2 new ulcers and a dream

My pain level has ranged from a 3 to a 7 lately.

I developed 2 new ulcers on the top of my left foot today. I am sad and aggravated. I am resisting what seems inevitable.

This winter has given us a smooth clear freeze on the lakes with no snow so far. Perfect for ice skating. Today I went out on the ice taking out a very large quad line (steerable) kite that I made a few years ago. I put on my ice skates and set up the kite. The wind was marginable but at times was strong enough to lift the kite airborne and pulled me for an incredibly exhilarating ride across the lake. This is something I have been dreaming about doing for years. I realized today that this may be the only chance I will ever have. It's rare that winter gives us such a nice clear freeze. And even if it does happen again, I may not be able to withstand the pain enough to enjoy it. I was out there about an hour and a half as the pain grew worse and worse. But I am glad I did it. I fulfilled a dream.

Notes

I continue to experience this new pain sensation from a month ago. It is in both ankles now and feels how I imagine athritis feels. More of an ache and soreness in the joint radiating in from the top of the ankle.

My pain level has been pretty steady around 3-4 for the last couple weeks even with this new pain.

I developed a new ulcer on my left shin about 10 cm above my ankle bone yesterday. I will post pictures shortly. I shaved the area to minimize the risk of infection and also so I can use the Duoderm dressing which is self adhesive.

Because it is further up my leg than any ulcer I have had in the past, I believe it is a another sign that my condition continues to progress. The ulcer on the interior of my right ankle has not fully healed yet.

I reviewed pictures from the past and noticed that the skin on my right shin where I had the "kicked in the shin" pain earlier has now developed purple discolored patches similar to those near my ankles.

I finished my last weekly session of 10 in a class called "Living with Pain" run by the MAPS pain clinic. It was a class with 8 people who all have chronic pain and lead by a psychologist. In the class we talked about the experience of pain in general, our personal experience and how outside factors can alter the pain experience. We talked about different ways to manage pain, different medical procedures, relaxation, medication and others. I found the class somewhat useful though nothing presented was really altogether revealing for me. Most of the information was fairly general in nature.

Pain level

My pain level was a 6 when I got up today. The pain radiated from the ulcer on my right ankle and from the top of my right ankle. There is no visible indication of the reason for the pain there.

I am able to get the pain level to a 4 with the Tramadol and Neurontin.

notes and pics from 11-4-06

I haven't been on in a while mostly due to lack of changes. For a while my pain level was low and there were no changes to my condition.

That changed roughly 3-4 weeks ago. My pain level increased to a 4, I had a feeling like I had been kicked in the right shin. No visible marks, just the pain. I shaved that area to look for changes in the coming days or weeks. I didn't notice anything. after a week or so that pain disappeared.

About 1-2 weeks ago my ulcers reappeared. As you can see from these pictures I took on 10/30, I have numerous smaller ulcers on the interior of my left ankle and another slightly larger (.7 cm diameter) on the interior of my right ankle. My pain level currently is a 5 and has recently been as high as 6. Continuing to stay on my meds has been problematic but with the renewed pain level increase, I will have a constant reminder.

I will try and update this blog more often now to note any physical changes.

notes from 9-20-06

I have heard from some that you noticed I haven't blogged in more than a few weeks.

My pain level is down to a 2 or so throughout most of the day for the last few weeks. I continue to experience neuropathy on the tops of both feet. It's more annoying than painful these days.

I struggle with staying on top of taking my meds. I have to remember to take dosages at 5 times throughout the day and it's not somethign I enjoy. I now renew my efforts to stay up on them.

I started a 10 session class called "Living with Pain". It meets weekly with 8 people that experience chronic pain. I am hoping it's a good support group.

notes from 8-1-06

My pain continues about the same as it has for the last few weeks, about a 3 all day. The neuropathy continues across the top of both feet.

pain level 7-11-06

My pain level today is a 3 now. It has come down as the ulcer on my right ankle continues to heal.

I still have tingling across the tops of both feet, though it is not as noticeable as it has been in the past.

I have noticed about some smaller (.2 cm in diameter) ulcers that have appeared over the last few days on the interior of both ankles, 4 per ankle. They don't hurt, and have scabbed over. If they get painful I will cover with the Duoderm dressing to speed up healing and keep the wound area soft and moist.

Pain level today and last night and ulcer pic

Last night I changed my DuoDerm dressing and my pain level from my ulcer was an 8. It was an 8 when I awoke this morning and after the Tramadol took effect it came down to a 7. I have it elevated a little while I work today to help ease the pain.

recent pain level

My recent pain level has been a 6 when I wake up and get ready in the morning. It radiates from the new ulcer on the right ankle and shoots up the inside of my calf up to my knee. About an hour after I take me morning meds it is about a 3 for the rest of the day.

Yesterday I forgot to take my Tramadol at 8pm and didn't take it until 9:30. My pain came right back up to a 6.

new ulcer

As I suspected, the area on the interior of my upper right ankle has developed into an ulcer. I will cover with DuoDerm dressing tonight or tomorrow morning when I can shave the hair from the surrounding area.

Pain level is a 4 today when I awoke, and is fairly constant. As I blog now, it is a unceasing reminder of my condition.

Tramadol (37.5/325) 1 tablet TID, Neurontin (Gabapentin) 6oo mg QID.

how public is this blog?

I have been asked whether people can share this blog with others and/or give out the blog web address. Please do. Not only do you have my permission but my hearty encourgement.

I hope that through networking and continued readership, someone will know someone that can use the information in a positive way or somehow steer me in a direction that will aid me or others with similar symptoms.

It also helps me in my continued healing to feel the warmth and caring of regular readers who let me know I am in their thoughts and prayers.

pain level on 6-19-06 am and support hose

This morning waking up my pain level was at a 6 which is higher than normal lately. The pain radiated from the outer edge of my right foot. It was a topical pain like a rub burn or abrasion.

It's now about 2:30 pm and the pain level is back down to a 2.

I started back to wearing my support hose. I will try and wear them as long as I know I will be inside sitting, that is, at my desk at work. Should be at least 35 hours per week.

notes from 6-17-06 on possible new ulcers

If I remember correctly, the last time I had ulcers, they started with little bumps or nodules under the skin that I could feel. They felt like a ball about .3 cm in diameter about .5 cm under the skin surface.

I have another bump or nodule now on the interior of my left ankle just behind the bone. It is in a skin area that has been brown for years. This nodule is not painful to the touch. I also notice new reddish skin patches on both the left and right ankles and shins. They are smaller patches, about .5 cm in diameter, approximately 10 per side.

I also have another nodule about the same size on the interior of my right ankle. This one is closer to the surface and appears about to surface and ulcerate on the skin suface. I will try and get pictures of these areas uploaded here in the next couple days. The ulcer on my right ankle is painful to the touch and is marked by a red spot on the skin surface about .7 cm in diameter.

I haven't noticed any changes to my forearms, hands or chest.

notes from 6-17-06 on new meds and dosages

After my inpatient stay and after being seen at the MAPS pain clinic my meds and dosages have changed. My med dosages are now:

Neurontin 600mg QID (up from 400mg TID)
Pentoxyfylline 400mg TID
ASA 325mg 1 per day
Foltx 1 per day (folic acid, B6 and B12 supplement)
Tramadol 37.5/325 1 tab TID
Remeron 15mg QHS (this is new, used as a sleep aid and as a anti-depressant)

I now set alarms throughout the day to help me keep track of when to take my meds. That, for me, is a statement about how much a part of my life meds are. They keep my time on a more strict or rigid schedule. I have accepted it but still don't like it.

notes from 6-17-06 after Black Monday

I haven't blogged in a while. My life has completely turned upside down recently.

On Monday June 5, I was admitted to North Memorial Hospital in the Critical Care Unit for severe depression and suicidal thoughts. I had made a phone call to a suicide prevention hot line. While I don't believe that there is necessarily a cause/effect relationship, and though it was not the only one, I can tell you that my pain from LV and related issues was a large contributing factor to my thoughts and actions last Monday night.

I still have physical pain now. I anticipate having pain on the future. I was seen earlier this week at the MAPS pain clinic for pain management. I need now to learn how to manage my pain. I need now to be healthy in that area.

I feel very loved and supported now. Thank you all for you thoughts and prayers. I am sorry I put you through whatever it is that you are going through in my regard. I know it was a surprise for you. I can't say it wasn't a surprise for me. Not my thoughts, but my actions.

The Critical Care Unit was where I needed to be last week. I have a plan for managing my depression now. I didn't then. I have support and am utilizing it now.

If you ask, I will tell you I am much better. And that is true. I also have a long way to go. Thank you for your understanding.

I am now living with my mom and dad in the house in which I lived as a child. In some ways it's like growing up all over again. I feel like I have so much healing to do. I don't know what to say about my marriage. My wife Jenn has moved on mentally and emotionally. I feel like that rug has been pulled out from under me. My two daughters 16 and 10 are suffering. My oldest has been diagnosed with depression and anorexia. I know she is bulemic as well. She and I have been closer recently than ever before. We communicate all through the day every day now. We are trying to get help for her to get her eating under control and get her emotionally and mentally healthy. It's my belief that her eating is all about control for her. She needs more control of her life and her eating she can control. I am doing what I can do get her the help for which she cries out.

In some ways I am more in control of my life than I have ever been before. I make my decisions about what I do and where I am going. I am scared a lot of the time. But I feel like I am making progress. I am mature now. I am not the little boy that grew up in this house.

Medical insurance coverage is on my mind constantly. How much will all this medical and psychological care cost. I know I have a $3000 maximum out of pocket and I guess I should plan on that for now. Where that will come from I don't know. That is a large stresser for me.

The statements Jenn makes about moving on are very sad for me. I am not ready to give up on what we have spent years building. But I am looking at what I have and what I want. My thoughts and plans are day by day right now. which is up from hour by hour, where I was a week ago. I am making progress. But a long road ahead...

Just wanted you all to know where I am mentally today. I will be blogging about the facts of my condition and meds (which have both changed) separately.

pics from 5-22-06 and some notes on medications and numbness

I notice that the numb patch on my left foot has moved further down toward my toes. It is kind of across the tarsals, more noticeable on the outside of my foot down near the sole. I think it is not as intense as in the recent past.

The pain is manageable on one tablet TID of Tramadol. I reduced the dosage about 2 weeks ago.
Last weekend I tried going without Tramadol. The pain was bad enough that I went back on after 2 days. I wonder if my body needs it now, or whether the pain is just that bad. Is my body addicted? I don't know. I don't feel psychologically addicted, but would I? Does an addict know they are addicted? Or is it only afterwards that they know they were? Any readers have any insight on this?

pic from 5-15-06

pic from 5/2 and comments on new neuropathy, also med dosages

Here is a picture showing the progress of the ulcer. It has completely scarred over at this point so I have stopped using the DuoDerm dressing.

The other picture is of an area that has gone completely numb on the skin surface. The area affected is about 4 cm wide and extends across the top of my left foot near my leg from the inner ankle bone protrusion to the outer. If I press on it, I can feel pressure, but nothing on the surface at all. It is not painful or tingly, just numb to the touch. I first noticed it about a week ago. It hasn't changed since then. When I first noticed it, the skin looked slightly pale or whitish and it still does. Hardly visibly noticeable and didn't show up very well in the picture here.

I continue taking Neurontin 400mg TID, Pentoxyfiline (?mg) TID, ASA 1 per day, Foltx 1 per day and Tramadol 2 tabs TID. I will try backing off Tramadol to 1 tab TID day starting tomorrow. I also continue wearing my support stockings most of the time I am not asleep, maybe 12 hours per day.

pic from 4/23

Here is a picture showing the progress of the ulcer on the right interior ankle

other affected areas

Here are some pictures of other areas that are affected. It's difficult to see on the pictures due to the decreased contrast. It has been more obvious during winter months when the surrounding skin is pale from the effects of Minnesota winter.

I wanted to post these pictures as a base line.

pics from 4/16/06

The ulcer on the interior of my right ankle continues to heal, albeit slowly.

The roughly rectangular area surrounding the wound is due to the Duoderm dressing that had been recently removed within an hour prior to the taking of picture.

Thoughts about being embarrassed

I am, at times, embarrassed about how my legs and feet look. Also about the appearance of the supprt stockings I was prescribed. Most of the time nobody can see the purple staining or the stockings, but in the summer, when I wear shorts and sandals, people can see my feet, ankles and legs.

A couple weeks ago, I wore my stockings (knee highs) to softball practice where I coach my 10 year old daughter. One of her teammates looked at my legs and "stared". Well stared was my interpretation. I was embarrassed.

I did enter the "International Male Sexy Legs Contest" on our Carribean cruise, where I got the opportunity to model my legs to a few hundred people on board and be closely inspected by the 5 female judges to determine my legs "sexiness". It was all in fun of course. Though I did take home one of the five medals given out. Even if it was in the "hairiest legs" category and not the "overall sexiest legs", I did wear the medal proudly for about a half hour on the ship deck. Embarrassment was not a factor here.

I decided before I left, that I wasn't going to bring and wear my sockings on the cruise. Partially that was due to my embarrassment.

thoughts on addiction

I have wondered since I starting taking Tramadol about addiction. I am concerned about it. I have read that Tramadol can be "habit forming".

I would guess that for addiction to occur, there would have to be a "high" or some sort of psychological effect of the medication. I don't feel anything like that. In fact, except for the decreased pain level, I wouldn't really know I am taking it.

I have heard or read somewhere that some aspects of addiction are: lying about your use to yourself and/or others and planning your activities around your use, even to the extent of avoiding normal activities. I don't exhibit those symptoms.

pictures and progress 4/12/06

These are pictures I took last night. The ulcer on the interior of my right ankle continues to be painful. I am using Duoderm wound dressing to cover it which I leave on 4-5 days at a time to aid healing. I am taking Tramadol (37.5/325) 2 tablets every 6 hours for the pain. I do not take it at night, the pain does not wake me up.

We came back from our cruise last Thursday. The symptoms did not affect any of our shore or ship plans. I did climb a 600 ft waterfalls with the family and it was painful doing it. But not enough to keep me away. The climb back down from the top of the falls was painful, as I had sand in my shoe rubbing against the sore. That was the most painful part of the trip.

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