Hidradenitis Suppurativa

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Hidradenitis Suppurativa
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    My Doctor Appointment

    I went to my doctor appointment today I am diagnosed with a chronic disease called Hidradenitis Suppurativa (HS) I got told that my HS is starting to progress into the severe stage

    My doctor said she wants me to start doing injection treatments where I have to choose between Humira injection treatment and or Remicade treatment

    I don’t know which one of them are good and helpful

    Have any of you ever used either Humira injection treatment and or Remicade treatment

    I am diagnosed with 2 other chronic rare diseases as well

    My HS is one of the rare diseases I have

    #RareDisease

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    Who’s in Chill Mode?

    Hey Mighties! Just poppin in to see how my favorite people are doing. Are you chillin or what? I’m taking some chill out time before our Friday Self-Esteem Workshop. They have been going really well. If you haven’t attended one and could use some confidence boosting tips, we’d love to have you. On another note, my skin is being absolutely annoying and makeup has never really been my thing. Might be time to re-think that.
    Anyhoot, here’s smiling at you Mighty. Wishing you a well weekend!
    #MightyTogether #CheckInWithMe #MentalHealth #PTSD #Anxiety #Depression #ChronicIllness #ChronicPain #HidradenitisSuppurativa #PeripheralNeuropathy #HypothyroidismUnderactiveThyroidDisease #AdrenalInsufficiency #Eczema

    15 comments
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    Frustrated parent.

    Dear IBD Community.

    I am normally a really positive person. So please know that this is not a regular rant.

    If anyone can…. Can anyone please tell me how to get my daughter the pain medication she needs for Crohn’s. Or her endometriosis. She has been to hell and back several times in the last 12 years. She is now 24. When she was 13 she was diagnosed with ulcerative colitis. When she was 16, they removed her colon and throughout her 16th year, had surgeries that gave her a J-pouch. This meant that for a time she had an ostamy bag. As she neared her 18th birthday she started having horrible period cramps and was eventually diagnosed with stage 4 endometriosis. The day after she turned 18 she had her first endometrial ablation. She graduated from HS and left for college. Since she has lived in the the state where college is— she has had one more ablation and most recently been diagnosed with Crohn’s. The whole time she has lived away from home and been on her own, it has been like pulling teeth to get her any kind of decent pain care or medication. She has lost jobs, quit college, lost relationships while trying to find a doctor that would actually hear her. Through it all, she has been and continues to be very independent. She tries very hard to have a positive outlook and has made a career helping children who are severely autistic. She has refused to have a hysterectomy because she wants her own children.

    My rant is this. I do not understand why the people who need pain medication— who have been justly diagnosed with chronic diseases that will NEVER go away—have such a hard time getting the care that they need. Doctors rarely ever listen and believe that she knows her own body…is not trying to be a druggy…or think that she knows what she is talking about. She is intelligent and has proof that she needs pain relief, yet doctors continue to tell her to try yoga, change her diet (like she hasn’t tried that a million times), get better sleep or have a better sleep routine, or tell her to take Tylenol. The closest medication she can get to anything decent is Tylenol with codeine and that doesn’t help at all. What she needs is something that helps her sleep. Something that relieves her body and gives it a break once in a while from the heavy load of being chronically on a pain level of 9.

    Does anyone in this group know how my daughter can advocate for herself and get the care she needs. She is to the point where she is about to go down to the corner and get illegal drugs. And do you really blame her??

    Do I need to write a congressman? Go to a Medical Convention? Drive to the state where she lives and scream and yell and throw a fit at her doctors office? (I used to do that when she was a teen but have tried to let her advocate for herself since becoming an adult). No one seems to hear her. One can only have so many hot baths, calming teas, heated weighted blankets, weed, ice packs, and liquid diets before they go crazy.

    Signed a very VERY frustrated mom.

    #IrritableBowelSyndromeIBS

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    Daily Struggles #ChronicPain #IntercranialHypertension #HidradenitisSuppurativa

    Lately I feel like the pain has been getting worse daily. 7/10 at least everyday, any less than that and I say I'm having a good day where the pain isn't debilitating. I work full time Monday- Friday as a Medical Receptionist I love it because I help a lot of patients and the science behind working in health care is super interesting so in my spare time I look up diagnoses and research health conditions so I know what patients are coming in for. I feel like my health issues help me to be more understanding to the patients that come in and it helps them get the care they need. In my spare time when it's not too painful, I love to read on my Kindle Paperwhite and play Pokemon or Animal Crossing New Horizons on my Nintendo Switch. I'm constantly in pain sometimes it's just worse. I try the best I can and I push myself to do the most I can do when I'm not in pain, my husband and I are a young married couple trying to save up for our own place in FL, we live with my mom and help her with a lot as she has Systemic Lupus. We moved back to my hometown in Florida to take care of my grandparents in 2019, but they both passed and we just stayed in FL where my family is.

    1 reaction 4 comments
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    I’m new here!

    Hi, my name is blujaybexx. I'm here because everyday is a painful battle but I fight it for myself and my loved ones.

    #MightyTogether #Anxiety #Depression #Migraine #PTSD #ADHD #IntracranialHypertension #HidradenitisSuppurativa #Asthma #excoriation(Skin-Picking)Disorder #Grief

    5 comments
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    Super Excited!

    Hey Hey Hey Today is the Day Mighties. So nice to share this space with such a supportive community. I’m very excited to be meeting with you in a couple of hours. For anyone who may be having a not so good day, I totally get it. Sending you comforting vibes! See y’all soon! #CheckInWithMe #MentalHealth #MightyTogether #Anxiety #Depression #PTSD #HIVAIDS #PeripheralNeuropathy #HidradenitisSuppurativa #AdrenalInsufficiency events.themighty.com/events/details/the-mighty-mental-health...

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    My Story is Important. Your Story is Important.

    Part 1 of 2 I have had depression and anxiety issues since I was a teenager, including a suicide attempt when I was 16. I was not understood. I was not taken seriously. I was told I was seeking attention. I was bullied, including being told that the world would be a better place if I weren’t in it.

    I had manic episodes in college, though at the time I didn’t know that’s what they were. I would engage in risky behavior. I put myself in sexual situations and struggled to find my way out. I had major depressive issues where I would stop eating. No one recognized my behavior as unusual for me. No one tried to help. I was ignored and made to feel that I wasn’t important enough to engage with. I was on the cusp of figuring out my future and I simply couldn’t see myself as a part of it.

    As an adult, I did what I was supposed to do. I got a job. I moved into an apartment. I married my boyfriend of three years. We moved into a house. I had kids.However, as I was having children, I seemed to get more and more out of control. With each kid I had, I progressively had a harder and harder time with depression. My first child had health issues, so when I was upset and crying it was seen and viewed as normal. I was told it was baby blues. When I was in the hospital after having my second, very healthy, child, a nurse was doing her job and informing me about issues such as PPD. My mother was in the room and I was told, “We are strong women, we don’t have those issues.” As soon as she left the room, I burst into tears and wondered what was wrong with me that I didn’t seem as excited as I should be since I now had a very healthy child I was going to be able to leave the hospital with. I was diagnosed with PPD, but without support from home, I didn’t do anything about it, except survive. When I was pregnant with my third child, my doctor recognized that I was having hormonal fluctuations that were not normal. During my pregnancy she told me that it would be a good idea if I did not have any further children. She was on maternity leave when I actually give birth to my third and was horrified to learn upon her return that the covering doctor did not follow up with my about PPD and learned I was imbalanced enough to have PPS. The doctor pushed me to get on some antidepressants and things looked better for awhile.

    During a standard yearly appointment with my OB/GYN, I was expressing manic thoughts of depression, overwhelming anxiety, the inability to control my thoughts, and my doctor sat there and listened. She then suggested she walk me across the parking lot to the ED to be checked into the hospital. She was concerned that I was going to harm myself or my children. This was a wake up call.

    I started getting some help. I went to my family doctor and she began to prescribe a series of anti depressants, which all worked for a time. We would increase dosages. We would try new medications, and combinations of medications. My family doctor reached a point where she was uncomfortable with my mental health care and set me an appointment with a psychiatrist. I was placed through a battery of physical and mental tests and came away with a bipolar diagnosis. I was finally placed on the proper set of medications. However, as mental health care works in our country, I struggled to find a new psychiatrist when mine stopped practicing and it took another crisis to get back into treatment.

    Fast forward several years…October 2019, I have been married for 19 years and my children are 17, 15, and 13. I am in a very dark place. I am having destructive thoughts. I know that my family is going to be better without me. They would be able to live life without me holding them back. All the kids are old enough to be self sufficient and they just don’t need me. The family could use my life insurance pay out far more than they could use me. I was no longer necessary in my family unit. I knew these thoughts were out of control and not rational. I also knew there was nothing I could do about that.

    In addition to all of my destructive thoughts, I was having physical medical problems. I was having menstrual cycles every 15-16 days. My hormones were once again out of control. In an effort to stretch outlay cycles, my new gyn places me on a low dose birth control for two weeks out of the month. The thought was if I could stretch out my cycles, my hormones would have time to plateau and I wouldn’t always be all over the place. My iron levels would also have time to return to normal. And the medication did all of that. In the three months I was on the low dose birth control, my cycles stretched out, my hormones settled and my iron levels returned to something close to normal. What I was unaware of until much later, is that the birth control interacted with my main mental

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