blood in urine

On March 25 I discovered blood and a few clots in my urine. I did not have a fever nor any pain in my lower back which would indicate a kidney infection or other problem. It cleared up 5-6 days later without treatment but I made an appointment with Dr. Hackett, a urologist to have it checked out. A blood test showed a testosterone level of 39, with a normal range between roughly 250-850. I subsequent test showed a normal level of 389 so the initial test was ruled an anomaly. A CT scan of my kidneys was unremarkable and a cystoscopy or my bladder showed nothing abnormal. The blood was attributed to a possible small ulcer in one of my kidneys or bladder caused by my LV condition. It is unknown if this will recur.

Pain relief

As I look back at my latest post, I realized I didn't post about the end of the latest pain cycle. I believe it was the afternoon of Tuesday May 12 when I was waiting for my pain level to increase before taking my afternoon pain med doses. My pain level never increased and has stayed down in the 3 range since then. I stopped taking all narcotics at that point and haven't needed them. I looked back and this pain cycle lasted about 6 weeks.

notes from 5-7-09

I have been laid out in bed since Sunday evening, it's now Thursday, with a bad virus. I was checked for flu with a negative test result. I am slowly getting better and am back at work today for the first time this week.

Since 4-30, my pain level increased again back to 6-8. For pain treatment, Dr. Abraham prescribed Oxycodone since Percocet has worked in the past, which contains Oxycodone and Acetaminophen. That gave me the relief I needed and was able to get me lain level down to 4-5 where I could function again.

My pain level dropped off Tuesday afternoon down to a 3-4 and has stayed there since then. I stopped taking all pain medications except Neurontin. This is a welcome relief and I think is the end of this pain cycle, which has lasted about 6 weeks. I didn't have any ulcers this time.

I haven't made my appointment with Dr. Belgrade but will soon to come up with a plan for the future.

Here is my current medication list:

Aspirin 325 mg oral Take 325 by mouth daily
Danazol (Danocrine) 200 mg oral cap Take 200 mg by mouth daily
Folic Acid 400 mcg oral tab Take 400 mcg by mouth daily
Gabapentin (Neurontin) 300 mg cap Take 1800 mg by mouth 3 times daily
Mirtazapine (Remeron) 30 mg oral tab Take 30 mg by mouth each night
Nifedipine (Adalat CC) 30 mg oral tbsr Take 30 mg by mouth daily
Oxycodone acetaminophen (Percocet) Take 1-2 tab by mouth
5/325 mg oral tab every 4-6 hours as needed
Oxycodone 5mg oral tab Take up to 30 mg by mouth as needed
Pentoxifylline 400 mg oral tbsr Take 400 mg by mouth 3 times daily
Ultram 50 mg oral tab Take 100 mg by mouth 4 times daily as needed
Vitamin B-12 1000 mcg tab Take 1000 mcg by mouth daily
Vitamin B-6 100 mg tab Take 100 mg by mouth daily

4-30-09

Yesterday evening I had some unexpected pain relief. In the afternoon, after my morning dose of pain medications had worn off, my pain level was down so I didn't take any Dilaudid, Percocet, or Ultram. Even without those in my system, my pain level was 4-5 and I was able to walk without a cane for the first time on a week or so. I was very happy and thought maybe the end of this outbreak was at hand. By 7:00 pm my pain level was increasing and and by 9:00 pm I had taken all these pain medications again out of necessity, and had a pain level of 7-8. I am trying to understand what led to the decrease in pain, possibly that I had cooled my foot in cold water for 4-5 hours through the day while I sat at my desk at work. That is the only change I can think of from what has become my daily routine.

I see Dr. Abraham this morning to try and get a referral for Dr. Belgrade. I also received the name of another pain specialist, Dr. Scott Schultz, a radiologist who works in Robbinsdale, MN. I got this name from Jill Landecker, a pharmacist at Cub Foods where I get my prescriptions filled. Being at the pharmacy every week, I have gotten to know my pharmacists at Cub Foods pretty well over the years. After my appointment this morning, I will call and try and set an appointment with this doctor as well.

My hope is that things go well with Dr. Abraham this morning and he can be my primary physician. I have been without a primary care physician for a couple years now, since Dr. Bosmans left my local clinic.

notes from 4-29-09

Since my last post, my pain level has continued to increase. Last Wednesday 4-22, after having pain spikes every minute or so at a pain level 9 with a base level 7-8, I went to the ER at North Memorial Hospital. I was given 2 mg of Dilaudid IM injection, which got the pain level down to a 7 with spikes at 8. Then I was given 10 mg Morphine IM injection, which eliminated the spikes. I left with level 6-7 pain.

On 4-23 I was prescribed Dilaudid, 4 mg every 3-4 hours. Without this and other meds, may pain level is 7-8 with spikes at 9. I also am slowly increasing my dosage of Neurontin (Gabapentin) up to a maximum 7200 mg daily, taken in 3 equal doses. For pain management, I now take:

Dilaudid 4 mg every 4 hours
Percocet (Oxycodone/Acetaminophen) 20/650 mg every 4 hours
Ultram (Tramadol) 100 mg every 4 hours
Neurontin (Gabapentin) 1800 mg three times a day
aspirin 320 mg one daily

I also soak my foot in cold water once or twice a day for 10-30 minutes, which also seems to help. I can get my pain level down to a 6-7 most of the time, though it increases as the medications wear off.

From what I have read, Dilaudid should have a much larger effect than it does on me. From what I remember about Morphine injections from 2 years ago, they had a larger effect than the Dilaudid injection did last week.

I noticed my right foot and ankle was swollen on 4-24 in the areas of pain. I started wearing my support hose (30-40 mm compression) to minimize the swelling. See the pictures I have included.

I am trying to get an appointment with Dr. Miles Belgrade, a pain treatment specialist working from the Pain and Palliative Care Center in Minneaoplis. I have heard very good things about him. I really need a doctor that is willing to work with Dr. Leitch and me on the treatment of this condition and the associated pain. I hope this is the doctor for me.

4-13-09 pain

I woke up last night every 3-4 hours with pain spikes at 8-9. With my existing pain meds, I can only get my spikes down at a 7-8. I spike every few minutes and, other then meds, nothing seems to help alleviate the pain.

The spikes are a sharp stabbing pain located on the top of my right foot, centered over my 3rd and 4th tarsal. I also have a base pain level of 5-6 which feels more like more of a skin irritation and ache.

notes from 4-12-09

My pain level has been up in the past 3 weeks or so. I have no ulcers but pain radiating on the exterior of my right foot. It started near my ankle 3 weeks ago and felt like I had been hit hard with a sharp object. I did not have swelling or anything in that area. The pain moved down the outside of my foot and now is located down near my toes. My pain level has been 4-6 as a base with spikes at 8-9. I have treating with Ultram and Percocet but can only get the spikes down to 7 or so and the base down to 4-5. I have an appointment with my dermatologist to discuss pain management and what we can do to bring the level down further. I would like to get the spikes down to 5, with a base at 3-4 if possible.

It's been a long time

It's been more than a year since my last post, I kick myself now as I look back through my posts because of my inability to track my progress through the year. But, as much as I hate the saying, it is what it is. Here is what I remember about the last year:

Around May of 2008, I had a pain flare up which was excruciating. It was discovered that I had an ulcer between the toes of my right foot. We treated the pain with Oxycodone which helped.

Overall, I would say I have had a pretty good year as far as pain flare ups. My pain level is up in the last week or so. Mostly I notice my neuropathic tingling is worse. That causes pain on the tops of my feet and up my shins. Pain levels in the 4-6 range while on 200 mg, 3 times a day of Ultram, which now has a side effect of making me anxious. I have trouble sleeping as well. I may try to switch to Oxycodone if my pain level stats where is has been.

That's it for now. Hopefully I will blog more in the near future.

notes from today 11-23-07

I have been experiencing a new pain over the last few days. It's a deep throbbing pain radiating inside from my left knee. It has hurt enough to keep my awake during some nights. It seems to get worse throughout the day peaking at bed time. I do what has precipitated this new pain.

pain level

My pain level has decreased over the past week or so. Currently it's a 3. My ulcers continue healing. No new ulcers have appeared. I was pleased with the relief provided by the Lidocaine gel. I ended up using it twice a day for 3-4 days.

pain level

I had trouble sleeping last night due to my pain level that has increased over the past few days due to new ulcers on the interior of my left ankle. It spiked at a 7+ this morning. Once I got out of bed, I tried for the first time sterile Lidocaine gel (2%) applied to the ulcers and covered them with a bandage. This can be applied 3 times daily. It numbs the immediate area and seems so far to work pretty well for the ulcer pain. I intend on using it as needed for pain due to the ulcers.

My dosage of Danazol is 200mg, once a day which I take in the morning. I have not noticed any adverse reactions to it. I will get my liver function checked in another 3 weeks or so to ensure it is still functioning at a normal level.

My insurance has not yet approved Cymbalta, which I was prescribed by MAPS pain clinic for my neuropathic pain. I notice my neuropathic tingliness constantly throughout the day and as I crawl into bed at night.

trying to get the http link to work

try clicking on this link to get to the WebMD:Danazol site

Danazol

I think I got it this time.

new med

I started a new med today: Danazol. I will post my dosage when I have it at hand. Info can be found at http://www.webmd.com/drugs/drug-7778-Danazol+Oral.aspx?drugid=7778&drugname=Danazol+Oral (the http link didn't work this time, I am experimenting with that) Our hope is that it will slow the progression of the symptoms.

From a purely philosophical perspective, I don't think anyone can be sure that a particular course of treatment is effective at "slowing the progression" in a single case. To what are we comparing this course of treatment? I do tend to wander to that end of the spectrum, often asking questions of myself like, "How do we know that this is doing any good at all?" Well, I can say with regard to my pain meds, if I stop taking them, my symptoms increase in a few hours or within a day. When I start taking them again, the pain subsides. So for those symptoms, I can accept that there is benefit. But for the courses of treatment for other symptoms that we are merely attempting to, again "slow the progression", I am not certain that we are making progress. For the most part, I trust that we are.

today's thoughts

Thanks to all who responded to my email about viewing my blog. Yes, this blog is almost completely about my journey with my medical condition, livedoid vasculopathy (LV), and related topics. I know it's graphic at times; I do not apologize for that. This is meant as an education for me and others and to help me track my progression.

I was looking through my past postings and noticed that one of the pains I experience now has I also described nearly exactly the same way back in November of last year: the feeling of being kicked in the right shin. A reoccurence of the same pain...interesting. Back then it lasted for a week or two.

notes from 9-24-07

It's been a very long time since I have taken the time to blog. I will try and take the time in the future. I know it only serves me better to do so.

This spring/summer as my pain level rose again, I tried twice a lumbar epidural. This procedure involves guiding a needle with x-ray into the epidural space in my lower back spinal column and injecting a mix of Lidocaine and Cortisone. My pain level after the first procedure went from an 8 to a 6 before I left and was down to a 4 by the next morning. I had a pain level around 3-4 for the next 2 weeks, than it rose again.

I had the procedure done again, hoping for a more lasting effect. I had this time 4 weeks with lower pain levels; still not as long lasting as we had hoped. We decided not to try a third round since it didn't seem to provide enough of a long lasting effect (6 months to a year).

My pain level has been manageable through most of the summer until lately. Through the last week and a half my pain level at times has risen back to the 7-8 level. I have just a couple of new smaller ulcers. My worst pain now feels like I got kicked in the shin, just above my right ankle on the inside of the shin. There are no external marks or ulcers in the area. It is very sensitive to the touch. It feels like a bruise. No swelling in the area either. The area is not hotter or colder than the surrounding skin. I also have pain near an ulcer on the inside of my left foot near my ankle. I will make another appointment with the MAPS pain clinic to talk about what is next.

I have been seeing Angela Leedy-Larson at that clinic for a while now. She has recommended an implantable device that has electrical leads and sends electrical pulses to your spinal column. This sounds to me very similar to a TENS unit which I tried for a while with no relief; I only was annoyed from the buzzing feeling. This is a permanently implanted device controlled with an external remote control. It just sounds kooky. I honestly don't belief it would work. I am pursuing treatment with meds for now. I can use them when I need, and when I am relatively pain free, I don't take them. I like that aspect of that course of treatment.

My purple skin patches continue to spread. I will upload some more pictures soon. I notice the spread on the underside of both forearms and a little on my belly. For now, it is just annoying.

That's it for now.

pics from 1-19-07

The picture of my left forearm show the progression from last year of the discoloration. The picture of my chest does not show much progression from last year.

The other 2 pictures just show the status of the 2 ulcers on my left foot.

pics from 1-13-07

pics from 1-8-07 - swelling

On January 8 of this year, I noticed that my left foot was swollen across the top on my foot. It doesn't show very well on the picture here but I included it anyway.

I remembered there was a time last year about this time of year when my left swelled up like a water balloon (about 1 cm out from my normal foot) all the way around. It didn't get that bad but wanted to document it.

notes from last week

Last week was a bad week in terms of pain. I woke up from pain for the first time ever last Monday. My pain level spiked at an 8 that morning. Walking was painful so I started using a cane to get around. It was clumsy and awkward at first but after a few days I got used to it. I stopped using it this week as my pain level is back down to a more manageable 2-4 now.

notes from 1-7-07

My current pain level is about a 6-7 when I wake up these last few days. The pain is an overly sensitive patch of skin on the tops of both feet. It is painful to be in the shower with the water hitting them. After I have taken my morning meds, then pain level subsides to a 3-4.

The ulcer on my left shin has healed. I have a new ulcer on my left ankle. The two ulcers on the top of left foot are still there.

I am taking these meds currently:
ASA 325 mg1 daily
Foltx tab 1 daily
Pentoxyfylline 400 mg 1 tab TID
Tramadol 37.5/325 mg 2 tab TID
Gabapentin 600 mg QID
Remeron 15 mg QHS

I am going to talk to my psychiatrist about the possibility of increasing my dose of Remeron. I have trouble sleeping at night; I am restless. I have increased stress in my personal life. I have increased thoughts I now associate with depression: hopelessness, despair and lack of appetite.

I will start now to track my weight. I weigh 137.5 lbs. I normally weight around 145 lbs. I hope that increasing my dosage will decrease my depressive thoughts and I will be hungry more often. I would ultimately like to weigh 150 lbs. I think that would be a healthy weight for me.