The Human body actually baffles me. My body works against me but it is also capable of these amazing things – like magical moments of skin growth.
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My symptoms started when I was in in my early 20’s, and it took another 15 years before a family doctor diagnosed me with the condition. I am still able to work watching children, but have to do so from home. The HS in my groin area prevents me from doing anything else. The pain I’d describe as very bad, and I have to take Tylenol 1-3 times a day because of it. I’m not on any medication currently for my HS because nothing has helped, but I’m hoping to find out about Humira and if it’s available in Alberta, Canada.
I am a Nurse and have been for 12 years, but HS disease has affected the field that I am employed in. Psychiatric nursing was my passion and I excelled with that population, as well as medically fragile patients. I cannot physically endure caring for them full time though due to pain from flares or areas where I’ve had surgical procedures in the past. Now I stick with office nursing jobs.
I was 10 when my symptoms began, and it took another 18 years before I got my HS diagnosis from my Primary Care Physician. I am currently in the second stage of HS and I work as a Forman at a landscape company, and yes, HS has affected my job. I will usually call in when it gets bad enough although I do try to stick it out when I can.
To manage my HS I see a wound care physician, an immunologist, and an internal medicine doctor. I struggle to manage my HS because I have multiple drug allergy syndrome, and I can’t take a lot of the medications that are used to treat both HS and infections. The immunologist and I are currently working together to find out which antibiotics I can take. So far, we’ve established that I can take daptomycin infusions and they work to treat my MRSA infections. I also take Spironolactone, which helps slightly.
There have been a few challenges I’ve encountered dealing with HS. Things like losing friends and family… they either didn’t want to believe that I was in too much pain to hang out, or threw my “laziness” in my face. They refuse to understand the fatigue that goes along with a bad flare. I also have to wash my hair by bringing my head down to my hands. I can’t lift my arms to do it the “normal” way, because the scar tissue is so tight and it feels like it could tear at any given moment.
I was 16 when my symptoms started, and it took another 9 years to get a diagnosis from a Nurse/Midwife. I only suffered a couple small stage 1 flares on my inner thighs ages 16 through 24. When I became pregnant at 25 the HS began to slightly worsen. That was when I was diagnosed by my midwife.