Tuesday, February 9, 2010

Doctor #1: Blood Pressure Blues

Today has been a very long and very difficult day. I'm beyond exhausted but I just can't seem to settle down. So I thought I'd try writing a bit.

This morning started off crummy when I woke up in a lot of pain and proceeded to get straight into an argument with APL. Luckily, APL and I found some time to share some coffee and talk things over after class. And then APL drove me to all of my doctors appointments today, picked up my new prescriptions from the pharmacy, and helped me talk to my rheumatologist even though he isn't feeling well today either. I am marrying a wonderful man who loves me and takes care of me even when he isn't feeling well himself. So I'm going to have to try to remind myself how wonderful he is whenever I start feeling frustrated for unfair reasons.

Doctor #1: Blood Pressure Blues

My first appointment today was with my primary care physician about my blood pressure. A lot of related things contribute to my high blood pressure problem. For one thing, I've gained weight just from being a lot less active than I used to be. And it is hard to exercise when my everything hurts, and it is hard to get motivated in the first place when you are fatigued. It's also been particularly difficult to exercise since I dislocated my kneecap. But on top of that is the prednisone, which I am on as part of my RA treatment. Prednisone raises my blood pressure by itself and makes me gain even more weight which raises my blood pressure even more! But I'm on the prednisone to help with the joint pain to help me feel well enough to exercise! This whole situation is some sort of horrific negative feedback cycle that I feel like there is no way for me to win.

By going back through my blog archives I just realized that I have been seeing my doctor once or twice a month for my blood pressure since JUNE. That means we've been trying to get my blood pressure under control for NINE months. Since then I've been on at least four different blood pressure medications - including the one that gave me a hacking cough. I've diligently gone and had my blood drawn by Favorite Lab Man whenever ordered to do so. I've tried to limit my salt intake, I've done my best to exercise despite general joint and more recent knee pain. In fact, I've been really proud of myself this week for riding the stationary bike for thirty minutes every day, despite the knee pain.

But none of this seems to be helping my blood pressure. So today my doctor added yet another blood pressure medication to my cocktail. She says this one might make me pee a lot (great) and that I now have to get my potassium tested weekly to make sure it isn't being negatively affected. So lets just add another needle to my weekly needle count. At least I'll get to visit with Favorite Lab Man again next week. He was super sweet to me today, especially since he just drew blood for me last Friday for my rheumatologist. What can I say? I'm a regular.

I guess the doctors and I are doing everything we can to try to fix my blood pressure problem. And I guess it just takes patience and time to figure out how to make all these conflicting factors point in the right direction. But I have to admit that it is a little bit frustrating to keep going to see the doctor and still having high blood pressure over and over and over again. We've made basically no progress in nine months of trying to fix this. And that is more than a little discouraging.

However, while I would ordinarily do my best to stay positive and act patient about this process, today I discovered that acting discouraged and upset and showing my frustration with my body and this process actually got me more help from the doctor. It got me a referral to the see nutritionist, which I think will probably be a good thing. Maybe the nutritionist will be able to help me do a better job at avoiding salt, which would help with my blood pressure, and figuring out how to eat to help me loose weight since my exercising options are a bit limited, particularly with my knee right now. And loosing some weight should, in turn, also help with the blood pressure. So I think this is a good step forward.

Acting discouraged and frustrated was also met by the doctor with some concern as to how I was coping with everything. She said it must be particularly hard for someone as young as me to cope with this many changes and she knew it was a difficult process of adapting to the changes. She told me I ought to consider seeing a therapist to have someone to talk to about adapting to a chronic illness and dealing with chronic pain. I have already tried therapy about a year ago and didn't feel I gained much from it. But, considering I'm still dealing with a lot of the same issues, maybe I'll try it again. And in any event, at least to doctor recognized that I'm going through a lot and dealing with all of this is difficult for me and offered me a source of help.

There's no getting around the truth of what happened today: acting miserable got me better options for care and help. Which is good to know. The only problem was that acting miserable actually made me feel miserable. So it's an interesting dilemma that I'll have to spend some time figuring out how to deal with someday.

::sigh:: After getting through all of that, I think I feel sufficiently exhausted and settled to go to bed. But stay tuned tomorrow for the exciting conclusion!!! Or something. Doctor #2: Good News and Not So Good News. As Usual.


Skye said...

What is your current dosage for Prednisone? & I'm sorry to hear about your blood pressure I hope it will get under control soon!

I think a therapist sound's like a good idea. I haven't seen one in awhile but last time I did it made me feel a whole lot better. Once I can afford it I plan on seeing one again. This time with even more life changing event's on my list.

~Mariah~ said...

I've been on prednisone since the day of my diagnosis - a year and a half ago - at doses varying from 2.5mg to 15mg (more when traveling, during finals, times of extra pain, betwen Remicade and Enbrel, less otherwise).

I have a love-hate relationship with prednisone. I HATE the side-effects: blood pressure, weight gain, fat re-allocation to your FACE (who wants that?), insomnia. Unfortunately, I can't deny that it helps A LOT with the pain.

But, since I have enough reasons to dislike my body, I've decided the bad effects are too much for me and my rheumatologist and I decided to get me off of it ASAP at my second appointment yesterday. Hopefully I'll be able to post about that soon.

But know that, temporarily and on a pretty low dose, the bad side effects seem minimal compared to how much better you'll feel.

Sarah Z said...

Have you heard of the free app "Lose It!"? It's awesome! You enter your weight, goal weight, and how much you would like to lose each week. Then you enter your food intake and exercise and it tells you how many more calories you can eat each day. It is maybe a little time consuming but pretty cool! Plus it's free!