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.

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.

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.