Nephrology Clinic 4/8/2019

[foliedemars]

The four hour commute was difficult. I was doubled over in pain and sick with my stomach on the way to clinic. To top that off, I got rained on, so by the time I arrived to the office I looked and felt like a declared disaster area. I was weak, somewhat disoriented, and in severe pain while talking with the nurse and doctor. I felt very defeated.

 

We discussed genetic testing. This is something muscular dystrophy clinic promised to handle. They brought in a geneticist, we filled out paperwork, then nothing happened and my follow-up messages were ignored. They dropped the ball in a big way.

 

So now my nephrologist is involved. At some point, I’m hopeful that this will finally happen. 

 

Being in pain to the point of barely being able to sit in a chair or complete sentences was disheartening. My doctor always tries to relate to me in some way, I guess to ease my anxiety about answering questions. I enjoy talking to him, or I would if my brain would kick in and function properly in his office. I failed pretty hard, but I appreciate his efforts and his patience. He seems to be a genuinely good person.

 

He wants to refer me to a pain clinic. I can’t take most pain pills without serious symptoms, some of which involve breathing issues, but I have to figure something out, so discussing any reasonable options is the goal. 

 

I don’t have a clue how any of this will happen financially. I can’t bear to think about it right now.

 

I briefly mentioned that I started therapy, but that it’s not working. I told myself out loud that I have to keep talking and reaching out to the therapist, which he agreed. I have told others that I want to die, but I couldn’t say it to him. I’m sure he already knows, thus our conversation about finding quality of life and an eventual cure. 

 

He asked about my mother, who had the same symptoms but refused to pursue diagnosis, citing religion as a reason. She died in a paralytic state while also suffering from cancer (which she also refused treatment for). She didn’t want me having medical care either and accused me of having “a lack of faith” and “serving the enemy”, complete with performing countless exorcisms and eventually kicking me out for robbing her of her valuable time and spiritual gifts. It was a sad and scary era for both of us, to say the least. My medical journey is a source of trauma that has followed me through three decades.

 

I went ahead and mentioned this because it is one of many subjects of my stress therapy, which I’ll blog more about soon. I need to get past my next session first. Just know that rare diseases are painfully real and come with much grief and baggage that far surpasses the straightforwardness of medical literature out there. It has been a long, exhausting road to today, but for now, I’m still trudging it as best as I know how.

 

Comments

[marahmarie]

She didn’t want me having medical care either and accused me of having “a lack of faith” and “serving the enemy”, complete with performing countless exorcisms and eventually kicking me out for robbing her of her valuable time and spiritual gifts. It was a sad and scary era for both of us

You understand your mom was wrong to treat you this way, for her to treat both you and herself like this was not normal?

Do what you need to do to make yourself feel better and to get through this as best as you can - it's the least you can do for yourself.

[foliedemars]

Yes, I understand. I’m in therapy trying to deal with it.

[law]

it's awful that you're going through so much. i'm glad you're doing what you can to get care and i'm glad that your doctors are kind to you. the way parents have treated us can have such lasting effects. at least now, you're able to talk about it with someone else. i'm glad you're no longer around people who treat you this way.

[foliedemars]

Thanks, it’s a relief to live alone.

[xriverxjoix]

catching up on reading...*big hugs* my mom tried to say something like that about my mental health issues, and tried to get me to get annointed, but i think she's getting it now. (she's finally taking antidepressants herself, altho she still feels really guilty about it.) i'm sorry that your mom was never able to get past that. i hope the pain clinic is able to help you. *more hugs*

[foliedemars]

Thank you

[gwendraith]

I have no posts for you in my feed (it only goes back to May) and I was in hospital or home ill for much of April and May. I had no idea you suffered kidney and other problems. I'm so sorry you are suffering and I wish you success with the therapy and that you get some peace from your medical problems. It all sounds awful and makes me realise my problems are pretty mild in comparison.