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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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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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.

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.

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...

Groin and lower stomach. Obviously waling can be difficult and sex is out of the question.

Groin - another angle


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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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.


Right arm

Left armpit



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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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/

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