More pain today and everyday!!

I woke up in pain yet again today and again started crying in the bathroom as I am trying to clean my wound up.  It's been 2 months now and this darn HS won't go away and it's taking it's toll on me.

I feel so alone, ashamed, embarrassed, worthless and so much more.  But then I begin to think about all the other folks that are worse off then me in HS and every other horrible disease/disorder out there and I begin to think again how fortunate I truly am and that things could be worse.  But in truth my HS can't get any worse in my left armpit since it is already at the final stage 3 of the disorder.

When I woke up thought I turned on the TV and heard the most beautiful voice and song and I think I will adopt it as my HS anthem song of sorts lol.  It was Emeli Sande and the song was Next to me.  God please stay next to me and help give me the strength to make it through this trying time in my life.  Take a listen, I guarantee you will LOVE it!




Then I was on one of the medical forums and came across a poem by an HS sufferer and it hits you to the core if you are also an HS sufferer, see below and thank you Steve for being so brave and sharing it with us!

Heal Me 

God I need a touch from you healing hand. 

My trust is in you and not on man. 

I am suffering each and every day! 

With a disease that will not go way. 

Doctor after Doctor they have no clue. 

Not one them knows just what to do. 

I have tried and tried to figure this out. 

As to what this disease is all about. 

I searched and searched for something that will help to relieve. 

Now it is time that I start to believe. 

I must study your word and pray with all my might. 

That you will take over this terrible fight. 

I know you will guide my steps that I take. 

And will help me with all the decisions I make. 

I know there is a reason for what I’m going through. 

Maybe others are watching to see what I will do. 

So give me the wisdom and strength that I need. 

And help me to follow where ever you lead. 

This is my request that I’m asking from you. 

Help me dear Lord to see this through. 

By Steve Gray 

5/24/2012

Oh happy day, I may have found a new doctor!

As I had mentioned in my last post, I was feeling pretty lost and apprehensive about rather or not to have the radical wide excersion surgery until my wonderful mother-in-law found Tracy's awesome blog, Overcoming Hidradenitis Suppurativa (HS).  In her blog she describes how her recovery went from days, weeks, and years after her armpit surgery.  I HIGHLY recommend you give it a read if you are now at stage 3 of HS and in need of the surgery.  

I did not want the surgery mainly because the surgeon let me know 5 years ago that the surgery is very radical and not taken lightly therefore not recommended until the HS patient is in stage 3 and I have a low tolerance to pain.  But what scared me the most was the unknown.  There was so many questions I had forgotten to ask the surgeon.  I already knew the surgery was not a guarantee that I would never get HS again in that area  or any other area but what was the stats on relapses, what do I expect after surgery, what would  final outcome look like under my armpits, and many more as you can imagine.  I can honestly say after reading Tracy's blog I am now more hopeful and ready to move forward with the surgery.  In her blog Tracy recommends finding a plastic surgeon familiar with HS because a general surgeon is only interested in cutting out the infection but a plastic surgeon also cares about what the final outcome will look like.  She said to call every plastic surgeon around and ask the if they are familiar with HS and don't get discouraged because a lot of the will not even know how to spell HS let alone what it actual is.  My general surgeon already informed me that he does not perform the skin grafts nor did he work with the hospital plastic surgeon dept to perform them.  I already didn't care for this surgeon from my first visit with him 5 years ago when he couldn't even give me 5 minutes once he looked at my left armpit and told me I was not a surgery candidate yet another reason why I didn't want the surgery so began my search.  

I am SO EXCITED because I found another doctor who specializes in dermatology and works with the staff of plastic surgeons at the hospital he is associated with!! So I call and after a 15 minute call with a receptionist I believe, I was told a representative would call me back shortly and during one of my times of being on hold I heard you could also set an appointment online so for extra precaution, I also did that lol.  And I anxiously awaited for the next day to come and then I anxiously awaited for the call to come and around 11 am-ish I decided to get in the shower and wouldn't you know it, they called.  So I call them back and after another 15 minute wait I got an appointment for March 7th and I can't wait to see this doctor.  Wish me luck and lots of prayers that this will be my man :-)

Hello and welcome to my tale of HS - Hidradenitis Suppurativa

Hello and welcome to my tale of HS - Hidradenitis Suppurativa

My name is Robyn and I am 43 years old and was diagnosed with HS when I was 21 years old and this is my tale of living with HS.

I was luckier than most in sense only because my general doctor knew right away what I had.  He knew about HS but didn't have much experience with it.  So he put me on the normal antibiotics and they worked wonders for about 6 years until my body became immune to them.  But I was also luckier than most that I was not really inflected much in my younger years.  Nor have I been inflected in the groin, thigh or breast areas.  And up until I reached 40 years old, I had minor breakouts and I was able to manage them as well as the pain to still live a normal productive life.  But my HS has become unbearable as I hit my 40's and has been running rampant on my armpits but mainly my left armpit.  My latest bout with HS has been the worse I have ever experienced and the longest.  I have been inflected for 2 months now with a very bad outbreak under my left armpit.  I went to my general physician after my outbreak not coming to a head to drain in over a week and as usual for the last 10 years, she drained it and as usual I leave the doctor’s office in tears and shaken to the core from the shear pain.  I feel so bad for my poor doctor who doesn't like having to do this to me anymore then I like having it done and she just keeps apologizing to me.  So know she sends me off to the same surgeon I met 5 years earlier to see if I am a candidate for the radical wide excision surgery and I am not nervous at all and thinking it's the same old same old routine I have done over and over the last 20 years  but shit!  I am now at Stage 3 of HS and a radical wide excisional surgery candidate!  WTF HS!!  So I leave the surgeons office in tears and sheer panic as well as scarred more than I have ever been in my life.  

After about a day and the initial shock wore off and I my husband is off to work, I am alone and confusion, anger, depression and so many other emotions stirred up inside of me and I began to weep hysterically.  Then I pulled up my big girl panties and wanted to know more before I decided on having this RADICAL surgery.  That is why I have finally decided to come out of the closet with my HS and why I have decided to write my blog in hopes to help other's whom are inflected with this horribly painful and embarrassing disease.  When I researched the internet for answers to my many questions that I forgot to ask the doctor, out of sheer panic.  As well as statistics or what to expect the weeks and years after the surgery, I couldn't find out much on the surgery other than some pretty gross images online that set me into hysterics again.  Then one day after feeling hopeless which one with HS feels a lot, my wonderful mother-in-law came across Tracy's blog; Overcoming Hidradenitis Suppurativa (HS) and in Tracy's blog she gave a wonderful explanation of what to expect for the day, weeks, and years after the surgery and now I feel I am ready to move forward with the surgery.

I don't want to assume because you are reading this blog that you know all about HS so that is why I am going to give a little background on HS before signing off this post.  The non-contagious disease manifests as clusters of chronic abscesses, epidermoid cysts, sebaceous cysts, pilonidal cyst or multilocalised infections, which can be as large as baseballs or as small as a pea. It can also start as a single abscess and once it pops, can make tracts of many more abscesses. These cysts can be extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in incision and drainage of pus, often leaving open wounds that will not heal. For unknown reasons, people with Hidradenitis develop plugging or clogging of their apocrine glands.  HS causes chronic scarring and pus formation of the underarms (axilla) and groin/inner thigh areas. The simple procedure of incision and drainage provides some relief from severe, often debilitating, pressure and pain. [1]  Scientists say a variety of genetic and environmental factors cause HS [2] and there is three stages to HS with varying treatments.  HS can also lead to depression, cancer, arthritis, restricted limb mobility from scarring, local or systemic infection resulting from the spread of microorganisms and so on.  

Most physician are unaware of HS and most of the time is miss diagnosed and coupled with the "shame" and "embarrassment" factor of this disorder keeping most persons inflected with HS from going to see a doctor there has been very little research on HS which has caused HS to be labeled a rare disorder when in fact according to Hidradenitis Suppurativa Foundation, Inc., HS appears to indiscriminately affect the global population, and can be found in many countries, affecting many different cultures.[3]  And in the US it is estimated that approximately one in every 100 people lives with HS.[4] It all comes down to money in the end because the government and drug companies won't give you research monies unless they can make their money and since the inflected stats are so low, no monies for research.  Not to mention I just found out that private practice doctors lose money on helping an HS patient because the medical insurance companies don't cover all the is involved in the radical surgery procedure so that doesn't help the cause either.  

So if my coming out of the closet with my HS helps just one person who is going through what I am, or someone who loves as HS patient or raises more HS awareness for research, then it will be worth it.

References:

[1] From Wikipedia, the free encyclopedia, Hidradenitis suppurativa
[2] & [4] Discovery Fit & Health; Hidradenitis Suppurativa Explained
[3] HSF: Hidradenitis Suppurativa Foundation, Inc. The Prevalence of HS