Tag Archives: insomnia

Week Two Post-Op

Day by Day with a Movement Disorder Posted on August 11, 2017 by  

Week Two Post-Op

I’m now in week two post-op. I’m still struggling to sleep, to breathe, and to control my blood glucose numbers. Hopefully, by the end of this week I will be feeling much better!!

Monday

My blood glucose levels are still giving me trouble, no matter how hard I’m working to even it all out. That’s getting very upsetting … which will only make the numbers go higher from stress. We had Podiatrists appointments yesterday afternoon, and I figured even though I am far from feeling good – it’s not like I had to do anything but sit there and let him cut my toenails LOL. I did as an after thought when we were leaving, decide to take the quad cane with us. I was glad I had. By the time we drove there it was all I could do to walk from the handicap space up three steps into the building. I tested my after lunch (postprandial) glucose level and it was 257 – WAY over what the top limit is supposed to be, which is about 140. And I had used the MyFitnessPal to make sure our lunch was appropriately low sugar.

We bought another box of test strips on the way home, as I obviously need to keep testing.

Sleep is still eluding me, too. I woke up feeling like I had slept well, only to go to the bathroom and see that it was only 1:30AM. No amount of trying to relax would get me back to sleep. So I read the Kindle and tried to go back to sleep off and on for the rest of the night.

Tuesday

My fasting glucose number this morning was good, but I’m still weak and shaky. This was my last day to take two Prednisone a day. Tomorrow I’ll be down to one a day for another three or four days. I can only pray that these last few days of high steroid dose will soon be over. I am in misery. The suffocating feeling of having completely blocked off nostrils is making it impossible to get any rest.

Wednesday

I’m still experimenting with some way to get some rest, preferably sleep. So last night about 8:30 I took two Benadryl, thinking surely that would make me sleepy. Nope. At 11:30 I got back up and took two more. I had warned Hubby I intended to take more Benadryl if I could not sleep, so he’d know what was going on if I had any issue with taking so many. Anyway, with four Benadryl in me over a period of three hours – I could not get back to sleep. Ugh!

So I tried a different strategy. I quit TRYING to go to sleep. I did not open the Kindle. Instead, I lay in the recliner, more or less upright, being very conscious of forcing myself to breathe through my nose, even though it sounds like snoring and feels like I’m going to suffocate. I did some Tai Chi breathing forms and just lay there. As far as I can tell I never did actually go to sleep, and I eventually did read for a while. But I felt more rested this morning, anyway.

Fasting blood glucose number was good, so hopefully I’ve worked out a set of meals that will stabilize it. It will help that I’m tapering off the steroids.

Thursday – Appointment Day!!!

I CAN BREATHE!!!!

Daughter and twin granddaughters took me to the two surgeon appointments today. I had wisely decided to take the transport wheelchair, as UAB is a huge complex and I knew I’d have to walk a long way. I took my Glucose test kit with an ice pack, and we managed quite well.

I expected the skull base surgeon to remove at least some of the stents, and I was right. He pulled out the large plugs from the lower part of my nose and also a lot of fairly solid packing. Then he used a suction tool to remove lots of bits and pieces of packing, clots, and blood. Of course he had sprayed up in there with a numbing solution, so it was not uncomfortable. Daughter and I both like that he works with a camera attached, so we can watch what he’s doing internally. This was obviously not something my hubby wants to see, so he didn’t go with us.

The surgeon said it looked “GORGEOUS”. He’s very pleased with the results. I asked him some questions about why he thought this had happened. He attributed it to the first ENT surgery causing the blockage. I never did like that first ENT and had fired him as soon as I had healed from that first surgery in 2016.

I also wanted to know if he had cut out any bone or tissue that could have damaged the olfactory nerve function. But he assured me that what he did was nowhere near the nerve endings that control smell. He did test me with an alcohol swab, but I couldn’t smell it. I will now be using the essential oils he had me get to try to re-train my sense of smell. I haven’t had much taste or smell now for several years – before the first sinus surgery. Keeping my fingers crossed on that!

New Prescription

He gave me a new Compounding Pharmacy prescription for medicines to add to the Neilmed salt pack. This new prescription has an anti-parasitic, Budesanide, a steroid, and an antibiotic that specifically targets MRSA and Staph. Hopefully this steroid will not cause as many issues for me as the Prednisone has. I have a couple of days of Prednisone left, so we’ll see soon enough.

Budesanide is contra-indicated for Myasthenia Gravis, so I’ll probably have some muscle weakness from it. But if I can stand it, I’ll need to tolerate it. We’ll see.

After that appointment I saw the Oculoplastic surgeon who had opened up the blocked tear duct and put a stent in place. That was a quick appointment, but getting into the building is not really easy. Again, I was very glad to be able to sit and let them push.

IHOP Reward

It was way past lunch time by the time we left there, but I had been looking forward to IHOP all day. That was our reward for all the trouble. I took a Hydrocodone at breakfast and brought one to take at lunch, so the pain was reasonable.

We had a good time at IHOP. I had planned online what I could eat, so my numbers would stay decent. And they did. I shared a spinach, mushroom, and cheese omelet (minus the Hollandaise sauce) with daughter, and she ate the pancakes that come with it. My numbers stayed good!

I was slap worn out by the time we got home, so I stayed in the recliner and the girls did some housework for me.

I really wasn’t hungry when it was time to eat, but I was beginning to hurt again – so I had a small “safe” dinner, so I could take another pain med. And…. my numbers were high! That had to be from being so tired. It was a loooooong tiring day.

I SLEPT!!

I went to bed early and I SLEPT! I didn’t get up until sunrise! How wonderful!!!

I’m praising God for his goodness to me. I made a lot of thanksgiving prayers to Him while drifting off to sleep last night – wonderful blissful sleep……………

Friday

I was tired, but we went to eat at our favorite restaurant with family today. I enjoyed my first meat that needed to be chewed. Because I was careful with what I ordered, I had good glucose numbers.

Tear Duct Trouble

My eye that had the blocked tear duct was bothering me a little, and he had said I could use OTC eye drops. So hubby stopped to get me some. He always puts medicinal drops in, because I waste them. But this was just a lubricant, so I figured I could do it myself. Of course I got it all over my face – nothing unusual there. But I felt what I thought was a strand of hair of mine that refuses to stay away from my eye, and I tried to brush it off. The next thing I know a rubber band feeling thing was rubbing across my cheek.

I pulled out the stent in the tear duct!!!!!

I did NOT know there was anything on the outside of my eye. He didn’t tell me!!! (I have three witnesses to that, as daughter and granddaughters were in there yesterday when he saw me) I went into full hysterics, to put it mildly. I called the doctor’s office, sobbing so hard she could hardly understand me. They put me on hold and came back with directions for how to finish taking it out. The doctor was in surgery, so they would call me back if he wanted to see me before my THREE MONTH appointment.

The lady I had sobbed hysterically on the phone with called me back later in the evening to see if I was doing better. I really appreciated that and thanked her profusely. I got her name and intend to write something nice to her supervisor. She said that the Oculoplastic Surgeon would have told me about the thing sticking out of the corner of my eye when I saw him on May 31, almost three months ago! That is WAY too long ago, with lots of doctor appointments and sickness in between. He should have had the courtesy to remind me, particularly since I had told him it felt gritty and irritated to me.

I started this week with a hope that week two post-op would find me feeling better – and I DO, now that I’ve calmed down from the tear duct disaster.

 

Surgery Week One Diary

Day by Day with a Movement Disorder Posted on August 7, 2017 by  

Surgery Monday

I was very pleased with the Callahan Eye Hospital in Birmingham, Al., where my two surgeons coordinated their work and did both the tear duct and frontal sinus surgeries during one session. That was a huge help, as I only had one anesthesia session to recuperate from and one time span to heal. The whole hospital staff were extremely accommodating to my Mitochondrial Myopathy needs. They told me to bring a blanket to the cold waiting room for the time prior to being taken back. (Daughter said she was glad to have it during the long wait for me to be through.) And they kept piling warm blankets on me once I was in pre-op.

I also asked the Anesthesiologist to at least consider using a smaller size intubation tube, as my throat pain after surgery is always much greater than it should be. I think he did that, as my throat has not been as sore as after previous surgeries of late. I can’t be sure about that, because I’m mouth breathing right now, and that’s keeping it irritated.

And, they definitely were very careful to protect my neck with lots of padding on each side, as I have two fused vertebrae, and C7 is more degenerated that it was last year.

They were able to release me, but I was extremely weak when we got home. I did not have to spend the night. We planned on having the walker handy, in case I had trouble walking up the steps. And we certainly needed it. It was all I could do to shuffle my right leg at all – it just would not cooperate. So once I was in the house I sat down in the recliner and didn’t move any more that day, except for bathroom visits. Daughter stayed overnight and hovered over me and took care of anything I needed. I slept well that night.

Tuesday

I was able to move around much better on Tuesday, so one daughter went home and the other one came to spend the day. I had to use an ice pack several times during the day for my eyes and for my nose. The mustache bandage was very uncomfortable. They drape a roll of gauze under your nose and tape it across the cheeks. And you have to mouth breathe. Not pleasant at all. I was expecting this, though, as this is my third sinus surgery in the last two years. The other two surgeries were pretty standard. This one was complicated, so it’s no wonder the surgery took longer, and I feel much worse.

I started testing my glucose levels, but I really wasn’t hungry and didn’t have any trouble with my numbers. I spent the day taking meds and dozing in and out. I used the sinus saline rinse for the first time, but there was so much dried blood up my nose it did not do much good.  But it was a start, anyway.

Wednesday

Wednesday was NOT a good day! I used peroxide on q-tips to clear out all the dried blood in the entrance to my nostrils. And now I can tell why I can’t breathe through my nose – just gurgle discharge. I have a huge set of stents up my nose on both sides. The Otolaryngologist had said he might have to revise my septum again to reach what he needed to do – and evidently he did just that. (I just had the deviated septum straightened a couple of months ago.) These splints are much larger than what I’ve had before – it feels like it’s plastic ribs, shaped like the spokes of an umbrella, shoved up my nose so it spreads the nostrils wide. No wonder I hurt! And no wonder I can’t breathe!!

Not being able to breathe is making sleeping extremely difficult – I only got a few hours worth on Wednesday. My glucose numbers were nudging up a bit, compared to the baseline numbers I had last week. But the range was still pretty good. I still wasn’t hungry, but I made myself eat. I can’t chew anything – hurts where the Ophthalmologist operated on the right eye blocked tear duct. Strange that it was the simple surgery that is hurting, not the major bone cutting done around my eyebrows. Of course I’m still full of pain meds. It might be a different story about what hurt if I were not on them.

Thursday

Thursday was worse. My glucose levels were out of control. I was having to test before and after meals to keep an eye on the numbers. And no matter how careful I was with what I ate – it kept going up. It’s been ten years or so since I had to educate myself about Diabetes, so I had to Google what I needed to do to get it to come down quickly. I drank two glasses of water, did a little housekeeping as exercise, and ate some protein. It came down some – but not enough.

As for sleeping, this was the last day for four doses of the corticosteroid that is causing the blood glucose to spike – I made a decision to NOT take that fourth dose last night. And I took two Benadryl before bed. With that in me I was able to sleep until about 2:30 AM before the suffocating feeling just made it impossible to go back to sleep. So I alternated reading for a while and then trying to go back to sleep. So I did get some rest – but no more sleep.

Friday

I was very relieved today that my glucose numbers were almost back where they should be after breakfast. I still have several days of 3x Prednisone before it tapers off to two a day. I was hopeful it would behave from now on. But I had terrible numbers before and after lunch and dinner again. I had planned on just doing a couple of pricks a day – but instead I’m going to have to buy another round of test strips. I re-opened my myfitnesspal.com account and started planning my meals to get the right amount of sugar and calories. That helped me figure out what probably spiked lunch so badly, so I won’t be eating that again for awhile. It’s getting complicated trying to find soft foods that give me fiber, too. Staying on all liquids is not doing my bowels any good. Insulin resistant starch is my friend right now.

I tried to go to sleep, but the suffocating feeling was just overpowering. So I sprayed two Afrin pumps in each nostril and managed to sleep until 3:30 AM. I was so dry when I woke up I couldn’t get comfortable. Mouth breathing is no fun!

I was able to cut back on my pain meds today. I hope I can continue to decrease that dosage. I had more success with today’s attempt to use the NeilMed sinus rinse, now that the entrance is not all blocked with crusting. And for the first time I felt pressure pain under my left eye when I squeezed the solution into the sinuses. It’s the left sinus over my eye that was seriously blocked with an inch or so of abnormal bone growth. That’s the reason I had to go to the scull base surgery specialist to have this surgery.

Saturday

I still have all the nervous jitters from the Prednisone, almost to the point of hyperventilating at times. Using the sinus rinse is not really helping much. It feels like the water is going up there, but not coming back out. There must be a lot of dis-solvable packing up there that is just soaking it all up. Then I drip discharge the rest of the day. There is still bright red bloody discharge at times, and there’s much less clotting clumps than I had with the other surgeries. So I must be really packed up there.

I’m also still fighting to get good glucose numbers, but they’re not spiking quite as badly as they were at first. Once I find a meal that works, I’m just having that meal again. I can’t taste anything, anyway, so it doesn’t really matter. I can’t smell ANYTHING. I’ve kept Vick’s Vaporub on my nose since I got home, and I have yet to smell it at all. I’m sticking to soft foods, but feeling like I probably could eat something with a little chew to it, if I could just figure out what I dare try.

Even though I’m on a lower dose of steroids, the sleep time is getting worse – not better. A lot of that is coming from the over powering feeling that I’m suffocating – it’s almost like I’m drowning. This must be what water boarding feels like. I’ve tried relaxing breathing, and that helps a bit – but doesn’t last. Then the weird sensation takes over again.

Sunday

Routines are getting a little easier, but I still forgot to test my glucose before breakfast today. So much to remember to do! I did not try to go to church – nowhere near ready to talk to people. Hubby went on without me, and I carried the phone around in my pocket all morning. I did take a long steamy shower, which helped my head somewhat. We have a very nice handicap accessible shower with a chair and plenty of bars, so I felt safe.

We decided to go on out to our usual Chinese buffet for lunch. That was my first time out of the house for the week. I used the MyFitnessPal app to figure out what I could eat – I know exactly what they serve and what I’m used to that would work.

I was not at all expecting to be as weak as I was – even walking from the car into the restaurant was tiring. So I got the soup and sat down, letting hubby get food for me. He is so sweet to me – he’ll do anything to help me. I took care of him when he had his heart attack, and he always takes care of me when I need help. I expected to feel better when we went back to the car, but I was regretting that we had not brought at least a cane. I wall walked all the way down the porch to where we parked.

So I was wiped out the rest of the day. It stayed hard to walk around, with my right foot refusing to lift. I just shuffled along in my socks, holding onto the walls. That’s what I call wall walking – sometimes furniture walking. It’s easier than using a walker in the house.

I didn’t seem quite so wound up and stressed over breathing at bedtime, but sleep was still elusive. I have no idea how much I got, as I was up and down all night long.

Post-Op Week One Summary

I knew this recuperation was going to be much worse than the two sinus surgeries I’m already had – one just a couple of months ago. It was a much more serious surgery, after all. But I was not expecting all this problem with my glucose levels. I’m thankful he had warned me it would be an issue. I also was not anticipating so much of a problem with breathing. I KNEW I would have a lot of trouble with the Prednisone jitters, muscle weakness, and no sleep.

I’m looking forward to seeing improvement this week, as the routines are becoming easier. And I will see both doctors this Thursday. Daughter will take me, so hubby does not have to deal with the downtown UAB traffic and the narrow one way streets on Southside.

I prayed hard to have this surgery, and God worked a miracle to get it done quickly. Without His intervention, I would not have even seen the scull base surgeon until this October!

Now I depend on Him for the healing, doing all I can to promote that healing.

 

Still Improving

Day by Day with a Movement Disorder Posted on January 4, 2010 by  

Well, the Christmas and New Year’s holidays are over, and things are about to get back to “normal” around here. I made it through all the holiday foods without upsetting my stomach again, and I’ve finished the round of antibiotics. So I really can tell that I’m still improving.

I’ve stopped taking the Reglan and also the Nortriptyline for now. One of them was giving me horrible nightmares, and I haven’t gotten back to my usual sleep pattern yet. The Reglan is not to be taken long term anyway, as it can cause Dyskinesia, and I sure don’t want that! I plan to ask the doctor why he put me on the Nortiptyline, since it’s an anti-depressant. So many of these meds have off label uses, that I don’t want to just stop it completely without knowing why I was taking it.

I still am taking the Carafate an hour before meals and at bedtime, and I won’t go back to the supplements and vitamins I normally take until I stop that. It was just too hard trying to schedule all those extra pills and have my stomach empty for the Carafate.

I even managed to lose another pound during the holidays!! That surprised me, because I allowed myself to enjoy meals with family without concern for glucose readings or calories. I guess my stomach has shrunk, plus my eating habits have changed considerably since April 1, 2009, when I started dieting in earnest.

I am now trying to build back my exercise routine. I did Tai Chi yesterday morning for the first time in I can’t remember when, and I used the treadmill for 3 whole minutes. I know that doesn’t sound like much, but it’s an inexpensive manual one that only has the one incline setting, and walking on it for 2 minutes at a time has been all I could muster, until yesterday. I’m such a weakling! LOL

I never have been much for New Year’s Resolutions, but I guess mine needs to be to get back on a regular exercise routine and stick to it. I’ve lost enough weight now that I’m really in need of some toning up. I don’t know if this old body can recuperate from the baggy skin, but I need to try, at least. And I certainly do need to improve my stamina.

I didn’t do a very good job of testing my glucose levels regularly during the holidays. My results page has lots of empty spots in it. It seemed like every day I would either forget to take it, or we would be out of our normal routine, and I couldn’t take it at the right time. We went to see a lot of movies over the last couple of weeks, and I couldn’t take it then. The rest of the times were just negligence on my part.

My Diabetes doctor said I was doing fine and not to be so concerned about the high readings, and I think I’ve succeeded in not stressing over them to the point that now I’m not diligent any more. It’s always hard for me to find balance, and this is just another example. I’ll try to do better in January. I see him at the end of the month, and I guess he’ll do another A1C then. That will tell the tale, for sure, from my holiday laxness. I’m growing more and more confident that my weight loss will eventually get me out of the diabetic range. I know that’s my goal for April, 2010. I expect to have lost 50 pounds by then, and no longer be diabetic.

At my heaviest ever in March, ’09, I weighed 182, and I’m down to 142 now. So I’ve come a long way. I’m totally motivated to get the rest of the 12 pounds off that I set as my goal, and who knows, maybe I’ll lose a few more than that! I know I couldn’t have done it without keeping track of my calories and carb intake daily. There again, the test will be whether I can achieve a balance of right eating without having to count calories when I’m down to 130. I’ll have to watch the scales pretty carefully to keep from gaining it back!

Sounds like I do have some New Year’s Resolutions after all! And I’m sure I join lots of others who plan to eat more healthy foods, exercise, and lose weight this year. I look forward to twenty ten as being a good, healthy year for me!!!!!

One Thing about a Movement Disorder – It Never Stays the Same

Day by Day with a Movement Disorder Posted on December 5, 2008 by 4

We had an absolutely wonderful Thanksgiving together as a family, but of course I was pretty tired afterward. So, as I had planned, I waited until Monday to change back to the Primidone. Not only was I jerking more with the Neurontin, but I had noticed a marked increase in really bad nightmares. To compensate for the lack of sleep at night I have started taking 30 minute naps during the day if I get sleepy.

Adding the extra dose of MiraLax around 5PM in a glass of prune juice is helping keep the constipation at bay at least for now, but the gas is still all but overwhelming. I’m also getting 3 or 4 prunes a day with lunch every day we eat at home.

The nightmares have not stopped, as I had hoped they would when I went off the Neurontin, but at least the jerking has subsided again. I’m going to have to work harder to get my mouth used to the TAP again, so I can get a decent night’s sleep.

I got up about 12:30PM this morning, jerked wide awake by a particularly scary dream, but did manage to go back to sleep about 2AM I guess. Now here I am awake again at 4:30. So I’ll be running on fumes today. At least, since it’s our Date Day I can sleep in the car on the long stretches. I could really tell that less sleep was taking its toll on me yesterday, as I felt old and tired all day.

You know what it is like to sit in a car and tap on the glass to talk to someone outside??? Well, that’s the way I feel these days. I feel like my young self is trapped inside this old decrepit body, tapping away trying to make myself heard. Not a very good simile, but it will have to do for now. My brain still feels like I’m a young woman, but my body seems to get older and older by the moment. All day yesterday just getting up off the sofa seemed to be enough to exhaust me. So I know I need to get better quality sleep, and more of it, too.

We’re in our Christmas rush time for selling our Plush Animals and Dolls, so that keeps me moving, whether I feel like it or not. Hubby tries to leave all the getting of items out of inventory up to me, as it forces me to move around more than I probably would otherwise. I get all the packing materials together, print out the packing slip, and weigh the package. Then I print out the postage.

But then he takes over, double checking that I have the right toy going to the right person and checking to be sure everything is as it should be. He seals the packages up and puts the postage on. I was making too many mistakes, and this seemed like the best way to keep me active both physically and mentally, and still not get so frustrated with every mistake I was making. It makes me so mad when I can’t find a toy in the box it should be in. We have had to refund money several times because I couldn’t find a toy that my records showed we should have in stock. Keeping track of all the “paperwork” gets to be overwhelming at times, but I know it is keeping my brain active.

I was very pleased with myself about one thing I accomplished this week. I have noticed that it is very hard for me to learn how to do something completely new these days. So I was very happy with myself when I successfully followed the directions to make some java script to use on our Shopping Cart page. Yeah Yeah… I know that’s geek talk, but it is important to me, because I have never done any writing of java scripts before. I learned how to do something totally out of my realm of expertise. I’m patting myself on the back for that!

I continue to do my morning exercises, including my own version of Tai Chi for the balance impaired, although I didn’t do any this morning. Just getting in and out of the car and walking around at the sales today will give me plenty of exercise for today. I will do my neck exercises, though, as usual. They don’t take long and I sure don’t want that frozen painful neck situation to come back if I can help it.

So, this week I have felt terribly old and decrepit, but also beaming with pride at my successful creation of some java script code. I’ve changed back to the Primidone and the jerks have settled back down, and at least for now I have the constipation under control.

All in all, I’d say it’s been a good week.

YARD SALE today!!

Day by Day with a Movement Disorder Posted on November 1, 2008 by 7

Well, I’ve worked myself ragged this week helping move things out to the garage for our big yard sale, and now comes the moment of truth! Did we set the prices too high? Are they too low?? Should be a fun day, with beautiful weather.

Once hubby decided it was time to have one he really got busy, and there’s no way I could have done this on my own. I’m pretty sore from helping to move furniture around, plus lots more walking and lifting than I have been used to. It’s been good for me, as long as I didn’t over do it. Only time will tell on that one.

We managed to get quite a few of the boxes from my parents’ house out there, so that will free up some space in the house. Anything to cut down on the clutter will make it easier to get the rest of the last couple of years accumulation of stuff under control. I just have not felt like cleaning, and poor hubby has been doing the best he could to take care of me and take care of the house. I won. House lost. I’m sure not complaining, as he has done all the laundry for years, fixes meals, and waits on me like I was a princess. He’s the love of my life, and no one could ask for a better helpmete.

We swapped out recliners, bringing my mother’s recliner in the house and putting mine in the yard sale. Hers is a much smaller frame chair and really opened up the living room. I’ve slept in that recliner for several years taking care of Mama and Daddy, so I know how comfortable it is. It was a chore to make the swap with such bulky furniture, but I am glad we did. That is as along as our backs don’t complain too much!

We went to the dentist this week for our regular cleaning appointment, and this was the first time I had been back since the new meds and new diagnosis. I was fine until the next day, when I woke up with a very sore jaw. The muscles on both sides were aching from keeping my mouth open so long. At one point yesterday the right side started up with spasms. It was weird, because it made my eyeglasses move! I yawned some big yawns and did some exaggerated mouth stretches and managed to get it to stop, but that was another first for me. I hate to think what it would have been like if I were not on the Primidone. I probably would have bitten her hand off right there in the dentist chair!!

I’m back to the early rising again, and the change from Daylight Savings Time tomorrow is going to play havoc with my sleep for awhile, too. I get a lot done in the wee hours of the morning, but it sure makes me sleepy early in the evening. I’m like a baby getting my days and nights mixed up. But no amount of just laying there will help me go back to sleep, so I might as well get something productive done with my time, right?

One other thought before I put this rambling post away. I made the signs for the Yard Sale, and was very pleased with the results. It’s amazing how steady my hand is now compared to the way it was before the Primidone. I took drafting for 3 years in high school and taught handwriting in elementary school, so neat printing is something I used to be very good at. I had reached the point that my handwriting was difficult to read, let alone pretty. But this week I was able to free hand draw the letters and then go over the lines with a Sharpie and keep the ink where I wanted it!!! It was a wonderful moment for me, because it says so much about how much I have improved over the last few months.

Well, I’ve rambled on – not too surprising considering I’ve been up since 2AM – but feeling really good about my accomplishments this week. It may take a year, but I am going to win out over this messy house!

Didn’t Know that Dry Mouth is Something to be Concerned about

Day by Day with a Movement Disorder Posted on October 29, 2008 by 2

I had my normal cleaning appointment yesterday and was careful to give my Dentist the new diagnosis and meds I was on. I told him that I had read that it was particularly important that I tell him I was on Triavil. I had assumed incorrectly that the caution had to do with using gas for dental work. But my dentist says that is not the reason for needing to know about it. He said that any meds or conditions that caused a dry mouth left the teeth much more open to rapid decay. It seems that saliva does a lot toward keeping the mouth bacteria population under control.

He suggested a Fluoride mouth wash, but NOT one that had alcohol in it. And he said that may be too strong for some people, and that it could cause gum irritation. There were alternatives that he could offer, but not over the counter products. So I will try this first and see how I do.

I told him that I had stopped using the TAP device, since the change in diagnosis, and because I was leary of using it while my GERD was acting up so much. I could not chance gagging and choking on the reflux acid that would back up into my mouth.

It did seem to stop the mouth breathing for a long time, but I have not been sleeping as well just lately, so I was thinking about trying it again. He said I needed to use it at least once a month regardless, because teeth tend to move ever so slightly over time. If I didn’t wear it often enough it would reach the point that it did not fit any longer. And I certainly don’t want to spend that money again sometime in the future, when I could have prevented it.

So I’ve been up most of the night tonight, just the way I used to do. This has been gradually coming on for the last few weeks, but tonight was the worst it’s been in a very long time. I’m actually wearing the TAP right now. We decided it made more sense to wear it for awhile while I am awake, until my mouth gets used to it again. Right now if feels like I have some huge thing in my mouth, but I’m sure it will become much more comfortable, just the way it did last time, if I work at it.

I have been noticing an increase in the way my brain and emotions cannot handle any kind of time pressure, no matter how slight. And every time I try to fool with those stupid Digital Converter boxes and try to tape a program it really shows up big time. I was so frazzled last night trying to get it set up to tape a program that I don’t think I could have told you my name!! It’s a horrible feeling, and one that I prefer to attribute to the med side effects, rather than a true sign of dementia onset. It’s hard to get that thought completely out of my mind, though, after caring for my mother so long before she died with Alzheimer’s. As I have mentioned in some other posts, my family’s neurological history is not pretty.

I’m continuing to try to up my activity level a little bit each day, but I still can only work in short spurts. After that I need to do something sitting for awhile, which for me usually means working on the computer.

And I’ve gone back to doing the neck exercises each morning (I wasn’t supposed to stop), since I’ve been getting the tingling nerve signal again that means the degenerated cervical disk is pressing on a nerve. I don’t want to end up in the stiff and painful situation I was in earlier this year, so for now at least I’m being a good girl and following doctor’s orders. It’s just hard to make myself faithfully do them when I’m feeling good. Yes, that’s childish and foolish. Guilty on both counts. But I’ll try to be better about continuing them this time, even when it stops bothering me.

It takes at least 21 times to build or break a habit, but it’s worth the 21 days to have a better Quality of Life!! So, old habits have been revived, and hopefully continued. This will give me something positive to work on each day.

I intend to ENJOY this Holiday Season, and not just survive it, the way I have the last few years.

Decided to Go Slowly with Triavil

Day by Day with a Movement Disorder Posted on September 13, 2008 by  

I intentionally waited 24 hours after stopping the Bentyl before starting the Triavil, just as a precaution. As far as I could find the Bentyl has a short half life, so that should have been enough to get it out of my system.

The problem is …. I always try to do as much research as possible with any new medicine I take, and the more I read about the possible side effects of Triavil, otherwise known as Elavil, the less I liked it. By last night I was very upset about it and almost decided to call my Gastro today and tell him I didn’t want to take it.

But I did find that it was used off label for Irritable Bowel Syndrome, and also for Insomnia. He would be prescribing it to me for IBS. I did not like the fact that it is an antidepressant. In fact I got pretty depressed last night just thinking about going on it. I found one place that said that the dose is much lower when used for IBS than for depression, and that did make me feel better.

The PDR said it would possibly make me sleepy, dizzy, or groggy, along with a bunch of other possibles that I don’t even want to write down. So … after much research and a lot of miserable hours I decided to take the night dose right before bed and see how I felt today.

Well, it did make me groggy this morning – that odd medicated feeling that’s not quite woozy, but not quite right, either. That lasted until close to noon, so I will just stay on the night dose for several days and see how I do. Eventually I am supposed to take it 3 times a day. But I’m in no hurry. Tardive Dyskinesia is in the list of possible side effects, and that doesn’t sound good at all!!! So for now it will be no more than 10 mg for me.

As for my digestion? I’m still hurting, and I felt lousy today, but we did go out on our Date Day. We came home early, but I would rather have done that than not go out at all.

Only time will tell how this plays out.

Re-Testing Peripheral Neuropathy Monday

Day by Day with a Movement Disorder Posted on March 1, 2008 by  

I see the MDS specialist the first week of April, so it seemed like a good idea to ask for a Neuropathy test before I see him. When I first saw my Neurologist, it was at the suggestion of my Orthopedist, who had concluded that my super labored walking was not caused by lumbar disk pressure.

He sent me to Lakeshore to have the Nerve Conduction Velocity Test, which uses patches like those they stick on the chest to check for heart problems. They pass an electric current and check to see how long it takes the message to register between the patches. It’s uncomfortable at the time, but not really too bad. The other test is called Electromyography. That’s the one where they poke electrodes the size of needles in your muscles, and it is supposed to show how well the muscles respond when the nerve is stimulated. That test is not at all comfortable. I actually had little pin prick size blood spots all over my legs when that one was over.

Anyway, the results showed definite Axonal Peripheral Neuropathy, mostly in my right leg. Because I was having trouble walking, and the test order came as a result of my Ortho dealing with my back and legs, he did not order the test to be done on my arms as well.

My Neuro was not at all happy that he did not have results for my arms as well as my legs, but he proceeded with the info he had, as my insurance would not likely have paid for a repeat test so soon.

So, I talked to his nurse a couple of days ago, and I’m scheduled to have the complete PN test battery Monday, at my “suggestion” – translate that as strong urging. This test is very uncomfortable, but it seems to me I need to get any tests done now, not wait and “waste” the visit with this very hard to see Head of Neurology at UAB.

I’m still experimenting with any variables I can think of. so, for the last four days I have not used the TAP dental device, which is to control my mild Sleep Apnea. The mouth tics started about the same time I started using the TAP, and I’m trying to be sure that this off and on again mouth twitching I’ve been doing is not being aggravated by the mouthpiece. Surprisingly, I’m still sleeping 7 or 8 hours a night, even without it. I think it did break me of the mouth breathing habit, which may be the cause of the relaxed jaw that was allowing my throat to close up during sleep.

I have noticed a definite correlation between the mouth twitches or tics and how stressed or tired I am. So they get worse as the day goes on. If I stop to think about them, I can stop them momentarily, but it’s as if my mouth is determined to move, no matter what I do, and it soon starts back up again.

I figure I’ll make sure Monday that there aren’t any other tests I should have done, or repeat, before seeing Dr. Watts at UAB. I have to call his office to change my insurance information to show that Medicare is my Primary insurance now, as this is the month I turn 65. So I will talk to his nurse and see if they suggest any other tests. I have learned to be proactive in such situations. It amazes me that doctor’s offices don’t initiate this kind of pre-visit planning, but they don’t.

By way of contrast, when we made an appointment with a financial counselor to help us with investing my inheritance, we received a huge packet of papers to fill out and a long list of documents to bring with us for our first meeting. That’s the way it should be with doctors, in my opinion.

So, I will do what I can to document everything and have everything ready for this crucial visit. I can’t even talk to someone about Long Term Care insurance, or anything insurance related, until I have a diagnosis. No insurance company in their right mind would take me on as a customer right now.

Tax Time is looming, and that’s one thing I am dreading doing, but I can’t put it off much longer. Oh, did you know that people who file an extension will NOT receive this stimulus package $300 thingy they all keep talking about? I have always filed on time, but I know some people habitually delay it, and might need to know that.

I continue to work to get our inventory of plush lovies online, and we have managed to help several families get replacements for lost toys lately, which is extremely satisfying. I’m also helping to beta test a new Mood community on Patients Like Me, and finding the charting of my own moods to be interesting.

I may be twitching, but I am in a good mood today, and that’s a great way to end this post.

Physical Therapy Continues

Day by Day with a Movement Disorder Posted on January 7, 2008 by 6

I’ve been to a couple of PT sessions now, but all they have done so far is do the ultrasound and the TENS. My neck still gets very painful, if I have to sit for any length of time unsupported, such as at meals and at church, but already it is more flexible than it was. I see them today, Wednesday, and Friday. We went out last Friday for our Date Day after I finished the session, so I guess that’s the way we will do it for awhile.

I goofed on my medicines last week and put the Sinemet and Lodosyn in the boxes, as usual. That’s what my Neurologist told me to stop taking, and I forgot! No harm, really. But I made a big time bad mistake when I filled them this time. I put 4 diuretic pills in, where it should have been the colon relaxer pills!! I didn’t catch it until that night, when I take the last Bentyl by itself. That’s when I realized it was the wrong color pill. Makes me so mad at myself when I mess up like that. I’m just thankful I didn’t get into trouble with all that diuretic in me!!!

I started this post on Monday, but the interview I did last week about our Plush Memories Lost Toy Search Service was included in an msnbc.com article that published yesterday. So, I spent most of the day reading requests from families who are looking for lost lovies, and writing everyone to tell them about being featured in the article. I was on cloud nine all day long. We were able to connect two of our searchers with families who had the toy they needed, and were willing to give or sell it to them.

I got mixed up on the timing for my meds again, but not too badly this time. It’s just aggravating that it happens at all. I think it’s a Freud thing going on – I’m just sick and tired of all these meds, no matter how much I know I need them.

I’m tired today, too, because I stopped using the TAP for a few days, thinking that would help my neck to settle down. Of course that also means I’m not sleeping as many hours. I figure do without it one week, and if that is going to help, that would be long enough to see a difference. I will use the TAP again this weekend, or maybe next Monday, one way or the other.

The excitement of yesterday has calmed down now, but I am trying to stay upbeat, hurting neck or not.

Sitting MRI and a Full Night’s Sleep

Day by Day with a Movement Disorder Posted on December 13, 2007 by 2

Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won’t find out anything until next week probably. I’m guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I’m not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It’s been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn’t the medicine after all for me. I was just sleep deprived!

It’s so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.