I dunno why I'm sharing this with you all, probably just a means of coping with it?
I don't know what to do. I'm supposed to be happy during this time of my life. I'm in a relationship with the nicest guy I've met. He has an amazing job and he just won a bid on his first house. We can finally move out of this cramped, noisy, leaky-ceiling apartment. We can move into a nice house and start building a family there.
But all I can do is cry. Physically, that's about all I can do. I've had ulcerative colitis/chron's disease since I was 21. Five years of off and on health took a toll on me, mentally and physically. But earlier this year, I thought I finally beat it back enough that it wouldn't have such a control on my life.
Then I found out I made a typo on my health insurance application. Long story short, my health insurance was terminated due to a grave mistake on their part when trying to fix it. I started running out of medication. $1,000/month medications. My symptoms crashed. As the health insurance marketplace dragged their feet to fix the error (still not fixed more than a month later), my health deteriorated as I fully ran out of rationed, inferior medication. I sent in a form, pleading with the pharmaceutical company, and they were gracious enough to send me one of my medications, the oral one, free of charge.
It was too far gone, though. I got the medication two weeks ago. The medication isn't designed to induce remission by itself, so it's barely helping. Combined with my mental state, it is the worst I have ever been in my life. I'm still suffering from 20-30 bloody diarrhea bowel movements a day. My descending colon shoots a pain like you wouldn't believe when any slightly solid waste moves through it, causing me to be wracked with nausea until relief. My anemia has gotten to the point that I can no longer walk to my car without stopping to rest. I can't stand up with any speed without nearly passing out. My legs start to cramp up after doing any exertion, like walking up flights of stairs. My tongue gets swollen and I get strange sores in my mouth. My chest hurts and my heart pounds when I do the least bit of work.
My transition has taken the back burner as all my fat wastes away from my smileless face and droopy eyes. I never look at myself in the mirror anymore out of fear of what negative changes I'd see.
I can't work. I tried to today. After lifting a few boards into a truck, it felt like I just ran a quarter mile. I got a shooting cramp in my stomach and had to use the bathroom, which was the third time since I clocked in an hour ago. I left.
My mom asked me what I wanted for my birthday, which is coming up soon. I know my parents are a little short on money, so I didn't ask for much. I asked for 5 or so hours to be added to my paycheck (I work for them) to help me pay for a doctor's visit since I can't function anymore, and the business could afford it better than they could. While I was in their house that day, I bent down to pick up a piece of trash that missed the can. My mom was standing above me with $200 in her hand. I refused, telling her it was too much, but she said she was saving it for me. I just cried.
A new house always stresses people. My boyfriend is paranoid about losing his job even though his boss loves him and there's no lack of work in sight for a long time. He dwells on worst case scenarios, which is good to a point, I guess.
After realizing I can't work, he was visibly more stressed. My hours were dwindling anyway at work because it's a slow season, and I could tell that was making him uneasy. Couple that with my failing health making it harder and harder for me to work as the weeks droned on, it started putting stress on our relationship. My poor health makes my prospects of finding a new & better job (something he remains adamant on me doing) even more bleak.
With just his income, he can easily afford the house. He's just worried about worst case scenarios, like job loss, accident, etc. It's smart to think ahead, and I understand his issues. He told me today that he can't afford to feed two people alone (which is untrue but I don't want to impose myself on him like that). I waited a bit and offered to move in with my parents and try to work a little there while I was sick so he didn't have to pay for my food. I left to go tend to the oven. When I came back, he was crying.
I hate making him cry. I hate this disease, I hate not having medication, I hate not having insurance, and I hate my ->-bleeped-<-ty state for not expanding medicaid.
I made a doctor's appointment for Tuesday. I don't know how much longer I can hold out. No matter how much I sleep I'm still exhausted. I wake up every hour to use the bathroom, anyway, so I hate sleeping. I don't want to go to the ER.
edit: Update below
Sweetie, I am so very sorry to hear this is happening to you. Yes, this should be a happy time in your life and it is so unfair that it isn't. I really wish there was more I could do to help other than offer virtual hugs and well wishes - please get well soon.
Yes, most bestest wishes for you and your situation..
I'm so very sorry for your pain..
I send you hugs too, and will say a prayer for you and your family..
Bless you,
Mark
I'm sorry this is happening to you. I had a family member with similar digestive problems and I know it's hard for people to understand how serious it can be. Good luck with that and with your insurance problems. There have been times where my daughter's coverage got messed up due to clerical errors and I know that's a nightmare. I can't imagine what it must be like for you trying to juggle all that stuff at once. I hope you don't feel too alone.
sorry, I pray you get to a better place quickly,
To echo what the others have said I wish you the best and for you to heal well. Having said that I know you really don't want to go to ER (esp when your insurer is being rubbish) but please reconsider if you start to become dehydrated or show signs of electrolyte imbalance (muscle weakness, tremor, seizure, heart rhthym changes, palpitations, passing out, etc.)
For intermediate needs, have you considered medical crowdfunding to fill the gap with your coverage? I don't know how well it would work but sites like giveforward.com (theoretically, I have no experience with them) exist to help people in need.
Really, best wishes and I truly hope things turn around for you.
I have family members with Chron's disease, so I totally understand how utterly debilitating it is, and I wish you the fastest return to a stable place!
From what you write, it sounds like you have a wonderful, thoughtful boyfriend. Keep loving each other, despite the setbacks and obstacles. Maybe you can't see it now, but having that man in your life makes you one of the luckiest girls around.
Hugs, and more hugs.
J
Hugs, I too echo others comments and I will be thinking good thoughts for your recovery.
What a horrible time you are having. I wish there was something I could do to help. I am sending healing thoughts your way.
Thank you all for the well wishes. They mean a lot to me. I'll try to hang in there
Quote from: Hideyoshi on September 21, 2014, 03:25:10 PM
Thank you all for the well wishes. They mean a lot to me. I'll try to hang in there
All I can do is wish you well. Was your problem caused from the girly pills or did you have it before?
Quote from: mac1 on September 21, 2014, 03:56:49 PM
All I can do is wish you well. Was your problem caused from the girly pills or did you have it before?
Had it before. Mine is genetic
US health care can be so third world so often.
I'm sorry you are experiencing this and hope you can get things straightened out.
I am so sorry for the way life has turned for you. A scenario, if you did return to live with your parents for a while, that would put you as a dependent, if they pay into a medical plan that should put you under family coverage, unless you parents don't pay for family coverage. I have a friend in the states that gets medical coverage as she qualifies as a low income earner (self employed). What about if you health keeps you out of work for a while & you are working, would workmen's compensation be a possibility? Just some thoughts.
Best wishes that you get health coverage straightened around quickly so you can get your health righted.
I have followed your posts & seen you grow through the years and like you very much. You have progressed into a Beautiful looking lady.
Hugs
Jamie
Update: I went to the doctor today. Used out of pocket birthday money because we have the 'Best Healthcare System in the World™'
I stepped on the scale and was like damn... 10 pounds lost so far ): it's so hard to keep weight on with this sickness
Good experiences that came out of visit:
1. Got some cheap (but powerful) steroid medication that should hold me over for a bit while my healthcare is fixed
2. Nobody gave me second looks (as in omg transgender) even though my facial expression was probably that of a wounded deer. A patient in the waiting room even was like 'ma'am your shoe is untied' :P
3. Just being in the setting helped my anxiety a bit and even after the first dose I am already starting to feel a little better mentally and physically
Thanks everyone for your kind words in this painful time for me, they mean a lot.
Quote from: Hideyoshi on September 23, 2014, 07:54:24 PM
Update: I went to the doctor today. Used out of pocket birthday money because we have the 'Best Healthcare System in the World™'
I stepped on the scale and was like damn... 10 pounds lost so far ): it's so hard to keep weight on with this sickness
Good experiences that came out of visit:
1. Got some cheap (but powerful) steroid medication that should hold me over for a bit while my healthcare is fixed
2. Nobody gave me second looks (as in omg transgender) even though my facial expression was probably that of a wounded deer. A patient in the waiting room even was like 'ma'am your shoe is untied' :P
3. Just being in the setting helped my anxiety a bit and even after the first dose I am already starting to feel a little better mentally and physically
Thanks everyone for your kind words in this painful time for me, they mean a lot.
:'D stay positive hun, you can do it.
good news
I am pleased for you that you got medical attention. Thanks for the update & keep us posted. I sincerely hope that your healthcare gets fixed quickly for you.
Take care.
Jamie
I'm so sorry for what you're going through. Hopefully things will get fixed soon.
I'm glad your doctor visit went well!
Keeping you in my thoughts, feel better soon!
I'd like to thank everyone for the well wishes. My insurance got fixed better than a week ago, and I was able to get the effective medicine I needed. My symptoms lowered to a manageable level and I no longer fear not having access to a toilet :>
I started gaining weight again (boobs coming back yay) and the prednisone stopped interfering with my estradiol since I finished it. Now if I can just kick this stomach flu I can start getting better :)
thanks again everyone, it means a lot
that's great
Hideyoshi, Great the medical plan is in force for you. That illness was dire, Happy for you that you are back to putting on weight & getting healthy again.
Take care
Jamie
So glad to hear you are on the rebound. Get well soon.
Yay! I'm glad you're on the mend! I send my love and positive thoughts! Hugs!