So it is looking like thing...

Well it looks like maybe this week will not be completely bad. This afternoon my back improved enough for me to get some work done around my room/home office. Not as much as I wanted to get done, but enough that tomorrow I should be able to do something I want to do and I have been wanting to do for a while.

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For several years I have been trying to find the time to work on my micro controller programming skills. Every time I have tried something else would come up or my health would keep me from doing it. The odd thing is that this time I am almost getting forced to do it. I have been asked to work on a few projects for people that will require me to use my 3D Printer, but I have been having problems with it. A few upgrades that I have for my Ender 3 will fix the problems, but before I can make the upgrades I need to make changes to its micro controller.

While I don’t think I will start the upgrades to my printer tomorrow, I am going to spend as much time as I can working with similar micro controllers to refresh my skills. I just hope my body agrees with this plan!!!

A great weekend, but a bad start for the week.

Friends came over this weekend and I had a great time, but so far this new week is not going very well. Yesterday, I had a debilitating headache that made it almost impossible for me to do anything. The headache is gone today, but now my back is really stiff and painful. I don’t know if I sleep wrong or if I pulled something, but it is not making it easy to do anything.

I REALLY HATE THIS!!!. I have so much I need to do and a lot more that I want to do, but my body will not cooperate.

Feeling Sick

I am really feeling sick today and I have a feeling it is related to last nights dinner. We had pot roast, which was extremely good, but I have difficulty with a lot of different types of meat. This is at least in part, because I had Roux-en-Y Gastric Bypass weight loss surgery a little over 10 years ago. Sadly the surgery really did not help. I lost weight, but it all came back quickly. I will write about this experience at some point.

Wow, I found pants that kind of fit.

For over a year, maybe even two now that I think about it, I have had only one pair of pants that I can wear without pain and outside of the house and I have been really scared to wear them. I did not want to take a chance to damage them.

The problem is not finding pants that fit my waist, that has been getting smaller, it is the growth (I really don’t know what to call this thing anymore). It is so large that they don’t make inseams large enough so it has to rest in one of the leg holes with a leg. This requires me to have a pant leg that really stretches or the pressure on the leg is so bad that I can hardly walk and my pain level is off the chart.

Because of this I have been forced to wear shorts on most days with the growth hanging out of one of the legs. This is not only embarrassing, but makes it painful to sit. On other days I would wear pants that are extreamly painful to wear, because the leg will not stretch. I have a feeling this is what has lead to my knee injury,

Well after two years of searching and a lot of returns I have found pants that fit. They are not as comfortable as the pair my friend Sonya gave me two years ago, but they don’t hurt to wear.

I have included a link to them on Amazon only to help someone else who has run in to this problem. If someone else is going through this nightmare I hope this helps.

I was wrong, very wrong..

I guess I have waited this long to get some real answers so another few months is not that bad.

I was wrong, very wrong. Now that I have a partial answer the wait to find out if this doctor can do anything is driving me crazy!! I am not sleeping, I can't focus on anything, and feeling very anxious. It is going to be a long two months. | Posted 8:30 pm

A little good news for a chance

Froedtert & the Medical College of Wisconsin just called and they have a different doctor that is going to see me in early December. The doctor is Dr Amy Guise and I really know nothing about her other than what I found on the College’s website.

The new appointment is the afternoon of December 5th. I guess I have waited this long to get some real answers so another few months is not that bad. | Posted 10:40 am

 

Doctor is not an option, but....

I have had almost a dozen phone calls today with the Medical School trying to work this out. As this point looks like that doctor is not an option for this surgery, but they apparently have a doctor that is. I am expecting a call by the end of the week to schedule an appointment, but it will most likely be early next year. They did say they will try to rearrange things to get me in sooner. | Posted 3:36 pm

I may be wasting my time

After multiple phone calls with my doctor's, who keeps insistent that this doctor is the best option and that they have talked to him, I am starting to think I am just being blocked by the Schools gatekeepers. I have been told to try again tomorrow.

I may be wasting my time with this anyway. While my insurance should pay for the surgery they are talking months of hospital recovery and I have already topped out my life time hospital stay days. Oddly thanks to an infection of a wound on the same growth that almost killed me two years ago. As for going to the Mayo I really don't know if that is an option, between travel cost and the fact that it has become very difficult for me to travel.

And to think they say an extremely rare form of an extremely rare disease was a good result of the tests. I'll get through this and I am not going to give up trying. | 4:54pm

Things are not going very well...

It is about 12:30 pm and today did not go very well. The doctor in Wisconsin will not see me. I called this morning and setup an appointment without a problem, but when I called back to see if I could change the appointment, because I could not arrange a ride on the original day, I was told that the doctor will not see me for this disorder. I was told this doctor is one of only two doctors in the country that can help me and now this one is out. The other one is at the Mayo Clinic.

How the hell would I get to the Mayo Clinic!! I was worried about how I was going to handle the drive to Froedtert which is about 64 miles away, the Mayo Clinic is 333 miles away. Right now I really wish I was a drinker.

I really wish this blogging platform let you show the time with your posts, because just having the date can be confusion on a day with multiple posts. If my health was better I would setup my own server. (It’s 2:34 pm)

Results of CT Scan

I have been home from the doctors office for a short time now and I am kind of overwhelmed with what the doctor said and having difficulty try to get my head around what he said. I guess it was not as bad as it could have been, after all it is not a Hernia or a tumor, but I am not sure it is that much better.

The doctor says I have Scrotal Lymphedema (a.k.a Scrotal Elephantitis). Yes, that is Elephantitis has in what the Elephant man had, just a localized version. He did say that there is a possible of a surgical option to remove it, but only a few doctors in the country that can perform the surgery. Luckily one of them is in Wisconsin (Dr Michael Guralnick, MD, FRCSC from Froedtert & the Medical College of Wisconsin). However, the question I have that I can't find an answer for is that that because it is a disease, will everything come back after the surgery.

Do yourself a favor and don't Google Search it. You will lose your lunch.

Bad Nightmare

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It is about 3:00 am and I just had a really bad nightmare that was very much related to getting the results of the CT Scan. I don’t know why I am letting this get to me so much. In my heart I know that I am not going to get good news today and that I have to accept that surgery on the Pannus/Hernia what ever the f’ this thing is and I need to hope I can find another option.

I get results and maybe answers tomorrow

Tomorrow afternoon I have a doctors appointment with the surgeon to get the results of last Monday’s CT Scan. I looking forward to finally getting some answers, but I am also really worried on what the results of the scans will be. If it is just a giant ball of skin they can remove it and that is also true if there is a minor hernia intrusion, but if it is a major intrusion I am f’ed!!!