A Weary Day Today

Day by Day with a Movement Disorder Posted on by 1

My legs have been dragging all day today, and I’ve been sighing a lot. I’m just tired all over, and I’m not exactly sure why. It may be the Dyflucan tablet I took last night that’s doing it. I hope it’s something that simple. I’ve been through two bottles of Nystatin, and I still have a little thrush on the back of my tongue, and the rest of my tongue is still coated. All this as a result of the high powered antibiotics it took to knock out the colitis I had up until a few weeks ago.

I had planned on going to church tonight, but it started raining a little before it was time to go, and DH was reluctant for me to get out, after being so tired all day. Oh well, I’ll try again next Wednesday.

First Dream / Difficulty Walking

Day by Day with a Movement Disorder Posted on by 2

I had my first dream last night in which I was walking the way I’m walking now. The “me” in the dream was very old, but it was definitely me, and the walk was definitely my walk. I would have thought my dreams would have continued to be of my normal walk. I’ve wondered before if quadraplegics’ dreams had them walking or not. Now I guess I know the answer to that one.

I woke up super early this morning. I’m hoping I can blog for a little while and then go back to sleep, but that remains to be seen. Right now, I’m not even yawning.

Glory to GOD!!

Day by Day with a Movement Disorder Posted on by  

Yesterday was a particularly good day for me. I’m proud of myself for overcoming my inhibitions about using the walker. I found that the people at church were more understanding about my saying I wasn’t worse, that it was just for safety and to make things easier for me, than I had expected.

The worship service and Sunday School blessed me more than usual, and I just felt particularly close to God. I keep a running dialogue with God going all day long, as a usual habit, but some days it seems more like a monologue, if you know what I mean. Yesterday was one of those special days when everything just seemed to ooze God’s love for me, and I’ll be remembering it as a landmark for a long time, I’m know.

Today, my legs are tired, as we did more at church yesterday than usual. Even with the walker, it was a lot of walking. If I had not used the walker, we would not have been able to participate in all the fellowship activities of the day. That would have been a shame.

It’s strange that I should be writing this when one of Ruth’s post at Wheelie Catholic today is about people with disabilities being included in church. She emphasizes that inclusion involves the disabled person actively being involved in church activities, something I had all but dropped out of, partly by medical necessity, and partly by convenience (read that just too easy to stay at home).

My DH has been really patient with me, as he’s a Deacon and very rarely ever misses a service. He hasn’t tried to push me into going when I wasn’t ready to go, and I really appreciate that. But I know he’d much prefer that we go together, the way we always have. Now that I’ve had a taste of the sheer joy of group worship again, I’m going to try harder to not let laziness get in the way of going all the time, or at least most of the time.

NOT Stupid Walker

Day by Day with a Movement Disorder Posted on by  

I swallowed my silly pride and used the walker at church this morning. After the first few people stopped me to ask if I was worse, and I assured them I wasn’t, I got used to it, and it wasn’t so bad after all. It really did make the long walk from the car to our Sunday School room soooo much easier. I can walk more naturally with it, too, which should help my muscles get back to a normal gait, I hope.

I realize now that I should have been using a walker for the last few months, but Dr. B is the only medical person who has told me I should have one, so I figured I wasn’t bad off enough to need it. And he didn’t just tell me, he fussed at me big time. Now I’m glad he did!!

Is My Mind Playing Tricks on Me??

Day by Day with a Movement Disorder Posted on by 2

Another reason I’m afraid of using a walker in public is that I’ll be setting myself up for future embarrassment. I’ll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, “sleeping” in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she’s doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don’t you think?? Oh, and before you jump to a wrong conclusion, dear reader, she’s adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer’s, my DH with cancer, and have had surgery myself, besides taking care of our DD. I’ve also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he’s amazing!

My family will understand if I am suddenly “cured”, because it turned out to be all in my mind, and not a physical problem. I’m not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn’t “need” it.

Stupid Walker

Day by Day with a Movement Disorder Posted on by 10

Dr. B made me promise yesterday that I would get a walker, and I know he’s right. I’ve just been putting it off as long as I could, hoping I’d get better on my own.

Well, I haven’t, yet.

I know I’ve been silly about it, but I’ve been resistant to the idea to be seen in public, particularly at church, using a walker. It’s stupid, I know, but it’s like it’s an admission that something’s really wrong, if that makes sense.

Anyway, once I finally wrapped my head around the image of me using one, I remembered someone at church whose mother had used one before she died, and I’m borrowing that one. Somehow, borrowing one doesn’t seem quite as bad as buying one. It seems more temporary.

It’s been funny trying to learn how to use the scooters at the grocery store and at Wal-Mart. That doesn’t seem to bother me, because I get up and walk to the car. And, besides, they’re fun!! LOL

I think part of the reason I don’t want to “give in” to the walker is that people will see me differently. Before I was just walking really slow, now they will think I’m worse, when I’m really not. It makes me feel really old, too, and I don’t like that feeling, either. I may look old, but I don’t feel old inside, doggonit!!

My Other Problem

Day by Day with a Movement Disorder Posted on by 2

Part of what has made diagnosing all this trouble walking so difficult, and has slowed down being able to deal with it, is that I have finally finished an almost 4 month long battle with the dreaded diarrhea. Once I was finally diagnosed with colitis and put on some very powerful medicines, I did start to improve. But by that time I had already fainted, had stitches in my head, and gotten so weak it was all I could do to walk at all.

The walking difficulties came before the colitis did, though, so the basic problem still exists. Even now that my digestive system is getting back to normal, I still can’t walk normally.

My Gastroenterologist, Dr. B, is beginning to taper me off of some of the high powered medicines he had to use to get my system under control, so that may help me walk better, too. We’ll just have to wait and see. I’m to cut one pill back for the next 7 to 10 days and let his nurse know how I’m doing. Based on what I tell her, she’ll give me instructions on what to cut back on next.

I was able to map out an Estate Sale/Yard Sale shopping tour for us today that didn’t involve a whole lot of walking, and we both had a great time. Friday has been our Date Day ever since we retired, and it sure was nice to spend most of the day normally, even if I did have a doctor’s appointment.

I was hoping we would find a walker, but we didn’t. Dr. B fussed at me for not using one, and I told him we’d been looking for one. He made me promise him that I would get one, so I guess we’re buying a walker.

Nothing in My Brain!!

Day by Day with a Movement Disorder Posted on by 2

We got the MRI results today, and everything in the brain scan looks normal!! That’s a big sigh of relief for both DH and me, as we’ve neither one said the words brain tumor out loud, but we’ve both been thinking it, and I’ve been Googling all sorts of possibilities.

I just made the follow up appointment, and that’s going to be another two week wait. That’s the most maddening part about this whole process – all the waiting. But I was determined to get the very best Neurologist we could possibly get on our insurance list, and that means a busy, busy doctor. It’s kind of like a restaurant with no cars out front at lunch time. You wonder what’s wrong with the place. You may have to wait a while at a good restuarant, but the wait is worth it.

We went to the Thrift Store today. It wore me out, but I sure did enjoy getting back to a normal routine and getting out of the house. We also visited for a little while with a lady from church who’s in the hospital, so I’ve had a full day today.

Yippee!! We both can breathe a little easier tonight!!

Went to Bed Early – Woke Up Early

Day by Day with a Movement Disorder Posted on by  

It’s so aggravating when my sleep schedule gets mixed up like this. I made myself stay in bed until 5 by the hardest, but I had the beginnings of a headache by then. I took 2 of the Tylenol arthritis pain meds, so my neck wouldn’t bother me all day and got up. Now I’m on the computer and yawning. Go figure.

Anyway, my legs and back were aching some last night from all the walking yesterday, but other than that, I’m OK. I did have a little trouble after the MRI yesterday. I was very wobbly after the test and had to ask for some steadying help to get back to the dressing room. DH knows me well and had a bag of M&M’s waiting for me, so I finished the Powerade and ate the peanuts and by then I was OK. We stopped and got one of the new Chick Filet’s chocolate shakes on the way home, too. He knows how to pamper me.

I did some research on brain tumors last night. I really haven’t allowed myself to think in that direction up until now, but getting the brain scan kind of pushed my thinking that way. Knowing I’ve been diagnosed with an angioma in the past, plus having the increased cerebral spinal fluid before, makes it much more of a possibility. We won’t know anything until maybe Friday, so I’ll just stay busy today.

Uncle Bill

Day by Day with a Movement Disorder Posted on by  

I need to remember to tell Dr. S about Uncle Bill, Mama’s brother, because he died of Lou Gehrig’s Disease. I know that’s not what I have, but he still needs to know it. Mama was originally diagnosed with Parkinson’s, which I did tell him, but that was later changed to Alzheimer’s Disease. Trouble is, she never did have the tremors. Now that I’ve seen what a real Neurologist does in the way of diagnostic testing, I don’t think that first diagnosis of Parkinson’s was even valid for Mama. It may well be that I have the same thing she had. That remains to be seen, but it just may be that this is genetic.