Saturday, November 19, 2011

A reminder of a painful time

I finally found a primary care doctor here. That's the good news, because I have quite a few prescriptions. The bad news is doctors aren't always smart. I don't know if I mentioned it before but I have something called Lymphedemia. It's something breast cancer patients develop a good percentage of the time. It has to do with the removal of lymph nodes making the flow of blood up and down an arm difficult, and it is usually precipitated by too many needles, shots, infusions etc. During the course of my treatment, my "better" arm took a beating and eventually just pooped out. Consequently, unfortunately for me, I have lymphedemia in one arm and the very good possiblility of getting it in the other arm, the one missing the most lymph nodes. I wear a medic alert bracelet that says no needles or blood pressure BOTH arms. You see the swelling that can develop is quite painful, and can be dangerous. So fast forward to this week...the dang doctor said he couldn't get a good reading of blood pressure from my leg so he insisted on using the arm that hadn't developed lympedemia yet. Not only was it painful to have the bp taken in that arm but my arm has been aching terribly since.

I'm so MAD because this isn't the first time I've run into this problem of doctors or nurses being ill prepared to take care of me because of the lymphedemia. Even in the Cancer Center I went to for all my treatments, the lab insisted on taking blood from my so called good arm. Luckily by the time my real good arm went bad the blood work was less frequent. But seriously, how can it be such a problem!!!? Why can't they just adjust and use my leg? I'll tell you why. Because if you've never had Lymphedemia, you can't understand how serious it is or how painful it is. It just looks like a little swelling. And even if you're a doctor, if you aren't a doctor that specifically treats lymphedemia (there is no such thing, doctors refer you to a physical therapy clinic, that's how they treat it, that and compression sleeves and gloves...really attractive btw), you apparently just don't know. Ugh. So aggravating.

All of this just served to remind me of all that has gone on in the past with my treatment of breast cancer. The endless doctor visits...all but the first few I did on my own by myself. Which in turn reminded me of the biggest problem in my marriage.......a problem that has little or nothing to do with polygamy. The fact that I felt so damn alone during that time. So unmarried. So friendless. So adrift. So freaking scared. Eventually, I ceased caring what I even looked like. I really didn't think anyone was ever looking at me. I never was one for a lot of makeup and trust me, cancer patients need make up like fish need water.

I'm sorry this is such a venting post. I'm just feeling very down, very confused and very angry .. mostly at myself.


Older and Weiser said...

When did the "care" go out of physician care? Sometimes, it really seems like they do not give a flip. There are so few doctors now who have the most important skill of all--empathy. It is like they just don't care anymore...

I am so sorry that you are in such pain. I really don't know a lot about the kind of swelling you are suffering from. I suffer from edema in my lower legs, ankles and feet, and I know how much that hurts, so I can only imagine what it would be like to have a doctor try and wrap a blood pressure cuff around my lower leg an inflating it--ow! Couldn't they take one on your wrist? That is how I take also reads pulse. Maybe you should invest in one and take it with you to the doctor next time and insist they use it rather than the arm cuff. Just a thought.

Gentle hugs, my dear. I am sorry you are hurting, and I am sorry that you have had to suffer alone. No one should have to do that.

WiccanWoman said...

My household has a friend who develops this from time to time. She is not missing nodes, etc., but is morbidly obese and her tissues simply shut down/collect fluid, etc. We understand how you feel, and ache for you. Personally, I shall add you to my daily intention candle. Blessings from me and my household to you and yours....

PS - I have added you to my blog roll. :-)