MCTD Support Group
Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...
I have not been able to post lately as my life is a mess right now. My husband has prostate cancer and had surgery in November. The Dr had great hopes for a cure with surgery and assured him that he would have bladder control with in 6 months. Well, the tumor was small, not really agressive but was up against the rectum and so he could not get it all. He was to have his catheter out in a week, it was 5 weeks. The catheter perforated the bladder causing much bleeding and pain. It has been 5 months now. He still has no continence in spite of pelvic floor PT and now he has to have 40 radiation treatments. He is very depressed and doesnt want to do anything or let me out of his sight. He has leaked urine all over the house and I am constantly cleaning. He tries and it is getting better but doesnt always change his pads soon enough. I am doing everything I am able but I am tired.
My daughter will have her court appearance for disability in June and I have been having to gather records. Of course that is never done with one call or visit and there is a charge.
We spent $45,000 last year out of pocket for our medical last year. I am glad we have the money but this is nuts! My husband went on Medicare at the beginning of April, I go on in May. Meanwhile, I had to get a new policy for 1 month. So I will be on 3 different policies this year. My daughter had to go on Obamacare with a high deductable but has to have it due to her heart, eyes and Cerebral palsy. She works part time and cannot pay all of her premium each month with what she makes much less her co pay or any other expenses. She works at a part time job for the disabled. I am afraid she will not get disablity and so will not be able to get Medicare or Medicaid.
I have this rash I cannot get rid of. I went to the family Dr who thought I had a drug rash. He sent me to an allergist who thought it was autoimmune and would not do drug allergy testing. I went to the rheumy who said it was not autoimmune and told me to go to the dermatologist. He did blood test for autoimmune stuff and inflammation which were all normal so he said I was in remission. I saw the PA at the Dermatologist office who was not impressed but did a random punch biopsy which showed 1- Drug rash, or 2- poikiloderm. She thought it was a drug rash and sent me back to the family Dr who said I should not worry about "a little itch"! Bull shit! In the meantime, I had stopped taking all meds that I thought would not kill me and got a steroid shot in my shoulder for a frozen shoulder. And did PT for it. I got pretty good results and the rash went away. It came back. I went to the Dermatologist for my annual rosacea complaint. She saw the rash and said it was definitly autimmune and not a drug rash. She said it was Livedo Reticlarsis or Poikiloderma. She said it could me just the skin or cause a vasculitis which was very serious. She did another punch biopsy and said come back in 2 weeks. I lost my keys at the office and we looked for 30 min before I found them between some cushions in the waiting room. I had to call a friend to take m daughter to work in the meantime. I came home and the power company had the power cut off while fixing a line in my back yard. I need a root canal and will have that tomorrow. At least that will get rid of the pain in my tooth, but more money.
I stay pretty upbeat but I am overwhelmed. This is a good place for me to let go. Even if nobody reads this, I have gotten this off my chest and that does help. Hope all of you are doing better than this train wreck.
Mary Ann
Mary Ann
sorry you are going through so much. I'm pretty fatigued and brain fog, so I'm not on anything much anymore.
As you might know Livedo is often associated with APS or Hughes Syndrome.This was added to my lovely group of autoimmune diseases 2 years ago. Here is a website with some information:
Hope things start improving. Ann
Mary Ann
https://ghic.world/
Brain fog in action.
There is a seronegative version & some new autoantibodies they test for now.
But Drs. in the US are very conservative diagnosing it, since they are afraid of anticoagulation.
Mary Ann
WTF?! That is a roll of seriously rotten luck. Since I don't have any good ideas, here are a ton of bad ones: We need to ask the croupier for a new deck or a new pair of dice, talk to the dean and get this semester's grades thrown out, send back the month of April as generally defective and demand a replacement-- or see if they'll come down on the price. 45 large is a lot of coin.
I am really sorry your husband is having such a bad time. I know what it's like to try to care for someone else when you are exhausted yourself. And the issue with doctors talking to doctors is maddening... I run into this as a therapist all the time... get the release, leave a message, the doctor has to get a release, leaves a message.... their staff then exchange messages.... missed phone calls, more voicemail...
A word on brain fog: If the keys were between cushions on the couch, it's absolutely not your fault, so don't beat yourself up about it. (If you put them in the fridge, or used them as a lure for fly fishing, okay, then we can worry a bit and have a different conversation.) What this does mean: If you were wearing pants, and they fell out of the pocket? Throw out the pants.
I learned this from a stranger on the subway in Manhattan about 30 years ago... I stood up, and fortunately saw my wallet on the seat when I got up. This young black guy is sitting across from me, and he says, "You got those pants at the Gap, right?" And I'm like, "Yeah." And he says, "Get rid of them-- now. I had the same pants and my wallet kept falling out of my pocket, too. It's a bad design, it will cost you more than the pants did, trust me." And I was like, "Great idea, thanks," and went home and threw them out immediately.
So, if you think you have a monopoly on rambling posts that make no sense? Think again. Ann, I'd love to have more info on brain fog and Hughes. My memory is getting super weird... like, I can't even describe this, maybe it's the cannabis oil, but let me try anyway: Some things about my memory are WAY better. Never lose my keys or phone for more than 5 minutes, as I've mentioned a few times-- huge improvement since 5 years ago-- and my memory for narrative, which was always awesome, is now almost inhuman. Great for being a therapist, my clients gape at me slack jawed with awe when I remember some weird detail they told me 20 months ago.
But it's also getting worse at the same time. I'll think to myself, "Aw, man, I've got to respond to that records request..." then realize that I already sent the records last week. Or the reverse happens-- I'm rehearsing for a show, and I'll think, "Man, that was great, I'm so glad I did that even though it was a pain in the ass," only... I haven't played the show yet, the show is on Friday. This only happens for a few seconds here and there, but it's definitely bizarre... I think it always happened occasionally, but it's more frequent now.
What's happening is my sense of "now" is sort of disintegrating. It's not like I'm remembering something that didn't happen yet, it's more like I am enjoying something that I haven't done yet without bothering to notice that it's in the future, not the past.
Assuming that my functioning remains unimpaired, I kind of like where this leads-- past, present and future become meaningless abstractions, which pretty well nukes fear of death and disability.
Which leads me to what I like about your post: You sound frustrated, but weirdly calm, about your recent misfortunes. You don't sound overwhelmed. I'm wondering if maybe you have a little bit of this sort of... benevolent nihilism that I'm experiencing as well, but in a different way.
So you are doing more than vent. This is helping me-- knowing that you're walking through this. I feel less alone, less afraid.
Thanks for that! Hang in there, post back, and keep telling us how you're doing!
I went to see my daughter's lawyer and was very happy with the case she is presenting. She wants me to testify as to all my daughter has gone through in her life. Wonder how many hours I will have! LOL!
The spouse is on testosterone blockers preparing for radiation. It really makes him weak. I told him that now he knows how women feel! Ha, ha! He has been trying to work in the yard and that helps his mood.
Of course the changes to my insurance have messed everything up. Cant get my meds. Drs charging to the wrong insurance and getting turned down. I keep getting bills and calling. What ever. It is their problem as far as I am concerned!
Anyway, this sure explains my joint pain and fatigue. As for benevolent nihilism (which I had to look up as it is something I studied a looong time ago) I think it is more acceptance of reality and just dealing with it day to day. I have conditioned myself to just forget what is not important today and not worry about the rest. I have to make lists so I eventually deal with the rest of the stuff. Due to the fatigue, it is hard to take care of all the little stuff, like weeding the garden, or moping the kitchen. I now see why older folks let their homes go to hell! I am looking into what I can dump out of my life. I do a lot of charity work and really enjoy it but find it is taking too much time for someone who has to sleep 10 hours out of 24. Maybe the fatigue will be better soon.
Matt, your sense of time sounds off. That must be so strange. It is like the dream I once had that was a day in my life. When I woke up, I was so confused as to what day it was and that all that stuff in my dream had not happened but I was responding as if it had! As for your sending records and not remembering, I paid my fee for my new dental insurance 2 times in 2 days! It was for a year as there was a considerable discount, but I wrote the second check for the wrong amount. It left us all confused. But I just roll with it and claim the old lady card! That is very helpful! LOL! Maybe you could dye your hair gray and claim the old man card!
Thanks for the folks that replied to my post. It makes me feel better.
Mary Ann