I had an appointment with my NP (nurse practitioner) today. She's lovely and somewhat familiar with M.E. (she has a family member with it) although she's definitely not up on all the recent research or anything.
I vacillate between wanting to seek out medical help and new treatments and wanting to avoid doctors altogether as they've never been able to help in the past, even if they weren't dismissive. I love my specialist but have to travel far to see her and I've been too sick for travel lately.
They are trying to set up a tele health (like a televised health appointment) between my NP, my specialist, and me, but they've been trying to set it up for three months and still don't have one set, so I'm not holding my breath.
One thing I like about my NP is she treats me like an intelligent woman. Today, I actually had a hand in picking out some of my blood work. I've been curious lately about autoimmune stuff and asked to have my levels checked.
I've been dealing with a lot of OI symptoms - lots of dizzy spells and blackouts and blood pooling. We took my blood pressure sitting and then I told her we had to wait a few min. standing to see a drop. Then the machine wouldn't take a reading on standing. So we used the other machine, same deal (it was either too low to get a reading or due to my shaking hands). By the third time (she did the reading by hand - the old fashioned way), I was really quite dizzy (seeing spots). My BP only dropped about 25, however, she very obviously noticed the tremor/shakes as well as the purple hands.
After the third time I sat down and wasn't able to get up for a while because I still had spots from a partial black-out. It was embarrassing, however, in a way it was good because she finally saw the tremor I have explained and she clearly saw my purplish hands which she said is common in vascular conditions.
She's hoping to discuss these issues with my specialist or perhaps see if we can find me a specialist of some kind here in town.
She checked my throat and found swollen glands as per usual. I think they are just a permanent part of M.E. for me. Also she observed three blistery patches in my throat.
So I have some blood work to do and also an ultra sound for my thyroid. While my levels are always normal, in the past I've had cysts on my thyroid as well as goiter.
We also filled out the paperwork for my medical leave. I feel really good about it. I'm hoping to do some healing (and art) and just try to recover emotionally and physically from this relapse. I told her I would like to find some kind of treatment that will help me get well enough to go back. We're meeting again in January and can hopefully follow up with some kind of plan.
upnorth,
ReplyDeleteI have been reading some of your posts since a little while ago and I am sorry for your situation and I do admire your courage of fighting with such illness.
I just read you were "vacillate between wanting to seek out medical help and new treatments and wanting to avoid doctors". I feel like I want to say something now. I am certainly not in the place to tell anyone what to do but if I were you, I will not go for doctors. Not because I do not believe they know anything, but because my experience told me that M.E. really is a personal business.
I had long term health issue and was down to the bottom of abyss three years ago. Now, I am in almost 95% of myself. I am still not as healthy as normal people but able to deal with my life and feel pretty good everyday. The only method brought me here is nursing myself like nursing a newborn baby: the completely stress free rest; the foods that my body needs (I had to cook or buy whatever I feel I need everyday and every meal, and I cook foods of what I FEEL LIKE to eat, not by THINK how healthy it is), and minor exercise (the most dangerous one, and I always over estimated my energy level).
The reason I kicked doctors almost completely out of my care was I found a "faith" - that our body is our only doctor, when facing such puzzled illness. Our body really works much more "magical" way than mechanism - which modern medicine based on, it is impossible for doctors to find what really going on with each of us, to detect the cause of each of our problems. However, each of us actually are born with capability of resillience - our body's self regulatory system. But this system would not work well if our body doesn't get what it needs, such as right foods, good rest. And it is up to each of us to find out what our bodies really want. Nobody else know except ourselves.
I got this knowledge not only through my experience, but also some books I read. One of them is "Never be sick" by Francis Raymond, a biologist who was sentenced to die by his doctors, but "magically" recovered by his own wisdom. His "one disease two causes" simplified our body function and totally made sense to me. And my recovering also proved he was right. I highly recommend. Of course, you may already know about it. Just in case.
Also, I realized my problems are not the same as most M.E. patients. So, if what I said sound foreign and doesn't make sense to you, please ignore. I believe after all, ourselves are the only one know what's going on with us.
Or, I am glad you had medical break. As matter of fact, I had to give up all my academic dream in order to get well physically. I learned to negotiate my fate, and it does help me to rest stress freely, completely.
Hope you get better soon.
Best
Yun Yi
SOunds like it was a good visit overall with her seeing some of what happens to you when you stand for any period of time. You really had a swift and strong reaction didn't you. So sorry about that, but again at least she actually saw it happen.
ReplyDeleteHope things continue to move forward for you in your recovery from this relapse and the leave of absence from college....
Yun Yi, thanks for your heartfelt comments. I too, believe we have knowledge that can help us heal if we are attentive to what our bodies are telling us. I'm so glad you were able to get so well through this. Over the next few months I hope to really work at self care in hopes of at least improving. And thanks for the book recommendation, I haven't read it.
ReplyDeleteI also think that sometimes we can do everything "right" and still be sick. Call me a pessimist, but I believe that we can't control everything and sometimes part of being at peace with our situation is accepting this...I guess this is part of what I've come to after 9 years of being sick. Although if you read my blog you obviously know that I'm not always "at peace" with this illness.
upnorth, welcome!
ReplyDeletei agree, it was not easy to be at peace with this illness. especially, i do not believe we could have real peace until our physically situation changed fundamentally.
one thing important that helped me recovering beside diet is "rest". i was a long term insomnia sufferer, but about 3 years ago, probably i just hit a dead end and had to make a "turn", i learned to stop thinking (my favorite job!): consciously to let my (left) brain rest. it helped tremendously. but even that, didn't prevent me from feeling "irritated" when i got sick. but since over a year ago i found the last piece of my health puzzle (as i believed), things went up steadily, i was finally able to feel more peaceful than ever.
hope you doing better:-)
I completely agree with Yun Yi and that you must revolutionize your life style and diet. Listen to your body and give it what you need. I believe we should remove all toxins induced from our environment to help get better. Good luck, I follow closely, hope you get better. Check out http://www.newworldantidote.com for some more info.
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