pilonidal update, almost healed!

It’s been a while since I posted a health update, so I think it’s time to check in. When I was diagnosed with several “rare” problems, I googled for information and experiences to try to understand what was happening to me. I like to think that I’m providing the kind of info I would have liked to find back then. (Rare is in quotes because I feel they are not so much rare as they are under diagnosed.)

My pilonidal cystectomy wound is healing well. After being taken off of the wound vac, we began packing it with Aquacel Ag. The silver in it is supposed to minimize bacteria. It’s worked really well for me. My wound started at a depth of around 5.5cm. I’m now at less that 1cm. It took around three months to heal up that far, since the wound vac was removed at the beginning of September, but it’s been steady progress. No infections. The dressing gets changed every other day by my husband, who has been a trouper through this.

Since my dressing isn’t waterproof, I have to coordinate showers with my dressing change. While the wound was deep and we didn’t know how well it was going to heal, I kept the dressing on while I was in the shower. I didn’t want to take any chances. After about a month, I felt comfortable taking the dressing off, showering with the wound open, and then having it packed after. The nurse practitioner doing my check ups didn’t notice any negative affects, so that’s become my normal routine. It’s frustrating not being allowed to take baths, but I don’t want to risk my progress. Soon. It has to be soon, right? My bath bombs are waiting.

Pain-wise, it was very mild when we started packing with the Aquacel. Much easier than a wound vac change. I didn’t feel a lot when the wound was deep. Now that it’s quite shallow, it’s starting to become painful again. It’s also bleeding more. My nurse said this is normal as the nerves and surface area begins to heal. My general practitioner doctor suggested rubbing oil into the scar tissue to keep it supple, but the only time I have access to the area is when I’m showering and having it covered again. He suggested olive oil as being bacteria-free and healthy for the skin. Not quite sold on that yet.

When I was able to return to work, I couldn’t have a home nurse anymore. The insurance only pays for one if you’re homebound. The nurse I had on most days was great and she showed my husband how to do the dressing change. Her supervisor also set me up with the wound supplies company (McKesson) providing my Aquacel Ag and Mepilex dressings so that I could order them on my own. They’re still covered by my insurance, but I can put in the reorder when I’m close to running out. I can only order the items and amounts already approved for me.

In more Tales of the Mundane, my left wrist is hurting quite a lot. It started around Thanksgiving when I was washing a lot of dishes and holding heavy items. Not much I can do for Ehlers Danlos Syndrome other than wear my brace, take my pain med, and try to do less. The increased typing isn’t helping, but I’m not ready to give in to learning a speech recognition program yet. I’ve tried recording myself with my phone, and it’s very awkward. I’m very awkward. Not sure how I can make me self-conscious, but I manage to do it! If you have any experience with speech recognition applications, let me know. I’m interested in something both inexpensive and accurate. Mobile and PC solutions. My hands and I thank you.

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