 |
| Me, 2006, at a friend's wedding rehearsal |
I continued through high school and college with occasional HS flare ups. I remember getting them in my armpits and upper thigh/groin area, but it wasn't a constant presence. Looking back through some of my old pictures, I'm wearing tank tops and sleeveless shirts, so I know that my flares must not have been as bad as they are now. [There's no way I would wear a tank top out in public now]
Of course I'd seen doctors throughout that decade [13-23 years old], but I don't think I ever brought up my 'knots' with the exception of my general physician that I saw while I was in college. Pretty sure I may have mentioned it once and was told that the bumps were from shaving and that I need to do a better job of being careful. [Totally not the case, by the way. HS flares can be aggravated by shaving, but they're not caused by shaving]
The next time that I remember seeing a doctor for an HS flare, I was 23 and just recently had my son. I had a knot that on my leg that was giving me a particularly hard time, but by the time my appointment arrived, it had opened up and drained on its own. The doctor looked at the spot and told me that it was a staph infection because I wasn't keeping that area clean enough after shaving. How embarrassing! Of course, he wasn't correct....and I remember feeling like he couldn't have been right...I told him that I had been getting bumps like this when I was 13, long before I started even thinking about shaving my bikini line! He seemed a little puzzled by this, but stuck with his diagnosis. It was around this time that I started to seriously research what in the world was going on with my skin. Crazy, right? It only took 10 years of dealing with HS mess for me to decide that something wasn't normal...I wish I'd been bothered and brave enough to start looking for answers sooner!
I started researching and came across more skin conditions than I care to recall...everyone knows the rabbit hole of using the internet to self-diagnose medical issues! But reading about this super hard to pronounce condition, hidradenitis suppurativa, I felt strongly that it described just about precisely what I was dealing with! However, having a hunch that my skin condition had a name wasn't the same as being officially diagnosed by a physician....
About a year later, I found myself going to the emergency room for some pretty intense back pain. Turns out, I'd strained my back and had muscles spasms which stemmed from picking up my son. Without realizing it, I was bending over kind of sideways to pick him up...I was doing this because I had several angry HS spots I was trying to manage. I told the ER physician the reason why I was picking my child up 'funny' and when I described my painful knots, he immediately asked, "Oh, is it a 'suppurativa' type thing? It's not very common, but not unheard of."
I was elated!
Not only was I getting treatment for my back [which was absolutely necessary at the time] but I finally had confirmation about my skin condition! Unfortunately, being diagnosed is not the same as being treated....even though I now officially knew what was wrong, it would still be years before I got treatment for my condition.
The next decade of my life was quite tumultuous. A few romantic relationships, a few moves, lots of familial stress and strife, a couple of failed engagements, and mountains of stress...
Every time I started seeing a new family physician, I always made sure to let them know that I have HS...and, frustratingly, none of them had ever heard of the condition! Thankfully, my current physician seemed to actually take some degree of interest in my overall health and decided to offer me antibiotics for my HS [and of course she recommended that I seek the care of a dermatologist]. At first, the antibiotics did wonders for my active flares! I was amazed that they actually provided relief! However, this relief would be short-lived. Not too long after the antibiotics were out of my system, the flares came back...with a vengeance!
After a few rounds of antibiotics, my physician was quite insistent that I see a dermatologist...and I finally agreed to go. I don't know why I didn't go sooner! You can imagine the disbelief on the dermatologist's face when I told her that I'd been dealing with HS for over 15 years and never once thought to visit a skin doctor! One quick look at my armpit flares, and the dermatologist agreed that it was HS and that I needed specific treatments in addition to antibiotics.
My first visit to the dermatologist was back in 2016. I sought her medical care for about 6 months and then things went wonky between her billing office and my medical insurance company. I eventually stopped seeing her, because of the billing issue and what I perceived as a lack of treatment results. However, if I'm being completely fair and honest, the lack of results is greatly my own fault [but the billing mishaps were her office's mistakes!]. On my second or third visit, the dermatologist told me that I needed to start a modified diet. I needed to cut out carbs, sugar, dairy....she was talking about a paleo/AIP diet. I was stubborn and didn't want to change my diet that drastically, so I tried to continue with the medication portion of treatment without the dietary/lifestyle changes. In retrospect, I should have known that I wouldn't have the expected results if I wasn't being totally compliant...
That just about brings us up to the present! After a little over 2 years of self-treating [mostly unsuccessfully] I've decided to finally take the advice of that dermatologist and change my diet. I'm hoping that fully adopting the AIP diet will allow me to have better control of my HS and to determine what my dietary triggers are. AIP day is on Monday! I'm going to buy and start prepping for it today, wish me luck!
Do you or anyone you know have a chronic health condition like HS? If so, how was a diagnosis reached? I hope it didn't take you as long as it did for me!
No comments:
Post a Comment