheter and colostomy.

Givien the full scope is much more valuable than just throwing out there, "wait until I'm either paralyzed or the syrinx encompasses more of the spinal cord". She actually knows "why" it would cause additional problems. The size of the shunt is about the same size of the syrinx. Too much fluid would be drained, leaving no fluid to surround the shunt. I can imagine this would create a number of serious issues. I can now understand the need to wait until the syrinx is wider. The shunt basically needs to be bathed in the fluid.

I really don't want surgery anyway. Just hearing of the possibility of paralysis and knowing that the pain would/could be worse, was enough for me to shy away from it. Also, there's really no guarantee that having a shunt will actually "slow down the progression" of symptoms. There is no cure. I accept that. I don't want anyone to cut through the layers of my back, then the layers of the spine and spinal cord, in order to get to the syrinx, so the shunt can be placed. "No Thank You!"

Smoking Update

I'm still trying to quit. Some days are better than others. Overall, it's not going so well but I'm still trying. I'm still smoking around 4-6 cigarettes a day but hoping to get down to none.

Not Much Better

Well, I'm not much better over the last few days. Seriously, it feels like a large piece of bone pokes out in the lumbar/lower spine, every time I move. It hurts and pokes out the most when I'm laying down, trying to sleep. I feel it the most when I breathe in. I'll speak to the doctor about it at my next appointment. There's so many strange spinal sensations that have occurred over the last two years that it's hard to tell if any particular one might be an indicator of anything significant. None have been significant so far. They just are. Add on this horrible headache and I have quite a little mix, as always.

For the last few nights I haven't been able to sleep until I'm ready to pass out. I basically sit up until I can't stand to be awake anymore. Then I won't have to worry about feeling anything, I lay down and fall fast asleep. Of course, then I sleep most of the day away.

Yesterday, I was in the pool for a bit, relaxing without moving around or walking. I have a pool chair, so I used that or two noodles, which kept me from using my legs. I got sunburned and came inside and fell asleep for about three hours.

This morning, I woke up to take my meds, have a macchiato and use the icepack but went to sleep while it was on. Mickey came back with breakfast so I woke up, took off the icepack ate breakfast and went right back to sleep. I woke again around 12:30PM and now I'm awake, hopefully for a while.

I started the ear drops today. I had to cancel last weeks appointment because I had the day mixed up with another appointment I had. Since I hadn't started the drops yet, they re-scheduled the appointment for this week on Tuesday.

I hope everyone is having an enjoyable weekend!

Saturday, June 28, 2008

Bad Day Yesterday

For some reason, I had the worse day yesterday. My head felt like it was in a cloud all day. Like a headache, but not quite. Sort of felt like my head was going to explode. Like a full feeling but full of what? I don't know but it was strange. I've felt that way before but I still can't explain exactly how it feels.

My pain level stayed around a 9 all day and night. I took a short nap in the afternoon, shorter than usual, maybe about an hour. However, at bedtime, I could not get to sleep until sometime after 1:00AM. Then the granddaughter woke me up at 3:?? something, she doesn't like to feel like she's alone in the bed. She moved closer to me so we shared a pillow for a few hours. At 4:45AM, the alarm went off. I forgot to turn it off. At about 6:45AM, Mickey came in with the ice pack for my back and made my macchiato. I've been up ever since.

As I said, I couldn't get the pain level down yesterday, no matter what I tried. Distraction didn't stand a chance. I started having spasms right under the shoulder blades but in the middle of the spine. It was so bad, I was in tears for quite a while until I adjusted to it. Not to mention, I still had to deal with the pain in the mid and lower back that's always there. On top of that, I had a tight feeling across my back, like there was a band on each side, pulling it tight. I didn't do anything to cause a flare-up.

My legs hurt to move them and when I walked to the bathroom (I can't use the bedside commode for BM's), it was a serious struggle to keep from falling. The tremors were very violent.

Today, I'm barely a little better. The full head feeling is gone but everything else is the same. I might go out in the pool, with Tanira, later this afternoon. If I can't do any walking or exercises, I have a pool lounger that I can sit in. I'm sure it will be relaxing just to sit outside in the pool with the fresh air. I told her to wait and see how I feel once I have my afternoon nap (or rest, whichever I can manage).

My thoughts and prayers are with everyone from the ASAP group. There's quite a few people heading into surgery next week and even more in the recovery stage. I pray all the surgeries and recoveries are successful. No word from Kira yet, I pray her recovery is going well and that she's experiencing significant relief from the, newly implanted, pain pump.

I hope everyone is having a lovely day!

Thursday, June 26, 2008

News From My Pain Management Doctor

During my last few visits with the PM doctor, he stated that I need to get out of the house more. He told Mickey that he needs to find places to take me, even if it's to visit with family or friends. He also told him to invite family and friends over for a backyard BBQ maybe once a week.

He told me to spend more time outside. I told him that I have a friend who comes over when I'm up to it and we'll chit chat for a while. He said that was good but try to do it more often, even if I'm not up to it. I told him it was better for me to pick and choose times because I'd prefer my friends not see me when I'm suffering the most. He said that's actually when I should invite my friends over. I left it at "I don't think so". I do know that NL will be there for me regardless, and she has. She is such a wonderful, supportive and caring friend. I would like for her to visit more but I don't want to visit when I look and feel like crap.

It takes a lot for me to get motivated (bring myself to smile for company, I do it all day for family) for company and then when NL is here, I always feel so much better and wonder what took me so long to invite her over. I promise myself I'll try to invite her over more often because I always feel better but when I'm in a mood, I forget the promise I made. I'm suffering and I just want to be alone. I don't subscribe to the "misery loves company" club!! LOL!

I'll survive and I know my doctor was right, but as I said, "when I'm feeling my worse I just want to suffer in peace". It makes perfect sense to me.

Update Since 2nd Pool Session

Since the second session of therapy, I have had several nights of insomnia, due to pain. I finally got some, much needed, sleep this morning.

I was able to go to dinner with my friend. It's funny that seconds before she arrived, I was sitting on the edge of my bed with my head in my hands, praying to GOD for relief from all the pain and the terrible (had it several days) headache. When she rang the doorbell, I told myself that I could not keep myself from getting out of the house once in a while. I need to be able to experience life outside in the real world, regardless of how I feel internally.

When I rolled outside and greeted her on the porch, I was all smiles, and she was none the wiser of how much I was suffering. I had a great time!!!! It was wonderful to sit and relax while catching up on each other's lives over the past 6 months or so. We were so caught up in discussion that, while eating our dessert, we realized it was close to closing time. I always say, distraction is a great non-medical method of treatment.

Well, I've been able to visit ASAP recently, but not much else. I nod off several times while reading the posts but eventually, I make it through and then head off to bed for a nap. I've been unsuccessful at napping (until today) but at least I got to rest.

I still have a headache (it's been about a week now), extra pain in my back/spine, along with the weird sensations. However, the pain in my legs has settled down to an ache and I'm back to only using one ice pack in the morning. Also, as I mentioned above, I finally got to sleep this morning. I slept from about 6:00AM until around 11:00AM.. YIPPEE!!

I hope everyone is having a wonderful day. Please keep my friend Kira in your prayers. She had surgery on the 23rd and hasn't been on the message board lately so I'm praying she's going through a successful recovery period.

Monday, June 23, 2008

Second Session of Aquatic Therapy

I had my second session this morning at 8:45. I only did 10 minutes today. I informed Beth about the tingling sensation in my spine all weekend and the tremors all night in my arms. We agreed that we would only do 10 minutes instead of the 15-20 minutes last time.

When we were done, I had pain in my lower spine but nothing like the first time, which leads me to believe that the first session was just too long. I'm really tired but my next medication dose isn't until 11:00, 30 minutes from now. At that time, I'll lay down for a nap and see how I feel then.

I'll let you all know how today goes, and also what took place after the first session, when I feel much better.

Kira has surgery today. Please add her to your prayer list today for a successful surgery and recovery. Thank you very much. She's such a wonderful person and much too young to be suffering from so much daily pain. Hopefully, after today's surgery, she'll be able to get out a little bit and start enjoying life.

Sunday, June 22, 2008

Not Well

I've had the worse time the last few days. I hate to think of how I'll feel after therapy tomorrow. I might not be able to go, time will tell. My arms are too weak from all the tremors over the last few days and nights. When my arms and I feel much better, I'll let you all know what effect "aquatic therapy" had on me these last few days. It's not good, I'll tell you that.

Take care and I hope everyone is having a nice day.

Friday, June 20, 2008

Aquatic Therapy Appointment Today

The appointment went well. The water temperature was so calming, I was ready to fall asleep. LOL!

After I was lifted into the pool, we started off with a tube wrapped around my back and underarms to secure me. It's been a very long time since I was in a pool. We had to go below the 5 foot mark so I could stand on my legs (not toes). I floated around for a while until the tremors settled down some.

When I was able to stand, the tremors went back into full swing. That's always been the problem. There's no rhyme or reason to the tremors. No one, even me, has been able to determine any triggers or timing methods. Bottom line, they start and stop, whenever they want. They get pretty stubborn at times too.

Once the standing tremors calmed, we started doing pivot exercises. The tremors were slight so we started walking sideways, holding onto the bar. The tremors were under control so we started walking forward, turn around and walk back. Approximately six to eight steps each way, still holding onto the bar.

This all occurred over a 15-20 minute period. All of a sudden it felt like a 500lb weight had been placed on my lower back. Three people helped me (with the lift) back to my wheelchair and Mickey rolled me to a room so I could get dressed. The therapist brought me a glass of water so I could take some pain meds.

I still had to get seated in the car. The meds take 15 minutes to take effect.

While I was out, I asked Mickey to take me to WalMart so I could pick up the things I've been requesting for quite a while. I also had to get the ear drops I need to begin on Monday. My pain level never went down. Well, it was my own fault for being so stubborn and wanting to get my much needed shopping done. We weren't in there long. Remember, I only get out of the house once a week, and it's certainly not to WalMart.

By the time we left the store, my legs were hurting and aching real bad. I could barely stand up. When we got home, I tried to rest but I couldn't. I watched TV for a bit, kind of a forced rest. Talked on the phone to NL and LH, sent an email to JW and came to blog. My eyes have been burning and are heavy, since the moment I got in the car to come home but I'm not ready to sleep. Today, I'm like the child who fights sleep! LOL

I hope everyone is having a pleasant day! Please continue to add my friends from ASAP (Kira, Keesha and Penny) to your prayer list. Kira will be having surgery on Monday so please pray for her then.

Something Forgotten

This post should have been at the beginning of my blog, along with the introduction. To tell you the truth, I kept forgetting to post it. I would remind myself, when I finally remembered again, and still forget.

I usually have to take breaks in between posts. There's also posts that take several days or weeks to complete. For these reasons, some posts might be later than the actual event by hours or days. For example, you may see a post pop up in May that I actually completed today. Unfortunately, this happens because the post gets stamped with the date you started it and when you complete it, it's listed under the date it was started.

I have about five posts I'm working on now and even though the dates are stamped for June, I probably won't finish them until sometime next month or later. The longer posts just take more time and my rest periods and naps, must be taken.

I apologize for the inconvenience because if you only read the current post, you'll miss the posts that are being stored until they're completed. Blogging is therapeutic for me but my overall health is more important.

Today's the Day

The day for pool therapy is finally here. It was pushed up a week because the woman providing the therapy will be on vacation next week.

I have such high hopes about this therapy and finally being able to get exercise on my legs. I'll keep you all posted on how it went. I hope it's not another day of just sitting there answering questions, I'll be so frustrated.

I hope everyone is having a great day! It's beautiful outside but really HOT!!!

Thursday, June 19, 2008

Yeah!! It's Thursday!

It's finally Thursday. I didn't get out last Thursday so I'm happy to be getting out this week. I'll be leaving in about a half hour and I can't wait.

Am I feeling any better? "NO" Will that stop me? "Absolutely Not!"

Therapy was moved up to this Friday due to the therapist will be on vacation next week. Mickey took off so he can go with me.

After tomorrow, I have until next Thursday to rest my body. I'm sick and life goes on! I have pain and I've learned to deal with it!

I could be on my death bed and I'd still go for my Thursday outing. I even went when I had a very high fever with the flu. I wasn't contagious anymore so why not?

Don't worry, I won't be whining tomorrow. It doesn't help, I whine everyday! LOL!

I hope everyone is having a wonderful day!

Wednesday, June 18, 2008

Passed on Dinner Tonight With A Friend

I have been experiencing abnormal sensations in my spine and legs. Also, as I said, I'm having strange days.

My friend, who I haven't really talked to in quite a while, called yesterday and invited me to dinner. I told her I'd try for tonight. Once I laid down and tried to nap (I rested) all I did was deal with a lot of weird sensations and numbness. When this happens, it's normally followed by weakness in my arms and legs. I should have just said Friday or Saturday anyway because I like to rest up for my Thursday night outing. I then rest on Friday from being out on Thursday. Saturday would definitely have been the better choice. We'll see. She called and I had to tell her that, with these sensations, I just didn't feel comfortable going out tonight.

It's probably good for me to get out with others. I think only getting out with Mickey all the time (I'm sure that he can handle things) makes it hard to get out with others. I don't know if others can handle everything (my constant shakes when moving, the hoarseness, breathing difficulty, not to mention the heavy wheelchair) so I may be delaying dinner out of fear of the unknown. I don't know but, does that make sense? Anyway, we'll see on Friday. This might be part of the reason I don't have many friends left.

Just thinking out loud!!

Strange Days

I'm not sure what's happening but lately I have been sleeping for hours in the afternoon and then go right back to sleep at night. There are times when I have insomnia so I would think that sleeping so many hours in the afternoon would lead to insomnia at night, that hasn't happened.

Yesterday, I had trouble remembering when my Anniversary was. It completely freaked me out since we've been married for 26 years. I had to call my husband to get the date. I followed my normal daily routine, all the way through ASAP but I had a strange feeling all day. Like everything was in a cloud/haze and I could pass out at any moment.

I was asleep by 1:00PM and didn't wake up until about 6:00PM. My normal naps last anywhere from 2-3 hours. When I sleep longer it throws me off. There was a time, not so long ago, when taking a nap was unheard of. My mom use to say that she could tell when I was sick because I would come home from work and go to sleep. She was right, there was always some type of illness happening on the rare occasion I took a nap. These days, it's a normal occurrence.

I still feel strange today. My chest feels tight and it's harder for me to breathe again. I'm using one of the inhalers a bit more. My head feels weird, there's pressure on the sides like the first time I had a pressure headache. My eyes have a very heavy feeling. It was so hard to wake up this morning. I slept the entire time the ice pack was on and was dozing as Mickey was walking out the door, going to work. I slept for a few hours after he left.

It could just be that the "hot" days have returned. That just popped in my mind this second while I was looking at the outside temperature located on my icon bar. I don't do so well in the heat. My pain and other symptoms tend to increase. I actually blogged about it last month.

Time will tell. In the meantime, Mickey is still working at leveling the ground for the pool. It's not an easy task when you've worked all day.

I hope everyone is having a wonderful day!

Monday, June 16, 2008

Update From Appointment Today

My appointment with Dr. Mc went very well. He wants to get me into the Sharp Spinal Cord Injury Program for hand control driving. We would still need to get a van, which is nearly impossible. However, if we should be blessed with a van and have the hand controls installed, I would be able to drive again.

He stated that the hoarseness and breathing difficulty are neurological and related to the syrinx. He stated that some of the symptoms that I'm having would indicate that there is something going on with the brain, along with the syrinx.

Mickey and I both laughed when he said, "one day they'll put it together and figure out exactly what's wrong". He's referring to the Neurologist and the NeuroSurgeon since my symptoms are neurological. He wants me to have Dr. K (ENT) give him a call so he can discuss the hoarseness and pulsatile tinnitus with him. He's convinced that it's all related and neurological. It makes sense to me. Besides, there are no physical findings other than the syrinx which causes neurological dysfunction.

I hope everyone is having a pleasant day! My friends at ASAP still need your prayers. Thank you.


Mickey has already gotten a pool and is in the process of leveling the ground. He thought he had it right but didn't and has to try it again.

In the meantime, Tanira had a ball in the pool yesterday. She just splashed around in the little water that was put in. She played in the water for a few hours while Keonna grilled up the Father's Day meal. I had my camera out but unfortunately, I went to take nap so I didn't snap any photos of her.

From Monday to Wednesday of this week, Mickey will work on getting the pool just right. By Thursday, it should be ready for me to begin trying to walk around in it. Tanira will be back on Thursday too (she's here from Thursday to Monday night), so she can join me. She already has floatees. She doesn't know that Nana might need her own set of floatees. Thankfully, I have an entire foot to move around in without the water being over my head. LOL!

Dr. Mc - The Greatest Doctor

It's been six months since my last appointment with Dr. Mc. Prior to this appointment, I saw him every three months. Once all my disability paperwork went through and I started seeing the pain management doctor on a monthly basis, he advised me that I only needed to visit him every six months. He also advised to make sure I keep up my visits to the Neurologist. Did I mention he was the doctor who fought (verbally) with the Long-Term Disability carrier for me to get my benefits?

Dr. Mc is an exceptional doctor and has really done all that he can for me. Without the need for surgery, there's not much else to do. However, if there's an emergency, I can contact him any time. He's also still the doctor who completes all my paperwork related to my disability.

Considering that he's a surgeon who has never performed surgery on me, I really admire the fact that he continues to treat me. Most surgeons drop you when there's no surgical need. Their main goal is surgery so unless they're going to operate, they don't care to get involved.

For instance, my Neurosurgeon saw no need to operate and referred me back to the Neurologist for on-going treatment. Dr. Mc didn't refer me to another doctor, he continued to treat me, whether I needed surgery or not.

He didn't perform my surgery in the hospital, yet he was the doctor who followed my care until I was transferred to Acute Rehab. He was also the doctor I saw for my post-op follow-up. I was seen by a PA for the doctor who performed the surgery but I never saw him personally, once my surgery was over.

I really don't like going to the doctor, I never have. I'm looking forward to the appointment being over. However, at least I know I'm in good hands with Dr. Mc. It's good that he'll get a chance to advise me on the bulging discs that have developed since my last appointment with him.

Sunday, June 15, 2008

Father's Day Photos

Just thought I'd post a few pictures of the kids and granddaughter with Mickey. It has been a really nice day. Mickey and Michael are watching the playoffs right now and for all the noise, you'd think there was a crowd in there.

Update on the Smoking

It's day 4 and I'm doing alright with the patch. I'm down to approximately 4 or 5 cigarettes a day. I'm thrilled with this considering I was up to 15 or 20 a day. I'm just taking it one day at a time and hope that I will be down to zero real soon.

I hope everyone is having a great day!

Father's Day!

My daughter came home yesterday so she could celebrate Father's Day with her dad and brother. She's such a wonderful daughter and sister. She got terrific gifts for both of them and is, at this moment, outside grilling hot links, hot dogs, hamburgers and bananas. I've never had grilled bananas but I guess it's the new fad for kids these days.

I stayed out with her for a while but then I needed to come inside so I could charge my wheelchair. Later today we're going to take the guys out for a movie or two. I made sure to stay in bed longer this morning, once the ice came off, in order to get extra rest for the outing.

My granddaughter (Tanira) was so worried about a gift for her dad. She made him a card and gave him a Daffodil bear I got several years ago but never took out of the plastic. It's the cutest bear and fortunately, I'm getting a new one as soon as they come in. I just got a bird feeder the other day and she wants to give that to her dad also. We have no birds and are not in the habit of feeding the outside birds. We do give them a place to nest their eggs and that's as far as it goes. I don't want every bird in the area on my patio. It'd be too creepy, like the old movie called "the birds".

Happy Father's day to all the dads out there. I hope you all have a terrific day!

P.S. We didn't make it to the movies. There was no way I was going to make it through one movie, but I can dream. The guys just wanted to stay in and relax before the basketball playoffs today.

Friday, June 13, 2008

I've Added A Couple of Photos

I've gone back to a few posts and added photos. I believe one was Mother's Day (1st update post in May) and another was The Beginning (1st post). If you're interested in seeing these photos, just pick the appropriate post.

Thursday, June 12, 2008

New Treatment Plans

During my appointment with the pain management doctor, on Monday, he referred me for Aquatic Therapy. I've already had my consult but have to wait until June 27th to actually start. Either the person providing the therapy is very busy or on vacation. During the consult, it was advised that the therapist do a one-on-one style with me.

The tremors are so violent and I never know when they occur. For this reason, I have to have one-on-one contact in the pool. They have a lift to put me in and pull me out of the pool with. I can't wait to see if the tremors won't matter in the water. I've heard this numerous times but each person is different. I'm hoping it works for me. My legs really need the exercise.

I saw the ENT doctor on Tuesday. I have swelling on my vocal cords. I need to quit smoking in order to see if the hoarseness will stop. If it doesn't then the ENT doctor will go from there. He said it's hard to determine what the reason could be when a person smokes. Mickey said they would blame it on the smoking before I even went. He said when people smoke and have any type of problems with breathing or talking, the first thing the doctor will say is "it could be due to smoking". So true. Time will tell if the hoarseness is actually due to me smoking or from some other reason.

I also have to use eardrops in one ear for a week. Apparently this is supposed to help with my "hearing loss and pulsatile tinnitus". Again, time will tell.

I'll wait a few weeks or a month before I schedule my appointment with the pulmonary specialist. I have breathing problems that started just before the hoarseness. I'd rather take the smoking out of the mix so I can get an actual diagnosis for both of these problems.

After Effects From Having Fun / Enjoying Life

I had a great time celebrating my birthday. Did I mention my husbands birthday was the 7th? We always celebrate our birthdays together.

I had my regular Thursday outing, was out Friday, had the party Saturday and slept all day Sunday. Monday I had a doctor's appointment, went by the physical therapy office to get set-up for Aquatic Therapy, went to dinner with my son (Michael) and Mickey and then Mickey and I went out for the evening. This was my actual birthday.

Tuesday I had a physical therapy appointment and an appointment with the pain management doctor. I came home, watched a movie and went to sleep for the rest of the night.

Wednesday, I was up for a few hours in the morning but was barely able to keep my eyes open so I slept from about 11:30AM until 9:30PM. I couldn't believe I had slept so long. It was pretty much the same as on Sunday. At least when I'm sleeping, I don't have to deal with the pain as much.

I'm a very hard sleeper and since I started taking Lyrica at night, I don't completely wake up when I turn because of the pain. I change positions a lot in my sleep. According to Mickey, I turn, yell out and go right back to sleep. In the meantime, he wakes up and has a hard time getting back to sleep.

Even though I woke up at 9:30PM, I took my meds and went right back to sleep. I woke up at 3:00AM and just laid down until the alarm rang at 4:45AM. We completed my morning routine and I laid back down for a little while before sitting up and visiting ASAP.

It's noon on Thursday. I tried to take a nap around 10:45AM but had no success, which means that my body has now survived the after effects of sleeping from all my activity since Thursday evening. I'm still dealing with extra pain but the tremors are back to normal and my head is no longer hurting. I would wake up and lay down with a headache in full force.

It's sad to say "I want to have fun but I'll pay for it later". I thought I'd say something like that after having an extra shot during happy hour or hanging out late knowing I had work the next day. I never thought I'd be making statements like this while making plans to simply get out of the house and enjoy life. Needless to say, I go through this every Thursday when I have my weekly outing and heaven forbid if I happen to get out two nights a week.

I hope everyone is having a lovely day!

Smoking - Trying to Quit Again Beginning Today

The last time I quit smoking it lasted over 9 months. Today, I will try this again. I can't make any promises of how this will turn out. All I can do is give it an honest try.

Day one, I'm using the patch and I really want to smoke. I have tried distraction through Ring-A-Word puzzles, blogging and chewing gum. So far, it's working.

I have tried to quit many times. Always cold turkey. This time I will try the patch, you never know.

I hope everyone is having a great day!

Sunday, June 8, 2008

My Birthday Celebration

I had the best birthday celebration. My sister and her family were there. Rozanne from ASAP came, we met each other for the first time and talked for a while. It was great. My friend Hanh came and we had a lovely time.

My niece and her dad didn't show up because she made previous plans. I spoke to her on the phone and she was having a great time, lots of fun.

Today, my legs feel really strange. I slept 13 hours and when I woke, I had to take extra meds. My weekend fun and birthday celebration was worth any problems my body gives me today.

My friends in ASAP still need your continued prayers. Thank you all.

I hope everyone has a great day!

Saturday, June 7, 2008

Today's Forecast

I had my outing on Thursday which was very tiring but lots of fun. Mickey had Friday off from work so we spent the day out. Knowing I was going to be out again, this time I placed Lidocaine patches on the two worse pain spots on my back. I had my favorite buffet at the Casino, which is only about 7 miles from my house. It has been terrific to get out of the house so much. I'm only use to being out on Thursday's. I don't care, I roll with the extra pain and have taken extra pain meds. As I've said before, I will sacrifice an increase in pain and symptoms to spend quality time with my family.

I had severe leg tremors all night long. As soon as Mickey feels my legs tremor, he jumps up from his sleep and rubs my legs to stop the tremors. Tremors can last up to three or four minutes, otherwise. I woke up this morning with the daily routine. Afterward, I had severe tremors in my arms for about an hour and a half. I took a quick nap and have been up for the past two hours. I really need to take another nap, but longer this time.

I have so much to do just to be ready for my BBQ birthday celebration. Although it's Mickey's birthday today, mine is on Monday so we're having the celebration today. I have to shower and do my hair (this alone will bring me to tears). Once I'm done, I have to take another quick nap. I also need to put on two patches again and increase my meds so I can be out in the backyard for about three hours.

I have the worse headache and I know it's from being up and about the last two days. Once I take a nap, I'm hoping the headache will be gone. I'll deal with the other symptoms and take the Meclizine for the dizziness. It's too much to think about right now but I know once the fun starts I'll be completely distracted and not focused on the increase in symptoms. I can't wait because my family (sister, nieces and nephews) will be here.

Actually, Rozanne (phyrehawke) from ASAP will stop by and we'll meet each other and hopefully be able to form a friendship. It would be great to have someone so close by to talk to when times are hard. I know I'm willing to be there for her whenever she needs a shoulder to lean on. So far we've only communicated through email and instant messenger.

I'm going to try to nap as much as I can. If I can't sleep, at least I'll try to rest. It will be fun to spend time with my family. I'll sacrifice the world for all of them. I'm sure it will also be good to be outside in the fresh air.

My ASAP friends Kira, Penny and Keesha still needs prayers. Please continue including them in your prayer list. Kira finally has a surgery date for a pain pump so I'm praying she will soon get much needed relief.

I hope everyone is having a fun and happy day.

Wednesday, June 4, 2008

Dealing With Weight Gain

Years ago, after I had three babies, I weighed over 200 pounds. The problem was with my height, I'm only 5 feet tall. That's a lot of weight and in my eyes, I was huge.

For years, I tried to lose weight. I did every weight plan out there but nothing worked. I did weight watchers twice. This was before the pre-made meals. They had menus that you followed for 6 weeks. I did alright the first time and lost about 25 pounds. I waited a while and did it again. The second time I lost about 15 pounds. I cheated the second time. Altogether I had lost 45 pounds and about three pants sizes. I went from a size 18 to a size 12. It wasn't a lot but it was something and I was much more comfortable.

Within a year, I gained 45 pounds plus another 15 pounds back. I was totally frustrated and gave up even trying for about 6 or more years. After my mom passed away, I tried again. I lost weight so fast that everyone was telling me I was beginning to look anorexic. I wore all dresses and stretch type pants so I barely noticed how much weight I had lost.

One day I decided to go shopping and I had gone from a size 18 to a size 4. I couldn't believe it happened so fast. I only dieted for about two months or so. I didn't really diet, I cut back on the food I normally ate each day. For years, before dieting, I only ate one meal a day and today I still eat this way. I started eating a little more each day until I got to a size 6. Actually, some items I could get a 4 and some a 6.

I have been the same size for 10 years, until I got sick. After being home for a year, I gained 10 pounds. After starting Lyrica, I have gained 30 pounds more. A total of 40 pounds and instead of a 6, I now wear a size 10. I'm totally disgusted with this because it took me over 10 years to finally lose all that weight.

I had to choose between controlling the nerve pain or gaining weight. Lyrica is the only medication I have found that even comes close to controlling the nerve pain. I had a bad reaction to Neurontin. My options were very limited and Lyrica worked.

It's hard to watch myself keep gaining weight but it's not from my food intake. I haven't changed the way I've eaten in 10 years, other than to eat less but I'm still gaining. I only hope it stops soon. August will be the one year mark of taking Lyrica. Hopefully the weight will level off. My doctor keeps telling me that eventually I will begin to lose. I'm waiting!!

Tuesday, June 3, 2008

My Visit From A Friend

NL came to visit today, I changed the time to 11:30. I didn't want to stroll around the neighborhood so we sat on the porch and talked. We were so engaged in conversation that when we thought about the time, it was an hour and a half later. It was great to have a friend over visiting.

NL's such a wonderful person. My birthday is next week but she had a gift bag for me today. We viewed all the gifts together. She had everything that I like. I have to admit, I always have the hardest time shopping for everyone.

It was great to see NL and spend time outside, enjoying the fresh air and neighborhood scenery.

My ASAP friends Kira, Keesha and Penny still need your prayers. Thank you for keeping them on your prayer list.

I hope everyone had a terrific day!


Before I became ill, I had many friends. I was always out and about town with friends, going to happy hours, dinners or whatever came up.

When I first took ill and, changed jobs, I had more friends than I could count, even on my hands and toes. We saw each other often, talked on the phone or communicated via email. During that time, my driving was very limited due to the amount of back pain I was in. I began to socialize less because the pain was too much or the distance (for a get together) was further than I could drive. I would have to cancel events at the last minute or spend less time on the phone. My friends told me they understood, but in reality, they really didn't. My list of friends began dwindling away.

I was misdiagnosed a number of times before I was actually diagnosed with SM. When I first changed jobs, it was MS. I was devistated because I have family and friends in the last stages of MS. However, MS was incorrect, but because MS and SM share a lot of the same symptoms, it was an honest mistake. MS effects the brain while SM effects the spinal cord. Knowing I had SM left me just as devestated.

When I was hospitalized, there were no phone calls, visits, flowers or cards from "all the friends" I thought I had. Only three friends came to visit and were truly concerned with how I was doing and what I was going through. They did bring Starbucks, flowers, books, crossword puzzles, etc., which was an extra surprise. These three friends would call to see how I was doing. Two of them also visited while I was in Rehab.

When I came home, I couldn't drive (I still can't) due to the uncontrollable tremors. So, I would invite friends over, only five friends actually came to visit, and that was during my recovery period. One friend came every Thursday and it was wonderful. I was depressed but I looked forward to every Thursday. The two friends that came to the hospital and rehab, continue to visit off and on or we communicate via email. Two friends from a previous company came to visit once. Another friend came to visit and took me to lunch once. We've talked once or twice since. Another friend began to visit. We soon became close friends, and now, whenever I'm up to it, she'll come over and we'll stroll around the neighborhood and/or enjoy time sitting on the porch.

Today, I have the same friend that strolls around the neighborhood with me. I have the two long term friends that come to visit every once in a while (maybe three times a year). The friend that came every Thursday, has visited once (maybe twice) since she started working last year. She calls once in a while but it's hard because of my hoarseness. She can't really hear me, so I apologize and keep trying, but I can't get any louder because of the hoarseness. My voice gets too strained and I get frustrated, so basically, we don't talk on the phone that often.

I admit that it's difficult to go out with friends because of my wheelchair (it's very heavy). However, there's no excuse for not visiting.

My friend (we'll call her NL) will visit today and I'll try to stay out as long as I can before either the pain becomes too much, or the hoarseness begins to strain my vocal cords (it starts hurting at that time).

I've gone from more friends than I could count, "to five". It's very hurtful, knowing that those you once thought of as dear friends, "aren't". It's hurtful because you know they don't want to be bothered with you because you're too sick and/or you can't drive.

I could see if I were the type of person who sat and talked about myself and what I'm going through, the whole time. However, that's not the kind of person I am. If they ask how I'm doing, I'll tell them. If they ask for details about my symptoms or my disorder, I'll tell them. That's it, though. I like to know how they're doing, you know, live vicariously through them. I'm a talker and a good listener.

It's amazing that they don't even answer my emails anymore. What's up with that?! Thankfully, I have two male friends that will answer my emails. One of them frequently sends me motion pictures of him and his adorable puppy, or jokes. Yep, it's very hurtful. You begin to know just how alone you are. I never thought anything like this would happen to me.

During times when I need a shoulder to cry on, who can I turn to?!? My family considers me too strong to cry. I don't want to burden (with my tears) the five friends I still have. Thankfully, NL will drop whatever she's doing to help me when I'm down. When it's all so overwhelming, all I can do is cry. NL is more of a mother figure. She's much older, however, "she's here"!

I can't forget my dear friend LH. We met at work and she has been a friend since 1998. She has never visited me in my home. However, for ten years, we have talked on the phone every other day or so.

Anyway, today I have five friends and I'm blessed to have them. A true friend will be with you through thick and thin, good times and bad times. When the nurse and bath aide completed their four weeks with me, NL told me she would gladly take over the responsibility of taking care of me every day. That's a true friend that I'm blessed and happy to have in my life.

I have a wealth of support, understanding and encouragement from the many friends I have made at ASAP. We lean on each other when times are hard. I'm thankful and blessed to be involved in the ASAP community.

If I'm up at 11:00, I'll visit with NL today. She's absolutely wonderful, caring, helpful and endearing.

I hope everyone is having a blessed day!

Monday, June 2, 2008

Coping With Chronic Illness and Related Symptoms

With any chronic illness, you need to develop coping skills.

When I'm having bad days, I think that I'm really not coping very well. I realized today, that's not true. If I weren't coping well, with all that I have to deal with each day for the past 2 years, I wouldn't rise out of bed. I know this because in the beginning, I didn't get up. I laid in bed all the time, not for need or necessity, but rather because of severe depression.

I realize that there is a "huge" difference between staying in bed because of the way you feel from debilitating symptoms, versus staying in bed because of the "mood" you're in.

Acknowledging the difference, gives me the strength I need to move forward. The desire I have to get out of the house every Thursday. The will to live on, despite having a high level of pain each morning, and other debilitating symptoms.

I believe I can cope with everything that goes along with dealing with chronic pain and chronic illness. When I experience an increase in existing symptoms, or new symptoms, I suffer through the depression phase and, by the grace of GOD, I "make" it to acceptance. I believe I have done well at accepting and adapting to everything that has happened as a result of this illness. I have to believe that I can stay positive and continue to smile, regardless of what I'm suffering/struggling with on the inside.

I pray that GOD always gives me the strength, courage and ability to cope with any continuing progression or debilitation that occurs.

Please continue to lift my friends up in prayer. Kira is awaiting a pain pump and continues to struggle with high level pain and lack of sleep. Keesha is suffering from debilitating seizures that occur numerous times throughout the day, everyday. Penny (aka: hipcrip) is struggling with increasing progression of symptoms. Alana is struggling with increasing pain after surgery. All have been suffering/struggling with chronic symptoms resulting from Chiari Malformation, Syringomyelia and/or other Brain or Spinal related Disorders.

I hope everyone is having a *great* day!

Sunday, June 1, 2008

I Love the Outdoors

Sunny Southern California!! I love it.

Today I was able to sit outside on the front porch for about 30-45 minutes before my back pain became too much. If I could have gotten out of my wheelchair and ran to the bed, I would have. I had to lay down for an hour but it was so "worth it". All I did was enjoy looking at roses and watching Mickey cut the grass. Plus, a quick roll around the front of my house, and the neighbors house.

I'm going to give it a try tomorrow and I'm hoping by Tuesday I can call my friend up, to come over for a visit. Hopefully, I can enjoy at least an hour of fresh air and good company before I have to head back to bed. I haven't really sat outside and enjoyed the fresh air since I had the flu (maybe about a month or month and a half). I'm sure my friend will enjoy it also. I'll see how it goes tomorrow.

I hope everyone got outside for "fun in the sun" today!

June - A Wonderful Month

I didn't realize that today is the first day of June!! I'm a June baby. June is the month that begins Summer. Summer is the season for "fun in the sun and at the beaches (pools)"!! June 9th, next week, is my birthday. Mickey's birthday is June 7th. He is taking about three days off, from work, to spend with me and celebrate our birthday's. I hope I'm up to it.

Happy Birthday to anyone who has a birthday this month and to all the Gemini's!!

I have a few friends that are struggling right now and I would like you to include them in your prayer list. Kira, Penny, Alana and Keesha! Thank you.

I hope everyone is having a lovely day!!


I've had a pretty rough time with pain and tremors lately. I might get an hour or two in a day, but overall, I have to deal with this every day. I do take one day at a time. I even take time to smell the roses, if there's an hour or two in a day I can enjoy. I love to go right on my porch and look at the new growth of beautifully, colored roses my husband planted for me (before the illness). Sometimes, I even try to prune them.

Yesterday, I was very tired, weak and frustrated because I kept having the feeling that my legs weren't attached to my body. There was/is a burning pain on the right lower back, that's not relieved with the Lyrica, and the strange sensations in my spine are extremely uncomfortable and painful which wakes me up. Strong, instant pains usually make me yell out of my sleep and this wakes Mickey up.

When these feelings occur, along with the constant tremors, pain and other symptoms, I get so worn down that all I can do is cry. Thank goodness I'm now having a period of constant sleeping. I sleep so much that at least these frustrating and painful symptoms take hold for short periods at a time. I don't see how I could manage all day and night when I can't even handle an hour, or two, at a time.

This morning I woke up, my husband and I carried out the normal morning routine to help my symptoms, then I dozed off with the icepack still on my back. When I woke up, I felt better. My legs, despite the tremors, felt strong again (and like they were mine). No spasticity or weakness. The spasticity drives me nuts, because as soon as the legs tighten up, the tremors are soon to come.

I can remember not having tremors while laying down, for the first 15-16 months, or so. Laying down was a reprieve from the tremors. Not anymore, and I can't stand it.

I promised my granddaughter yesterday, that I would find an on-line game, or two, that she could play today. I didn't feel up to it, but a promise is a promise, especially with children. I choose to sacrifice for my family and grandchildren are definitely included. They don't understand (and really shouldn't be bothered with it) that I'm always sick.

Anyway, it was fun. I grew tired quickly so I had to take a break. She gets tired of games easily too so that was a good thing. I wasn't ready to lay down and feel those annoying sensations in my spine so I blogged. Blogging is therapeutic and a great distraction from "everything". If the feeling would last, I would blog all day. After ASAP, it's the next best therapy.