So, what's new with me? The latest...

Just an update on me since I have my Pittsburgh plans made-

I’m going to UPMC on Sunday Feb. 20. Will have biopsy 7 AM Monday morning, the 21st, then tx clinic. That afternoon, about 2:00, I am scheduled to go to CHP (Children’s Hospital of Pittsburgh) to see genetics and begin the process of looking for mitochondrial disease. That’s an hour and a half appointment. Tuesday I see my bone doctor for my annual appointment (I have osteoporosis and get annual IV infusions of Reclast. I failed on things like Fosamax), and then on Wednesday I see my neurologist, Dr. Sasha, for my neuropathy pain. He’s the same guy I see for my migraines.

The genetic testing should give them an idea in where to begin the mito testing. I’ll see the mito doc eventually, but not sure if it will be during the next trip or sometime later after some of the genetic testing results come back.

My biggest issue lately is severe back pain. I had x-rays last week because I am at risk for compression fractures due to osteoporosis. Those were negative, but I have a massive muscle spasm in the left side of my back. This could be dystonia (part of mito too) or something else. It also affects my hands and feet because they spasm, my hands become claws I can’t open or close and have severe pain from that (literally scream when it happens), my fingers get stuck, and my toes and feet get cramps and get stuck too. It could even explain my history of TMJ syndrome growing up, and why I have no gag reflex at all and have difficulty swallowing. I’ve had the problem off and on for years, but it’s markedly worse the past four weeks and gets worse every winter. Dystonia is impacted by video game playing, even just minutes of it, stirring things, repetitive activities, driving, even walking with my cane and holding onto it causes spasms and pain, typing, holding things, and makes me prone to dropping things like my keys, pens, and things like that. Affects my fine motor skills. You know I can’t hold on to anything and am always dropping things! It contributes to my clutziness!

They increased one of my muscle relaxers, but I’m limited to how high I can go because an increase in those also slows down the gut, not to mention makes me so sleepy. Narcotics also slow down the gut and can lead to obstructions. So, I am playing a balancing act on how much back pain relief I want vs. how much I want to risk obstructions and deal with the nausea and pain from my gut not digesting. My back and gut go hand in hand…when one acts up, often the other does too. The muscles are tied together closely and when my gut doesn’t move (as it hasn’t been much) it puts pressure on my back and increases the pain. Because I also have some scoliosis in the lower portion of my spine from the osteo, the spasms seem to be putting pressure there and causing a pinch in my sciatic nerve and causing pain down my leg on the left side. Because of the scoliosis, sometimes my hip pops out of joint, I have a lot of pain, but twist and pop it back into place and I’m fine. I’ve had this for at least 10 years.

I’m not sure why my gut isn’t moving as I have increased some of my motility agents and I’m still getting clogged up. I also switched tube formulas to something thinner (also with fewer cals, unfortunately) and it’s still not moving through very well. I can go down lower in my formula, but have been adding water instead. Just takes longer to go infuse every night. I’ve been like this for a month too.

I’m also exhausted. Tired all the time, and we can’t seem to get that under control. I have an occasional, somewhat energy day, but most days are tough for me to have much energy. You know how I am, I push through it anyway and am still active, but I only wish I had more energy to do things more efficiently and do things that require more energy. It also impacts my ability to concentrate and my confusion levels. I keep falling asleep in the middle of doing things…typing on the computer, talking on the phone, even in the middle of taking meds...sometimes I’ll wake up a few hours later and they are laying out all around me because I fell asleep in the middle of trying to take them!

The results of my cardio appointment a few weeks ago- my QT interval was fine that day and she doesn’t want to test for POTS right now since I am going for mito testing, but did notice the murmur (I’ve had this for years too, nobody knows exactly why), and she noticed symptoms of POTS when I got up from the chair and on to the table (my BP went way down and my heart rate when way up suddenly). She just told me how she’d treat it, but the testing is pretty miserable and she didn’t want to put me through it unless I start passing out all the time. Also, suggested implanting a loop recorder which would stay in for a year and record any abnormal cardiac activity, but because of my low immuno-supression and history of infections with foreign devices, even before the transplant, it’s too risky to pursue unless I pass out a lot or my symptoms get a lot worse. So, I’m keeping an eye on things and see her again in six months.

I’m scheduled for someone from CILO to come for an in-home eval on March 2 to determine services I need for assistance at home with things like laundry, getting in the shower safely, getting my bed changed, local errands if I can’t get out some day, fixing food for me (I tend to warm up non-healthy stuff rather than eat eggs or something because I am too tired), and things like that. They are really backed up there so it's taking weeks to get in for the eval...then another several weeks before they can start working.

And yep, in spite of it, I am still planning to go to DDNC. I have NO idea how I’m going to make it this year, but this event is such a highlight of my year and SSSOOO important. I’m going by train again. In on Friday night for G-PACT events on Saturday, the DDNC conference Sunday, lobbying Monday, and I’m staying there to travel home until Tuesday because it did NOT work well to try to travel home the day of lobbying last year! I was just too tired and need a night to rest. I’m looking forward to the night to relax after that anyway like I did the first year.

I’m debating on taking a friend with me to help me get around, so if you know of someone who would like a free trip to DC March 4-8 to be my assistant, please pass the info along! We’ll cover all expenses…the train ride, the hotel (staying in nice hotel, the Hyatt Regency on New Jersey Ave). I need someone to help me get my luggage from the train station to hotel and push me in a wheelchair around the city when we sightsee on Sat and lobby on Monday.

G-PACT is going very well…there is so much going on I’d have to write another book to get into it, but we knocked the socks off of a company we spoke with today on everything we are doing so I am really excited. A great group has come together and are working really hard to get things done. Just keep following our fan page on FB if you are a member to keep track…and that only scratches the surface. Looking forward to a new site coming out in a couple of weeks which is really gonna take us far.

Basically, I am just praying for some relief from something. It would be a huge relief for me to finally have some ANSWERS to connect all of my problems so I am kind of “hoping” for a mito diagnosis. It’s not a good diagnosis really with not an excellent prognosis long term, but there are some things they COULD do to help me some and stop some things that may be harming me now. It could slow down the progression. The way I see it, I am developing more and more issues as it is whether I have a name for it or not. At this point I just want a name for it and a way to treat it so that I am as comfortable as I can possibly be as I continue into the future and doing the things that I do for as long as I possibly can. I know Dr. Kareem put me in the “palliative care” category over a year ago re: the gut and overall issues, and I want to make sure I cover all basis in that now…not just the gut, but that we can address everything possible.

Thanks for your continued prayers and support. Been kind of frustrated on the health end lately, and just glad I have good G-PACT stuff and other enjoyable things to balance that out and keep me going. Too much good stuff there for me to give up or stop. I’m just really excited about the progress of all that!!!