Wednesday, September 26, 2012
Tuesday, September 25, 2012
Thursday, May 12, 2011
May 12, 2011
I know I said I was going to keep a daily log of my boils and limitations. But.....I just don't feel good today and do not want to list them. Basically, I am in pain and I do not want to talk about it, think about it or do anything but lay in my bed and hope that this all goes away soon. Or, at least the immediate pain to go away as I know the HS will never go away. The pain triggers my depression, the depression trippers my reclusiveness (is that a word??) So I am in pain, I don't want to go anywhere, I do not want to do anything and I do not want to talk to anyone.
Feelings about HIDRADENITIS SUPPURATIVA
HIDRADENITIS SUPPURATIVA is not just a disease of the skin, it is a disease of the spirit. For a person with HIDRADENITIS SUPPURATIVA the emotional ramifications are three fold. First and foremost is self concept. For a person with HS, the body becomes something that is disconnected, shameful, painful, and hated. The HIDRADENITIS SUPPURATIVA sufferer feels like their own body has betrayed them and become the enemy. Secondly, the HIDRADENITIS SUPPURATIVA sufferer’s personal relationships with family, mates, and friends is severely effected. Routine housework, social activities, and career become increasingly difficult to perform without excruciating pain. We live in mortal fear that an open lesion might drain through the dressing and stain our clothes, or worse yet, someone might ‘smell’ the drainage. Multiple daily baths and strenuous hygiene does nothing to curb our fears or boost our self esteem. Intimate relationships become a nightmare. Because of the sexualized regions that are affected by HIDRADENITIS SUPPURATIVA: dating, marriage, and physical intimacy become things to be feared and avoided. How can a person who hates their own body share that body with another? The shame and pain are too great! We ask ourselves, "What will they think? How will I live with the look of disgust in my loved one’s eyes? Who would ever want a scared, broken body covered in open lesions in the exact places that are supposed to be sensual and erotic?" Finally, the most noticeable and likely result of these emotional issues is depression. Dealing with this disease and the sad lack of viable treatments IS depressing! Physically, our bodies are stressed, in pain, and continuously fighting off infection. Emotionally we are stressed, in pain, and continuously fighting off depression. It becomes very easy to isolate ourselves, hide the lesions and the pain, and simply retreat into a world of lonely agony.
Great Description of what HS is.
The non-contagious disease manifests as clusters of chronic abscesses, epidermoid cyst, sebaceous cysts, pilonidal cyst or multilocalised infections, which can be as large as baseballs or as small as a pea, that are 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. The simple procedure of incision and drainage provides some relief from severe, often debilitating, pressure pain. Flare-ups may be triggered by perspiration, hormonal changes (such as monthly cycles in women), humidity and heat, and clothing friction. Persistent lesions may lead to scarring and the formation of sinus tracts, or tunnels connecting the abscesses or infections under the skin. At this stage, complete healing is usually not possible, and progression varies from person to person, with some experiencing remission anywhere from months to years at a time, while others may worsen and require multiple surgeries in order to live comfortably. Wound dehiscence, a premature "bursting" open of a wound often complicates the healing process. Occurrences of bacterial infections and cellulitis (deep tissue inflammation) may occur at these sites. HS pain and depression can be difficult to manage.[2]
HS often goes undiagnosed for years because patients are too ashamed to speak with anyone.[2] When they do see a doctor or medical practitioner, the disease is frequently misdiagnosed or prescribed treatments are ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment. Carbon dioxide laser surgery is currently considered the last resort for those who have advanced to its highest stage, where the affected areas are excised, and the skin is grafted. Surgery doesn't always alleviate the condition, however, and can be very expensive.
HS often goes undiagnosed for years because patients are too ashamed to speak with anyone.[2] When they do see a doctor or medical practitioner, the disease is frequently misdiagnosed or prescribed treatments are ineffective, temporary and sometimes even harmful. There is no known cure nor any consistently effective treatment. Carbon dioxide laser surgery is currently considered the last resort for those who have advanced to its highest stage, where the affected areas are excised, and the skin is grafted. Surgery doesn't always alleviate the condition, however, and can be very expensive.
May 11, 2011
I currently still have the three open boils under my right armpit. They are draining throughout the day and I must wash my armpit 4-5 times a day to cut down on the smell and mess. The one under my left armpit has stopped draining. Pain level on these are a 3. Limitations: Not able to lift my right arm above shoulder level without experiencing searing pain and more drainage. Not able to wear a bra. Must wear loose fitting clothing to prevent further aggravation. Cannot do anything that requires me to sweat as this will also aggravate the boils.
The boil under my right breast has finished draining. Area still feels raw. Pain level on this is a 2. Limitations: Not able to wear a bra. Must wear loose fitting clothing.
The boil on top of right leg is still growing and has not came to a head yet. This is very sensitive to the touch and is causing stabbing, searing pains. Pain level on this is a 6. Limitations: Cannot sit for more than a few minutes without having to stand up and alleviate pressure to the area. Must wear loose fitting clothing so that nothing rubs and aggravates the boil.
I have also developed a new boil on my right labia. This is sensitive to the touch and requires me to be very cautious when wiping after using the restroom. Switched to diaper wipes as they do not aggravate the area as bad. Pain level on this one is a 5. Limitations: Must frequently move when sitting to alleviate pressure. Cannot walk more than a 20-30 feet without the rubbing becoming stabbing pain. Cannot wear undergarments. Must wear loose fitting clothing. Laying down causes the least amount of pain. Sexual activity will cease until boil has healed usually 5-7 days.
The boil under my right breast has finished draining. Area still feels raw. Pain level on this is a 2. Limitations: Not able to wear a bra. Must wear loose fitting clothing.
The boil on top of right leg is still growing and has not came to a head yet. This is very sensitive to the touch and is causing stabbing, searing pains. Pain level on this is a 6. Limitations: Cannot sit for more than a few minutes without having to stand up and alleviate pressure to the area. Must wear loose fitting clothing so that nothing rubs and aggravates the boil.
I have also developed a new boil on my right labia. This is sensitive to the touch and requires me to be very cautious when wiping after using the restroom. Switched to diaper wipes as they do not aggravate the area as bad. Pain level on this one is a 5. Limitations: Must frequently move when sitting to alleviate pressure. Cannot walk more than a 20-30 feet without the rubbing becoming stabbing pain. Cannot wear undergarments. Must wear loose fitting clothing. Laying down causes the least amount of pain. Sexual activity will cease until boil has healed usually 5-7 days.
Tuesday, May 10, 2011
DIsability and HS
Received paperwork today to be completed for SSA Disability. A packet of about 50 pages, where I am to describe my condition and how it effects my ability to do things. I wish I could accurately describe what it is like to have HS. To describe that every aspect of your life is affected in some way. But, the hardest part is describing that not everyday is the same. What I am able to do today, I may not be able to do tomorrow. Today, I may be able to lift my arm above my head, but tomorrow, when a fresh boil has started, or an old monster has resurfaced, I cannot get my arm above shoulder level.
So do I describe myself - at my worst or at my best???
So, I believe I will start a daily journal of what my life is like that day. What part of my life is affected and what today's limitations may be.
May 10, 2011
I currently have an 3 open boils in my right armpit. They are draining throughout the day, and I must wash my armpit 4-5 times a day to cut down on the smell and mess. I also have one active boil under my left arm. This one is also draining and requires frequent washings. Pain level on these are a 4. Limitations: Not able to lift my arm above my head as this causes the boil to drain even more. Not able to wear a bra that rubs and aggravates the boils. Not able to do anything that requires me to sweat as this will also further aggravate the boils. Must wear loose fitting clothing so nothing rubs or constricts my armpits. Cannot shave.
I currently have a boil under my right breast that popped (came to a head and drained) yesterday. Pain level on this one is a 3. Area feels raw but does not limit my functioning. Limitations: Not able to wear a bra, no tight clothing.
I have a new boil developing at the top of my right thigh. This one is just starting, so it is very sore and causes stabbing pains. This will continue until the boil "pops". Pain level on this one is a 5. Limitations: must be very careful on how I sit down as to not put pressure on the area. Cannot sit for more that 10 mins, most move to alleviate pressure. Must wear loose fitting clothing that does not rub in anyway.
So do I describe myself - at my worst or at my best???
So, I believe I will start a daily journal of what my life is like that day. What part of my life is affected and what today's limitations may be.
May 10, 2011
I currently have an 3 open boils in my right armpit. They are draining throughout the day, and I must wash my armpit 4-5 times a day to cut down on the smell and mess. I also have one active boil under my left arm. This one is also draining and requires frequent washings. Pain level on these are a 4. Limitations: Not able to lift my arm above my head as this causes the boil to drain even more. Not able to wear a bra that rubs and aggravates the boils. Not able to do anything that requires me to sweat as this will also further aggravate the boils. Must wear loose fitting clothing so nothing rubs or constricts my armpits. Cannot shave.
I currently have a boil under my right breast that popped (came to a head and drained) yesterday. Pain level on this one is a 3. Area feels raw but does not limit my functioning. Limitations: Not able to wear a bra, no tight clothing.
I have a new boil developing at the top of my right thigh. This one is just starting, so it is very sore and causes stabbing pains. This will continue until the boil "pops". Pain level on this one is a 5. Limitations: must be very careful on how I sit down as to not put pressure on the area. Cannot sit for more that 10 mins, most move to alleviate pressure. Must wear loose fitting clothing that does not rub in anyway.
Tuesday, March 22, 2011
March 22, 2011 - Spring
Spring is officially here. It is currently 61 degrees.
This is a time of year when most people celebrate and look forward to the warming weather. I on the other hand can only moan and dread what lies ahead for the next 6 months or more.
Living with HS affects all areas of your life, including how you react to the weather. Warm/hot weather to me is HELL! While I do love warm weather, HS does not. And HS always wins! HS cares not want I want or what I would like to do or wear, HS is the most selfish beast!
I cannot dress in cute tank tops or sleeveless shirts, no summer dresses for me. I must remain covered to hide the boils that are constantly draining, the scarring that is hideous to look at and to minimize skin friction that causes even more boils. When I sweat more boils develop - so begins an endless cycle in the spring/summer of trying to stay cool, but enjoy the weather.
What a wonderful world it would be to be normal and enjoy summer.
This is a time of year when most people celebrate and look forward to the warming weather. I on the other hand can only moan and dread what lies ahead for the next 6 months or more.
Living with HS affects all areas of your life, including how you react to the weather. Warm/hot weather to me is HELL! While I do love warm weather, HS does not. And HS always wins! HS cares not want I want or what I would like to do or wear, HS is the most selfish beast!
I cannot dress in cute tank tops or sleeveless shirts, no summer dresses for me. I must remain covered to hide the boils that are constantly draining, the scarring that is hideous to look at and to minimize skin friction that causes even more boils. When I sweat more boils develop - so begins an endless cycle in the spring/summer of trying to stay cool, but enjoy the weather.
What a wonderful world it would be to be normal and enjoy summer.
Saturday, March 19, 2011
March 19, 2011 - Background
Living with HS (http://en.wikipedia.org/wiki/Hidradenitis_suppurativa) has become a living hell. There is not a day that goes by in my life that is not in some way affected by this disorder. Simple things that most people take for granted are not always so easy for me. Enjoying life is not easy for me.............. What enjoyment is there in being in pain everyday, and worse yet, knowing that there is no cure and will most likely never get better.
I first noticed signs of HS when I was a teenager. Of course, I had no idea what it was and hid it for years from everyone. My mother is the type that you did not talk about certain things or body parts - no matter what. I was actually 40 years old before I told my mother about it. That's 26 years of hidden pain. I remember thinking is everyone like this?? Do other people's thighs look like this?? Is there something I am doing wrong?? Do I not keep myself clean enough? A thousand questions and no answers or anyone to discuss it with. And so began my self-medicating and trial and error period.
During this time I tried every acne medicine, cleaner, scrub etc, that hit the market, hoping something would work. I tried peroxide, witch hazel, rubbing alcohol, bleach everything imaginable, all to no avail. I showered 2 and 3 times a day, thinking it was a hygiene issue. Nothing worked.......
The older I became the worse the HS got. At the age of 26, I became pregnant with my son. My ob-gyn did a physical exam and diagnosed me with venereal warts because of the numerous bumps, warts as he called them. I argued with him that it was not possible as I could squeeze them and get discharge to come out and that was not the case with warts. Of course, he was the Doctor and knew more than me. He than wanted to perform laser surgery to remove the "warts". We agreed that it would be done after I gave birth. Needless to say I never returned to have it done.
The next Doctor that performed a Pap Smear on me, stated that I needed to keep myself cleaner and to use over the counter acne medicine. How much cleaner?? I was already taking 3 showers a day. I then began my regimen of washing my pubic area and thighs every time I went to the bathroom. 6-10 times a day. Again, all to no avail.
After that instance I began avoiding go to the Doctor's. I hated the way they looked at me. The mis- diagnoises, the inability to get anyone to help.
After my HS had spread to numerous other places on my body. My thighs, labia, breasts, underarms, my stomach where my pants rubbed and buttocks, I began researching on the internet for what the hell this could possibly be. That's when I finally discovered a name for what I had been suffering with for over 20 years. HS!! HS!! Hidradenitis suppurativa. Finally, someone other than me had this, someone else could identify with the hell I had been living. I cried tears of joy at the relief that it was not me, not something that I was doing wrong, not a hygiene issue. I cried that others were suffering too. I cried at the pictures of others that had endured more years and more pain than myself.
I then printed the information I found and took it with me to see my doctor, Selena Roberts, the most compassionate doctor anyone could hope for. As soon as she looked at the information and then at my lesions she diagnosed me with HS. I was the first case she had ever encountered and was not sure how to treat it. She began researching for information as well as myself. We tried a course of antibiotics that lasted for over a year, but to no avail. I then began a course of Turmeric, that I took for over 6 mos, again to no avail.
We, Selena and myself, have admitted defeat and I am now being sent to a Dermatologist.
Fingers crossed and many prayers that he may have an answer.
I first noticed signs of HS when I was a teenager. Of course, I had no idea what it was and hid it for years from everyone. My mother is the type that you did not talk about certain things or body parts - no matter what. I was actually 40 years old before I told my mother about it. That's 26 years of hidden pain. I remember thinking is everyone like this?? Do other people's thighs look like this?? Is there something I am doing wrong?? Do I not keep myself clean enough? A thousand questions and no answers or anyone to discuss it with. And so began my self-medicating and trial and error period.
During this time I tried every acne medicine, cleaner, scrub etc, that hit the market, hoping something would work. I tried peroxide, witch hazel, rubbing alcohol, bleach everything imaginable, all to no avail. I showered 2 and 3 times a day, thinking it was a hygiene issue. Nothing worked.......
The older I became the worse the HS got. At the age of 26, I became pregnant with my son. My ob-gyn did a physical exam and diagnosed me with venereal warts because of the numerous bumps, warts as he called them. I argued with him that it was not possible as I could squeeze them and get discharge to come out and that was not the case with warts. Of course, he was the Doctor and knew more than me. He than wanted to perform laser surgery to remove the "warts". We agreed that it would be done after I gave birth. Needless to say I never returned to have it done.
The next Doctor that performed a Pap Smear on me, stated that I needed to keep myself cleaner and to use over the counter acne medicine. How much cleaner?? I was already taking 3 showers a day. I then began my regimen of washing my pubic area and thighs every time I went to the bathroom. 6-10 times a day. Again, all to no avail.
After that instance I began avoiding go to the Doctor's. I hated the way they looked at me. The mis- diagnoises, the inability to get anyone to help.
After my HS had spread to numerous other places on my body. My thighs, labia, breasts, underarms, my stomach where my pants rubbed and buttocks, I began researching on the internet for what the hell this could possibly be. That's when I finally discovered a name for what I had been suffering with for over 20 years. HS!! HS!! Hidradenitis suppurativa. Finally, someone other than me had this, someone else could identify with the hell I had been living. I cried tears of joy at the relief that it was not me, not something that I was doing wrong, not a hygiene issue. I cried that others were suffering too. I cried at the pictures of others that had endured more years and more pain than myself.
I then printed the information I found and took it with me to see my doctor, Selena Roberts, the most compassionate doctor anyone could hope for. As soon as she looked at the information and then at my lesions she diagnosed me with HS. I was the first case she had ever encountered and was not sure how to treat it. She began researching for information as well as myself. We tried a course of antibiotics that lasted for over a year, but to no avail. I then began a course of Turmeric, that I took for over 6 mos, again to no avail.
We, Selena and myself, have admitted defeat and I am now being sent to a Dermatologist.
Fingers crossed and many prayers that he may have an answer.
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