I must be the worst blogger ever. Not only did I write one of those annoying cryptic entries as my last post, I then took almost a month to follow it up. If you’re wondering whether I am ashamed of myself, the answer is yes!
Life has been extremely busy lately and I’m having trouble balancing. I want to get everything done, but my energy is the limiting factor and I find myself really tired near the end of a lot of days. If I push myself too hard for too many days in a row, I crash at some point and feel extremely shitty for a bunch of days afterward.
I’m still learning my body. The lack of energy and stamina sucks because I’ve always been a GO GO GO type of person. I’ve always been one of those people that doesn’t like to sleep, I just want to stay up and do things. But now if I don’t rest, I pay a really high price.
Back in March I mentioned that I was having a few problems with my liver and heart. I had my heart checked out via X-ray and echo cardiogram, an ultrasound for the heart (I’ve had way too many ultrasounds considering that I’ve never been pregnant). Both the tests came back normal and I haven’t had any chest pain or tightness for a while, so that’s a relief.
My liver, on the other hand, is another story. In March my liver enzymes were elevated, which showed that something was causing it distress. My blood test in April was even worse. I used to hate blood tests because I was afraid of needles. Now I hate them because I’m scared to see the results of them.
I’ve already mentioned that the drugs I’ve been prescribed could be causing my liver problems. However, I am also seeing a TCM (traditional Chinese medicine) doctor and he has been giving me herbal medication. So in theory, my liver could be distressed by either of these things.
There’s a lot of debate about TCM and whether it works. I don’t want to write a lot about this now, but the short story is that my mom and aunt really wanted me to try it, so I did. I was extremely skeptical at first, to the point of sitting there and outright arguing with the TCM during our consultations. He didn’t like me because I was skeptical and unwilling to do what he wanted. I didn’t like him because he couldn’t understand why I was so scared to take his medication.
My TCM and I finally reached a compromise and I’ve now been seeing him for around 3 months. He is convinced that he can help me and get me off the drugs the rheumatologist has put me on (and wants me on for the rest of my life). I didn’t believe him at first. But now I’m starting to believe that maybe he can do it.
When I saw that my liver enzymes were higher than ever in April, I was really stressed out because it meant that I had a dilemma on my hands. I was going to have to tell my rheumatologist that I was seeing a TCM and that I was taking herbal medication. In order to save my liver, I would need to either stop taking the drug prescribed by the rheumatologist or the herbal medication given by the TCM. So which do I stop?
I feel like any normal rational human being raised in western society would instantly stop taking the herbal medication considering it’s not regulated like prescription drugs are and is, in theory, less effective and less safe. The 3 months that I’ve spent with my TCM, though, have made me believe otherwise. I’m becoming more and more scared of the prescription drugs that I take every day.
Both the prescription drugs and the herbal medication takes weeks to months to kick in and actually start working in my body. This means that if I were to stop taking one of them but then decide to start up again in the future, I would have to wait months in order to benefit from either of them again. This makes it more important to make the correct decision the first time.
My rheumatologist believes that the drugs she has me on are controlling my disease. My TCM believes that I don’t need the drugs and that as long as I take the occasional herbal medication, go to acupuncture, eat properly, and take care of myself, I will recover. The problem is that I want my rheumatologist to be wrong and my TCM to be right. I don’t want to take drugs.
This has led me to want to gamble and just stop taking the prescription drugs. I want to do what my TCM says and see what happens. I want to be off the drugs.
This, obviously, is fairly risky. If my TCM is wrong and I flare up, I’ll have massive brain inflammation again and will probably get sent back to the hospital to get hooked back up to the IV. I am not exactly sure if I can suffer permanent brain damage from this. I would have to assume no as long as I get medication to bring the inflammation down, but it’s something I would need to check before I went off the drugs.
It would set me back if the TCM plan goes wrong and I get sent back to the hospital. But if the worst case scenario is anything less than brain damage, I kind of think it’s worth it. The potential reward appears to be a life without drugs or, at the very least, a life with less drugs.
I think I’m in denial that lupus is forever. Somehow my TCM made me believe that he could cure me.
I swear I used to be a sensible person :S
I saw my rheumatologist recently and, in response to my latest blood test, she decided to reduce my drug dose to see if that would help my liver. I’m going to get another blood test next week to see if it helped. If things don’t change, it will be decision time.