Tuesday, May 30, 2017

Busted Mayo, disappointment oozes

The thing about having a rare medical thing happen to you is that you're often left in limbo as doctors figure out what to do with you. I'm lucky to have a really great team of doctors here locally, and I feel like they genuinely are trying to do the best for me. They all have said that most everyone dies during an Amniotic Fluid Embolism and those who do survive have such a variety of things to deal with in the aftermath so there isn't anything for them to look at as a guidebook on what to do for a patient.

As for me, the things I'm currently diagnosed with are:

  • hypopituitarism 
  • secondary adrenal insufficiency
  • low thyroid
  • depression
  • anxiety
  • adjustment disorder
  • PTSD
  • OCD
  • suicidal ideation
  • migraines
  • Raynaud phenomenon
  • hypoxic encephalopathy 
  • Sheehan Syndrome
  • Secondary Amenorrhea
  • Diabetes Insipidus
So, it's a lot. I'm trying to juggle all of it and I'm really having a hard time keeping track of not just my medications and what is for what, what each thing is supposed to be doing for me, and how do I know if it is or isn't working, but I'm having a hard time keeping track of my physical symptoms and what each one is associated with. Some days I feel like I almost need a health professional here to just keep track of it for me. And when I have an issue? Who do I call? Do I call my primary care? Do I call my endocrinologist? Do I call my neurologist? Or do I need a different doctor? 


Last week I had my three month follow up since my last appointment at the Mayo Clinic in Rochester, Minnesota. I wasn't totally sure what the point of the appointment was because they didn't tell me, so I went in not knowing what to expect. I knew I was going to have a lot of lab work and then my appointment, so I was there for an entire day. Nothing in my paperwork told me not to take my medication, it only mentioned not to take a multi vitamin or any medication containing biotin, which I don't take so I was in the clear. I even asked the lab technician, and she said I was good to go, which is great because if I don't take my medicine in the morning I am really nauseous and dizzy, just generally unwell. So I give my blood and I'm off to wait for several hours of waiting. I brought a book so I was OK with that. Had a small lunch in the cafeteria because I didn't have much money, and off to wait on the 18th floor. 

At my appointment the doctor informed me my labs were a total waste of time because I had taken my medication, which I should have just known to not take. Apparently she told me this three months ago and as a stroke victim with memory loss, I'm supposed to just remember this. 

(You're right, you're sensing a little sarcasm there. By god the ol' gal still has it.) 

I start telling her my symptoms: extreme exhaustion, nausea, feeling like I have a fever and the worst flu of my life though I have neither, dizziness, my hands/arms/feet frequently go numb or feel tingly, and when I do any kind of activity (like walking a few blocks) I feel like I've been beaten with a bat. I walked for a few blocks a few weeks ago and for three or four days after I could hardly move, I mean, hardly move and I'm not exaggerating. Every muscle and bone in my body hurt. There are some days I get out of bed and I really can't even lift Lucy anymore, let alone carry her down the stairs- I have to rely on Olivia to get Lucy and Penelope down the stairs in the morning. 

I'm detailing this to her, she's typing on the computer (I'm assuming she's documenting all of this), and she says to me, "Well, as long as you aren't dealing with nausea and fever, dizziness, that kind of thing..." 

Um... are you kidding me? Did you hear me? Did you seriously not listen to me? I just told you all that? 

So then I say it again. I go over it all again. I show her my emergency sheet where it says the 'warning signs of adrenal fatigue' and I explain to her that's how I feel EVERY DAY. Even if I take an increased dose of hydrocortisone, I still feel like that, what should I do? No answer. 

So I do what I absolutely hate, I absolutely hate because it's weak and it's not me at all. 

I start crying. I start crying because I'm confused, I'm overwhelmed, I'm frustrated, I don't know what else to do. I feel like, again, nobody is listening to me. Like I can't explain my situation well enough. That 10 months ago this would not be happening to me. That I would be able to explain how I was feeling and get my dilemma solved. But now? Now I feel like I'm speaking in a foreign language and nobody understands it. 

Overall? The appointment felt useless. I left there feeling like I wasn't heard, like none of my issues were worthy of being fixed. I honestly don't know if it's worth my time (or money) to go back. I have a message into my endocrinologist here in Duluth so hopefully he'll have some ideas for me. I also have one in for my primary care doctor too because maybe she can help me with the numbness and tingling in my hands and feet since that's relatively new. 

The most frustrating thing is every doctor wants me to lose weight, which I agree, I want to as well. I'm the heaviest I have ever been. The problem is that they all acknowledge that being on a steroid forever makes that difficult but to do the best I can. But every time I do any kind of exercise I'm in so much pain for days... what do I do about that? I can't be left immobile. I have to be able to move, be able to get out of bed. People keep asking if I have Fibromylagia and I just don't know enough about that. I've read a lot of articles and it's split 50/50 down the middle of it being real or not. I do know that I don't want to be on pain medication and I absolutely cannot afford another medication. Even if it does bring relief, I just can't afford it. I'm already worried about being able to afford what I have come January once my deductible starts over. 

So I'm going to keep plugging along. I'm still seeing my therapist every other week, and my psychiatrist who I feel really sorry for because I feel like he's really working hard to help me, and my myriad of doctors. I am having a sleep study done in June because the pulmonary doctor said my exhaustion could be my adrenal insufficiency, but it could also be me sleeping like junk at night. So we're going to do a sleep study to either rule one of those out. I'm kind of nervous about that because while some people can do a sleep study at home I have to do mine in the hospital because I tick off enough things that they want to be able to monitor things more closely. So that will be an experience, I guess. 

It's kind of strange to think I'm quickly approaching the one year anniversary and I feel no different. I feel like I haven't healed at all, I've not improved in my health, and I still feel like I'm in limbo. It's been such an awful, strange year. 


Julie H said...

Well that sounds like a horrible experience. I think you need someone to go with you to these things. I think it helps if you have someone be an advocate for you. I have had to do that for my husband and it really helps to have a 2nd person.

Ruth said...

I don't know if it is fibro. Part of the criteria is the presence of pressure points. There are 18 and I believe you need to have 11 of them. But, it could be rheumatic in nature. There are over 100 different types of arthritis that fall under that umbrella. I have ankylosing spondylitis and that is one. Steroids can cause joint problems also.
I have learned that you are probably going to find out more doing your own research than by relying on doctors.