So, a long overdue post…
Firstly, happy new year!! 2013, eh? Man.. Where did the years go? Anyway, there’s a new treatment on the horizon for me. New year, new attempt at beating this disease. Its Humira, and I’m currently waiting for approval from the health board for ‘off-label’ usage. Hopefully, in six weeks I’ll be getting a battery of tests done in preparation to begin treatment. So for now, its a matter of waiting.
Also, finally getting a referral to the chronic pain clinic. Not sure what to expect there, but at least it looks like a step towards getting my life back.
Feeling a bit rough this evening, so I apologize for the super short post, so here.. Have a sloth.
See, far better than anything I could write anyway!
Well, saw the Dermatologist Wednesday. He says that we’re not going to do any more long-term antibiotics because they just don’t work on me. (YAY!) But he says that the big wound on my left arm that keeps testing positive for MRSA is not a normal presentation of Hidradenitis, so he’s sending me to the surgeons for a biopsy and to plan for wide excision surgery. Apparently its too big and not typical, so he wants to see just what exactly is going on with the tissue there.
He was actually really easy to talk to as well. The last dermatologist I saw didn’t seem to care that antibiotics never work for my HS. This one was more than happy to stop the Clindamycin and Rifampicin, and even said that after surgery we would have a go at Humira, Infliximab or something similar that has shown good results. He actually was familiar with the studies done on TNF-inhibitor drugs and that they seem to reduce the effects of HS when all other treatments have failed.
So now I’m just waiting to get my appointment for the surgeons so we can move on and get this thing under control.
I haven’t written in a few months, and although there has been good reason, I still feel like I’ve been neglecting this blog. Its been bad. I’m still testing positive for MRSA in one wound. The big wound from three months ago, that is still getting worse and refuses to heal. I’ve been pretty depressed and feeling sorry for myself about it. Some folks with HS seem to do fairly well at not throwing pity parties, they just get tough and keep their chins up. Unfortunately, as much as I want to keep fighting, I’ve had enough. I’m constantly in pain, stuck with less than useful treatment, and I’m fed up with it.
My doctor thinks I need a skin graft, as the wound is already a good 4 inches by 3 inches and getting bigger all the time. My nurse thinks I need a wound vac treatment to try to get it to heal without grafting. My dermatologist hasn’t seen me since the end of August, but I’m due to see him Wednesday. I’ve been on too many long-term antibiotics and I feel like this might be why I’ve got MRSA now.
So, yes, I’m feeling sorry for myself. No, I don’t feel like fighting anymore. I’m not going to put on a brave face, I’m not going to post about how tough I am and how I won’t let this beat me. I’m sick, I’m miserable, I’m in agony. I’ve accepted a part-time position in a shop over the holidays because we’re hardly making ends meet, and God knows I might just have to phone and turn it down depending on how Wednesday goes. I mean, how do you go to work in a big name brand, fashion-focused shop with a wound vac attached to you? Yet another reason I feel useless right now.
That’s about all I’ve got right now.. Maybe Wednesday I’ll be able to write something more optimistic.
I’m finally back. Not really feeling all that great, but I need to get back on the blogging ball. As you may or may not know, a few weeks back I found out I had MRSA in some of my HS wounds. This landed me in the hospital for three days on IV antibiotics and pain killers.
Previously, I mentioned that my HS has been causing me quite a bit of grief. I had hoped that it would get better. Unfortunately, it has not.
This morning, I had a phone call from my doctor. About a week or so ago, they took swabs of all four areas affected by HS. The last of the results came in this morning, and it turns out that all four are positive for Group B Strep, while two are also infected with MRSA.
I have just started my one-week course of Penicillin, Doxycycline and Fucidic Acid cream, and am feeling really very nauseous. I return to the doctor Thursday the 23rd and will be updating about the situation then.
In other news, the Hubby and I are making our niece a birthday cake this weekend. (Well, he’s going to do the work while I sit and instruct him really. He’s adamant that I not do it because of the infections and how sick I feel.) Pictures will be posted Monday. Until then, I’m headed back to bed.
So yesterday, I turned 24. Twenty-friggin-four. Where did the time go?! But it was a lovely day, and I got to spend it all with my amazing hubby who made me a cake!! He spent all night Sunday baking and decorating it by hand. I love him. 🙂
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I’ve been neglecting this blog. I didn’t mean to, I really didn’t. Its just my HS is giving me a really hard time lately, and I’ve been mostly out of commission. I’ve had a rough time, and its not stopped yet. So I might not post often for a little while. Until we meet again, I’ll leave you all with a few photos. The Mister has taken to baking with me and even made two loaves of bread himself yesterday. I love him. 🙂