Decemeber 7, 2009

I haven't found it in me to write in here everyday, because well, not much has changed. I am still in a lot of pain as usual. Last Thursday I made it to work, in pain, but was still able to make it in. We had our holiday party that night and we were given Friday off. Over the weekend a few sores began to swell again and I was unable to go into work again today. I currently can't wear normal clothes because my undergarments hurt. I've been trying to get my paperwork for FMLA updated for work because my frequency has gone up, and the office has been less than helpful. I was told Friday that it would be faxed and today find out nothing has been done, over 72 business hours have passed and I'm losing faith in all of it. My hope is fading and it's getting harder and harder for me to even try and get out of bed each day. I'm so sick of feeling alone in this.

November 30, 2009

Today I stayed home because I have a few boils preventing me from even sitting on the toilet correctly. It's a chore and a half to bandage myself, and I honestly don't have the money to buy packs and packs and packs of bandaids, but I have to. I had my appointment with my dermatologist moved up to tomorrow since I already have a scheduled appointment later in the day. I couldn't do much around the house today, I mostly sat on the couch trying to find a position I wasn't cringing so much in pain. I have to sanitize my toilet seat about every time I use it, because the pressure will make my boils drain. Today was one of those days. I wrote to a HS forum today because I am feeling more and more hopeless as the days go on, and my depression has gotten to the point where I want to go see a psychiatrist, but I just don't have the money even for the co-pays. With me missing so much work, and a tire shredding on the car, now I don't even think we'll have a Christmas this year... and I'm so sad. HS has taken away my independence and now I have to rely upon my fiance to support us until I can get disability. I hope I can at least run a few errands tomorrow and possibly do laundry... chores and errands really can stack up when I can't move around. Hopefully a less painful day tomorrow.

Catching Up...

I've forgotten about my journal over the last few days, mostly because I've still been stuck at home in major pain, missed work Monday and Today. I was in a lot of pain Saturday and Sunday while visiting with my friend and it is really draining to have to cancel plans because of being in pain. I am currently battling depression and am taking 40 mg of Celexa a day and 10mg Klonopin when I have panic or anxiety attacks, or when I just have really high anxiety.. which has been often with stressing over bills and debt because I've been out of work so much. My employer requested that I update my FMLA paperwork because I've gone over the frequency I listed on the initial paperwork and I'm really getting scared because my skin is getting worse and worse. My life has been turned inside out and I am finding it hard to keep up financially. Luckily I have the support of my fiance Ryan and I couldn't go through any of this without him by my side. I truly am blessed to have found the love of my life and I can't wait to spend the rest of my life with him, but we've had to move our wedding date back, and have stopped planning as a result of our financial situation. I really want to move out of state, but first we need to try and get our debts taken care of and I really just don't see a light at the end of the tunnel. I have always had more sores under my left brest, but now it has spread to my right breast. I can no longer wear bras for a long period of time, and the entire time I am in excruciating pain and the flare ups worsen. I can't even count how many sores I have right now, and I am terrified to even try to count. Every time I shower I spend time draining some boils as well popping the zit like ones. Many are so deep I don't dare try and drain... but they continue to come back over and over and make it very difficult to sit even. I usually try and lean on one side or with a leg under so that no pressure is put on them.... this makes it so difficult to sit at work all day. I just want to have a few pain free days. I really need help.... I'm getting really discouraged. My fiance and I saw something about a Zinc supplement helping, but we'll see... I'm hoping for the best. We get paid tomorrow... I think I only worked one or two days of the pay period and he missed a few days being sick with an ulcer... and now I'm jut scared we won't have even a small Christmas. I just want to cry...

Friday, November 20th, 2009

I'm home in pain yet again. I currently have a few boils draining on my thighs, and a bunch of swollen ones as well. I can't put a bra on, I have too many swollen spots. I have now missed 8 days of work. It feels like it's never going to get better, and I've gotten pretty scared. Laundry needs to be done, as well as vacuuming and I have to wait until I'm high on pain killers to halfway function. I spoke with the HR lady today at work and apparently they want more FMLA paperwork because the quantity of flare ups has increased from when I turned in the paperwork... so pretty much they're trying to get me to quit, or fire me some way or another. I'm so disappointed in my employer and there lack of support. I'm also pissed off about being in the grey area when it comes to short-term disability and how hard it is going to be for me to get on actual disability. Hence why I have started documenting in this online journal and also taking pictures.. which I hate, because the last thing I want is to look at how ugly this disease has made me feel. Luckily I have the support of my fiance with this disease and he has been more than supportive, he's been the one that keeps me going when I feel like giving up. This disease has taken so many things away from me and I hate it. I want to be able to work, wear clothes without worrying about staining or covering my scars, making sure they aren't too tight, but too big is bad too. I just want to find a way to control this disease and maybe venting will help me.

Over 13 years living with HS and this is my first diary...

I've decided that I want to document my daily life with Hidradenitis Suppurativa (HS for short). This journal is more for my own medical record needs and to document every single flare up and how it has affected my life so negatively. Today is Friday, November 20th and I've been unable to go to work since last Tuesday, and although I do have FMLA at work, I've been missing way too much work because of my flare ups. It is financially/physically/emotionally debilitating and the more stress I have, the more the condition flares up. I started getting boils around the age of 11, self diagnosed at around 13 with internet research and saw many doctor's including multiple Dermatologists who all brushed it off as a staph infection and would prescribe nothing but numerous anti-biotics and different washes and creams. For years I have dealt with the daily pain, the immobility and emotional burden without seeing any doctors since finding a doctor with HS experience was not easy, and since there are no known cures or treatments that work I realized I will have this debilitating condition for the rest of my life and the doctors prescribed things purely on trial and error. I've seen two doctor's with knowledge of my disease this last year, but there has been no improvement, it's actually gotten worse the last few months. I have taken numerous anti-biotics that are only temporary relief if any, washes and creams and gels, prescribed and over the counter such as Phisoderm, Cetaphil, PanOxyl/Benzoyl Peroxide wash, Dial Anti-bacterial washes, have tried taking herbal supplement Tumeric, tried using Tea Tree Oil on the boils, cold and hot compresses, boil-ease, etc etc... the list really goes on and on. Not to mention all of my clothes getting blood stains, not being able to wear tank tops comfortably, or even short sleeves, forget shorts and skirts... bras with wires hurt horribly and I have a large chest and need the extra support, I have gone into times of slight remission, and when I say remission, it's maybe 80% remission, where it was tolerable, but it's only gotten worse now and it terrifies me seeing photos of others with this condition and how bad it really does get. My dermatologist suggested bariatric surgery and unfortunately my insurance won't cover it, and I'm in all those grey areas when it comes to disability and whatnot. I just wanted to give a little background, I'm sure I will add more.... onto my daily journal...