impact of hs on the life of sufferers
Introduction by Becky
First, let me say thanks for taking the time to read and sign the hidradenitis petition and for visiting here to read our stories.
Second, please ask your family and friends to sign the petition; more signatures we have, the better our chances of getting attention and research. You know, we forward jokes and all kinds of silly stuff to our email buddies and they get forwarded to thousands of people all over the world. Why not start an email forward with a link to the petition?
Third, there may be what some may call graphic descriptions, so be forewarned.
Fourth, if you want to read more personal HS stories, we have a book on CD. You can email me for more information.
Once I had the rough draft of the petition completed, I sent it to a few HS friends and asked for comments and suggestions about the petition. One distinct area was unanimously requested to be expanded on: how HS affects and/or impacts our lives. Or, as one person wrote, “[we need to] emphasize the enormous impact that this disease has on our lives, physically and psychologically.” It was the desire of the majority to let people know what most of us live through on a daily basis.
As my HS is mild, I again asked for help coming up with an accurate list
of how HS affects and/or impacts our lives. However, this time I posted the
request to several of the message boards to give more members the chance to
participate. The response was overwhelming; I received a large number of
emails. Most stories were longer than I could use in the petition, but their
personal words were so moving, that I felt they needed to be shared. When
possible, I used the writer’s exact words. However, some changes and editing
were necessary to conceal the identity of the writer, including having a few
incomplete sentences. Borders have been placed to separate the stories.
Comments and questions can be emailed to me.
Becky
The Impact of this Disease
In response to another email, a member writes:
You are right when you write you can not live with this disease and not be robbed of mind, body, and spirit. Trying to keep these things in tact is so difficult, depending on how severe your HS is, most of the time I'm ready to run my car over a cliff.
37 years of this damn disease, I missed out on many high school events and just having the fun of a "normal" teenager.
I am so SICK of living with this disease. I am sick of oozing, smelling, and being in constant pain. I dread going to any event because sitting is motion. Actually, walking and standing are challenges. Attending a grandchild's birthday party or going on vacation should be exciting, but for me it's the challenges of wondering if I'll be able to find a comfortable place to sit. I squirm around in my seat at work and at school, always trying to find the most comfortable seat to sit on where ever I go, and realizing there is NO comfortable seat. Getting in and out of my car has been tearful. Some mornings my left thigh, buttocks, and leg are so badly infested with tracks and oozing lumps.
I personally can tell you one thing ... it has slowed me down a LOT! I've had HS for a little over 3 years now. Before I got HS, I used to be on the go 16 hours a day. I worked 60+ hours a week, loved to hunt, fish, go for long walks, hike in the woods, work outside in my yard, go driving around in the country with my son, go on motorcycle rides ... basically if it had to do with the outdoors, I did it or at least tried it.
Ever since I had the outbreaks occur in my groin area (and they keep coming, one after another, even after surgery), I need more sleep. I can't sit for long periods of time. I can't be on my feet no more than 40 minutes before I get stabbing pain in and around my surgery scar and the bumps ... then I have to go lay down because not only am I tired from being in the pain, I can't comfortably sit. I can't get a good night's sleep, and I always wake up feeling like crap. I don't even feel like going out of the house anymore. I have to be physically forced to go outside where just 4 or 5 years ago, you couldn't keep me indoors,
I was always out ... but why bother going out now; I can't do anything without fearing another outbreak, or the excruciating pain that my pain medicine doesn't help control. I can't even work because of HS now, so I have no income now. My Mother who is on SSI with a fixed income is supporting my son and myself now. I have bills piling up that I have no control over. I can't pay them, and I cringe every time the phone rings. A potential employer won't hire me because I have to take breaks (or rest periods) often, I can't sit or stand for long periods of time, I can't stoop, bend, squat, or lift heavy things without feeling it in the bumps & surgical scar (believe me, I have tried getting a job – the guy looked at me like I was a nut case when I told him what I wasn't physically able to do). I was able to work with it before when it was just in my armpit, I was OK with it there. But it spread ... and then I realized I was in for one heck of a time with this disease, and I went from stage 1 to stage 2.
I just get so damn disgusted every time I see or feel a new outbreak. All I do is lie around and cry ... I can't even take care of my son the way I should, or take care of my house. I don't want to go out of my house because I know how cruel people who don't know what I'm going through can be. Like the last time I went grocery shopping (2 months ago), I had an "alien" that had developed near the top of (and I'm not going to be medically correct here) the butt crack, and it had burst while I was shopping. The smell alone was bad, but I was wearing tan cargo shorts, and it absorbed everything! And a lot of people were pointing fingers, laughing, and making comments. They weren't even nice enough to wait 'til I was out of earshot to say them. Only one person had asked me if I knew I had something on the back of my shorts & shirt ... it was a younger man, and he had asked me because he had heard some of the people making comments about it on the other side of the store! I told him what it was, and why it happened ... and he was very understanding, and wanted to know more, so I sent him to the HS-USA website.
I know there's hundreds of other people out there that feel the same way I do...and we need help! No one should have to live this way. I miss my "old life" very much, and I wish I could have it back ... I was much happier then. I didn't get so sick as often as I do now (more colds, flu) ... not to mention the down time from it. But all in all, I am slowly learning to live with it day by day, but it's going to get to the point I need professional help (like I don't need it already) for the way I fell about things now.
I will try to say what it does to us in a holistic manner.
Physically: It is an autoimmune disease that can be transmitted genetically. Skin is the largest organ in the body, and when something goes wrong with your skin - it is a major problem. HS requires lots of rest and vigilant care. Stress and heat/sweating can exacerbate an outbreak. It is painful and causes joint pain, fever, flu-like symptoms. Because doctors do not understand hs all that well, they tend to send us on our way with antibiotics, accutane, steroids, and other bandaids. HS can become an overwhelming problem in a short period of time and many doctors cannot or will not cope with the patient as the treatment is tedious, chronic, heartbreaking, and requires the doctor be available for frequent visits. (My own doctor of 25 years told me that my HS was affecting his health in such a way that he could not continue to see me. He said it was too depressing and there was nothing he could really do for me. He sealed it by saying he'd had two heart attacks and he had to relieve his stress, therefore he cut me loose from treatment.)
Social: People with HS tend to isolate themselves because they fear odor and are sensitive about anybody seeing the lesions. In the workplace, I have had people refuse to sit in my chair and I have been required to bring notes from the doctor saying I'm not contagious. While this may comfort the landlord, the coworker or whomever asks for the note, it makes the person with HS feel they aren't entitled to a social life. I remember one member was not allowed to swim in the pool at his apartment building. Many of the affected people on our list have said they are afraid to start dating because they don't know what to say to their prospective partner. It's difficult to hide away when you are feeling sick and you feel all alone. Bosses have made remarks such as: "I don't see anything wrong with you," as they are reaming me out for taking sick days or wondering why I have no energy. People who feel afraid to have friends because of this disease are isolating themselves and are not socializing, and may have a reduced social support circle that is necessary for good mental health. Many people with HS start isolating themselves because they have HS under their arms and they feel they cannot wear sleeveless garments - and it interferes with many moments in life such as affairs where formal dress is required. I'm thinking about all the women who have participated in weddings worried about how to hide their HS in low-cut, sleeveless bride's maid dresses and the like. And who doesn't want to see a man with his shirt off? People with HS may feel conspicuous to the point that they cannot participate in many activities... showers in gyms, showers in high school, wearing a swimsuit, hugging, etc. Sadly, this disease affects us in our erogenous zones, which can lead to a repressed sexual life (this goes under psychological as well as social).
Psychological: The disease has a terrible depressive action. With each outbreak, the patient may feel abysmal and hopeless, as they cannot do anything to ease the pain and stop the ravages of the disease. Many of the drugs used exacerbate this effect. Prednisone has been known to make sensitive users psychotic and suicidal. Accutane has a depressive component that has led several people on our list to say they were going to run the car off the road or into a tree, etc. (I used to be the person they called whenever someone left a suicidal posting and I was kept quite busy with that task alone) The side effects of these drugs are many – not the least of which is causing brittle bones. As the disease progresses, the person has more and more feelings of low self-worth and self-loathing, particularly if they don't have a doctor who will support their treatment. If a woman or man is of childbearing age and wants to have a child, there can be some horrific feelings of guilt due to the genetic component of the disease. Some of us opted out of having children for that very reason.
The bottom line is this: I am 52 years old and I am resistant/allergic to every antibiotic available. I had major surgery for my HS and before the bandages could come off – I was broken out worse than before. Doctors who want to help are depressed they cannot find something to cure us - and they begin to disengage.
Although everybody says HS doesn't kill - my guess is that the secondary side effects (drug side effects, resistance to antibiotics, etc.) can combine to kill the individual.
At this point - I don't have one doctor who knows what to do for me. They all say it is too bad - but they have no clue what to do. Learned helplessness is a real psychological problem and I think people with HS suffer from it unless they have a lot of support.
Last but not least, many doctors become dermatologists because they think they will never have to deal with anybody who is really sick. They have botox posters on their walls. Those dermatologists are worse than worthless to somebody with HS. I've had doctors who wouldn't walk near the examining table but would only stand near the door. I've had doctors say "I suppose you are going to come in every time you get one of these things" (well yeah, I'd like to control the disease as much as possible). Even if you find one good doctor, that doctor can't be there for you all the time. Isolation is a major problem socially, psychologically, in every way.
Socioeconomic: Having HS can be extremely expensive because a lot of the medical costs are not covered by insurance. The bandages and tape are expensive and one goes through many of these. The prescriptions are expensive and not always covered. I still don't know what my bill will be from radiation. I have spent a small fortune on finding 100% cotton, silk, rayon or wool clothing, wearing thigh highs instead of panty hose (stockings are more expensive), the cost of uncovered treatments such as hibiclens, tea tree oil, bag balm, vitamins, special soaps and scrubs. I have also exceeded my sick time at work and this has caused me to use all my vacation time and finally I'm down to leave without pay.
Stage 3 of HS
Many of us with HS have a long history of ignorant medical professionals, hopelessness, loneliness, anger, frustration, despair, resentment and the quintessential “Why Me?” turmoil.
Five years ago, I learned that I was not alone. This disease effects millions of people – some still unaware of its name or nature. Part of the reason I have been able to cope is that fact that there is a support network of kindred spirits. And I thank each and every one of them for their camaraderie and continued research.
Some would say that I wear this disease with dignity, but in truth, Hidradenitis Supporativa has humiliated and humbled me. I have kept mostly silent, plagued with my thoughts as I wallow in self-loathing and pity.
Despite HS, I have lived a good life … my cup ran over with an adoring husband and two beautiful children, wonderful friends and family, a loving home, and on top of all that, a senior level executive in a large corporation. At one time, I was able to cope with this incurable disease.
Last year, I remember thinking about “Stage 3” of HS, and thinking, “How can it possibly get any worse than Stage 2?” And besides, it is not going to kill me, right? Wrong. HS in and of itself might not kill, but the long-term psychological impact of the disease is destructive.
Physically, the increase and severity of the “lesions” in Stage 3 is demoralizing. No territory is unaffected or safe from its reach. The use of metaphors is fundamental to describing how HS manipulates the body: The lesions tunnel below the skin and explode like a field of red-hot poppies across wide areas. They become hard to manage like a wild forest fire – trying to attend to clusters of outbreaks in the groin and thighs, on the buttocks, under the arms and down along the sides, and for me, culminating under the breasts – an intricate subway system of secretion. And to date, all I have had to combat the outbreaks are temporary Band-Aids and no relief.
In Stage 3 of HS, the lesions are larger, and close together. The pain of each one is excruciating, and at times, there can be more than 20 active, in many areas, at different stages of forming, draining, and now, very rarely healing. Walking and exercise are difficult, and therefore results in a daily struggle with diet. Clothes are selected not for fashion, but for comfort and practicality. Luxurious bed linens are only used on one side of the king-sized bed – the side that HS does not occupy. Feminine products are now used to shield abscesses. Getting into and out of a vehicle warrants a gold medal in acrobatics. Fatigue and Fever are the only “f” words in my vocabulary. Mammograms, once only thought of as uncomfortable – are now a weapon of torture. Intimacy occurs infrequently and usually in a very dark room. This leads me to the psychological effects of HS.
What people do not see is the passageway to the psyche – the spirit – that HS travels. I had learned to live with HS, and somewhat accepted this disease, and acknowledged it in my lifestyle. In retrospect, I had tried to shield others from the disease, but in reality, I was protecting myself. HS has disfigured me physically, and that I am coping with. The periods of low-lows and sporadic highs are upon me. What people can now see are the consequences of or outcomes of this debilitating disease. The withdrawal from social events, the excessive drinking, the constant fatigue, anxiety over intimacy, and the once easy laughter turned to quiet. Everything seems overwhelming, a struggle. Self-destruction is not easy to explain, nor can I eloquently or unabashedly. It has happened gradually, the weight of the disease taking a toll on the quality of my life. But, above all, I still remain hopeful that a cure is imminent.
In summary, HS is not just a flesh-eating disease; it eats away at your soul.
My HS mainly stays in my armpit region. Because my underarms stay so swollen and red, it’s hard for me to even pick up my baby girl, much less lift boxes or bags. Also, I have to be careful about being outside because the heat just makes my HS worse. It not only affects my life, but my kids' and family's lives as well. I can't do some things and I can't go certain places. I love my family so sometimes I go ahead and try to cover up the pain, but I pay for it later. I really hope a cure can be found. I think I speak for everyone when I say WE WANT OUR LIFE BACK.
I have a severe stage of HS and have surgery, etc. This illness has taken away my ability to do things with my family such as playing with my children, I cannot work any longer, and my self worth is diminished. I have lost a lot of my independence as well. I long to do even the simplest of things like just plop into a chair. Every movement of each and every day is filled with pain. Socially, I can't even go to shows or movies without planning ahead to see if accommodations would be suitable for me to sit. And one of the worst things is it has taken away the intimacy I shared with my spouse. I could probably come up with many, many more things, so if you need them let me know!
Imagine … Its graduation night, your hair is coifed, your nails are done, and your pretty dress is laid out on the bed. You should be happy and excited about the evening’s festivities, but you cannot. The boils are seeping and will surely ruin the material, and worse, expose their bloody hideousness to others.
Imagine … You have dated for weeks, and were meant for each other. Tonight you are going to take the romance to its next and most natural next level. But you can’t … you cannot tell … you can feel them throbbing … you cannot hide, and you want to run. As you look down to your most private of parts, you see them, the ugly blue/black scars of those that have healed, and the red, weeping ones that are active. You are not contagious, and you know this, but the sight is repulsive. How can anyone love you?
Imagine … Your grandchild runs to great and hug you, but you cannot lift, you cannot bend. Your face is strained and eyes teary as you silently curse the lesions again, for the millionth time today.
Imagine … You are scared, and in pain, and just want relief. The young intern at the hospital reels in disgust while lancing a boil the size of a tennis ball under your arm. You hear them muttering about cleanliness, odor, and the fact that you are overweight. You silently scream, “Help Me!” as the needle pierces through the ghastly lesion, deep down into its infection. Then you remember, it is always like this.
Mobility-
can't life arms, can't shave underarms, can't wear deodorant, should not
wear panties, mobility effected in ways of not being able to sometimes do
household chores, sometimes having to let our house work not get done, and
even sometimes preventing us from driving. I know that it can even be a
chore to simply go to the grocery store. We need to paint a picture of how
bad this whole thing really is, yes, we adapt to doing things differently,
but wouldn't we all like to have it was the way before we had HS? Huge for
instance, summer months, people isolate themselves in homes in fear of heat
and aggravating the HS.
Well, this is a bit of a tuff one ... For the past few years, up until a few months ago, I was not handling things very well. My HS was getting worse and quite hard to handle. I was struggling trying to accept HS and also the limitations that it some times made me have like not being able to do some things on my own. Over the years, I struggled on but with other personal family issues to deal with HS became too much to handle and I toppled over the edge a little.
Day to day life then was hard; I pushed myself to work saying nothing was wrong with me I had nothing wrong and I basically started shutting everything and everyone from my life. I hated me, my life and everything that I had become. I was more suicidal than ever and could not cope with the smallest issues without blowing them all well out of proportion. It was very hard to deal with. People and my GP became increasingly concerned for my welfare and it was not easy accepting that I needed a little help and I agreed to see a psychologist. This was not only to do with my HS but other parts of my life I was struggling with. This was back in October 2002. I have only been there every two weeks but the change and how I perceive things is so much more clear. For once I can safely say I love me for me and I no longer hate my life or what I have. I now realize that my hubbie and close family are the most important people in the world to me. In some cases if it was not for my hubbie and my sister I may have ended up doing something very silly.
Now I look at my life and I realize that I can handle a certain amount of things in my life at a time and that I should not be ashamed or hate my life and myself. I may have some drawbacks with what HS can cause me, but I am still one lucky woman. I have a fabulous, wonderful hubby and a very close sister whom I love to bits and even my mother-in law. She has attended every doctor, hospital appointment with me from I was 16 and she has always been there for me. In some cases when I could not walk or do anything she has looked after me, always cheering me up and being so supportive where in some cases my own parents have not been.
Sorry this was a long response but there was loads of negative feeling at first but now I feel ok about it. I realize I have this and I have to deal with it. But then this is my coping strategy and how I have chosen to progress with HS and my life.
For me having HS is a roller coaster ride ... strong and positive some days and miserable and defeated others. I always keep strong in my head but sometimes my body argues ... especially when I’m constantly tired. I always try and keep some hope – even when it interferes with plans I have made (as it often does - sods law I guess!!) I have had the disease for about the same time as I have suffered with depression - and put a lot of coping strategies I learned through therapy into my emotional dealings with my HS. What often pulls me through is the fact that there are plenty of people with more to cope with than me ... I have otherwise such a good life - so I try n hang onto that. My mum is always reminding me that it is ok, every once in a while, to put the fight on one side and allow myself to be sad about the HS ... I really love her for that as sometimes I get so angry with myself if I think I am "giving in" ... she lets me know I’m "allowed" to not always be strong.
I wonder whether my 'mind' would be any different if I hadn't had HS ... who knows? I'm still basically the same as before, but I'm sure it's had an effect. So, here goes ... I'm very cynical and pessimistic about the world in general. I don't have much patience with other people, especially as they usually moan about something that was ultimately down to a decision they made earlier. I do get real down when a lump is on its way up, that's often the first sign I get when one is coming. I feel generally excluded from 'normal' society because of the impacts of HS. On the positive side though, I don't moan to people so I at least come across as positive (!), and also feeling so alienated at times has, along with other things, given me a very strong sense of social consciousness and justice etc. HS isn't the problem; it's the world in general!!
I try not to let it effect my live by kind of living in denial as much as possible. That's healthy, isn’t it? I remember when I tried to put together a bio for the group, it was so hard because I had to think about it, admit it and re-live it and that's not something I like to do. I cried whilst trying to compose it and felt dreadful for days afterwards - its kind of nice in denial land so I promptly went right back there! I am perceived by the outside world as a really "together" woman, who has all the answers - great home life and family, great job, loads of friends - people constantly ask me for advise in all matter of things like I know what to do? Jeez I wish! Nobody has any idea what's hiding behind my façade - not even sure I do!!
I am sitting here now at work with a developing alien on my vulva throbbing away and trying to honestly answer your question of how the negative effects me on a day to day basis - so as today is a negative day - how do I feel? I am pissed off actually, so is anger how I deal with it - I dunno? I try and just put it to the back of my mind. I have stopped talking about it to friends and family - my only connection is really now this support group. I thank you all for the support, as I couldn't cope as well as I try to without it. I have become quite good at blocking out the pain so it has effecting me by increasing my tolerance to pain I suppose.
One thing I can relate to that's been mentioned is my complete lack of sympathy for others (not HS suffers of course!!) but when friends are moaning about lesser ailments and saying how terribly it effects their lives I just think, oh FFS get on with it!!! Do not waste my time! Arrrgghh. So it has increased my tolerance to my own pain but decreased my tolerance to others pain!!! I am determined it will never become my "crux." I will not allow me to feel sorry for myself - that for me would be admitting defeat and it will not win - I am stronger than HS - gawd do I sound like an over emotional American now? LOL When I read and reply to posts I try to remain detached but you sneaked in today didn't you eh!! Sorry for the essay guys - right, I'm off back to denial land now so byeeeeeee
Coping with hs - I find my kids help, spots and all there love is unconditional, they are my little rocks .my husband is great but sometimes its hard to feel secure, when there are so many beautiful ladies out there who are not covered in pus! I have to keep myself hopeful that I will get better, I'm a good person, spots and all I am going to live. On sad days, I allow myself many tears. My parents do not understand, which makes me feel unhappy that they do not understand (and my Drs and derms) … who will? The good thing when one is really low the only way is up! One trick I have learned is to replace one negative idea with two positive ideas.
Some days I cope better than others - some days I am fine - other days I just want to scream!
How does HS affect you – well knowing that I have `something' has made me feel better this last couple of days, but psychologically yes it has affected me. Some days I feel dirty. I feel why me? I am angry, as I cannot move around properly, bending down makes me hurt all over. Like others, I was abused as a child by people that where supposed to look after me and love me. I blanked out much of my childhood and now, I have my own family and have found happiness. But HS lurks around reminding me that things cannot be perfect for everyone. Then I feel guilty, as there are so many people worse off than me and I have no right to feel the way that I do and wallow in self pity, so I pick myself up, brush myself off and `hobble' out with a smile stuck to my face. Take deep breaths at work if I get knocked, or burst (then there are the frequent trips to the loo [restroom] to check that nothing has leaked) or I feel that knowing dull thud inside telling me that others are on their way. I so want to tell my close work colleagues but have no way of knowing how they will react or how I even start to explain. Then I come home, and the thoughts return and so the day goes on. Don't get me wrong, I am a naturally happy person when surrounded by people, it's when I am alone and the pain gets the better of me then HS starts to win again. Having HS long term – that's slightly different. I didn't know that I had HS until recently. So for 16 years it's been something that only `I' had to put up with and not complain about and I think that I have got so used to it now, I don't know any different – cant remember much about life before HS! So I am determined to not let it rule my life (positive) but it does make me cry (negative)
The enormous impact HS has had on my life is the depression/mood swings. I am unable to do many simple things that I use to. I can not mow my own yard, can not stand, can not sit for long times. Like I said, I think the depression is what hurts me the most. Even though I have pain pills etc, I am so use to being in pain that it is just a part of my life now. I know I have no control of my body but when the mental part kicks in is when I really loose it. The depression and mood swings are horrible.
Wanna know how it impacts my life ... sure her goes. I can't walk long distances anymore. I miss out on so much of my children’s activities. I can’t stand hot rooms or humid conditions. I can’t work more than a couple of weeks at a time before I flare up again and miss work. My work wants to get rid of me because I am now a liability to them. Sometimes I just start crying for no reason other than I am sick of being in pain. I wake up just about every morning feeling like I have the flu. My knees ache and I am always drained and have no energy. I sometimes get the feeling of hopelessness come over me and I go into days of depression.
Not bad enough we suffer from this stupid (I could call it worse) disease ... (sorry but I don't like Alien or boils), actually I don't know what to call this beast (for lack of a better word)
The meds (penicillin, antibiotics, steroids, cortisone injections, etc, etc ... that they (meaning doctors) give us can harm us or we become so used to taking them that when we need them for something else ... (they won't help) ... we have become immune to them.
Then there is the depression, and the antidepressants they give us ... they help for a while (takes a while to work) then we are weaned off of them and guess what ... still depressed!!
Or remember this ... Well, if you lost some weight and quit smoking it would just go away! HELLO … I weighed 98lbs soaking wet and was a non smoker when this all started ... only then you didn't know what I had ... Did something change, now that it has a name?
How about clothes? Can we actually wear them for extended periods of time? Underwear, what's that??
How about the pads, creams, special soaps, bandages, etc ... Wonder if we can get funding to pay for all that? hmmm ...
Surgery? Wow, want to see a road map with bumps? Hope, pain again, starting to feel better, am feeling better ... oops ... THEY'RE BACCCCKKKK!!
Friends, real friends ... You might be able to count them on one hand if lucky ... Who likes to be around a grumpy, tired sick person anyhow?
And tired ... all the time. Well, we must be lazy, right??
How about putting on a smiling face for strangers? Me I am happy ... yeah, if you say so!
Or how about, I have a very rare disease that I don't want to talk about ... Why, because its ugly and it stinks ... wanna see? Guess not!
Have you lied about what it is? ... Thought so!!
Getting disability benefits? Wow a whole other ball game. Must have lots of research, pictures, doctors papers, etc, etc. It comes, but takes time ... well, we certainly have that, don't we? But the guy/gal down the street with a faking back injury ... only took him/her one shot right? Guess what? They are up on the ladder painting the house ... Yeah right!! Where is the justice?
You look in the mirror and what do YOU see? Something you'd rather not right?
Well, all in all ... this sucks big time ...
Do we give up? Lock ourselves away because we are shunned?
No way ... but we do don't we?
Look again in that mirror ... see yourself ... the real you. I mean the
one with a heart and soul ... the one who marches on no matter how hard it
seems ... You are Special and You are a survivor!!!
Alone? Not anymore! Thank God for this place where we can come and ask
questions, help each other, even laugh ... We deserve to be happy too ...
Reason of this message ... none really, just having a bad time ... thought I would share it ... lol
Sorry if I offend anyone ... Just venting again.
Does my anger show?
I am sitting here by myself waiting for the visiting nurses to come do a bandage change while my husband is out on the boat fishing. We both enjoy the boat and camping and all the great outdoors things you can do but with HS it is a struggle to get a weekend that is alienfree or painfree but when they come they are so great. I can not drive or work right now due to HS. I can not shower as the Surgery area can't get wet which also means the pool and hot tub are out for me. The doctor has already told me that this summer is totally short for me as when this area finally heals he is gonna go back in and do more surgery to give me range of motion in the arm which requires surgery and then grafts. So how does HS affect my life. It makes it impossible to really call this living. Doctors talk about the quality of life, well with HS during flareups or after surgery the quality of life is the pits you don't have a life you depend on others for almost everything you do or need. I hope this helps with your petition.
Impact on my life:
I am tired and sick all the time. The staph has invaded my system. I never seem to recover. Till 4 years ago, I use to be bedridden one month out of three. Four years ago, I was sick the whole month of June, and my system gave in. On top of the HS, I had a combination of 3 at any time of anything that ends in "is": cystitis, vaginitis, gastro-enteritis, brochitis, laryngitis or pharyngitis, rhinitis, otitisis, conjunctivitis because I am so weak. Since September, I have been constantly bedridden, had 5 flus, and major aliens, one requiring surgery. I couldn't leave for Christmas because I was so exhausted I couldn't sit up.
My husband has to do all the household chores: shopping, cooking, cleaning, laundering etc. I am house bound because any form of transportation tires me out. I have no social activities. I started losing my friends when I started canceling dates, or worse turning them down because I am not well enough to see them. I somehow manage to keep my business afloat because I talk to my customers on the phone, but I am missing out on new business because I cancel appointments or I am not well enough to see them. I have lost business and existing customers. I can't say I am sick, because I lose credibility, but then again, when I don't do things, they think I'm flaky. I used to sing, dance and paint. I had to give that up. I'm too tired to read, and TV gets too boring after awhile. I miss social contact. I miss my artistic activities. I'm afraid to lose my business. I can't go anywhere.
Sometimes I think it's no use living this way, especially when I am in extreme pain. Even the most compassionate people do not understand what I am going through. And I feel isolated because of that.
P.S. Things have changed since I joined the list a month ago. Thanks to proper information I got here, I was able to get proper help from healers and seem to be in remission. 10 days ago, I went back to work, overdid it and had a relapse for 2 days.
Physical -- being tired all of the time, flu like symptoms, lost work time, pain and frustration.
Psychological -- it cost me my career and almost my family. I was in research and low vision clinic work (1970-1984), but the drainage, smell, pain, absences along with an attitude of misunderstanding of this disease, cost me dearly. I am no longer in practice and lost many things before I decided to do the other thing that was my passion -- work with children who were traumatic brain injured. Many adoption workers saw me as a threat to their children, infection, contagious! So I've found doctors to call it a healed skin condition, not the truth but the best I can do.
It totally disrupts your life! Between the pain, the smell of infection and the way it looks, I have not had a day without it for 16 years! I am a nurse. My job is to help people cope with this kind of thing. But on certain days I find myself not being able to do that very thing. Just last week, I had my worst outbreak ever. I had a temp of 102. Pain so bad I cried. A lump under my arm the size of a golf ball. I start with a whole new set of doctors next week, here’s hoping for more pain free days!
I wanted to add a few things of my own. Already mentioned was the cost for over the counter medications. So many of us spend a small fortune trying new products, none of which are covered by insurance. Seems like every time someone mentions a product, we scramble to the store to buy it and try it out. I also want to comment about clothing. Due to the draining, we ruin our clothes, wash cloths, towels and bed linens. We learn not to wear colored clothes in case an unexpected draining occurs, dark clothes hide leakage better. And there are other clothes limits, like not wearing sleeveless shirts, embarrassed to wear shorts or swimming suits, nothing that reveals the areas of hs; everything hidden.
On the other side, we can actually save some money because many have given up wearing bras and panties. When at home, I have really old, ragged clothes that I wear, big and loose and comfy. I very seldom have company or visitors at home. I discourage drop by company because I don’t want to have to “dress” for visitors. I mostly communicate and stay in touch with friends and family by phone or Internet.
The odor – a whole story all its own. I get so self-conscious because I can smell it and I’m sure everyone else can, too. For the most part, my hs is mild compared to others who have it. I have learned to take care of it myself, no doctor visits unless a secondary condition develops (cellulitis). I have my little daily routines and products I use, like tea tree oil, bag balm and neosporin. Every evening, on the way home from work, my underarms feel full and swollen. I have learned to take kleenex and squeeze my underarms to relief the pressure.