1 year 1 month

little updates for the changes I have seen in the past month:
– the “bloody wound” on my face, shoulder, elbow and calf is slowly recovering. area that was raised is now flat. still ooze and flakes though. not healed yet. 6 months and counting.
– skin feels a little swollen all over, I guess it’s edema.
– hands look smoother after shedding, lines not as deep set anymore, but it’s still very red and dry.
– redness spreaded to part of my palm and sole. raised and flakes and cracks.
– left index finger is really bad, raw and oozing. flakes and crack too.
– new oozing wound on the back of my calves, both sides. jeez. this thing never cease. have to bandage my leg to sleep in order to keep The ooze away from my bed. fuck this shit.

all in all, I see more worsening than improving.

I’m still red! scalp still dry.

I’m starting to consider cyclosporine, but I don’t know if that will help in the long run, or would it be a temporary fix. after all it is quite a load on the liver and kidney, I don’t really want to risk it. secondly, I still don’t want to see a doctor and be told otherwise about what I am going through.

I still don’t have the courage to look at my skin in daylight/lighted condition. it’s better to not see it at all.

when will all this end? I think I am in a continual flare, I have no idea why the body can be inflamed for so long. I am quite discouraged, to be honest.. but I have no choice but to keep going on.

for the past 6 months ever since my face turned really bad, I haven’t been able to open my eyes properly. my eye brows have been falling off too and have yet to grow back. last thing I want to do is to be seen by people.

I think it’s just as heartbreaking for my mother to see me like this.

I hope the end comes soon and set me free from this ordeal. fuck all these, seriously. what the fuck.

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6 thoughts on “1 year 1 month

  1. This dosnt sound right im stating to think this is not from the steriods,as i was on them for many years until i was 28,was cleared then it only came back 5years ago with a vengence im having a tough time too but you are suffering to much there must be something out there for you eg,reflexoligy homepathy acupunture ,i had light treatment it seemed to be quite good they wanted me to go on cylosiporine to,can you give me your private email maybe i can help,tmccartan@hotmail,com

  2. Hi Juliana, I am still having lots of dry skin, pimples, rashes, thin spots, nerve pain and and insane itching after 14 months without prednisone and 21 since cessation of steroids. I am getting a blood test done by a homeopathic doctor who will check 90 things like allergens and vitamin and mineral deficiency. The test costs $375, so it will be a while before I have the money. I am also going for a medical marijuana license for lozenges for pain and itching as I get very depressed, too. You should visit the ITSAN Private group, but you will need to accept my friend request first. Nothing is public and you can’t even find it on Facebook with a search, so it is a safe place to share. I am praying for you and really feel like this is going to be another 1-2 years for me after seeing Kelly take 35 months! Ugh! xoxoxoxoxoxoxo

    • thanks for checking my blog joey, i feel better when i cut myself out from everyone else’s misery, as if i don’t already have enough misery in my own life. i won’t join the private group. maybe i’ll join after i get well!

      guess healing takes a long time~ hope you heal soon.

  3. Juliana, I am so sorry. I know how you feel. I am coming up on 1 year and 1 month in about a week, and I have been in this second flare since December of last year so for 6 months now and there is NO break just like you…it is not like the first flare…this flare just sticks and doesn’t leave. I know how you feel, it is scary, but I really think we will heal. You can’t just believe it, you have to know it. Hang on…you are very brave and I share your depression. I was dropped from nursing school after 3 years of waiting. It happened last month. Top that with multiple staph boils all over my body from stress. So just keep hanging on, and I’m here for you…to talk…please share your feelings with me if you need to vent…I KNOW how you feel. Lots of love, Rochelle

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