Wednesday, July 5, 2017

Rambling Update Ahead

I've had blogging on my to-do list for the last few months. It's been pushed to the next day, then the next, etc. Well, here I am, finally.

 I just finished up six weeks of physical therapy. I'm pretty proud of myself for making it through the whole six weeks. I was released with an exercise plan that seems doable. One of the things that I did at PT was to ride an exercise bike. I only did ten minutes each visit, but it was a start. So, I've been keeping my eye out for a used recumbent exercise bike. Well, I found one this week. It's a Schwinn and I got it for $100! Yay me! It's in very good condition and it has a lot of bells and whistles on it, many, I'm sure I won't use. I'm going to start with ten minutes every other day, then work my way up gradually to where I'm riding a half an hour a day. That might not be possible for me, but I want to have a goal in mind. I'm sure there'll be days that I can't ride, so I need to let myself off the hook for those days.

I'm continuing to be much better off mentally than I was during the winter. The sunshine and warm air have been good for me. I know the hot weather is on its way though, and that tends to be one of the worst times for me physically. Honestly, I don't do well with the extreme weather, hot or cold. I've had a week or so of increasing weakness and pain, along with more severe blood pooling. I'm at a loss as to who I should see for this. I wish I could have one, or even two, doctors who could take care of all of my needs and do it well. I know, that's asking too much, though.

After a year of waiting, I finally, have a referral to a Rheumatologist. The last time I talked to my primary care doctor's office about it, they wanted a letter from my eye doctor recommending the referral. I know my eye doctor will probably do that for me, but why should she have to? I have one autoimmune disease, have had high autoimmune markers in my blood, have severe dry eyes, dry nose and now I'm developing a dry mouth! I shouldn't have to make a phone call or wait until my next visit to speak to my eye doctor about it. Well, a few weeks ago I had an appointment with my Endocrinologist; on a previous visit, she had offered to make the referral if I couldn't get my primary care doctor to do it. I wasn't going to bring it up, but she did. I was telling her about my increased symptoms and she just felt like it needed to be done, so after all of this time, the referral has been made. I cannot tell you how relieved I am. My appointment isn't until October, but I'm on a cancellation list, so, hopefully, it will be sooner.

So, you'd think I'd be so happy about the referral, that I'd have no reason to be worried, well, you'd be wrong. You should know me better. I'm second guessing myself; maybe there is no reason for me to see a Rheumatologist? Since I fought so hard for the referral, I feel as if something has to be found. I suppose I'm concerned about what my Endo will think if all the testing turns out to be normal. Then there's the whole thing about how I'll be treated by the Rheumatologist. Will he believe me? Will he order tests? If he does and nothing is found, will he continue to follow me in case something does develop? Ugh! A doctor's appointment shouldn't cause this much stress. I've read about others in the chronic illness community who, like me, feel as if they have a form of post-traumatic stress disorder from the medical profession. There are many stories out there of belittling, accusing, ignoring and dismissing those of us who are so desperately looking for help.

Since I started this post, I've seen my eye doctor. Because I'm still having issues with dry eyes, she's decided I should try Restasis. I'm sure you've seen the commercials on TV for Restasis. It is an eye medication for extremely dry eyes. It's expensive, so it's usually not the first choice for treating dry eye disease. At one time, my primary care doctor had prescribed it for me, but it was going to cost me $500 a month! The eye doctor gave me a card I could use which brings the price down to $30 a month! That, I can handle. It can take up to three months to work, so I'll still have to use my dry eye drops for several months. I'm hopeful that this will help make a difference in my eyes.

That's all I have for now. I'm trying to decide if I'm going to continue blogging or not. I seem to have a very bad case of writer's block. Maybe I should see a doctor for that? HA! If any of my fellow bloggers have any ideas on how I can get through this, please send me a message. Thanks a bunch!









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