Everything sublime is as difficult as it is rare. Baruch Spinoza

Saturday, March 4, 2023

Mark says he has alley cat charm.


I had an appointment with a Nurse Practitioner yesterday. She was very kind, spent a lot of time with me and it all resulted in nothing. I have become acutely aware of the limits of modern medicine. These limitations were highlighted in a book recommended to me by pixie, "The Invisible Kingdom" by Meghan O ' Rourke. It is worth reading. I also listened to an excellent program on NPR a couple of weeks ago; practitioners and patients talking about the inequities in the system where women are concerned and how everything has come down to lab reports. Puzzling over a mystery is gone from medicine. Sadly, I have become too familiar with that over three years.

I finally experienced what I have read happens when they don't have an easy answer; perhaps I should seek therapy. Not physical therapy. The other therapy. My response was, I feel hopeless and helpless because I am hopeless and helpless. I am because my physical body isn't working. It's not working has caused me to become inactive, not the other way around. I have purpura on my back, one knee and behind the other knee. For those who don't know what this is, like I didn't until I looked up purple blotches on skin, it's caused by small blood vessels bursting. There are also many small red blotches across my shoulders. It's the same thing, just smaller blood vessels. Purpura is a symptom not a condition. There are several conditions that cause purpura. I guess the medical info I read forgot to mention mental health as a cause of bursting blood vessels. In December about one third of my hair fell out. I have tremors mostly in my hands, but sometimes through my body. I am hampered as far as activity is concerned by extreme fatigue and profuse sweating. I did ask her why she felt it is worthy of concern that I feel depressed and hopeless, when I am unable to do much of anything and all I get is a pat on the head and told to take NSAIDs. I think it's a normal response, under the circumstances. She told me psychotherapy  would make the body issues better. OMFG. I have prescription pain meds from an injury I had but didn't need them. I'm going to use some for a couple of days to see if it helps enough for me to get some much needed housework done. I will give it a few days and then research further options. I'm not one to give up, even when I feel overwhelmed. Oh! She did say she would send my file to rheumatology to review. If they won't see me it will cost $50. If they do see me it becomes part of my treatment and insurance pays. The specialties have gatekeepers.

I am aware that trauma affects the body. I know that. I also know I am unwell and feel strongly it's not a mental issue. It's an easy out when a condition does not advertise itself. My physical abilities are worsening, whatever is wrong is progressive. A year ago I cleaned up our basement, painted a wall in the kitchen and kept the house clean.  I was able to do some yard work. All while feeling pain, but I could do it. Now I can barely cross a room. I must say this....I have never, ever been so thoroughly dismissed in my rather long life. It still stuns me.

15 comments:

Boud said...

I'm so angry that you have to go through this. Were you ever referred to an endocrinologist? I remember it came up earlier. I just wish any of these practitioners knew anything.

Val Ewing said...

Subtle hormonal imbalances cannot be detected by traditional lab testing, even if they may not feel subtle to you. That’s true of many other conditions including some autoimmune, malignant, allergic and viral diseases.

I don't have an answer for you. Ever consider Holistic/Naturopath medicine?

You sound angry, upset, and feeling hopeless so therapy to help you deal with some of that might be helpful. That may seem out of line to you, but I know I've needed a counselor more than once in my life to help me feel like me.

I'm so sorry this is happening.

Sandra said...

Boud, it feels unreal, yet it's very real. I was told endo won't see me because the labs don't indicate a need. They really do only look at lab reports and not the person.

Sandra said...

Val, I am angry and upset. For a good reason. I am not opposed to therapy but it isn't going fix my deteriorating body. I would consider myself mentally unwell if I were not upset and angry. I have used a naturopath years ago,. I used to see an osteopath until he retired in 2018. The problem is, these drs do not accept insurance. It gets very expensive. I appreciate you and you aren't out of line.

Lori Skoog said...

Talk about discouraging. I doubt if you are the first person who has had some of these symptoms and there must be some information out there somewhere. How were others treated? What was the result? How many doctors does one have to see before what is happening is acknowledged in some way? There are a few things that I know for sure....you are a great communicator, can cook up a storm, love animals and sure keep your readers coming back. Last night we had thunder, lightning, rain, sleet and very heavy snow. It's going to take awhile for it to melt. You must still have quite a bit. Keep hanging on.

Sandra said...

I find a lot of different conditions that meet most, if not all of my symptoms. Just by quick searches, Lori.
Because I have depression it's become the diagnosis. And that seems to be that. It's in my head. Somehow I had the power to will purple blotches all over my back, because I'm that powerful. It's likely autoimmune and good luck with that.

We are having a snow day all of tomorrow. Yes we are still in feet, not inches of snow. Which is normal.

You are very kind, thank you.

marlane said...

I am sure that the pain meds will help let us know !

Ami said...

I'm so angry on your behalf! What a bunch of stupid assholes!

"It's all in your head..."?!?

WTF?

I've considered ideas for other online friends with similar stories, one of them actually put an ad on one of her local Craigslists asking for 'a doctor who isn't a dick and wants to help me instead of kicking me in the ass'.

She actually got a couple responses and has finally found a doctor who listens. They still don't know what's wrong, but at least they're trying to figure it out.

I'm so sorry you were dismissed like that.

It might be worth a long letter to whatever governing body your doc practice answers to. I had an utterly horrendous experience at a Providence ER a few years back (actually two experiences close together) and the letter I wrote caused them to write off over 14 thousand dollars in expenses.

I know you're not after money, but these people don't like being sued. You should request that your chart be amended to add that rather than trying to help diagnose, they referred you back to the 1920s and the era of 'hysteria' in women.

I'm so, so sorry.
GAHHHHHHH

Far Side of Fifty said...

I am so sorry. This is a nightmare. I totally understand. I don't know what you can do next...find another Doctor...someone who will help you. And that is easier said than done. Obviously they do not want to help.:(

Far Side of Fifty said...

I left a long comment and it must be in La La Land with your Doctor. I am so sorry this is happening to you. I had hoped you would get some answers. To me a non Doctor looking at hairloss, fatigue and joint aches I would suspect autoimmune...lupus maybe and I know there is no test for it. My sister in law had lupus. Someone should be listening to you...you are a real person with real symptoms:(

Anonymous said...

I am glad you heard the program on NPR about women and health care. It made me wonder how many years will it take for women to receive equality...if ever. Will women always be told it is in their head?
I hope you keep looking and searching for answers.
Take Care,
Kaye

Sandra said...

marlane, the pain meds helped the pain but not the extreme fatigue. At least I got to be in less pain as I struggled!

Sandra said...

Ami, I cannot say how shocked I was to have it actually said. In my lifetime there have been implied instances, but never outright said. And by a woman. I was kind of knocked off my feet. My son was very correct when he told me medicine is embedded in the patriarchy and no matter gender, if you are in it you become part of the patriarchy. No one would say such a thing to Mark.

This is a very large clinic owned by Health Partners. They aren't going care one whit about me. I need to keep trying, the placing an add somehow appeals to me. Thank you for your righteous anger.

Sandra said...

Far Side, it's like I am invisible. I've never been easily ignored, I am shocked. I need to find another clinic, another Dr. I used an osteopath when I was having gut issues. He found the problem but he was expensive and did not take insurance. He retired in 2018. I may need to bite the bullet but I'd rather not. I think it's autoimmune and that is not in my favor. It takes diligence on the part of a dr. to diagnose and treat.

Sandra said...

Kaye, I'm thinking maybe never? It sets you back on your heels realizing this is happening to more women than just me. I will keep trying, I am not happy with my situation.