Weeks 9 and 10 are a mix of news and emotions.

It looks like I am doing another 2 week posting. Well, it has been a busy time. Last week the clinic wanted me to come in person to see if we could get my nausea under control. One thing that concerned them was that my nausea could be a symptom of thyroid problems. Supposedly the interferon can make toast of your thyroid. One of my blood test showed some difficulty going on with my thyroid. So they did more blood work on Thursday and I had and ultrasound done Friday. Now I have to wait for the results.

My doctor says that it is rare, but they have had some patients develop thyroid problems. When that happened they needed to stop treatment right away. “I’m not going to continue treatment and leave you without a thyroid,” was his words. Supposedly most people’s thyroids repaired themselves when they stopped the treatment. So I have been holding out on making the next posting, hoping that I’d get some news.

Well, it is Monday night and time for shot #10. I forced myself to go to half of my long-term survivor’s group tonight just so I could get out on the apartment for a while. I am sick and tired of being stuck inside for the last 10 weeks. It was nice to get out, but exhausting too. It was nice to see my group though.

I walked into a drug the deal on the way to the bank before the meeting. I walk slowly, so that is part of the problem. I could see the group waiting ahead and I knew that they were picking up. As I walked towards them two rather large guys came up behind me and then passed me. I was sure that the crowd was waiting for them. Just as I reached the crowed the guys reached them. There was a big truck parked and I couldn’t walk out on the road. So I had to push myself through the deals. My heartbeat took off for a while. I have not experienced what I understand as Riba Rage from the treatment, but it came close today. Part of me wanted to give them a piece of my mind. Not very wise though.

So tonight I did shot number 10 and I guess I’ll update more after I get my thyroid results.

Cheers,

David McHep C

I almost made one milestone

Sorry that I didn’t add this post when I promised to. I had a bit of a set back when my pneumonia knocked me on my ass longer than I had hoped. I finished the first round of antibiotics but the pneumonia stayed. So I went back to the doctor’s and they did an x-ray and gave me another stronger antibiotic. I just finished those yesterday. I am not too sure that the pneumonia is finally gone. Perhaps by the end of this weekend I’ll know. Last year I had pneumonia three times. I moved to Toronto last fall and since I moved I had not experienced pneumonia so I was hoping to make it through to the end of the year without having it again. That is now one milestone that I won’t make. My sister believes that I may have jinxed myself by telling everyone that I had hoped to make this milestone when the cough first surfaced.

Amazingly, despite fighting this pneumonia I do have quite a bit to report. My appointment with the Hepatologist went off as re-booked. I was still pretty sick but I didn’t want to miss seeing him again. So I went and wore a mask. We discussed starting the treatment. There were some options that I was unaware existed. First, I could choose which form of interferon I wanted to use. Either Pegetron or Pegasys. The Pegetron requires mixing the drug before injecting it with a syringe. Pegasys comes premixed in Epi-Pen like devices. So that is great for me. I’ve been a little nervous about having syringes around the house. I was a little worried that they may make me anxious and lead me to a relapse. Another option I had is that I could either go to the clinic for my injection or the nurse can come to my place to do it. That again sounds good to me. People I know who have done the treatment have told me to expect to get chills and sweats about 15 mins after the shot. I was wondering what the likelihood was of me getting the shot, jumping in a cab and then getting home in time was.

So my Hepatologist filled out the forums to get the treatment covered while I was there. He also faxed the association for the nurse and told me that it usually takes 4 weeks or less for everything to fall in place. The next day I got a call from the nurse. She believes that I’ll have the drugs by December 9th, so that is the day that she will come here and show me how to do my first shot. I also found out about a very important policy for the clinic. Treating Hepatitis C can cause the haemoglobin to drop leading to anaemia. On The Nomads forum that I participate in I see that how that is dealt with depends on where you are being treated. Some clinics offer a rescue drug called EPOETIN or PROCRIT which helps increase your blood cells. Other clinics don’t seem to offer it and will just do a dose reduction of the Hep C drugs. Everything I have read suggest that using the rescue drug leads to a better outcome (Hep C wise) than doing a dose reduction. When I asked my Hepatologist what they do there he said that they give the rescue drug. “Anything to avoid a dose reductions” was his words. So that was comforting.

So everything seems to be falling in place. Right now my emphasis is on getting this infection cleared up before I start. I really don’t want it to come back once I start. I will update as events warrant it.

Cheers,

David McHep C

A chronic pain in the.............

Another day, another posting. That is three days in a row. My surprise appointment with the Pain Management Clinic happened today. The doctor's opinion was to keep doing what I am since it has the pain under control. I asked him if he could think of any options other than morphine. He said that there are some but that he would not prescribe them to someone with Hep C. His feeling is that I should keep taking what I am and then when I finish my treatment we'll reassess my treatment then. Who knows, if the treatment works I'll have more options.

He mentioned medical marijuana (it is legal here). I told him that a few other doctors including two neurologist had mentioned it to me. They all say that it is supposed to be good for neuropathic pain. I told him what I told them. The morphine I take is a low enough dose that I don't get a buzz from it. Anytime I smoke pot I get baked and I don't want to feel that way. Not only because I am a recovering addict, but also because I can function taking the low dose of morphine. If I smoke pot I'll curl up into a ball and be too paranoid to leave my apartment. Other doctors have told me that if you eat it you don't get stoned, but friends of mine who use have said that they get more stoned if they eat it than if they smoke it. I'll believe them.

So I will stay the course until I finish my Hep C treatment. I was a little pissed when he looked over the referral that was sent by my doctor and revealed why I was referred. My doctor wanted him to asses if I was abusing narcotics. Trust me, I have abused drugs. I have wasted them, battered them and spit them out. My relationship with morphine is not abusive.

When I first moved to Toronto and hooked up with this doctor, he was upset that a doctor had prescribed morphine to me. It threw me a bit because I had never heard one doctor criticize another doctor's decision. I find that they are very good at protecting their own. I explained to him that it was not like the doctor just threw the drugs at me. It was a year of trying everything. Several drugs that are used for neuropathic pain were tried. Finally I got a little relief with Lyrica but the pain although a little diminished was still unbearable. The doctor contacted my Hepatologist to see if we could increase the Lyrica (I was at the maximum recommended dose), but he said that he couldn't give his approval because of my Hep C. So our only other option was to introduce pain killers. After going two weeks with no sleep, because of the pain, I finally got some sleep when we introduced morphine. I told my doctor that in all fairness he was not there when I went these two weeks without sleep so how could he question the decision of the doctor who was there? No answer. So to hear that he just wanted assurance that I was not abusing narcotics (and here I thought he was worried about my chronic pain) upset me a little. For the record the pain specialist told me that he was telling my doc that I am not abusing drugs.

I did learn something new. My doctor (the referring one) has told me that morphine doesn't work for neuropathic pain. I have proof though that it is working for me. Twice, I had a day when my pain came back big time. Both times I was a little freaked out thinking that the neuropathic pain was back. "Oh no, don't tell me that the morphine stopped working" was my thought. Then when I took my evening pills I discovered that I forgot to take my morning pills. Both times. So I knew that it definitely was working for me. I ask the pain specialist about that today. He explained that the Lyrica helps with the prickling pain but doesn't do much for the burning pain. The morphine is good for that. That is why I need the two together. So I have my answer. I am not nuts.

This was not the first time that I have felt like I was judged by a doctor because I was honest about being a recovering addict. I feel that it is important not to lie, or hold back information from doctors. I want to be totally honest with all doctors so they'll have the complete pictures. I feel that this has in the past kind of come back and bit me. I have felt an immediate withdrawal once I have mentioned it. The doctor will be warm and friendly and as soon as I say that I am a recovering addict there can be a physical distancing between us. If I am having a procedure done and I am in pain I sometimes feel that I am denied pain relief because there is an assumption that I am fishing for drugs. Please! Having a coloscopy done to get some narcotics is a bit extreme.

So I was feeling a little burned when I left the pain clinic today. If I was a closeted addict, or recovering addict, most of these doctors would treat me totally normal. Like they should. By addressing my problem and getting treatment I get a label and treated differently. No good deed goes unpunished. Isn't that what they say? As I said, I believe in being totally honest with medical practitioners but honesty comes with a price. Lying or withholding information can seem like the answer. Ignorance is bliss. Another saying. I do want doctors to know that I am recovering addict. I want them to be aware of it when it comes to prescribing anything addictive, but shouldn't they be cautious with everyone? Lots of people who do not identified as addicts, are. I don't like becoming a pariah because I was honest.

Regardless of why I was referred to the pain clinic, I am glad that I was. I now have my foot in the door, and I will see what options are available when I am finished treatment. Perhaps I'll get through an appointment with the referring doctor without a lecture on why I shouldn't be taking morphine. I've known for two years now that I am not abusing morphine. I think that fact that I have been on the same dose for so long says that I'm not trying to get high. There are small 5mg pills that are prescribed for breakthrough pain. I think the fact that 30 of them will last me several months shows that I am only using them when absolutely necessary. Since he is the prescribing doctor, he should be well aware of that.

So has this paranoia about me using pain killers come because I am honest about being a recovering addict. We can be painted with a broad stroke. Aren't we all not to be trusted? Aren't we all thieves (if anything goes missing immediately look at us)? This broad painting goes beyond the medical system, but I perhaps foolishly expect them to be more knowledgeable. Call me naive, but I don't like to feel punished for honesty. Those I know who are not addicts question this phenomenon. Am I just paranoid? Could I just be making this up. Perhaps in this case, but I have seen a close relationship go south as soon as I came out so to speak. I have seen a doctor who was warm and friendly suddenly become cold and distant when told. I don't know how to end this post. Situations like this will continue to arise. I refuse to be dishonest or withhold information. That is not the kind of person I am. As much as I hate getting whacked on the knuckles for telling the truth, I will continue. There are several medical practitioners who are knowledgeable and treat me well. The few stand out because of how bad judgment feels but I refuse to let them change me. So to this day and in the future I will remain a no need to ask I will tell you, recovering addict.

Until next time,

David McHep C