To my male readers - girl troubles discussed. Feel free to skip this one.
I have a variety of health challenges. I much prefer this phrase to a have a lot of health issues.
I have psoriatic arthritis
Irregular/heavy/painful menses
A slowly healing broken ankle
Depression
Asthma
Days like today frustrate and exhaust me. The treatments seem counterproductive to each other, and I'm certain the doctors are not talking to each other. I'm a PERSON with a life, not a medical record number. I need to get that through to them. While the treatment plan may sound like a fine medical experiment, I've got someone depending in me to make the right, semi-informed choices so I can take care of him.
And they're all interrelated and co-depend at on each other. For example, I went to my primary care last week to find out why a 12 week old ankle injury still hurts like it just happened. He sent me off for an MRI, which showed multiple fractures in various stages of healing, repetitive tendon injury and swelling. I already knew all of those things. I also known theirs not much we can do except put the time into letting that heal. (I am also thankful the answer is not "reconstructive surgery".)
Today at the rheumatologist, she reminded me that the primary drug, Remicade, is a TNF blocker and will slow healing, coupled with weekly self administered of methotrexate (a chemo drug used to severely suppress your immune system so other medication can work more effectively) which puts my immune system into a state of remission, so it can't speed up healing. She renewed my prescription of prednisone for swelling and pain and also reminded me that methotrexate can cause out-of-cycle sloughing of the uterine lining, so I may see some break through bleeding. She was adamant. Prednisone for swelling and pain, methotrexate weekly. Both of those drugs will impact the problems with my menstrual cycle.
I them went for my Remicade infusion, which is coupled with a beautiful 50 mg dose of Benadryl right onto a very effective port-a-Cath, which runs the line into my brachial artery on the left side of the chest. I never count backwards from 20 any lower than 12 before I go sleepy. Today I had my eyes closed at 14.
Between the Remicade infusion and GYN appointment, I went to sleep in my car for an hour. It was warm and cozy, but I couldn't really get to sleep because the wheezing and coughing had started. My most common side effect from Remicade is a wheezing cough that often times deepens into bronchitis. Tomorrow I check in wih my primary care to find out if my swollen lymph nodes and painful ears are just an infection, and to start monitoring the cough.
The next appointment today was with the GYN. I've been bleeding non-stop since May, with VERY heavy "normal periods" (Normal in the fact that the bad weks are once every 28 days). Back in May, I discovered my IUD had moved and was in the wrong spot, which started the non-stop bleeding. That IUD was replaced with a different brand, and it's just been getting worse. Two periods ago landed me in the emergency room because the heaviness of bleeding and severeness of cramps made me thing I was having a miscarriage. I wasn't, It was just a side effect from the non-hormonal type IUD that she inserted after having two previous failures with the preferred brand. Talking with her about other meds, she was adamant "no methotrexate! No prednisone!" We scheduled for a mammogram and switching back to the mirena IUD for ONE LAST CHANCE. If this doesn't work, we explore surgical options. Her confidence is higher than mine. This will be my 4th IUD insertion in less than a year. Maybe I'm just built funny in there. We also talked about birth control methods - my goals are pretty simple. 1) If I bleed at all, I'd like to have normal 3-5 day periods on a 28 day cycle 2) I do not want to have any more kids.
I also suggested that rheumatologist and gyn get together and talk out a plan for me. It's exactly the reason why I'm in a multiple-speciality, one chart system. Hell, they could invite the hematologist that is following me for anemia (iron) and pernicious anemia (vitamin D) and my primary care, just to make a party out of the whole thing. I'd bring the cookies!
I realized a long time ago, I am my only advocate, medically. But in a world where I'm living with chronic pain and a debilitating disease that is sucking away my ability to pay attention sometimes, it sure would be nice to think someone has my back.
- Posted using BlogPress from my iPad. Fueled by coffee
Someone does have your back!
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