pain level today...

..about a 6 today. I started back on Tramadol at noon, 2 tabs every 6 hours is the plan.

We leave on our Carribean cruise tomorrow.

text from an email I sent to family and close friends

I sent this email mid February of this year when I was in a lot of pain.

"I have been diagnosed with a medical condition called Livedoid Vasculopathy. It is a chronic vascular disorder that I have been living with for about 5 years now. The symptoms that most affect me are painful recurring ulcers mostly in my ankles and a seemingly related painful neuropathy of the skin of my feet and ankles that feels like a very bad sunburn without the hot feeling, just the stinging. The symptoms come and go to a certain extent, but lately the symptoms (especially the pain) have been worse than they ever have been. It makes it hard to wear shoes or stand at times. As far as I have been informed, this condition is uncommon, permanent, not communicable but progressive. There is no known cause or cure at this point.

"As someone raised in MN by a Norwegian father, it is not in my nature to broadcast my personal life or problems. I decided that this year, it might be beneficial to share this information to the people close to me. Not to illicit pity or concern, but just to share a piece of my life that I consider very private and to explain some of my behavior.

"I am continuing with my own education about this condition and its varied treatments."

Notes from vist to Mayo Clinic 8/04

These images didn't post in order, I don't know why. But here are the notes and test results from my day long visit to the Mayo Clinic in Rochester, MN.

Pics from 3/28/06

Pics from 3/13/06

Pics from 3/5/06

Now that I have figured out how to upload images, I will upload the pics I took on 3/5/06. Future photos will follow. My current goal is is upload weekly photos to track the progress.

New break out

I was hoping that since my last break out healed a few weeks ago, I wouldn't have another one for a while. I noticed a deep purple area a couple days ago about .5 cm in diameter on the interior of my right ankle. I am writing today because I notice the pain now, about a 4 on the scale of 1-10.

I am currently taking these medications:
ASA 325 mg, 1 daily
Foltx tab, 1 daily
Pentoxifylline 400 mg, TID
Gabapentin (Neurontin) 400mg, TID

I have taken Tramadol 375.5/325, 2 tab every 6 hours for pain in the past, though discontinued about 3 weeks ago when the pain subsided. I also discontinued Dipridamole 75mg, TID due to elevated liver function. We plan on starting a new steroid as soon as my liver function returns to normal.

We are leaving for spring break on a Caribbean cruise this Friday. I am hopeful it won't impact my trip.

Beginning thoughts

I intend on using this blog to record my thoughts as I go through my journey with my condition which has been diagnosed as Livedoid Vasculopthy. I have lived with this condition for approximately 5 years at this point. I will be posting links to other related websites and hopefully pictures so I (and others) can track my progression.

I welcome comments from readers.