Photo Update

This is the last photo I took, it was before they burned it. It is looking so good. I have to look back at my photos over the past 2 months and remind myself just how strong I really am. I never thought I would be facing all of this, but God doesn't give us anything we can't handle.

Slowly but Surely

My last surgeon appt. was overwhelming to say the least. They had to use silver nitrate sticks to burn down the open flesh to promote healing, my nerves are so sensitive right now while they are growing back, so it didn't feel good. It was pretty gross, it smoked up and you could smell it. YUCK! It burned, but luckily I'm feeling much better now. The charred skin came off with my bandage change. I'm hoping now it won't be long before its completely closed. They renewed my morphine and delaudid, and upped my nerve blocker (neurotin) to 600mg 3 times a day which I need because my nerves are screaming constantly but the meds just knock me out. She said I will hopefully adjust to them, so I guess in the meantime, I'll just be a zombie. We also planned my next surgery which will be to repair the skin under my left arm that healed wrong with my last surgery and also to remove my left ear lobe and reconstruct a new one by doing a skin graft. I had surgery on my ear in August but when she got in the disease was through and through, since I didn't sign consent for her to remove it and do a skin graft she just sewed it back up, and it looks all crazy, it healed down my neck and is preventing range of motion in my neck. The next surgery will be the end of June beginning of July. I should have a date in a few weeks. After this corrective surgery I will be taking a long break, I think. I need a long break, but it depends on how this disease continues to invade my body.

I did a radio interview about HS for a Australian radio show. It airs on June 28th and I'll have a link to it online afterwards. I think the interview went well, I hope others are pleased with how I depicted this disease. I will be recording again tonight for the show, she asked me to read a letter I wrote years ago, so that will be nice too.

Nothing new to update. I'm healing, slowly but surely!

NO MORE CUTTING!

Had a surgeons appt yesterday and they did the last of the cutting, wooohooo! NO MORE CUTTING. Only now I wish I would start healing faster. I'm healing, just slowly. They now have me using the Dankins solution to soak the packing in, which burns like crazy, and just found out that its actually a bleach solution...DUR...no wonder it burns. I use the Dankins for two days then use the collagenase cream for a day then alternate back to the Dankins. I tried to think which I liked better, which one hurt less, and, well they both hurt like hell, so they are tied. I'm just happy to post the last picture where you will see new area cut. Hopefully from now on, there will be reports of healing and pictures of a smaller area! Please just keep praying for healing, faster healing even, or better yet a miracle!

As big as its going to get, yay!

This photo is just a different angle so you can see how deep the wound is a little better and how much healing needs to happen!

April Update

I can't believe its been a month since my surgery, time went so fast, yet so slow, hard to explain. It has been a very trying month, a roller-coaster that I'd love to get off of. I remember seeing my incisions for the first time and thinking how great they looked, the sutures were in such clean lines, and I was so happy that at least the scarring would look "okay". Slowly but surely things unraveled and now I sit with holes in my stomach and things I used to call "boobs". I'm happy with the fact I can wear clothing and I have a "shape" that appears to be a chest, but looking at them gets more depressing every time. Unfortunately, that is the least of my worries right now, and something I'll obsess over when this is all taken care of, doesn't look like it will be anytime soon.
This past appointment with the surgeons they were supposed to remove the rest of the dying tissue, but they said it was "too hard" and they wanted to soften it some to make it easier to cut out. They gave me this cream called Santyl (Collagenase), which they said would soften the dead skin/tissue...and I have to say it works very, very well, maybe too well, too fast. My skin seems like it is melting, dressing changes are gross as the skin and tissue are coming off and out with the packing. Its hurting pretty bad. I was happy I was able to stop using the Dankins solution which is what I was soaking the packing in before and it burned horribly, but this stuff is just as bad, actually worse. The pain has intensified and every moment is tougher. Every dressing change mom and I say, "One down, only a million more to go" its said jokingly with a underlying sadness that this is life for God only knows how long. I said this morning to my mom as she came in for the dressing change "I hate this routine, it sucks, and I hate this life" All she could do is reply with a "I know". Not much else that can be said. This all sucks, and we literally have no clue how many months of this are ahead. I'm drained and tired from all the pain meds that I have to take, I try and cut back, but I always end up having to take the full doses. I'm emotionally at a breaking point. I just want to be able to do simple things without help, I need help with every single thing it seems, and I just want some independence back.
I have to seriously thank my mom, she is the one who takes care of me, who does all the simple things I want to do, but can't. I want to thank her for everything she does and I want to apologize that I brought this on her. I know its not my fault, I know I didn't ask for this to happen, but it did, and I'm sorry that its landed in her lap. She is amazing and I'm so lucky to have her. This has not been easy on her as she has had to become a nurse to me (A very good nurse, she even got props from my surgeons on how well she is doing). She never thought she'd be taking cream and using her fingers to rub down my open flesh. I see it in her face as she does it, how much it makes her sick, but more so how much it hurts her to see me hurt. I guess that is a mothers love, and there is nothing like it.

To end with I have to say, I know that I'm complaining all the time, and I'm miserable sounding, but that is my life right now, however, I am truly aware at how much worse things could be. Not for me, but just in life generally. I see the kids faces at the hospital when they roll or walk by who have cancer, and I see the face of the parents with that child. What could be worse?! I know how much worse life could be. Its easy for people to say that to you when you're facing something like this..."You know it could be worse." Yes, well, I also know it could be better. If that is selfish of me, then so be it. It could be better.






This is the most recent picture of the one wound. Monday the will cut the section at the bottom right, about 3 more inches round.





*If you read my blog then you know that I can't spell, my grammar sucks, I use run on sentences and there is nothing correct about my writing. I simply put my thoughts down. I'd also like to blame my pain meds. Thank you.

New Pics

Not for the squeamish. Update

As many of you know I've been suffering with ulcers from my breast surgery on both sides, things just kept getting worse, 2 ER visits, its been a mess. I finally went in for my scheduled appt. and got the dreaded news of dead/dying tissue. They were going to schedule surgery but decided to do it right then. They numbed me up and cut away the tissue they kept my face turned/covered and mom said it would be awhile before she'd let me look at it. It hurts so bad, the bigger side is the right side but they did both sides. Its going to take a while to heal. It is very painful, obviously, but they upped my pain meds to 100mg of morphine every 8 hours and 12mg delaudid every 3 hours and 2mg xanax as needed. Good meds, but never enough. I'm freaking out pretty bad, one bad infection and it could be it for me. I'm very scared with my bad immune system from the HS. Its can go bad very quickly. SO please pray for me. I'm tired and not sleeping like I should just have so much on my mind, but I'm so exhausted this morning I might just drop out of it. I convinced mom to do some pictures this morning during dressing change to share, I still will not look at this on my body but a pic helps seperate it. She only took a couple. Again please just pray or send me good vibes love while I fight and go through this, its incredibly painful and scary. Lots of love.

Ulcers.

Ulcers pics taken a couple days ago, they are bigger already, new photos soon.