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Well, it's one of THOSE weeks.

Posted , 4 users are following.

katelyn09930
katelyn09930

I am so sick and tired of dealing with HS. 

It's been 13+ years, and it still rules my life: what I wear, what plans I make. Everything. Not to mention the whole "feeling like I want to jump out of my own skin" 24/7. Somedays I just can't take it and I end up here venting.

This week I have such a bad flare up, about the size of a golf ball on my chest. It's uncomfortable to do anything, including breathing & sleeping. The thing that really makes me so mad is that I work everyday and I love my jobs. I don't want to take a day off because I physically can't move. I want to work. This week I pushed through all the pain and didn't take any time off, but it's just screwed up that we have to deal with this. Even worse, I can't tell my boss' about this. The last thing I need is them wondering if I'm "fit" to do my job. Plus it's embarassing. 

Thanks for reading if you did, I appreciate it. Sometimes the only thing that offers me relief is just relating with someone who goes through the same thing I do. And since I haven't met anyone personally with HS, Patient.info forumns are my only place to go. 

2 likes, 9 replies

9 Replies

  • aussie76
    aussie76 katelyn09930

    Posted

    Sorry to hear, it's the worst isn't it. Good you stayed strong and went about lkife and work. It can get really wearing.

    The diet and principles she explains is pretty much a road to success and you will feel so much better getting control over it. Even if the symptoms hang around a little bit, you will feel so much better realising it's in your control.

    It doesn't have to cost money. Be aware of the inflammatory/intolerant foods...

    Maybe read up also on fasting diets for healing. Otherwise just keep a food diary... The symptoms seem to appear after about 12 hrs for me, maybe longer for others. Try to exclude nightshades, dairy, nuts... Of course your food diary will record each time you do have them.

    You should be able to work out what affects you the most... You'll have to be sensitive to increased pain and discharge. For me it's clear as day with potato... I'm still trying to identity what else... Watching mynnuts and dairy... I think a certain type of cheese... Maybe houlimi... I stop eating that and watch the symptoms subside slowly... Then will eat it again

  • MzRia78
    MzRia78 katelyn09930

    Posted

    I'm right there with you Katelyn. I'm having the worst flare up ever. It started two weeks ago and keeps on going strong. The worst part, it's in my groin and buttocks. I can barely sit down at work (desk job). I'm losing my mind between dealing with the constant pain, inflammation and worrying about if I've leaked through my pants ( thin scrub pants, gauze doesn't cut it anymore so as a last resort I've been wearing a overnight maxi pad every single day just to prevent accidents, I know TMI). I'm tired of dealing with all the horrors that come with HS.

    I was diagnosed by my dermatologist in 2012. I've been prescribed what seems like every antibiotic possible. They only work for a short time and I'm back at square one. I recently had surgery to remove the lumps from my groin in October (10 were removed) and was down from work for 2 months. After I healed somewhat by January I was hopeful that undergoing surgery was the key to all my problems. But wouldn't you know, just my luck in March new lumps began to sprout in the surrounding areas opposite of my surgery scars, with some new ones growing on top!!! 😳 My problem area as of lately is in between my buttocks. From using antibiotic ointments, hydrocortisone cream, hemmoroid cream, showering with Hibiclens and

    soaking nightly in Epsom salts or bleach, taking turmeric, selenium, and zinc supplements, avoiding trigger foods (dairy, night shades, nuts, yeast, soda, etc.).........I can't find any relief!!☹️

    Thank goodness I have a very supportive boyfriend who tries to help me in anyway possible. He is the only one that knows my struggles with HS. I come home every night in tears and frustrated because I know there is no cure for this horrendous disease. I recently scheduled an appointment with my dermatologist to possibly discuss starting Humira, I'm at my wits end. 😢Thank you for letting me vent as this is the place I know where other people battling HS can relate.

    • katelyn09930
      katelyn09930 MzRia78

      Posted

      It's funny, reading through your comment I resonate with pretty much everything you've said. It's hard to feel comfortable worrying about if you're ruining your clothes, or reminding yourself to not look so miserable when you feel like absolute crap because you don't want anyone to ask you what's wrong. It's literally a daily struggle for me and so many of you.

      I struggled with the "no cure" depression. It's truly like aweful for you if you sit there and sulk in the fact that there's no known cure. For a long time I would just cry and ask why me and what did I do to deserve this. But I really believe that there is a reason everything happens. There's a reason we deal with this, whether it's to help others who also go through it, or to simply humble yourself that it could always be worse. All I know Is we are seriously strong individuals with a high pain tolerance after dealing with HS.

      This last week it took it all out of me. I'm exhausted. I finally slept in my own bed after a week on the couch ( the only place I could get comfortable ).

  • tammyjo311
    tammyjo311 katelyn09930

    Posted

    answer to the food intake??..your last comment was deleted
    • katelyn09930
      katelyn09930 tammyjo311

      Posted

      Hm that's weird.

      Anyways, I haven't started the diet completely but I have been making better choices for the past few months. I know I need to completely transition, but in between my financial situation and work it's hard to.

  • tammyjo311
    tammyjo311 katelyn09930

    Posted

    yea, I thought it was strange too to have been deleted, anyhoo...my plea would be do it girl!!!!!!!!!!!!!!..I seriously never thought anything would help my HS..but I didnt go to the store either..I just omitted all dairy..Potatoes and Tomatoes to start..Instantly a change..now i have no break-outs..now if i eat bad i will for sure, but by the grace of God its helping..and DONT SMOKE
    • katelyn09930
      katelyn09930 tammyjo311

      Posted

      sweet! I'm glad it's helped you. & that's a great idea, just eliminate what you have now and shop differently later.

      The three hardest parts for me:

      1. fries and ketchup. I mean I love French fries, and I could probably easily live without them, but they're frickin everywhere and often the only side. Ketchup, however, will be hard to rid of.

      2. I've been smoking for 13 years. I've quit for a month or so in the past, but I've definitely been feeling like it's time to quit again. It's not healthy in so many other aspects as well as being a nightshade. But it's definitely one of the hardest things for me to do in my life right now.

    • tammyjo311
      tammyjo311 katelyn09930

      Posted

      your preaching to the Choir giel...lol..Im 50 and smoked since i was 14, but quit in October for my Birthday Present to myself...and im 8months straight now!..believe me, if I can do it..anyone can do it, i was a pack and 1/2 a day and now nads...and FOOD..ugh...french fries and ketchup are my weakness also, but I wont dare anymore..Im Italian and I cant have sauce..SHOOT ME..lol...its hard at first, but i feel more energy now, eat tons and tons of fruit and veges now (I have alwasys been a good eater and super healty and in shape)..I only say that cux HS swears weight is a factor..and thats soooo UNTRUE..I wear a size 6 and was a 4 and had horrible break-outs until i changed my foods and lifestyle!!..Ill be rooting for you Katelyn!!!!!!!!!!!!!!!!!!!!
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