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Not Broken

Posted Nov 09 2009 10:00pm

Dr TL asked me if there are some new ME/CFS news (that he needs to know). At the moment, I notice more political and activism news than medical.

As far as I noticed, there is one positive news. In the article “ Medical breakthrough puts Reno in spotlight “, interests by big pharmaceutical companies to produce antiviral medicine for XMRV has expressed.

The world’s largest pharmaceutical companies have been calling the institute asking if they can test their lines of a drug now used to treat patients with HIV, another retrovirus, to see if their anti-viral drugs can be adapted to treat Chronic Fatigue Syndrome patients.”They want us to send them the (XMRV) retrovirus so they can screen huge libraries of compounds and see what they have that could work,” Mikovits said. “They already have drugs to treat HIV, so they could redesign a compound for the XMRV virus. Since they already have FDA approval, they could get something out to people fast.”

If XMRV is causing or actively contributing ME/CFS symptoms, the treatment should be positive and it will be here soon.

Dr TL had another busy day, although he didn’t appear tired. He didn’t have lunch break. I just hoped he is looking after himself. I used to have busy days. I worked long hours and worked on Saturdays as well. I studied into late night to advance my career, while I did all housework and looking after housekeeping responsibilities. I know it wasn’t the reason for my illness, yet I worry. He has patients who are depending on him. And people like him who work hard to help other people should have happy and quality personal life as well.

My chest was tight. I admit it had been tight. And occasionally I was out of breath. As long as this doesn’t stop me from doing things, I tend not to pay attention. The tightness of chest is constantly present these days and they are obvious comparing to a couple of years ago. We are still waiting for the sample medicine, that may or may not help me. In a mean time, I’m continuing with Seretide. There is not much I can do about it at the moment.

PFM at home has slightly improved. It was worse the day after the last appointment. I assumed it was more likely payback from making extra trips to the Chemist. Dr TL was shocked that I had the energy to do that. (I was surprised by myself, too.  And it doesn’t happen often. I often cannot make even one trip to the Chemist.)

I went to the Chemist before the appointment. They were busy, so I had to come to the clinic without medicines. Then, I found Dr TL was busy, so I decided to go back to the Chemist to pick up the medicine while waiting. After the appointment, I wanted to get the medicine for the ear infection while I was able to go. After the last trip, my arms were very weak, even though I wheeled very slowly. I was lucky that a man offered help lifting my wheelchair into the car… Yet, I made three trips to the Chemist in one day.

Probably the last trip was with the help of B12 shot. Then, Dr TL cautioned me not to underestimate my ability.

Then, he told me I am not broken. He was giving me another metaphor example. Sometimes, I’m not sure if I’m translating it properly. There could be many meanings behind it. He said I’m not like broken egg. I agreed that I’m not Hupmty Dampty. I can still be recovered.

I don’t know if he thinks I’m over protecting myself. I do things when I can. But I just cannot do things when I’m not well… I am not restraining myself from activities from fear. I’m constantly judging my energy level how much I can do and make sure I have enough energy left to get home before I crash… I would also like to preserve some energy for quicker recovery… When I know I don’t have enough energy in me, I just have to save the energy to the very essentials. My judgement is not based on fear. It is based on intuition and experiences.

I don’t know how ME/CFS and COPD are interacting each other. As Dr TL says to me many times, my lung function shouldn’t be affected by fatigue. But there are days that I feel muscle weakness is somehow affecting my lung function or breathing…

PFM in his office was slightly better. He enthusiastically cheered me to produce better result. He had imaginary pom poms and would almost danced for me. I mentally blocked the image of him being in red and white cheer leader costume. :-p

Then, he asked about my ear. I told him it was still blocked. He found it was strange. He rolled up tissue paper and poked inside my ear. It hit directly to the infected area and hurt a lot. When nothing is touching the area, I don’t feel any pain at all. He took out a little gadget and looked inside. He commented that my ear dram was clear.

I double checked with him if I may not need to use the medicine because the ear dram was clear. He said my ear canal was still red and I need to use the medicine for it.

Problem could be coming from the other side of the ear dram. He asked me to pinch my nose and hold the breath. It didn’t make any difference. The other option is to push a needle into my ear dram. Neither of us liked the option. He believed that my ear is still blocked, but the reason remained as mystery. I felt bad of taking up his time with such minor problem. I said this should eventually go away. He didn’t like this idea, either. There is a possibility that it is something to do with hay fever, although I wasn’t having obvious hay fever symptoms. He gave me a sample nasal spray to try.

We quickly discussed about exercises. I still haven’t started them yet, although I’ve been contemplating. He encouraged me to start it and would check how I am doing on Wed.

I should prepare my mind for the day when appointments be reduced to once a week. At the moment, I’m going from one flare up to another including bad depression episode… My condition should become stable enough not to see him twice a week. Then, he may be able to have his lunch break.

We had a quick conversation in Japanese. He will be fluent one day. ;-)




Posted in Doctors, ME/CFS Tagged: COPD, Ear Infection
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