Another bout. It's finally gone but hurt like hell.
Saturday, November 17, 2012
Sunday, August 5, 2012
Tuesday, July 31, 2012
Facebook shuts down a PRIVATE medical support group for people with a rare, painful, disfiguring disease called Hidradenitis Suppurativa with no explanation and no way to discuss the issue.
http://www.facebook.com/
http://www.facebook.com/
Thursday, June 7, 2012
http://www.empowher.com/skin-hair-amp-nails/content/living-hidradenitis-suppurativa
An excellent article about people who live with HS. Please read it and share it.
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An excellent article about people who live with HS. Please read it and share it.
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Tuesday, April 17, 2012
Life and it's tendency to bite
Sorry I haven't been around much everyone but I have been helping my father deal with the fact that my mother is severely ill and hospitalized. We have been spending everyday for the last few weeks at the hospital. Even on days where I have extreme flares and cannot walk very well I am there. Heck what better place to be when you are in pain than in a hospital.
Anyways my HS has been loving the stress I am under and has been biting extremely hard. Daily I am flared somewhere. Often I am flared in multiple places at once. I am on no current treatment for HS. I've tried them all except surgery. My derm agrees with me that surgery is a temporary fix at best and that I could end up worse than I am now which is often the case. the only other option open to me is remicade which I cannot afford. Since hubby has changed jobs twice in the last few months we currently have no medical coverage yet even if I did I could not afford the copay for remicade. besides the derm has told me straight out that once I start taking it I will be on it for life since others who have been on the treatment have had their HS come back with a vengeance when they were completed.
So at least I have some pain relief. I can no longer take pain killers by mouth as my stomach rejects them and I promptly throw them back up. I did find out that my being so very careful with the oxys and taking them only when the pain was very bad was a good thing. I had not developed an addiction like so many others have and was able to discontinue them without any withdrawals or side effects. I have however been placed on a pain patch so all those years of avoiding addiction were all for naught. I guess my body is now physically addicted to the pain patch. This is a place I never ever wanted to be, I fought so hard to avoid, yet in the end HS has the last laugh as I have become the one thing I dreaded most in this world, an addict. My doctor has promised that should a viable treatment be made available in the future he will help me slowly withdrawal from this pain med and ease me off of it but it won't be easy. I'm just terrified that a working treatment will never be found for HS.
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Anyways my HS has been loving the stress I am under and has been biting extremely hard. Daily I am flared somewhere. Often I am flared in multiple places at once. I am on no current treatment for HS. I've tried them all except surgery. My derm agrees with me that surgery is a temporary fix at best and that I could end up worse than I am now which is often the case. the only other option open to me is remicade which I cannot afford. Since hubby has changed jobs twice in the last few months we currently have no medical coverage yet even if I did I could not afford the copay for remicade. besides the derm has told me straight out that once I start taking it I will be on it for life since others who have been on the treatment have had their HS come back with a vengeance when they were completed.
So at least I have some pain relief. I can no longer take pain killers by mouth as my stomach rejects them and I promptly throw them back up. I did find out that my being so very careful with the oxys and taking them only when the pain was very bad was a good thing. I had not developed an addiction like so many others have and was able to discontinue them without any withdrawals or side effects. I have however been placed on a pain patch so all those years of avoiding addiction were all for naught. I guess my body is now physically addicted to the pain patch. This is a place I never ever wanted to be, I fought so hard to avoid, yet in the end HS has the last laugh as I have become the one thing I dreaded most in this world, an addict. My doctor has promised that should a viable treatment be made available in the future he will help me slowly withdrawal from this pain med and ease me off of it but it won't be easy. I'm just terrified that a working treatment will never be found for HS.
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Friday, February 3, 2012
Bloggers
There are a lot of us out there that blog about our lives with HS. I've come across another person who's writing style is excellent. The blog is definitely worth a read. If anyone else has a blog they wish to share please let me know and I'll post a link here for you.
Not-Dying with Hidradenitis Suppurativa http://notdying.wordpress.com/
Well back to it. So much to do and so little mobility to do it with. *sigh*
Not-Dying with Hidradenitis Suppurativa http://notdying.wordpress.com/
Well back to it. So much to do and so little mobility to do it with. *sigh*
Sunday, January 15, 2012
Bandages
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Ideas to lower wound care costs: Tapeless, washable, reusable bandages. Initial cost is a bit but not too bad. Since these can be reused over and over they may be an excellent idea. They are a covering only and not meant to go right over the wound but simply to hold the dressing in place.
The second link is about making and sterilizing your own reusable cotton or linen bandages. They just tear but I would be tempted to sew a neat edge. Anyways These are interesting links. Enjoy
http://www.tapelessmedical.com/
http://www.antlife.org/homemade-sterile-cloth-bandages/
Also a video on making crochet cotton bandages.
http://www.youtube.com/watch?v=qeNfV7_8JmI
Ah I found an actual written pattern for the crochet bandages. They call them leprosy bandages. Anyways the instructions are lower down the page here:
http://www.bevscountrycottage.com/bandages.html
Also if you will be making bandages, once you have made enough for yourself consider making a few more to donate to this worthy cause.
http://www.leprosybandages.blogspot.com/
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Ideas to lower wound care costs: Tapeless, washable, reusable bandages. Initial cost is a bit but not too bad. Since these can be reused over and over they may be an excellent idea. They are a covering only and not meant to go right over the wound but simply to hold the dressing in place.
The second link is about making and sterilizing your own reusable cotton or linen bandages. They just tear but I would be tempted to sew a neat edge. Anyways These are interesting links. Enjoy
http://www.tapelessmedical.com/
http://www.antlife.org/homemade-sterile-cloth-bandages/
Also a video on making crochet cotton bandages.
http://www.youtube.com/watch?v=qeNfV7_8JmI
Ah I found an actual written pattern for the crochet bandages. They call them leprosy bandages. Anyways the instructions are lower down the page here:
http://www.bevscountrycottage.com/bandages.html
Also if you will be making bandages, once you have made enough for yourself consider making a few more to donate to this worthy cause.
http://www.leprosybandages.blogspot.com/
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Tuesday, January 10, 2012
Intense pulsed light - IPL
I'm doing research on these lasers and depositing the links I find regards treating HS with them here.
http://www.ncbi.nlm.nih.gov/pubmed/21788837
http://www.ellipse.org/media/Improvement_of_hidradenitis_suppurative__Agnet.pdf
http://journals.lww.com/plasreconsurg/Abstract/2011/08000/Treatment_of_Hidradenitis_Suppurativa_with_Intense.16.aspx
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http://www.ncbi.nlm.nih.gov/pubmed/21788837
http://www.ellipse.org/media/Improvement_of_hidradenitis_suppurative__Agnet.pdf
http://journals.lww.com/plasreconsurg/Abstract/2011/08000/Treatment_of_Hidradenitis_Suppurativa_with_Intense.16.aspx
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Shame
Shame. I keep seeing over and over again HS'ers saying how much they are ashamed of their bodies, how embarrassed they are, how unworthy they feel. It's time for that to stop. What have any of us done to feel this way. Have you screwed someone over? Have you deliberately scarred your body? What have you done that makes you feel that you deserve HS? I understand why people feel this way. I'm not an ogre but it hurts me emotionally every time I see someone talking this way. Does a cancer patient feel ashamed? Does someone with Crohns feel ashamed? I could keep going on but you get the point.
What it comes down to is this... you have a condition called HS. You did not deliberately set out to develop this condition you couldn't as it is most likely genetic (still being debated but look at the families involved). Let me see you made the conscious decision while your mother was pregnant with you that you were going to have HS. You must have because that's the only reason I can think of for you to feel ashamed.
Yes HS is an ugly disease, it scars and destroys skin. You leak blood and pus regularly, you smell but you did not do any of this to yourself. Oh ya what about relationships? You are worried about what your partner will say about your intimate scars etc. The way I look at it we have a built in idiot detector. If our prospective partner can't handle the scarring etc then we really don't need them around. Hey some people marry and are together for many years before they realize they picked a lemon. We can find out much sooner because of HS. Sure it means it may take longer to find Mr/Mrs Right but at least we won't spend years with a lemon.
Anyways the next time you feel ashamed ask yourself why? Shame is reserved for people who consciously have done or said something to feel that way. Hs'ers do not fall into that category.
What it comes down to is this... you have a condition called HS. You did not deliberately set out to develop this condition you couldn't as it is most likely genetic (still being debated but look at the families involved). Let me see you made the conscious decision while your mother was pregnant with you that you were going to have HS. You must have because that's the only reason I can think of for you to feel ashamed.
Yes HS is an ugly disease, it scars and destroys skin. You leak blood and pus regularly, you smell but you did not do any of this to yourself. Oh ya what about relationships? You are worried about what your partner will say about your intimate scars etc. The way I look at it we have a built in idiot detector. If our prospective partner can't handle the scarring etc then we really don't need them around. Hey some people marry and are together for many years before they realize they picked a lemon. We can find out much sooner because of HS. Sure it means it may take longer to find Mr/Mrs Right but at least we won't spend years with a lemon.
Anyways the next time you feel ashamed ask yourself why? Shame is reserved for people who consciously have done or said something to feel that way. Hs'ers do not fall into that category.
Friday, January 6, 2012
Hello it's me again
I know I know I have been very vocal the last few days. I received a blank journal for Christmas. It's beautiful, leather bound with a little pouch for images. I've been writing in that so I have notes when I go to a doctor. I've been told I should apply for disability but after seeing how much other HS'ers go through I'm not sure I'm ready to face that. I think I am also mourning the loss of my career, business and I do so miss teaching.
George is again pushing me to look into setting up a Canadian foundation for HS but to be honest I have no idea where to start. he says I'm smart enough and stubborn enough and he would help with any business aspect. My sis has volunteered her help along with a few canadian HS'ers but I just don't know.
We need such a place in this country, we need to get the misinformation addressed and correct info put out there BUT let's face it my health sucks and I am so worried that the daily pain will cause me to mess up somehow. I will however keep seriously considering it. I just wish I had someplace to start.
George is again pushing me to look into setting up a Canadian foundation for HS but to be honest I have no idea where to start. he says I'm smart enough and stubborn enough and he would help with any business aspect. My sis has volunteered her help along with a few canadian HS'ers but I just don't know.
We need such a place in this country, we need to get the misinformation addressed and correct info put out there BUT let's face it my health sucks and I am so worried that the daily pain will cause me to mess up somehow. I will however keep seriously considering it. I just wish I had someplace to start.
Thursday, January 5, 2012
More pictures
Here are some more pictures. Yes it hurts as bad as it looks. The worse thing about this disease is the loss of hope. I currently am not on any treatment. I've been offered Remicade and told I would have to take it for the rest of my life. It's expensive and if I miss a dose the HS comes back with a vengeance. So if hubby changes jobs I'm screwed. The side effects are nasty as well. Laser treatment using a nd:yag laser is promising and had some results but I couldn't afford the $1000 every six weeks (travel and treatment) so that's out. Surgery is not an option after trying for 3 years to find a surgeon that would perform the surgery I give up. Only one surgeon even agreed to a consult and then turned me down. So basically I get to watch it progress until life becomes a living nightmare. Anyways enough of that. On to the pictures...
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| Groin and lower stomach. Obviously waling can be difficult and sex is out of the question. |
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| Groin - another angle |
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| Underside of breast. this picture was taken to show the rash I sometimes wake up with. This happens when a lesion starts draining during the night when I am sleeping. It really burns badly when it happens |
Wednesday, January 4, 2012
Grasping at straws
Another day has past. Both of my armpits are burning like they are on fire. I have a new monster just above my groin about the size of a loonie (cdn currency). It's very sore. Tonight will be one of those times when I don't sleep at least not for more than an hour at a time. Painkillers are out. I'm still throwing them up.
I truly know what the definition of hell is... agony without a break. You would not imagine how desperate I am becoming. I have no idea what to do anymore. I'm beginning to dread waking up everyday. Dammit, I am getting married this summer. I should be excitedly planning my wedding. I should be on cloud nine. Instead I keep thinking of how I am going to push him away since this is no way for anyone to live let alone to watch someone you love go through it but then I think about what I would do if I were in his shoes. I would do the same as him. I just wish I could be excited about everything but instead this damn disease has me thinking about things no person should.
To quote a friend of mine "HS sucks... fuck you HS"
EDIT: Here is an interesting article from the perspective of someone just learning about the disease.
http://blogcritics.org/scitech/article/this-could-well-be-the-worst/
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I truly know what the definition of hell is... agony without a break. You would not imagine how desperate I am becoming. I have no idea what to do anymore. I'm beginning to dread waking up everyday. Dammit, I am getting married this summer. I should be excitedly planning my wedding. I should be on cloud nine. Instead I keep thinking of how I am going to push him away since this is no way for anyone to live let alone to watch someone you love go through it but then I think about what I would do if I were in his shoes. I would do the same as him. I just wish I could be excited about everything but instead this damn disease has me thinking about things no person should.
To quote a friend of mine "HS sucks... fuck you HS"
EDIT: Here is an interesting article from the perspective of someone just learning about the disease.
http://blogcritics.org/scitech/article/this-could-well-be-the-worst/
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Tuesday, January 3, 2012
Picture Time
I've taken these pictures this morning. I figure I should post them now at the start of the year and then compare them with new ones next year. I least I can see if it's improving or worsening. These shots are just my arms. I'll post other areas later. For now I'm going to go get some much needed rest.
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| Right arm |
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| Left armpit |
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| Left arm side view |
Monday, January 2, 2012
Random HS Links
Warning graphic images: http://www.asylumeclectica.com/asylum/malady/archives/acne.htm
http://hidradenitissuppurativapictures.com/
This poor fellow had to battle both HS and AIDS - http://www.ijstd.org/article.asp?issn=0253-7184;year=2010;volume=31;issue=1;spage=45;epage=46;aulast=Khambhati
For this person all I can say is OMG!! http://acner.org/img/acne_and_skin/acne-inversa_3_2460.jpg
A German site http://www.acne-inversa-charite.de/index.html and the translation http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.acne-inversa-charite.de%2Findex.html
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http://hidradenitissuppurativapictures.com/
This poor fellow had to battle both HS and AIDS - http://www.ijstd.org/article.asp?issn=0253-7184;year=2010;volume=31;issue=1;spage=45;epage=46;aulast=Khambhati
For this person all I can say is OMG!! http://acner.org/img/acne_and_skin/acne-inversa_3_2460.jpg
A German site http://www.acne-inversa-charite.de/index.html and the translation http://translate.google.com/translate?sl=auto&tl=en&js=n&prev=_t&hl=en&ie=UTF-8&layout=2&eotf=1&u=http%3A%2F%2Fwww.acne-inversa-charite.de%2Findex.html
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The Walking Dead
I was looking for more recent news articles when I came across two in Italian while searching Acne Inversa, another name for HS. Google was more than happy to provide a translation. One quote particularly struck me. It goes like this " I called it a" walking dead "because the wounds, if not properly disinfected and treated, can lead me to death" - Alessandra Cicero
Remember this was a Google translation so I'm not sure how close to the original intent it is. The article is here:
http://www.radiortm.it/2011/12/15/alessandra-modicana-in-germania-350-interventi-in-tre-anni/
Remember this was a Google translation so I'm not sure how close to the original intent it is. The article is here:
http://www.radiortm.it/2011/12/15/alessandra-modicana-in-germania-350-interventi-in-tre-anni/
It makes you think eh? It sure made me think.
2012
A new year has started. I had some very high hopes of it being better than last year but it definitely has come in with quite a bite. I'm flared under both arms and my right groin. The right breast is biting pretty good as well. I can't take any painkillers anymore as they make me nauseous followed by a round of vomiting. I believe my stomach is saying 'no more'. I'm learning just how much pain a human being can withstand before insanity kicks in.
It seems a study has been completed in regards to HS. It came to some predictable conclusions although the nd:yag was a bit of a surprise. Monthly nd:yag treatments although it doesn't say so I imagine those are for life. Too bad it's so damn expensive to have the treatments
QUOTE: "Conclusions Shown to be effective treatments for HS were a clindamycin-rifampin combination regimen, a course of infliximab, monthly Nd:YAG laser sessions, and surgical excision and primary closure with a gentamicin sulfate–collagen sponge. Most therapies used to treat HS were supported by limited or weak scientific evidence. A treatment approach is presented based on the evidence and on clinical experience at the Follicular Disorders Clinic, Department of Dermatology, Henry Ford Hospital, Detroit, Michigan. This review emphasizes the need for large randomized controlled trials to evaluate treatment options for HS."
http://archderm.ama-assn.org/cgi/content/full/archdermatol.2011.1950
It seems a study has been completed in regards to HS. It came to some predictable conclusions although the nd:yag was a bit of a surprise. Monthly nd:yag treatments although it doesn't say so I imagine those are for life. Too bad it's so damn expensive to have the treatments
QUOTE: "Conclusions Shown to be effective treatments for HS were a clindamycin-rifampin combination regimen, a course of infliximab, monthly Nd:YAG laser sessions, and surgical excision and primary closure with a gentamicin sulfate–collagen sponge. Most therapies used to treat HS were supported by limited or weak scientific evidence. A treatment approach is presented based on the evidence and on clinical experience at the Follicular Disorders Clinic, Department of Dermatology, Henry Ford Hospital, Detroit, Michigan. This review emphasizes the need for large randomized controlled trials to evaluate treatment options for HS."
http://archderm.ama-assn.org/cgi/content/full/archdermatol.2011.1950
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