Thursday, December 22, 2011
Saw a liver specialist today. He walked in and said I'm his easiest patient for the day. He looked at the records of the CT and MRI scans of my liver from April and last month and said there wasn't a change, the lesion (haemangioma - a large blood vessel) isn't really anything to worry about, and that was pretty much it. I asked a few questions about the possibility of it causing problems and/or getting worse but he said it's really not a big deal - it's basically like a birthmark and may have always been there.
On the way to the appointment I set up another appointment with the rheumatologist that my primary doctor referred me to. After explaining my case, that the symptoms and condition are very serious, and that I'll also have to have genetic and/or muscle and skin biopsies to confirm or reject the diagnosis we're working towards, I was able to convince her to get me in sooner than the end of February. After adding in that I'll fax important records ahead of time, she was able to get me in January 5th! If anyone cancels next week, she'll call and see if I can come in sooner. Apparently when you're honest about how bad of shape you're in and offer to save the doctor as much time as possible, people will step up. Now let's hope the doctors are receptive and willing to give me a chance to make my case.
Wednesday, December 21, 2011
I saw my primary care doctor today. She was open to the condition I brought to her condition that almost exactly matches my symptoms and issues (I showed her and explained the symptoms/signs I have before telling her the name of the condition). She referred me to another specialist as a next step towards proving the diagnosis. Once I get a little closer to getting this proven I'll talk about the condition and what it means. I don't want to scare everyone until I have a better idea that I do have it.
Also she signed off on FMLA so I can have my job protected as I go to all these doctor appointments and for any days that I just can no longer stand the pain and problems and need to leave work to rest. Plus she signed off for me to have disability parking for a year. This will be a great help for me when I'm exhausted, since I'm pretty unsteady on my feet lately and with MN winter upon us and the horrible fatigue and pain continuing to get worse if I have to run errands it will save me some time, effort, and steps. Of course I'll only use it when I need it, but I'm glad to have the option now. I took the paperwork right to the DMV and got a temporary permit until the placard comes in a few weeks.
Earlier this week I bought some shapewear - for most people it 'evens out the lumps and bumps' for a smoother body shape. For me, it seems my organs are not where they should be and the more I sit and stand the worse the tearing pains are in my abdomen. I've worn this shapewear (looks like a swimsuit except it doesn't cover the chest) for 2 days now while at work and it has dulled the worst of the pain (even though it's creating a few new pains) and is making it a little easier to make it through the days. It's helping me to eat just a little more calories in the evening/night so I can get more like 1000-1200/day instead of 800-1000/day. Nowhere near what I need so I can stop losing weight, but it's better than nothing! And yes, I realize the irony of having to wear shapewear when I'm underweight to attempt to slow my weight loss.
My parents are coming up tonight to stay with me a few weeks and help out. In the next few weeks work is going to be horrible and I'll have to put in overtime while also trying to deal with doctor appointments and my quickly deteriorating health.
Tomorrow I have an appointment with a different GI specialist to review the problem with my liver - and hopefully give more proof for the condition I'm working towards getting diagnosed.
One last thing - don't forget to check out my new sparkteam:
This team is about figuring out the little things we can do each day to get a little closer to our goals. We are supporting each other no matter what each person's goals are or what challenges we're dealing with. It's all about choosing just 1 thing (or a few things) that you can do for today that won't overwhelm you but will help you get closer to your goals. No one is perfect, but small changes do help move us forward!
Sunday, December 18, 2011
I'm still working on setting it all up, but I just created a new sparkteam I'm hoping some of my friends will join in on.
The point to the team is to encourage everyone to do a little better every day; do small things to get closer to your goals and to help others. It's amazing how quickly the little things can add up.
It will take a little while before I can get the team all set up, but I'm hoping my friends will come join in and help me grow it into a great and supportive sparkteam.
Tuesday, December 13, 2011
I think I'm getting more exhausted every day. I'm desperately wishing I could stop working for a few weeks//months while my health issues get figured out. Within 2 hours of getting to work I'm already fighting to not fall asleep or collapse from exhaustion. But without a job, I have no income and no health insurance. It's really sad that in America a person has to fight the medical community and still keep working full time when their health is so bad they can barely move without falling over or being in serious pain.
There is non-stop stress in my life. The hospital I went to the day before Thanksgiving billed the completely wrong insurance company. My current insurance company wants to charge me $260/month for the dexlansoprazole that the doctor in Philly just prescribed for me (I was less than $50 away from my out of pocket max, but starting 1/1 I'm on a new insurance and will probably have to pay $200/month for it, or convince him I need a different medicaiton). At work today someone decided that everyone has to have the same email signature... and no one thought ahead, nor did anyone understand how to set it up... except me. So I did it for 15 people plus myself. My parents need to go home, so starting tomorrow I'll be alone again. Etc, etc, etc. Plus my digestion is getting even worse, so I'm about ready to give up eating entirely, until I can get the domperidone in me for several days. But...
Today at work I was thinking. The tests at Temple showed that my intestines are crammed low in my pelvis, which probably means other organs are sliding lower too. I have a genetic defect where my joints are too loose, which might mean the connective tissue holding my internal organs in place is stretching, hence why everything is getting out of place. This would explain so much, including the tearing and squishing pains in my abdomen and chest. It also explains why after I eat my lower abdomen sticks out ridiculously far. If I'm right, that means I must have surgery to put everything back. But unless Dr Parkman considers any of this being a possibility, it won't be addressed. I don't know... everything about me is so abnormal and I don't know what to think anymore.
What I do know is that I have no interest in doing anything but laying in bed or on the couch where I can sleep as much as possible, minimize the pain, and get rid of some of the horrible stress of my life. Of course, at this point, the only way that will happen is if I literally collapse at work and they can't wake me up.
Sorry if this is a little depressing. The exhaustion has taken a real toll on me.
Friday, December 09, 2011
Quick entry: got some results today. Doctor added yet another test, but they were able to get me right in today (even though the test took a long time). This one was drinking barium and having them take pictures and watch it flow through my digestive system. (They found my intestines are cramped into the bottom of my pelvis - kinda explains a lot.) More results will trickle in over the next 2 weeks, but he's confident enough that I have gastroparesis because my emptying study showed delayed emptying. (After 2 hours I still had food in my esophagus and at 4 hours I still had over 1/3rd of the food in my stomach - it should be less than 1/10th.) So he's putting me on Domperidone and a stronger PPI. I have another appointment for 1/23 for follow-up.
I'll post more soon. Tomorrow the awesome gal at the hotel is sending my dad and I on a tour of Philly, so not sure if I can type out more after that.
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