Category Archives: Quality of Life

Healing Progress

Posted on by June 30, 2017  

Healing Continues

I saw my ENT yesterday, two weeks after surgery. I’ve not felt good this last week, but he is pleased with my healing progress. I had more noticeable face pain and pressure, but I did quit the pain meds. I’ve been sneezing a lot this week, too. And my throat stays sore from all the post nasal discharge. There’s still some minor bleeding. And I have had a sensation of something being in my right nostril way up high. He numbed my nostrils and used a suction tool to pull out some “crusting”. Crusting is evidently the medical term for scab. Now that the numbing has worn off, I still have a sensation of something in there up high on the right.

Frontal Sinuses Occluded

Even though he is very pleased with the healing progress, he is still very concerned about the totally blocked upper frontal sinuses. He says it’s not unusual to have mucous filled sinuses. But it is unusual for there to be absolutely no air at all in them. And with the drain opening closed up with bone tissue, there’s no way for those sinuses to drain at all.

So I’ve asked him to refer me to a UAB doctor who can do the more involved surgery required to drill through the bone into the frontal sinuses. Hopefully he can find someone who would coordinate surgery with the UAB Oculoplastic surgeon I’ve already scheduled surgery with. I’m hoping each of them can operate while I’m under one round of anesthesia. That way I can have one recuperation to deal with. I’d be more than willing to postpone the tear duct surgery if it means getting both these surgeries done on the table in one session.

I know the inflammation aggravates my Mitochondrial Disease issues. So I’m trying to stay as optimistic as I can that God will work out all this facial mess and allow me to heal properly.

 

 

 

Pain after Allergy Testing

Posted on by April 19, 2017  

Pain after Allergy Testing

You wouldn’t expect to be in pain after having allergy testing, but this last week has been terrible for me. I didn’t have one bit of trouble with my skin from the testing. I didn’t even itch afterwards.

The pain is coming from my neck. It’s as bad as it was before I had the cervical fusion surgery. My muscles are all jangled and spasming all the way down to my waist. Anything that requires lifting my head above eye level even the slightest is extremely painful. And I have a constant burning and throbbing at the back of my head. Turning left or right is not fun, either.

So how did this happen from allergy testing? I had to lie very still on my stomach on a hard and narrow procedure table with no good way to get my head comfortable. She lowered the head section as much as she could, and I had my forehead on it. There was no place for me to rest my arms, so I kind of held onto the sides of the table. By the time the testing was over after maybe 20 minutes like that my neck and shoulders were terribly fatigued and painful.

Pain Meds

I’m off Goody Powders or even plain aspirin in preparation for having more sinus and septum surgery, so I’ve had to use my Methacarbamol to try to relax my muscles. I was in so much pain Sunday after sitting in the pew Sunday morning that I took a Lortab I had left over from my last surgery. Obviously I can’t do that on a regular basis. So I’ve been supporting my neck with the gel U shaped pillow I use in the car and also sleeping on a hot pad.

Yucky

I’ve not been very clear thinking at all thanks to my pain level. And the yucky sinus discharge and blocked tear duct aren’t making me feel any better, either. It seems like everything my body needs to do ends up being harder than it should be. I blame it on my age and the MITO that makes my cells not work as efficiently as they should. It’s very depressing. I thank God that I have Him to help me through all this.

Tear Duct Is Better?

Posted on by March 28, 2017  

Tear Duct

I wouldn’t say it’s completely open, but my tear duct appeared to be better this morning. I went to my eye doctor for the last time with this issue on Friday, I thought. The infection appeared to have finally calmed down. I definitely didn’t have the big painful knot in the corner of my eye then.

But I DO have a small knot there that has puffed up during the day today, so will be calling the eye doctor in the morning to see if I should go back on the antibiotic eye drops.

He used a syringe (no needle of course) of fluorescent liquid in the tear duct openings, top and bottom, and tried to find signs of the bright yellow color in my nostril. No such luck. Then he pushed a whole syringe of saline through. I could feel the pressure, although he had numbed my eye. Still no fluorescent signs in the nostril.

BUT, when I pressed on my eye to wipe off all the liquid around my eye – it squirted out my nostril! He thinks the pressure of pushing the saline opened the duct up at least part way.

Since it’s puffing back up some today, I’m wiping tears more than I was, too, draddit. Hopefully this is swelling from the poking he had to do Friday, and not more infection.

Antibiotics

I’ve now been off oral antibiotics for two weeks and antibiotic eye drops for three days. My digestive system appreciates that, for sure. Of course I’m still taking the probiotics. I am very thankful that all these antibiotics have not caused any tummy issue. I used Zofrin and the probiotics to protect my system. The Zofrin was causing constipation, so I went back on my MiraLax to combat that. So at least my gastric system is happy.

ENT

I’m ready to make an appointment with my new ENT. The eye doc has done all he can for this mess. I’m still having thick mucous discharge down the back of my throat. I’m clearing my throat constantly, just as I was all last year. And that’s keeping my throat irritated and my voice hoarse.

MITO

One thing’s for sure, when you have a mitochondrial disease, you never know how your body is going to react to any situation. I’m just thankful for doctors who understand that I’m not a typical patient!

 

Weak Leg Muscles

Posted on by May 22, 2016  

I’m dealing with very weak leg muscles right now, and nothing I’ve tried has improved my walking. I had assumed that once I was off the Clonazepam my walking would improve, but it has not. My sinus infection has settled down, so my teeth no longer ache, thank goodness. But then I started having UTI symptoms. Since I still had a week’s worth of the antibiotics, I started back on those. And of all things – I threw up after the first dose, just as I had the first night on the antibiotics for the sinus infection. I definitely won’t be taking any more of THAT antibiotic!

My stomach has been so jangled with these meds that I started on a month’s worth of Align yesterday. Hopefully the powerful probiotics in that brand will get my digestive system back on track. I’ve been watching what I eat, but as weak as I feel I need to get as much protein in me as possible. I tend to stay on the borderline of anemia all the time, anyway, so eating foods with iron in them are a necessity. But foods with high iron tend to be hard on my tummy – a regular catch-22.

So I don’t know if I should blame my muscle weakness on the Clonazepam, or the infections, or the antibiotics, or the bland diet I’ve been on to settle my tummy. All I know is that I’m shuffling around all day, barely picking up my feet. It reminds me of the old Laugh-In gag with the dirty old man barely moving his feet and then falling over. It was funny way back then, not so much now.

I have a Neuro appointment mid June, so I’ll do what I can to get my strength back in my legs before then. If not, then hopefully he can suggest a different med to deal with my muscle spasms. I stayed off the old Methocarbamol while my tummy was so upset, but have tried a few doses the last few days. It just doesn’t help much any more. And the weakness does seem to be more in my legs than in my arms.

I am trying to walk around in the house as much as I possibly can, going up and down the basement stairs several times a day, but nothing seems to be making any difference. I lost a few pounds in the last few weeks, and I hope I keep that weight off. It seems reasonable that weighing less would put less of a burden on my legs. We’ll see what the Neuro says about that.

As you can tell, I’m discouraged right now, but I try to stay hopeful that the next doctor’s appointment will provide a new treatment to try that will actually help. Hope springs eternal. And I am thankful to God that I am able to do as much as I can do! Sometimes I need to remind myself of that.

I’m Still Losing Weight

Posted on by May 19, 2016 2

Well, I have exceeded my goal weight loss by several pounds, and even though I’ve quit counting calories, I’m still losing weight. It’s just as slow a weight loss as it was all those months of trying, but losing it I am. And I’ve been allowing myself the occasional milkshake or pizza, as the mood strikes, too, without regard for calories or lactose intolerance or blood glucose numbers!

I guess I’ve just gotten so used to eating less that I am still “on a diet”, even though I’m not trying. Hmmm… anyone want a milkshake?

I’ve finished reading Dan’s book, I Will Go On, and I’m in the process of re-reading the chapters I found most inspirational to me. I can’t say that I “enjoyed” the first few chapters, but the bulk of the book more than made up for the opening explanation of the various types of Parkinson’s Plus disorders. I would still recommend it as great reading for anyone dealing with PD, or any Movement Disorder, either as the one with it, or as the care giver. I didn’t find the explanations that helpful, as I’ve already read all this many times before in my own Googling, but I would think that anyone new to PD Plus would find this layman’s explanation of all the variations of severe Movement Disorders to be very useful.

I can only be thankful to God that I have a relatively mild Movement Disorder.

Hubby and I have noticed some occasional tremors in my right hand that aren’t as jerky as my foot, shoulder, and face can get at times of stress. It’s nothing to be concerned about, but worth noting, in case it becomes more frequent. I will be able to look back here and see about when we first started seeing it.

When I was first diagnosed with Parkinson’s, we bought a notebook to log any and all symptoms, doctor’s visits, meds, etc. And I kept it up religiously until after the MDS had changed the diagnosis to Essential Myoclonus and had me on Primidone, which worked wonders for me. But I’ve long since quit writing much in it, depending more on keeping track here on my blog of our war on my Type II Diabetes diagnosis. I would recommend the journal method though, for anyone with a progressive disease, such as Parkinson’s. It’s great to be able to answer the doctor’s questions about onset of symptoms by turning back in a journal to the first entry for a given situation. And it’s much easier to keep track of the side effects of meds, etc., too.

There have been some family issues that have kept me somewhat depressed and definitely more tense of late. I don’t handle my emotions as well as I used to, either, so it’s affecting me more than I would like. It’s just something I need to work on. I know that with God’s help I can meet anything that comes my way.

I recently started trying to memorize scripture verses, both as a way of drawing closer to God and to also exercise my memory. I’m picking verses that I already know in a general way, and now I’m trying to learn where they are in the Bible and learn the exact King James version of them. That’s the version I grew up with, so it’s best for me to use. I know a lot of scriptures in a paraphrased sort of way, but, with few exceptions, I never learned their location in the Bible. I regret that I did not master these verses a long time ago. I can certainly tell that my brain is not as sharp as it used to be, but I’m glad to see that I am having some success.

So here I am at this moment in time, with some successes and other situations I continue to work on. Life is good.

I Will Go On by Dr. Daniel Brooks

Posted on by May 19, 2016 4

Dan Brooks has written a book about his fight to preserve himself as his body deteriorates, I Will Go On, and I bought it the other day on Amazon. I’m glad I did.

One of the best things about blogging is getting to know people you would never have the opportunity to meet otherwise. I have been following Dan and his journey through his aggressive form of Movement Disorder for some time now on his blog, and I’m always encouraged and uplifted by his strength of character and determination.

I’m not too far into the book yet, but I can tell you right now that it should be required reading for anyone who is facing Parkinson’s, and for their care givers, and certainly for those who appear to have one of the rarer forms of Movement Disorders that have Parkinson’s symptoms plus other brain dysfunction symptoms. For those like myself, who have a mild form of a Movement Disorder, it helps to put my minor problems into perspective. For those with rapidly worsening symptoms, it gives a vivid description of his progression and determination. It is a scary read in some ways for me, but I know from personal experience that even a bad diagnosis is better than the awful unknown of enduring test after test and doctor after doctor with no idea what is wrong with you or how to treat it.

I hurt for Dan as I read it, but it’s hard for me to put the book down. I want to know more about this man I have come to love and respect via the internet. I think you’ll find that true, as well.

I’ve Lost Weight – Now I’m Getting Asked If I’m Sick

Posted on by May 19, 2016 10

This is a hoot. I’m in better health than I have been for years, but in the last few weeks my Hubby and I have been asked repeatedly if I’m sick. You’d think I had lost the weight quickly, but it took me over a year to lose the 50 pounds. And the questions are coming from people who see me every week.

I could understand it if I had just changed to clothes that fit me better, or if I had lost the weight in a hurry. But I redid my wardrobe totally several months ago.

Now, I am still losing a little bit of weight, so my new clothes are beginning to fit loosely. That may be the reason for the questions. But all those months I was wearing my old clothes that were way too big for me? Not a word from a soul.

So, now the question is, have I lost TOO much weight? I don’t think so. I still weigh about 10 pounds more than I did when I was 21, when we got married. And there’s no way I could possibly fit in my wedding dress now.

I think it’s because I look older now that I’m thinner. I’d rather I didn’t look older, but I’ll take looking older over feeling worse any day.

It’s really quite ironic. When I was so sick, but heavier, no one but family asked about my health. Now I’m thinner, and much healthier, and they’re concerned about me. Go figure. LOL!

Getting “Back to Normal”

Posted on by May 19, 2016 3

Well, I decided to try to get my life “back to normal”.

1. I’ve rearranged my meds, so I’m only taking them a few times a day, instead of what felt like all day long.

2. I’m no longer pricking my fingers 3 times every day, but only doing it 2 hours after lunch. My glucose readings have been consistently good for before breakfast and after supper for a very long time. Most of my fluctuations have been after lunch, since we don’t always eat the same thing then. This has been very liberating feeling, plus it’s a lot less expensive, too!

3. I’ve finally quit putting my calorie count for each meal into FitDay.com. After faithfully keeping track of every meal for over a year, I was just plain tired of doing it. And, I still seem to be losing a little, as I’m not really expecting to eat any more than I have been eating.

Add them altogether, and I really do feel like I’m back to normal. I’m still not exercising the way I should. They did a piece on the news the other day saying that people who sit for 6 or more hours a day have something like a 40% higher heart attack rate, even if they exercise. So, I’m in big trouble. Have I changed the amount of time I spend at the computer since hearing that? No.

So, I’d say 3 steps forward, and one huge one backward, until I get my duff off the sofa and start moving around more.

Doing Great!

Posted on by May 19, 2016  

I’m really feeling good these days. My stomach is behaving itself, and I’m encouraged by the strength that is returning to my legs. I was able to manage a couple of fairly steep driveways on our yard sale haunts on our Date Day without using the cane. That’s quite a victory for me, as I can’t remember how many years it’s been since that was true.

I’m gradually adding back in all the supplements I was taking before my stomach got ulcerated again, and so far there’s been no stomach problems. That’s a true blessing.

I’m also encouraged by my ability to learn about the new programming language that our new sites are written in. It’s slow going, but I am gradually understanding how the code is working. I’m very proud of that.

I’m still going to sleep most nights at 9:00PM and getting up around 5:00AM, so I’m getting plenty of sleep. I usually only wake up once in the night to make a bathroom trip, so my bladder is behaving, too.

I’m getting closer to my goal of losing 50 pounds by April 1. I may not hit the date exactly, but I’m not going to miss it by much. With the lowered rate, and the care hubby takes with his grocery shopping, my blood glucose numbers have been mostly excellent for some time now. Of course, there’s the occasional high number, but I usually know what I’ve eaten to cause it, and learn accordingly.

All in all, I’d say I’m in the best physical and mental state I’ve been in for years, and I hope it continues.

Getting Better Little by Little

Posted on by May 19, 2016  

I’ve had a good couple of weeks now that my stomach is getting better, and I’ve been working on building up my exercise time. I’m still stuck at 3 minutes at a time on the treadmill, but I am moving faster on it than when I started. Now I’m doing it twice a day most days, followed by 10 minutes on the recumbent bike, so I’m getting almost 30 minutes a day of hard (well, for me, anyway) exercise. I can really tell it when I have to climb stairs now. It’s not anywhere as hard as it has been.

I did take a dose of Pepto Bismol yesterday, however, because I felt like my stomach was irritated. Maybe I nipped it in the bud, before it had a chance to give me trouble again. I sure hope so. There must be some medicine I am taking that is really doing a number on my stomach, but it’s hard to know which one, since I take so many. I did wait a week after feeling better to go back on the vitamins and supplements, so maybe I’ll leave them off again this week and see if my tummy is OK. Then, instead of adding them all back at once, the way I did last time, I’ll do it one at a time, so I can spot the culprit. Nothing like doing a science experiment on myself.

I’ve seen my Diabetes doctor and my Neurologist in the last couple of weeks, and both are very pleased with my progress. My glucose test numbers have been consistently good now for over a week, so I’m proud of myself. I continue to lose weight gradually, so it looks like I’m shrinking myself out of the diabetes diagnosis!

I’m less than 10 pounds from my original weight goal right now, but I’ve bought some size 12 pants that I want to fit into and may continue to lose more if I need to, so I can wear them. I say quit, but I’m so used to eating this amount of food now that I can’t really imagine eating much more. I started my conscious effort to count calories and watch my sugar and carb intake back in April of ’09, so that’s a pretty well established habit now. Only occasionally do I feel hungry, and more often than not that is a sign my stomach is irritated, rather than real hunger. For some reason my body interprets low grade stomach pain as hunger. I’ve noticed that for a long time.

The Neurologist did give me some flexibility in how much Primidone I could take, depending on whether or not my tics and jerks returned. I had upped my dose by a half pill at a time while I was sick, because my face started its thing again. He says stress can effect the twitches, and I do believe it. So, along with trying to add the supplements one at a time, I’m going to try cutting back on the Primidone by that half pill.

I did ask him about my poor memory, and he said the Primidone and the Triavil could both be effecting that. My Gastro had suggested I try cutting back on the Triavil about the time I got sick, which I did, but I went back on the full dose when my stomach was so uncomfortable. I guess that’s another pill I can try backing off from gradually. Lots of tinkering with doses to play with for the next few weeks, trying to do the most good with the least side effects.

I’ve been working on learning about our new website format, so my brain has been getting a good workout lately. I’m pleased with what I’ve been able to understand, but there’s so much more to learn. This time I didn’t try to do it all by myself. I’ve hired a programmer to make the major change from one computer program to another, and that took a lot of the stress off of me. It sure is nice to be able to email him with questions and actually get answers! That’s customer service the way I like it!!

I continue to be optimistic, with goals to diet my way out of the diabetes and find the optimal doses of all my meds and supplements. And I look forward to being able to increase my exercise time gradually over the next few months.