Upcoming HS surgery..ies.

Well the time has come for me to start a difficult journey undergoing many painful surgeries, hoping the outcome will help my hidradenitis. I have put off major surgery for my HS (hidradenitis suppurativa) for years, for many reasons. 1. I'm afraid of the pain. 2. There is only a 50% chance, the surgeries will work. 3. There is high risk of infection..which could lead to death.

It took me 4 months to finally get into the plastic surgeon, because of my insurance. During this time, I studied the surgeries I could have, and spoke with many people who have had the surgery. I knew what I wanted when I walked in the Dr's. office. I told the surgeon before he even looked at my skin, I knew what I wanted, then he asked to see all of my skin. Without any hesitation he said we will schedule the surgery as soon as possible. He didn't sugar coat anything, he asked me if I knew what I was in for, and I did. He told me it would take a long time to heal from each surgery and it would be extremely painful, and no amount of pain killers would keep me out of pain. I just looked at him and cried and said "I'm dead inside, and I need my life back no matter the cost." He understood from the pain in my eyes. I should know by the end of the week the date of the first surgery. He said probably around a month, I'm hoping for after Thanksgiving, but before Christmas.

I opted to have my axilla and torso area done first. (I will ultimately have my axilla, torso, breast, stomach, groin, legs, bottom, and ears done) The surgeon said depending on how surgery goes he might do my breast during the first surgery as well.
The surgery is called radical excision surgery, they will actually remove all of my skin in those areas. On my arms (the part I call the chicken flap..lol) they will just remove the diseased skin and pull to staple the healthy skin together. On my underarms down the torso they will remove the skin about 6 inches across and 12 inches down (what I'm guessing will be the measurements) This will just be open flesh that will be bandaged, and left to grow new skin. Skin graphs will probably be used after a period of time to help the skin grow. The surgery on my breast will have to be stapled because of fear of infection, which means, my breast will be completely deformed when they are done. This has hit me the hardest as a woman. I'm really emotionally torn up about it. My body is covered in scars which is bad enough, but to have your breast mutilated is on another level. My insurance will not cover surgery to correct them in the future, because it is an "elective" procedure.
In a couple years when I've healed from all the surgeries, I'm going to have a SAVE the BOOBIES fund raiser...lol. On a serious note, if anyone knows a plastic surgeon, that might do probono work, please let me know.

Now for the crazy part, guess how long I will be in the hospital? 1 day. That much skin removed, and only one day in the hospital, that kinda scares me, but at the same time, it will be nice to be home. They are going to set up a home nurse to come do dressing changes, and I will work with a pain management specialist, they said I will probably be on Oxycontin all the time, plus meds that will make me sleep the whole time, but I would get "really good drugs" right before each dressing change. Those will not be fun.

I've known for a while I was going to go ahead and start the surgeries, however, now that the time has come to schedule and get them underway, my mind is going crazy. I'm so scared. The risk of infection is high, the risk of permanent nerve damage is high. I'm so scared of the pain that is to come. However, what bothers me the most...I won't be able to hold my niece or hug my nephews for months and months. It literally is tearing me apart inside.

I plan on taking many photos along my journey from beginning till end. I will post them when I can, but be aware now they will be very very gruesome and not for the squeamish.

I've been going through a battle with my HS over the past month with a "hole" in my leg, and I haven't been able to do anything. Pain or no pain, I've only got a few weeks before I begin my journey and it could be a year or more before I'm able to just get up and go again, so I am going to make the best of these next few weeks, and try to get out some, and I'm going to hold my niece and nephews as much as possible.

When all is said and done, I'm hoping for a positive outcome, and to have my life back or at least some of it. I'm trying to stay positive, but I'm not going to lie, I'm terrified.

(I have been very blessed in meeting and talking with many people on facebook with HS, and a couple people on twitter, who I've become very close with that are currently undergoing these same type surgeries. They keep it real with me, but the keep me thinking positive and telling me to think of the future instead of the now. I really want to thank them for being so great to me, and for their friendship, love, and support.)

Halloween

While all my family and friends are getting geared up to celebrate Halloween, today is one of those days, that I lay in bed and cry. Halloween isn't considered a "big" holiday, but when you have nothing but time on your hands to think about how much your life has changed, holidays period are a big deal. I wish I had the energy or strength, or even desire to go and celebrate, rather it be dressing up and going to a party or taking my friends kids trick or treating. These are things I used to do. With all the pain, and medication, simple things are hard to do, and to even imagine, a full night out...brings to much anxiety. What makes me even more sad, is that I have alienated all my friends to the point, they don't even invite me to do things anymore, because they know I won't/can't. Still the invites were nice. I'm just bummed and in a mood. I hope everyone has a great Halloween!

I need my life back.

I've officially been living back home with my folks for a little over a year now, something which I never thought would happen at my age. I'm thankful that I have a place to live, a roof over my head, but its definitely not what I had in mind at this point in my life. I'm hoping to move sooner than later, still waiting on disability to be approved, there is so much red tape and hurdles to jump, I'm just ready to have it happen.

I have tried so hard not to have major surgeries for my HS, but the time has come that I can no longer put them off. I'm cutting daily (I&D's), and I feel like I've had flare up overlapping flare up for almost a year now. Things are not getting any better, so its time to do something. I go on November 12, 2009, to start the process of scheduling surgeries. There are so many options, I'm just not sure what to do. I could have it all done at once, which would keep my in the hospital for a while, and quite a recovery period, or do them in stages. I truly haven't made up my mind. Hopefully the surgeon will give me guidance, however the decision will ultimately be in my hands. I'm pretty scared to be honest. Having HS, the risk of infection is so high. As with anyone having major surgery the fear in the back of my mind is "will I make it back home." The sad part about HS surgeries, statistically there is only a 50% chance of remission with surgery. Its a huge gamble. Sometimes you just have to roll the dice.

I'm at the point in my life, where something has to give. I laugh when I say "my life" because honestly, most days I'm not really living. I'm just here. I don't work anymore, I rarely see my friends. I stay shut in my room, because I don't want to be a burden on my folks. I feel if I stay out of their way, I'm doing them a favor. (They don't feel this way, this is how I feel. They are often upset that I lock myself away.) My only connection to life most days is social networking like facebook and twitter. Wooohooo! I don't answer my phone very much anymore...I really have nothing to say to anyone. The only thing I have to talk about is doctors and hospitals, and I'm sure ALL my friends are sick to death of hearing about that. I'm sick of being me. I need my life back.

I know this sounds so negative, however, its reality. I can't speak of anything else. I do try and stay positive as far as my future, and I have high hopes things will soon be better. I also recognize there are many things that people face much bigger than what I am going through. Things just get cloudy sometimes. I enjoy my pity parties every once in awhile, but you're not invited. :)

HS on the Today Show

They did a segment on the Today Show about a woman with Hidradenitis. Even though it was briefly discussed...its a start.

To hear this woman talk is like hearing part of my own story...it's her story, but for all that suffer with HS it's our story. I'm hoping with it being on National tv it will raise awareness...be a beginning, for research, treatment and a cure.


This is not a part of my life...it is my life...my constant, my everyday.

You can watch the segment here:


http://today.msnbc.msn.com/id/26184891/vp/32673605#32673605

Letter I wrote for the HS Angels newsletter...My letter to HS....

(This was in last years news letter.)

Dear HS,

There really are not words to describe the amount of hate I feel for you. You have challenged my life in so many ways, and have won many battles. The war is not over, but you have succeeded in killing what's most important to me. I continue to fight a war that is not fair. I continue to fight a war no one understands. I continue to fight a war with no cause. I continue to fight a war with no solution. Many days I believe death, is winning. Fighting you is hard. Still I fight. I don't wish you upon my worst enemy. You have imprisoned me in a body I will die trying to get out of. Every time I look in the mirror I am reminded of how much of my life you have taken from me. Every scar a different story, a day I missed out on, a friendship challenged, the relationship I didn't have the courage for, another dollar unearned. The list goes on. You have become my life or lack there of.

You are the devil, and you have danced all over my body, but you will never get my soul. You have challenged my faith, but THAT you will never win. YOU may have a hold of my body, but GOD has placed the most amazing family and friends in my life. They may not be able to fight you , but they have been my armour, and my strength.

In the end, you may win against me, but I won't give up easily. I will do whatever I need to, to make sure one day you WILL be defeated. My white flag may be raised, but you too shall raise your flag and surrender. Your day is coming, and I will dance in victory, just as hard as you danced over me.