sunflowery's Diaryland Diary


Good News For Supe

It's Friday! Because our insurance changed in January and there were some hoops to jump through with them in order to get Supe his new power wheelchair, they were requiring him to see a neurologist in their plan. I worked with the patient advocate at our family clinic and she set up an appointment with Dr. Leland Scott of the Minneapolis Neurology Clinic. The appointment was yesterday afternoon. I took Supe in his manual wheelchair as Metro Mobility could not get him there this time. Boy, am I glad I was there.

Dr. Scott was very knowledgible, personable and full of information. He used to be at Washintong University and it is my understanding that he worked with patients who have FSH and Duchene's Muscular Dystrophy. Apparently he has been in this line of work, specializing in MD patients for 15-20 years. He knew all the things Supe struggles with, without even hearing it from him first. He asked if Supe is sleeping He knew why and had several suggestions to help him sleep better. He knew about Supe's chronic and constant pain and is going to work with him on that. He suggested that Supe has lost some feeling in his legs. Supe didn't think so, but when the doctor tested it with pin pricks and cold, it was apparent that there has been some nerve damage on his legs. In regards to this, Supe is in danger of hurting himself and not even knowing it. This is why he may be bruised and bumped and not even know where the bruises and bumps came from.

In looking at Supe's legs, he noticed the discoloration there and said his blood vessles had been leaking into his skin and that is what is causing the discoloration. He is curious to know why that's happening and will explore that further in upcoming appointments. In looking over Supe's chart, he noticed that there was a highly elevated hormone causing Supe to produce far more red blood cells than is normal. This was part of the problem at this time last Spring when he was in ICU, but they never really figured out what the cause of that problem was or why the spike in this hormone. Dr. Scott ordered a bunch of blood tests and had Supe go to the lab yesterday afternoon to give blood for those tests. He also wanted to check for diabetes, vitamin D levels, and some other things I can't remember. Lots of technical medical talk.

The best news is the Dr. Scott has suggested there is help for Supe to slow down and maybe in some cases, reverse the damage of the FSH MD. This was brand new news to us, but Dr. Scott says he has 15 years of clinical trials to back up his information. He suggested Supe go on low doses, once a week. He said in all his cases of FSH and Duchene's MD, there have been vast improvements in strength and slowing down the disease. There are some side effects such as hyperactivity the day you begin the prednizone, as well as a crash about half way through the week. But he also has given us things to help if those side effects occur.

One other issue Supe has problems with is that when he sleeps at night, his eyes don't close all the way. Dr. Scott said that is normal in patients with FSH and gave us a perscription for a clear eye jelly that he would apply to his eyes at night. One of the dangers of letting this condition go, is that patients with FSH occationally have occular drainage in or near the cornea. He suggested Supe see an eye doctor once a year to make sure his eyesight is good.

Something we weren't really aware of is that FSH patients often experience significant hearling loss. So far, that's not been a problem with fact, he has superior hearing to anyone I've ever met. But Dr Scott wants to keep an eye out for problems in the future.

Supe is going to go back to see Dr. Scott in April and at that time will probably have to undergo a battery of tests and measurements and another full exam. He is NOT looking forward to this and really hates this part of his disease. But for Dr. Scott to have full personal knowledge of Supe and his dissease, it is necessary.

Supe was very sad yesterday even though I came away with greater hope and excitement that we had found Dr. Scott. It's still hard for him to cope with all that he's losing with FSH. He wants to pray about the prednizone therapy before trying it...but I am pushing for it. One of the downsides is the cost of all the new drugs the doctor wrote perscriptions for, but thankfully, I have insurance coverage and we rarely have to pay full price. Supe is struggling because he doesn't want to mess with the pain regimen he's on now. What's he's worked out with his doctor is working...and he's scared if he tries something else with Dr. Scott, he will suffer more pain until they find what works again. Dr. Scott's concern is that the regimen Supe is on now, is too short-lived. He would like to work with Supe on something that is longer lasting so the pain is kept at bay for longer periods of time.

Supe's appointment was at 3 yesterday afternoon and then we had to go to the hospital so he could give blood for all the tests and then it was back home. We stopped for dinner and at Weight Watchers so I could weigh in and we were home around 7pm! That made for a long day.

By the way...I lost an 8th of a pound, so if you are keeping track, my total loss so far is 7, almost 8 pounds. I was so afraid because this week has been emotional eating week.

When we got home, I just wanted to crash. I almost went to bed at 8, until I remembered that we are meeting Supe's aunt and uncle for dinner tonight and they are coming over after. So, instead of going to bed, I cleaned up a storm and got to bed around 11. I was tired, but so proud of my clean, clean pad. I even dusted so you know I was serious about cleaning.

Around 3 am, Supe woke me up by turning on the light. Apparently, one of the cats peed on his bed and he had just laid in it. So, I got up, shooed the cats out of the room and helped put new sheets on the bed. Thankfully, there is a plastic sheet covering Supe's mattress, so clean-up was fairly easy. But it means no more cats in the bedroom for now. The problem with having 2 cats, is you never know who the naughty one is, though we are assuming the peeing cat was Maisey since she has done that before.

Oh I got word from my brother, Huff that his wife Belle is going to give her mom her kidney. Their operation is April 7th, though they will be in the hospital the night before. If you are a believer in prayer, could you please send some prayers Belle and her Mom's way so they have a successful operation? Also, that Belle's mom's body accepts the kidney as a match and that her health is much better afterwards. Thank you so much!

And because it's Friday, here is the Friday Five!

If you...

1. ...owned a restaurant, what kind of food would you serve? Pre-op, I would serve good old American comfort food such as meatloaf, mashed potatoes, pot roast, pork chops, etc. Post-op, I would specialize in WLS meals, portions and foods.

2. ...owned a small store, what kind of merchandise would you sell? I love windchimes and writing materials...paper, pens, stickers, etc. So I would combine the two and maybe also sell teas.

3. ...wrote a book, what genre would it be? Inspirational or maybe a pictoral coffee table book.

4. ...ran a school, what would you teach? Grammer and English. Because I am soooo sick of hearing, "I seen that!" and seeing "Oh, your so good at that!" Yeesh!

5. ...recorded an album, what kind of music would be on it?I am NOT musical...but I love music...espeically folksy, guitar stuff.

What about you? Leave me a comment.

-------------------------------------- A Year Ago Today: March 19, 2003: "N" is for Nourishment and Not Good Health

Today's entry is brought to you by Alphabytes and the letter "N" for Nourish.

Last night I woke up thinking that what I want are the results of a gastric bypass without the pain and difficulty of a gastric bypass. I was reading webpages by people who had had one and what they all had in common was that they had to relearn how to eat.

What if I started all over again? What if I could get all my nourishment from liquid foods to begin with?

When did my problem with food and eating begin? How can I change it? It would seem I can't...hence the high BMI and body weight.

How can I learn to nourish my body without eating too much or too much of the wrong things? How can I learn to eat to live instead of living to eat the way I do now? This is the question I have struggled with almost all of my life. Nourishment for my body vs. nourishment for my emotions and soul.

The Gastric Bypass is a tool. A tool you have to live with going back. Food and nutrition will never mean the same things again.

The gastric bypass person is forced to relearn good nutrition and eating habits. Their very health and lives depend on it.

Not that I am in a much different boat. My health is in jeopardy as it is.

Anyway...I did hear from the surgeon's nurse. My surgery is scheduled for 8am Monday the 24th of March. I need to be at the hospital by 6:30am! I need to schedule a physical for tomorrow or Friday in preparation for the surgery. Now that I am on the track for the surgery, It's kind of scary.

If all goes well, I'll be in and out on the same day. If not, I will be in the hospital for a couple of days. But I am home for a week of recouping either way. Should be interesting.

So, That's what's going on here. My husband is still not feeling well with no answers in sight. Hope that situation changes shortly. I wrote a short note to the doctor that diagnosed him with the FSH MD last year to see if there was anything she could do.

Health...what an issue. If you have good health, you take it for granted. If you don't have good health you just never realized what a good thing you had.

Thanks for reading!

2:47 p.m. - Friday, Mar. 19, 2004


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