Thursday, August 7, 2014

New Doctor, New Decisions, New Internet=Stressful Changes

This past month has been crazy. I kept starting a blog post, but wasn't quite sure where to begin, so I didn't. Spoken like a true perfectionist. A few weeks ago, Elizabeth went back to her GI for a checkup. Well, things didn't go quite like we expected. Because she hasn't responded to the standard treatment for microscopic colitis, he is sending her to IU Medical. He considers her to be one of the 10% who don't respond to the first- line treatment. Initially, she wasn't very happy with the thought of going, but I think she is beginning to see the benefit...a second opinion is always good. It seems likely, they will want her to start on some of the immune modulating treatments. That terrifies her.That terrifies me. This has opened up a conversation between us about communicating with the medical profession and about the right to refuse treatment. I'm not talking about automatically refusing treatment, but educating ourselves about the pros and cons, then coming to a conclusion about what would be in our best interest based on our symptoms and other circumstances. I told her she needs to ask the doctor what would possibly be the worst thing that could happen if she didn't start the treatment. If it's just a matter of diarrhea and abdominal pain (I'm not talking about severe in either instance), then that could be controlled with other, less powerful medications. But, if by not talking it she risks weight loss and permanent damage to her digestive tract, then it would be worth considering the more powerful treatment. Of course all of this has caused her anxiety level to skyrocket the past few weeks. She's finally back on an antidepressant. I'm also happy that her doctor was willing to prescribe some anti anxiety medication for her. She's only taking a half a pill of the smallest dose as needed and will probably stop once her antidepressant kicks in. There are days when she doesn't take the anxiety medication when she clearly needs to. Those are the days that I have to remind her that she needs the medication and it's not a sign of weakness. That by taking it she will be getting some of her life back not giving any of it up. It's funny, I'm telling her all of the same thing other people have told me over the years, things I told myself. Thankfully, I made it through the worst part of that and I no longer fear medication or those anxiety symptoms. I know I've talked about this before, but, again, I have to say how I am so thankful that I'm able to help her because I've experienced so much of what she's going through. It somehow makes what I went through a little bit easier to understand. I hope I'm making sense.

As for me, I'm still waiting on tests results. I did get the buccal swab results from the doctor who ran them, but there wasn't much interpretation of the results. I know Dr. Kendall will go over them with me at my next appointment. Overall, I think they look pretty normal. One test result was 300% higher than the normal range. That seems odd to me, but it wasn't anything that he specifically said was abnormal. The genetic test results are the ones I'm most interested in. I hate waiting for results. I  have a feeling that nothing will show up. I don't know why, I just do. Maybe it's just because that's the way things have always been for me. Believe me, I don't want anything to be wrong, but I know there is something very wrong. Getting a positive result will only confirm what I've been feeling. Those who have been through the (sometimes long) diagnostic process will understand those feelings.

This next discussion will fall under the topic of "things that only those who are chronically ill will understand." Someone in my family had the bright idea of going with Direct TV along with AT&T for internet and phone. This was probably, mostly because of the Sunday Ticket Package because, as you must know, everyone needs to be able to see every NFL game there is on any given Sunday. It's not who you think, it's not my husband it's my youngest daughter (the one who has been so sick), who happens to be a rabid Green Bay Packers fan. We are in Colts country here, so we don't get all of the Packers game. Until now. We will enjoy all that Direct TV has to offer, I'm sure. I'm already having a lot of fun with their App. But, this changeover has been a NIGHTMARE! First, the phone order didn't get turned in with the internet order. Then, I was unable to self-install the modem; which turned out to be a problem on their end not mine. Today, less than 24 hours after a technician was here to fix things on their end, we've had the internet drop four times!! I spent an hour on the phone with two different technicians, plus a sales person as we decided we need to increase our speed. I am EXHAUSTED! Talking for an hour, holding the phone for an hour, being "on" for an hour, etc is draining. I have no energy. I am crashing! Why? This is not normal. This is one reason why I know something more than EDS  and dysautonomia is wrong. I have errands I need to run, laundry that needs to be done, etc. For now, none of that is getting done.This is just part of "a day in the life" of someone who is chronically ill.

I found this site:. http://www.nlm.nih.gov/medlineplus/patientrights.html  with plenty of links regarding patient rights.I hope you find it as informative as I did.

I'll leave you with this funny Seinfeld skit about waiting rooms.  https://www.youtube.com/watch?v=njcUMcALEwk

Have a happy, pain free day!




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