Migraine medicine keeps the pain at bay but I only get 18 a month, so I have to pick and choose what days I sit in agony until I can't take it anymore and it depends what I need to do.
I moved to a new city that seemed to be a good move for me medically, but the medical records nightmare for 2 months has kept me from seeing anyone for the problem and getting meds. My disability has been under review for 18 months which is too much stress, they say I can work full time. If I can't get the records here, how can they get them there?
So many issues going on I had to close the small hobby business that I was running a few days a month since the public housing here made it into a nightmare.
I sleep sitting up a few hours at a time so sleep eludes me, laying flat puts pressure on my face.
There is no one I know in this new town, and now my blood pressure is sky high.
Everyone I talk to talks to me like a child who doesn't understand my own life, when it's really as stupid as it sounds. They refuse to believe it's as bad as I say. That helps. So I have isolated myself now and talk to no one, but am in a place where I can't stop crying which makes the pain all worse.
Supposed to have surgery next week but they may put it off with the high bp.
I'm at that point I was last year where I truly feel like "what's the point".
Hurting this bad and everyone just ignoring me, out of fight, is being here worth it?
Hello, Tie a knot in that rope and hang on! You may be one of the cases that gets total relief from the surgery. Contact your Dr. and ask him to treat the blood pressure issue more aggressively and ask for a referral for a psyc. Consult as it appears depression is coming into the picture. I hope things go well for you. Best of luck. Joe
It saddens and angers me to read your post, it truly does for so many reasons!! I’m so sorry you’re struggling in so many ways with no support.
The high BP and your intense pain levels should be the focus, if you had enough medication to ease the pain, your BP would probably lower, and the stress would probably be more manageable.
Is there any way to get your medical records faxed to a new doctor? Why is it so hard for doctors offices to communicate in this day and age ?? Ugh, so frustrating! I don’t pretend to understand why it’s a nightmare, but I pray it gets sorted soon V. You’re in a pain crisis! You shouldn’t be rationing when you take meds and when you suffer!! I’m so sorry.
I understand why you’re feeling so hopeless, there’s a lot going on and it can be completely overwhelming…is there anyway you can get some help even from a distance from family and/or friends to help ease the load on you??
Please don’t isolate yourself, find one person you can tolerate and confide in.
Right now you need support more than ever.
Could you go to an ER? Hospitals have social workers who may be able to direct you to community support or help expedite the process with your records…??
Hang in there my friend, you’re not alone…you have ALL of us.
Thinking of you and will pray that things turn around ASAP!
((( hugs ))) Mimi
Hanging on is always worth it. We care, and we don't want you going anywhere. The reason Ben and Scott started all the rare illness groups is that through Bens illness they recognized how isolating a rare disease can be. So we all have our TN family here to turn to when other support may be lacking. My heart goes out to you, your circumstances are not great. But please, be here for us, we need all the members we have to hang on in there, please.