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.