Confined Inside Hated Skin

"We are all sentenced to solitary confinement inside our own skins, for life." ~Tennessee Williams

It is late tonight and a lot of frustration over a specific problem I have been harboring for a long time has finally reached it's boiling point and the waterworks are flowing.  I am frustrated with my body.  I just don't have the genes to heal well and correctly and strongly.  The doctors all say it and they all don't know how to deal with it.  You'd think my 3.5 year old grafts would be like my new second skin by now, or at least that's how they should be on any other normal burn survivor.  But not me.  I scratch a little bit because I've got an itch and even though the graft is 3.5 years old, it tears and now I've got another open sore on my body that won't heal easily because I've got those bad genes and before you know it I've got breakdown all over my body.  And this breakdown is not easy to heal or take care of.  I have actually been battling a major breakdown in my grafts since September of LAST YEAR!  And what's even more frustrating is areas will start to heal and I'll start to feel better because I don't have all this breakdown on my body that hurts and bleeds and then for some reason, suddenly I'll go to have my shower and there are new tears and rips of the graft just when we thought we were getting it under control!!  And often times, we'll get an area healed up and think it's OK and then once again, I'll take my clothes off to go take a shower and there's breakdown in the exact area that had been healed for maybe a couple weeks!

On the referral of my reconstruction doctor, I went to see a dermatologist in Portland and she also didn't understand why 3.5 year old grafts would be so fragile and breaking down like this.  So she had a thought that maybe I might be allergic to one or a couple of the medicines we used in our wound care like bacitracin, silvedene, mupirocin, and a couple other ointments and creams we used.  So I wore one of those allergy patches and went in to see her the next day.  We were all hoping and hoping that something would come back positive for an allergic reaction so we'd have an answer but everything came back negative.  The dermatologist didn't have an answer for me so she told me to use these duoderm patches that you can either use the patch as a whole and put it on an area of breakdown or for breakdown that is spread out you can cut the patches up and just place them right on the tear.  And then I have to keep them on for three or so days.  What she told me was that open sores and cuts and lesions etc. need moisture to heal so putting some vasoline on the tear and then putting a piece of duoderm over it would help make a seal on the tear and allow it to heal in the moisture under the duoderm.

Well, that works pretty well but there's still a couple problems: 1) sometimes the ends of the duoderm wouldn't stick very well to my grafted skin and peel up and get dry and then become useless so I'd have to take it off and replace it 2) There are a few areas that are heavily broken down and I mean HEAVILY that are in places that make it impossible to get a piece of duoderm to stick and stay i.e. my axilla areas (armpits).   So they constantly keep scrunching up in my armpit forcing me to replace another one and the breakdowns in these particular areas just keep getting worse and worse and bigger and bigger and hurt more and more to where it's now getting impossible to get healed not to mention bleeding problems 3) this last problem just tops it all off and that's insurance issues.  Medicare and Medicaid don't like to pay for the duoderm patches because they are a) expensive and b) they don't find them necessary because they're not common.  So since insurance won't pay for them we have to pay for them out of pocket and let me tell you, because I am so broken down and constantly breaking down we go through a lot of them and fairly quickly.  I wish I could give you a dollar amount so you'd know just how expensive they are and how bad my breakdown is by how much we spend on these duoderm patches but I don't think my mom would like it if I told you so I'll just say it's in the hundreds of dollars...and that's just in the past month.  That's insane!  We can't afford this!

I am just such an odd case with my terrible healing and how quickly and terribly I contract.  My grafts are so fragile and it's so hard to deal with them.  The day after my 28th surgery (which was followed by my 29th a week later) while I was in the hospital, my skin, which we had finally started to get mostly cleared up, was suddenly completely broken down everywhere.  I couldn't believe it.  I knew right then that what was causing me to breakdown.  What I was allergic to was whatever they chose to use to clean and sterilize me and the area of surgery.  I was just so upset because we had been battling this breakdown for almost a year at that time and were so close to getting it all cleared up and then with how bad my skin broke down after the surgery, we were basically back to square one.  But at least we were pretty sure now what I was allergic to and what was causing the breakdown.  On my follow up appointment, I talked to my doctor about it and he looked up what it was that they used in that surgery to clean and sterilize me - betadine, which is Providion Idione.  So he immediately put it on my list of allergies, which include methadone, mafenide, PVC markers and now betadine.  So, you can imagine, on my next surgery, betadine was kept far, far away from my skin.  But since my 28th and 29th surgery where the betadine was used, I have been battling the breakdown daily and never seem to get very far.

I'm continuing this post from last night because I just got tired and was crying too hard to type. I just don't understand why I was given this body that evidently has a hard time healing properly and have it injured in one of the most terrible injuries someone can endure.  I mean, that's just adding hurt to injury.  I just want to one day be able to look at my body in the mirror before I get in the shower and not see any breakdown, no tears, no open sores.  And I wish upon wish upon wish that I also didn't have such a problem with scars and contractures.  I battle them and battle them everyday, every hour and I just can't seem to get ahead of them, let alone at least just keep up with them.  I don't know how to fight them anymore.  I don't know how to fight the breakdown anymore.  My last three surgeries are healed well enough that the wound care isn't much, but the breakdown requires extensive wound care day and night that I shouldn't be having to deal with!  It's hard enough to look in the mirror and see an unrecognizable body but add on to that an unrecognizable body that's always broken down?  It's beyond the feeling of frustration.  It's like frustration spiced with 2 cups of anger.  I'm so angry and I have nowhere or no one to direct my anger.  A very dear friend of mine asked what the frustrations felt like, if it was just one thing or a bunch of things.  My reply to him was, there is usually a "leader," if you will, a "headliner" of the concert that begins my frustration and then I'm opened up emotionally so other kinds of frustrations are able to get in and just add on to the "leader."  I'm finding it harder and harder to get up every morning and find the strength to fight the frustrations and anger and depression I face daily.  It's getting harder to see how it's worth it.  I just can't win against my body.