RIP Lonnie White

Lonnie battled a rare condition called Hidradenitis Suppurativa for much of his life. In 2010, his illness was featured on the Discovery Health Channel....

Lonnie's condition had been deteriorating in recent months. The Hidradenitis Suppurativa disease became more aggressive. He was diabetic, had acute pancreatitis and Crohn's disease. But Lonnie's spirit was always strong, his attitude upbeat.

http://www.dailynews.com/obituaries/20140331/lonnie-white-former-la-times-sportswriter-and-usc-receiver-dies-at-49

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Time to be hacked up

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I have surgery tomorrow morning to remove the area on my lower stomach. It seems it is fill of fatty tumors and sebaceous cysts so the surgeon has agreed to remove the area especially since it is spreading.

Wish me luck.

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http://www.change.org/petitions/dr-oz-please-stop-ignoring-hs-hidradenitis-suppurativa

Please take the time to sign this petition.

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1 month of paleo minus nightshades.

After my last infection I buckled down and really got strict with myself. Absolutely no potatoes or any other type of nightshade. Strict paleo. I must say I am once again several days free of pain killers. You think I would learn eh? Every time I start healing and feeling good, food gets the better of me and I end up in a downward spiral again of flare after flare. I must not eat nightshades ever again.

Ive been studying food and nutrition the last month or so. Today I picked up some books on paleo, autoimmune, nutrition etc. One includes a section on which foods interact with which body systems and organs. I intend to learn everything I can about diet and human physiology because I really believe that is where the key is. 

I am trying to get used to not saying diet as much and instead use the words nutrition. People need different types of foods depending on their country/area of origin and a lot of us are mixed breeds or mutts. Therefore one type of diet does not fit everyone. It probably explains why some of us have success on a diet like gluten free, vegan or paleo, while others don't.

It's possible that they need a combination or something specifically for them because of their origins. I don't know if that makes sense to everyone. Im still trying to wrap my brain around it all.

Anyways here is a picture of my progress over the last few weeks. This is done using only food. Click on the image to see if full size

Long overdue update.

Sorry I have not been posting much lately but I have been struggling with trying to live normally when I am anything but normal at the moment. With all this rain and dampness the humidity is making me quite ill and causing my HS to flare. I definitely miss our usual "dry summer". For those of you who are wondering exactly what is wrong right now... I have a rather large skin infection again covering my entire lower abdomen below the belly button. Like the stubborn fool that I am I have tried to push through and ignore the pain but it has finally gotten the best of me. As of yesterday I am on strong antibiotics and painkillers. The pain was horrible at the farmers market but I stubbornly pushed through it and put up a false front of being "fine just a bit under the weather" Today the pain is still there but I also am having fevers and vomiting. I just can't win. I'm tired, weak and unable to sleep because of the pain so I am running on about 3 hours sleep in the last few days.

You see because my disease causes me to have open wounds there is a large chance of one of those wounds becoming infected. Much larger than the average persons. I keep all my wounds clean and dressed but infections still occur. This happens to me about 2-3 times a year and has in the past come close to taking my life. I therefore do take it rather seriously. Within 24 hours of noticing my stomach was hot and red my doctor was notified and I had a prescription for antis in my hand.

Of course today I am being stubborn again and trying to catch up on things. Very shortly though I think i will just go and lie down for a bit. It is so hard to live a life where you are sick all the time. You want to be normal but instead you watch as life continues on around you yet you are unable to join. I miss people. I miss seeing my friends. I know a lot of you have your own lives and I imagine you must get so sick of me being ill all the time but it gets lonely. I am trying really hard to improve my health. I eat better than I ever have health wise. I am drinking only water with an occasional tea. I am cleaning my wounds often and taking vitamins supplements. I walk when I am able to to try and gain some strength. BUT I have had this disease for so long now that it has tortured my poor body and pushed it to it's breaking point. My HS is so out of control and it will be a while before the changes I have made will help to ease my condition. I am still waiting to see a surgeon as I need a large area of my skin removed. It is far too damaged to heal at this point and is now growing a large fatty tumor. Yes I get tested for cancer quite regularly actually.

So there you have it I am once again sicker than a dog, feeling lonely, a bit depressed, but being stubborn I'm struggling forward as always. I'm trying to put on a false face so those around me do not know just how sick I really am but it's a loosing battle. I apologize for this rant but I had to get it out. For those of you who are tired of reading/listening to it just stop following this blog. I will understand. Heck I've lost friends because of this disease. It happens a lot. They just drift away and after a while you don't see them anymore. 

Well now it's time for me to get back at it after all life is beautiful isn't it? I'm lucky to be alive I've been told I just wish I didn't feeling like the "Walking Dead"

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What is HS ?

By Teri Kirkman in The Faces of Hidradenitis Suppurativa 

I am going to try and explain what HS is in everyday terms. It will be very generalized and as simple as possible. I will be posting links to images of HS stored off of Facebook. I cannot post them here as some people will consider them offensive. If you have a weak stomach and easily take offense do not follow the links they are extremely graphic. A disclaimer will be shown the first time you visit the images. That being said for anyone who has HS if you wish to use my images to explain the condition to your family and friends please do so. I am not shy. I am fighting for awareness and if my images contribute to that awareness then good. So here we go.
Hidradenitis Suppurativa or as we call it HS is considered a rare skin condition with no cure or dependable treatment. It can also be called Acne Inversa and Verneuil's disease. It is not acne nor is it related to acne so although family and friends try to be helpful by suggesting acne treatments they do not work on HS.
For most of us nothing works to control the disease. I wish to also make it clear that HS is not contagious.
HS affects the hair follicles causing them to plug. As a result sweat and other bodily fluids build up and form pockets of fluid under the skin. These pockets or lesions can be the size of a pea or as large as a grapefruit. They cause extreme pain and pressure often pressing on nerves. These grow larger until they burst or are lanced and drained. They tend to reform over and over again in the same areas causing a build up of scar tissue. They also tunnel under the skin often connecting different lesions. It is common for a person with HS to push on one area and have drainage appear in another.
This condition is extremely painful having been listed as one of the top 10 most painful conditions. It restricts a persons mobility, destroys their confidence and makes them hermits. The fluid that is draining often smells quite badly. People with HS tend to have multiple showers a day and yet they still feel unclean and fear people can smell them.
Many people go years without seeing a doctor because they are embarrassed. Since HS tends to affect the most intimate parts of a persons body speaking out is often difficult to do. Often when a person finally does go to a doctor they are misdiagnosed, told it's ingrown hairs, they are not clean enough. they are shaving wrong, it's acne, etc etc etc. This only contributes to making them feel worse and becoming more and more of a hermit.
The disease continues to progress and spreading to different areas of the body. Common areas for HS to develop are the underarms, bust, buttocks, groin, base of the neck. It can also develop on the back, stomach, face, top of the head and anywhere that hair follicles exist.
Current methods of treatment include years of antibiotics which may work for a little while but frequently do nothing except harm the patient with all their side effects. Accutane and other retinoids used for acne are often prescribed. Again these do very little. Since HS is possibly an autoimmune condition doctors are now prescribing humira and remicade. There has been some success with these medications but they are extremely expensive and out of the reach of the average person cost wise especially since most are disabled and unable to work by the time these drugs are needed. Also once you stop taking them the disease comes back worse and after time they do loose their effectiveness. Surgery is often used as a last resort with large areas of skin removed and either grafts used or the area allowed to heal with skin regrowing slowly. Even then the disease will return sometimes while the person is healing.
Recent studies have uncovered 3 genes involved in Familial HS. This also hints at the fact that there may be multiple types of HS. There is just not enough research being done mostly because it is not profitable for the large drug companies to do so.
People with HS become easily depressed. Don't let the doctors fool you. HS can kill. People have committed suicide from despair, having reached a point where they cannot take the pain and lack of understanding anymore. We are also highly susceptible to infections including cellulitus which can kill. lastly we face a much higher risk of some forms of skin cancer because of the damage being done to our skin. I personally know of several people with HS who have died of cancer.
Well that is as simple as I can put it. I hope you now understand. If you wish to know more about HS read the posts in this group, google HS or find a blog. The information is out there. I caution you to watch the dates of any articles you read as there is a lot of misinformation out there even being put out by the medical community.
Thank you for taking the time to read this document below I will post the graphic links which will further show you what HS is capable of. If you would like to help please reshare this document or copy and paste this link....
https://www.facebook.com/groups/hsfaces/doc/469275929828019/
Teri Kirkman
Image of HS in the armpit - https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9k21UytS6oIoB-H5Sqv8X_k-HbiE_JAuuW1t762hiMmP3alXlf2DmFngYZAtkVc2pCv3pmK_df5SLRkZrhKesPLhUWFYcgmTyi_W2RT7fwkp62ue2N-Gu8yYt-7UXebt-Hx2hos_hLup9/s1600/two.JPG
https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjt6AtHCNaUIhT-ecHb88Nofbb3g73S5o_VNoxlLKCXxfW2dtyMZ8vpjUMBkRxti9YaWxxjYxHnkZZhNdHkqMfl-RvkqUjBqKiooFQLvRzyouq7EYjg1STSLdBj0H8O-bH5rawGFBWo_48X/s1600/left+arm.JPG
HS on the breast - https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjutqCjlailt2-_6PuIwpqf9bKsfCYNqsdY-SMdzmZ1EPVlDYP_W3ZJDNhFxTuEymozuwtLY_z-vQ4IuTpbe4ogbCIZRIsgMnmisBd1EoeNNxgKxYmbwhQW2jz7vKkZrizqNQ0R6w7LUGBr/s1600/left+breast+underside.jpg
Image of HS progression in the groin area - https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXcYXsMbSQMRMO0-WZ0ZBmBNXPigaMynFd12J6DnIlwMyJC-bFzQAQGd_NjiwMyyZDchJp0_F2HyuWA9JCO_gzCZkb0oLD87fGSllD0mxZE9Qd8gvA3D-1DkGComqjG2QJACQR9Areso-F/s1600/3yrsofhs.jpg
HS on the stomach - https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwfhIwoPE1bEJeG596T-hkfmklizx8-hqfWLYXDcMu_mK4PNRBbS5EBU9NZVcN8yUv6MeV29Sg518_47rryUnyEaM_IHSAAJGl8gJjq-iZASnroEb_et3I4W4KmTA6IX1EWv80NbvxcGEL/s1600/march+021.jpg
Cellulitus - https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxyi0dmk2pXJvEsFfYA7IhlLVwnVb3IEJ3gwwefoWkzDT1oFz9PZvzDea6WP-97n0t9gQGMiaaRpFjzMBI2SAX5Bzzv8bD1T-nAgMkZVDZQNJh2Pm9YGN4pFCdbVjcG6JQq89In6FxGS63/s1600/new+017.jpg
My blog - http://tjkorri.blogspot.ca/

I woke up to a flare this morning. My entire left arm is badly swollen and this damn disease is now spreading. It's starting to wrap itself around my arm to the front of my chest. It burns badly right now but I'm just too darn stubborn to take painkillers for it. I've just gotten myself weaned off of the fentanyl patch and I really don't want to go back on them but I may have no choice.

The HS survey is complete. I'm currently in communication with a web hosting company and waiting the final written go ahead before I put my money down. They have been informed that the site may contain graphic images that others may find offensive BUT that the site is a medical awareness site. I need that written ok before I can go any further. I've been turned down twice now hopefully this will be the one.

The letter writing campaign has started to minimal involvement. About a dozen people have taken it seriously. It's a start. Next month I will write a new letter and again encourage my fellow sufferers to spread awareness. I may have to include a list of places to send the letters to.

I've got all the graphics done for the website and most of the text. Now I need stories. I'm hoping to get a few dozen people from my support groups who are willing to tell their stories. There is just so much to do and my friggen arm hurts like hell. Oh well things could be worse right?

It's been a while

It's been a while since I posted. Things are pretty much the same. I have been getting some relief from a paleo diet. My flares are further apart and do not last as long. My derm was worried about my groin so took a biopsy. I get the results in two weeks.

I got pissed during my last flare and drafted a letter for the media. I've recruited several other HS'ers and we are starting a letter writing campaign this week. We will continue letter writing on the 15th of every month until someone hears us.

I'm also working on a website called the "Faces of HS" which will tell stories of people who have HS and how it has impacted their lives. The world needs to see the human side of this disease. I'm done, fed up and feel like I'm backed into a corner so it's time to fight back.

I'll post the letter and website link here in a few days for those who are interested.

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This video needs to be seen by anyone viewing this blog.

https://www.youtube.com/watch?v=3tcqqNQa9uA

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Cellulitus again

Another bout. It's finally gone but hurt like hell.

Three years of HS in the groin area. Here is a composite of 4 images showing how the area has changed in such a short time.

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/pages/Medical-support-group-for-HS-shut-down/330937846993426

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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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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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*

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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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.

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.

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