Tuesday, April 1, 2014

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.



Thursday, November 21, 2013

Time to be hacked up

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.


Monday, November 4, 2013

Sunday, September 1, 2013

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

Sunday, August 11, 2013

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"


Friday, May 17, 2013

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....
Teri Kirkman
Image of HS in the armpit - http://4.bp.blogspot.com/-VvMr_CP1ti0/UU9xnMRVJ6I/AAAAAAAAISA/pkpMwJie3KI/s1600/two.JPG
HS on the breast - http://3.bp.blogspot.com/-TX3dofdpJGo/TcnRT-a59JI/AAAAAAAAHTI/xjpmUDpnnI8/s1600/left+breast+underside.jpg
Image of HS progression in the groin area - http://2.bp.blogspot.com/-0RfuaEaw_2I/UB8NgItMxlI/AAAAAAAAH1s/Deum5FUypPI/s1600/3yrsofhs.jpg
HS on the stomach - http://4.bp.blogspot.com/-vvY2VyH17r0/TcnRVNHfR8I/AAAAAAAAHTU/1oA8iAzfHWs/s1600/march+021.jpg
Cellulitus - http://4.bp.blogspot.com/-CGX17-6mkJs/TcnRV22XVZI/AAAAAAAAHTc/XQXPNxf6v0U/s1600/new+017.jpg
My blog http://tjkorri.blogspot.ca/

Sunday, March 24, 2013

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?