Tag Archives: Sunday

I’ve Been OFF the Ulcer Antibiotics for a Week Now

Day by Day with a Movement Disorder Posted on by 2

Well, I’ve been off of the PrevPak high powered antibiotics for my ulcerated lower stomach now for a week, and I am not feeling good at all. I had hoped once the meds were out of my system that my energy level would pick back up. But my stomach still feels heavy and sometimes there’s the same dull pain. I just don’t feel good. Nothing I can really describe … one of those you know it when you see it kind of things. I’ll keep on eating a little something with each dose of pills, and I’ll be calling the Gastro this next week for sure.

We had a very sad occasion at our church this week. Our Minister of Music passed away from kidney complications after his second heart transplant surgery. We did not go to the funeral, which was huge. He was well known all over the state from long time service in many churches and choir functions. I just was not up to the crowd. And I did not go to Sunday School today either. Our class is about half choir members, and I knew they would be so upset. I can’t handle my emotions at all any more, and it makes me jerk and shake when I get upset. So hubby came back and got me for church. It was a beautiful worship service, but as the Pastor said – Everyone was in a fragile state right now. I’ve never been in a church where a staff member died. It was almost like a continuation of the funeral service in a way, except more joyful. After all, we know he is well and happy now, although people close to him personally still grieve for his loss here on earth.

It does help to put my aches and pains into perspective, though. So I feel yucky. I can still get up and move around the house easily enough, and I can work on the computer as much as I like. I enjoy helping people on the Lost Toys Search Service, and it’s fun to get sales from our website and on eBay. I enjoy hearing from our children and grandchildren, and I have the most wonderful hubby any woman could ask for.

I am truly blessed by God, and I can’t thank HIM enough for all the blessings he has given me over my lifetime.

Misery Loves Doesn’t Love Company

Day by Day with a Movement Disorder Posted on by 12

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be “normal” for a little while so badly that I didn’t care that it would cause a fight. He won’t let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist’s couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I’m taking a med to stop some of the very things it will give me – doesn’t make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can’t control the left side of my face, but it’s actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I’m crying at almost everything right now, and can’t stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of “his” kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn’t take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don’t think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I’ve completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I’m trying very hard to stay busy and focused on something besides me, but it ain’t workin’!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It’s real, and I’m not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

Daddy Stayed in the Bed All Day

Day by Day with a Movement Disorder Posted on by 2

Today was Frances’ day to stay with Daddy, so we could go to church. As it turned out, I was just too tired to go, and stayed home and slept until DH returned from church.

Frances called before he left for church, though, to say she wasn’t comfortable trying to get Daddy out of the bed. She had tried, and he was just too weak. So, she sat with him in the bedroom, changing his position, feeding him, changing Depends, all day long.

When we took over this afternoon, I had him go through some mild therapy exercises, just to see how stiff he was from being in the bed. He seemed to be moving OK, and said he didn’t hurt anywhere. His heels are hanging off a pillow, so they’re taken care of. His bottom looks no different than it did, certainly no worse. He even let me feed him oatmeal tonight. That’s the first time I’ve fed my Daddy a meal, since he had his pacemaker surgery over 15 years ago. He surprised me by being willing to let me do it. Since there really wasn’t anything for two people to do, once he had fixed the oatmeal, I sent DH home early tonight. No need for him to sit in this hot house if he doesn’t need to.

We listened to the Super Bowl on the radio, and Daddy stayed awake until it was over – way past his usual bedtime. He made several remarks about not being able to find his bed, so I went through the whole explanation of which bedroom he was in, and this is his house, the whole thing that gets repeated night after night. By the time the game was over, he seemed content that he knew where he was, and promptly went to sleep.

It’s after 10, and I’m beginning to yawn now, so I’ll finish up and try to get some more sleep. Hopefully, tomorrow, Daddy will feel like getting up, and will be strong enough to do it.

Christmas Eve

Day by Day with a Movement Disorder Posted on by 8

I continue on the full regimen that the Gastroenterologist has me on, so far with little success. I did manage to eat a baked sweet potato last night without any pain afterwards, so I consider that an improvement, anyway. They are full of vitamins and fiber, so they make a good small meal for me right now.

We went on our Date Day Friday and bought a few things at the only Estate Sale open in the whole city! By the time we got there they weren’t crowded, and much of the stuff had been sold, but we did manage to find a few little things that I think will sell well. Plus, I have a thing for real hankies. I can’t stand to use Kleenex tissue! I like a real, soft, cloth handkerchief on my tender nose. So we’re always on the lookout at such sales for old hankies, and we found what appear to be some brand new ones. I was glad to get them.

We piddled around a few hours at the nearest Thrift Store and at Walmart, ate a grilled chicken sandwich at Chic Filet, and then we went to see The Nativity Story movie. I thoroughly enjoyed it. The scenery and the detail of all the activities going on in the background are supposed to be very authentic to the time period, so I found that part fascinating. As to the plot, they did a good job of presenting the whole thing in a believable way, clearly portraying the disdain of, and even shunning by, their neighbors of this young couple who had “not waited the alloted time before having sex.”

The harsh journey to Bethlehem was dramatic, but maybe a little too long time wise, but certainly worth it for the story line. It was a relaxing few hours that helped to emphasize the true meaning of Christmas. I was very glad we went to see it.

Being able to look forward to these times to “escape” care giving have been a Godsend. It’s funny in a way. The lady who stays with Daddy for us lives with her own elderly mother. She’s always glad to be able to get away from her for awhile! LOL! And here we are, paying her so we can get away from Daddy for awhile. But Daddy never asks her to do anything. As soon as she’s gone, he starts in with his list of things for us to do. It’s really funny, as long as we’re rested and in good humor.

So, here I am, in the early hours of Christmas Eve morning, writing this post. Frances will be coming this morning, so I will get to go to church today, thank goodness. I need that right now. I’ve missed my church family lately more than I realized, but we’ve always been regular attenders, and I’ve been out so much this year with my own illness, and now Daddy’s, that I’m losing my connection to them. God meant for us to assemble ourselves together, and not to worship alone all the time.

So I’m looking forward to seeing my friends in Sunday School and worshiping together in Church today.

May God shower his blessings on each of you through this coming year, and may the Glory of the Christ Child shine all around you. Amen.

Same-o Same-o

Day by Day with a Movement Disorder Posted on by 6

I did go to church Sunday morning, which was a pleasantly normal thing to do, but my stomach acted up, as usual, so I really didn’t get to enjoy the afternoon. I did get a good bit of rest, though, which I certainly needed, but I’m still not getting more than a few hours sleep at night. The Ambien just isn’t working for me.

Today has been pretty much a repeat of many others, with the accompanying stomach bloating and cramps. I’m being just as careful as I can with what I eat, and I’m not having any bathroom problems, so I have to conclude that this is due to the Parkinson’s itself. Just like my legs were moving so slowly before I was on medicine, evidently my digestive system muscles are also moving very slowly. The regular Parkinson’s meds don’t work on these involuntary muscles. That’s what the Zelnorm is supposed to be helping, but I don’t really think it is. And, thanks to how lousy I’m feeling, I’m losing a good bit of weight.

So it looks like I’ll be moving my Gastroenterologist and Neurologist appointments up sooner, if possible, as I’ve had about as much of this stomach trouble as I want to put up with.

Another Day Goes By

Day by Day with a Movement Disorder Posted on by 4

Thank goodness the headache was gone yesterday. I can’t say the same for the cramping tummy, though. I started out OK enough, but Daddy had a bathroom accident, and cleaning him up really unsettled my stomach. I managed pretty well while the cleaning was being done, holding my breath a time or two, but once everything should have been through with, then I started feeling nauseated. I spent the rest of the day with the hot pad on my stomach and abdomen, trying to ease the cramping.

I’ve checked my blood pressure, too, thinking that might have something to do with how bad I’ve been feeling. Sometimes it’s been too high, like 144 over 80, but most of the time it’s been just fine. I keep getting these fleeting feelings of lightheadedness or dizziness, which could just be due to tiredness, since the BP is usually OK.

At least I did accomplish something yesterday afternoon. DH wanted me to go to the house for a couple of hours, just to get away, but I really didn’t feel good enough to want to move. So I told him to just pretend I wasn’t here, and I’d rest where I was. So, while he took care of Daddy, I did the research and wrote the descriptions for 5 baby toys to put on eBay just as soon as I can get the photographs taken.

I’m looking forward to Francis coming this morning to give me some more time away from Daddy. That should help. If my tummy seems OK after breakfast, I’ll go to church. If I’m still uncomfortable, I’ll probably just stay home and rest. Whatever I do, being at home or at church and away from the care giving responsibility momentarily will do me good.

Hopefully, I’ll feel good enough to get the photos of the toys done, so we’ll have some items on auction this week. This should have been our busy time online, but under the circumstances, there was just no way to make that a priority. After all, it’s only a hobby, but it’s a hobby that gives me a lot of pleasure, and I need that release right now, too. So I have to balance my time and energy to keep myself as calm and relaxed as possible and still be helpful with Daddy. It’s not fair to DH for him to end up doing everything, particularly since Daddy is such a pain to deal with most of the time.

If anybody’s BP is high, it would be my DH’s, who finds himself constantly stifling the urge to come back with an equally sharp remark, after Daddy has said something particularly insensitive or controlling. He’s always been that way, although I know he loves me, and for the most part I can let it go in one ear and out the other. But DH is overprotective of me, and Daddy makes him mad now.

Continuing to Feel Good

Day by Day with a Movement Disorder Posted on by 2

I felt better for a Sunday than I have in some time. All the exercise is beginning to pay off, I think. Usually, by the time I’ve cleaned up after Daddy and fixed his cooked Sunday morning breakfast, I’m already tired. Then the long sit through Sunday School and Church just leaves me drained for the day. That didn’t happen yesterday. I had plenty of energy. My body still cramped some in church, but not as bad as usual. I’ve stopped carrying the cane to church, too, so I’m feeling much more normal. Everyone’s still good to ask about me and let me know that they are praying for me, which I really appreciate.

I didn’t do so good a job of staying off the computer yesterday, even though I really did mean to. This is going to be a hard habit to change, and the difficulty of it just convinces me that it has reached the compulsive point. I’ve gone through all my usual daily computer tasks already this morning, and I’ve taken a set of pictures for an eBay listing already, so at least I’m being a little more efficient.

We’re taking Daddy to the Podiatrist today, so that will get me away from the computer for awhile. I’m going to see the Podiatrist, too, this time. I made the appointment several months ago, thinking I would keep it if the diagnosis was Parkinson’s and cancel it if it weren’t. What with the Peripheral Neuropathy, and some very deformed toenails already, it just seemed like a good idea to touch base with him. Daddy sees him every three months, as he’s a diabetic, but I don’t expect to see him but maybe once a year, unless he tells me otherwise.

I’m noticing a gradual weight loss, which suits me just fine. I’ve just about cut out all sweets, and my portion sizes are much smaller than they used to be. I really don’t feel like eating very much at one time any more. I’ve cut out the in between snacks, too, for the most part. And the meal at night is usually very small – sometimes only a banana. I just don’t get hungry at night any more. We eat our big meal at lunch now, and my dear sweet hubby, who does the cooking, makes sure it’s a very nutritious meal. I’m overweight, anyway, which puts extra strain on my legs and balance, so I hope to continue to lose weight gradually for some time.

Still Puny Today

Day by Day with a Movement Disorder Posted on by 5

I wasn’t as sick today as I was yesterday evening, I don’t think, but I still felt pretty rotten today. I really didn’t feel like trying to go to church this morning, and we didn’t have the service at our church this evening, because it was the Fifth Sunday Singing. That rotates around among the churches in the area, and I wouldn’t have gone to that, anyway.

I’ve tried to do the research on the Internet today, to decide if it’s the Sinemet or the Requip doing it, since I got sick Saturday, after I had upped the dose of Requip on Friday. The dose is pretty good sized now, so it may be the Requip. That makes me think I need to call the Neurologist, rather than the Gastroenterologist, in the morning. I don’t think I can wait until my Thursday appointment. I’m losing weight awfully fast, because I’m really eating very little. I just don’t feel like putting anything in my stomach right now. It’s much too uncomfortable. And I’m getting weak again, too.

I’ll be glad when this whole medicine regimen is worked out, and my digestive system settles down!!

Oh, another side effect is definitely showing up. I’ve suspected it for some time, but now I’ve let enough time go by to be sure — I’m beginning to lose my hair. I wear it really short anyway, so it’s not going to be long before it’s noticeable on top. But this is a vanity issue, and doesn’t effect my ability to eat or move or anything important, so I can live with it, even though it would have been nice if this particular side effect had passed me by.

Telling People I Have Parkinson’s

Day by Day with a Movement Disorder Posted on by 6

Today in Sunday School I told my friends that I have Parkinson’s. There were a few gasps, and a few saying at least now I know what’s wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be through with our care giving when my Daddy finally passes, bless his heart, but now it will just start all over again for him at some point in the future.

We can only hope that new medicines and maybe even a cure will be found by the time I am at the stage of needing full time care. I choose to be optimistic and believe that the meds are going to delay the debilitating stage for me for a long time. I am exercising and eating well balanced meals, as well as getting plenty of sleep and drinking plenty of water, too. I hope to be starting the Tai Chi classes soon, as well. If there’s anything more I can do, I will do it. And above all, I know that God loves me.

I’ve already told my dear sweet hubby that I don’t expect him to keep me at home the way we were able to keep his dad and my mother. He will be a lot older and he’ll be doing it by himself, so there’s probably going to be a point where he just can’t do it all any more. I wanted him to know that I understand, but it just upset him to hear me talking about it, and he made me change the subject. I’m going to be praying a lot for him, that he will be strong through all of this. I love him so much.

Looking Forward to Doctor’s Appt. Tomorrow!

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I’ve been able to stay busy this last week, and the time has really flown by, thank goodness. I’ve had plenty of excercise, so the weakness in my legs is definitely not from lack of use from the extended illness I had with the colitis attack. And I’m off all the steroid capsules, too, which means I’ve only got two more pills to go and I’ll be off all the colitis meds.

Tomorrow we find out the results of all the lab tests they ran on me this last week. We also find out if I have to have a repeat of the EMG tests, because the last doctor did not test any upper body areas. Since I do get trembly sometimes in my hands, I’m hoping he’ll do the test again, even though it’s certainly NOT a fun test. I’ve already told him I’d do it again in a heartbeat if he needs me to. He knows how uncomfortable the test is and is trying to spare me that, if possible, but I want whatever will give the most accurate diagnosis, discomfort or not.

I just hope tomorrow’s appointment doesn’t end up leaving me feeling disappointed that things are moving too slowly, the way last time’s did. I really like this Neurologist, and I have full confidence in his abilities, so I’ll just have to put my trust in God that he has led me to the right man.

I had my first experience with someone trying to help me when I didn’t need their help tonight. I was getting ready to go down the steps at church, which means DH takes the walker and I hold on to the railing and carefully take one step at a time. One of the church ladies grabbed my free hand to help me, and she really was trying to insist on helping, even though I kept telling her I would be just fine. It surprised me that I found that very irritating. I must remember to ask if I can help someone, instead of assuming they need my help.