Its like being back in chemo

I had no idea until well after I had chemo for breast cancer that chemo drugs are used for treating other illnesses. I have a friend with MS who has had chemo infusions to treat her illness.

Now I am on a chemo drug, Methotrexate, to treat my RA. It is primarily used to treat cancers as well as to treat RA or psoriasis.

I am told to avoid sick people and crowds, watch for infections, eat healthy, and cut back on drinking alcohol. Doesn't that sound like being back in chemo? I think I got these same warnings with chemo infusions.

Now its just an injection once a week. But I also have to take high doses of folic acid to reduce liver damage.

Blah, blah, blah. These warnings just annoy me at this point. My mother was on methotrexate orally for about 20 years. I refuse to live for 20 years and change my life for that long. I want to enjoy my life. I am NOT going to avoid crowds. I never did and I'm not going to now. Call me a rebel.

I really just want my life back. Sigh.

My inner rebel is showing

I try to be a good patient. Really I do. I know I also can be trying. But I do believe in the importance of being a good patient. I don't know what the real definition of being a good patient is but these are my thoughts:

• Showing up to all appointments, on time even
• Taking medications as directed, not skipping doses.
• Doing the follow up - whether PT, tests, etc
• Heeding doctors orders - not drinking, eating right, exercise, etc

I don't think its that complicated but I know there are people who do not.

Many years ago I was told by my doctors my first cancer was under control but I should continue to take care of myself, blah, blah, blah. After some thought I decided that while I wouldn't 'play in traffic', I was going to enjoy myself. So I became a good patient and did what I was supposed to and went to doctor appointments and took my medication regularly.

Through all my medical stuff, I have continued to be a good patient all these years.

But my inner rebel is showing up. I look at my pill box and think 'what if I didn't take any of them? Would I implode or something?' Sometimes I am sick of being sick and being good. I want to take a vacation from everything.

I have the urge to do something crazy....  ride a real roller coaster instead of the eternal medical roller coaster. I am sure it would make my back  hurt for days but it would be fun.

But I dont want to!

What the hell is that nurse in Maine thinking? Okay, she went ot Africa and treated patients with Ebola. She came home and was treated horribly and was stuck in an isolation tent in a hospital parking lot. Finally she was allowed to go home. Officials want her to stay in home confinement. Instead she went for a bike ride.

I mean really. She tested negative for Ebola but it can take 21 days to incubate so she still may be infected. She is not cooperating.

She isn't some kind of God who can tell if she has Ebola or not. She is a regular human being with nursing training. Ask the doctor in New York who rode the subway thinking he wouldn't spread Ebola.

Can we please start to be rational about this?

If you are at risk, just returned from treating Ebola patients in West Africa, do you mind cooperating and staying isolated for 21 days to be sure? There aren't a lot of good cures for this disease.
If you are running a fever and you did just return from West Africa, call your doctor for instructions and don't go wandering around the city until you find a crowded emergency room to treat you.

Ebola is a real problem and is on the verge of becoming a disaster. With a little bit of cooperation by all involved, it can more easily be controlled and contained. Grow up, chill out and cooperate, please!

Being rebellious

We all have the desire to run away and join the circus or drop everything and take the day off for fishing/skiing/golf/shopping. I usually go from required space to required space and not whine too much. My life is focused on these places: my job, my house, the hospital for doctor appointments, and the gym with side trips to the grocery store, see my parents, and occasional other events.

Recently I have been feeling over tied to my house and the hospital. I have been stuck at home because of the weather and car problems. I have been at the hospital too DAMN often recently.

On Tuesday morning I have a doctor appointment - where I break in a new doctor - and on Thursday I have a dentist appointment and get some fillings done. I really do not want to have any medical appointments this week or any time soon. Unfortunately the doctor on Monday should probably turn into additional appointments that will give me some relief in some areas.

Between those appointments and a few other obligations I will squish in my job and hope there are no more DAMN snow storms to keep me stuck at home.

What I really want to do is be irresponsible and do something fun. Today we are going out to a fancy brunch for a belated Valentine's. I feel like all we have done this weekend is eat. Tomorrow we hope to retrieve the car from where it broke down on Friday and have no other plans. My inner rebel allows me to think of irresponsible things to do to get outside.

This may include going to the beach. Yes we just had several snow storms back to back but I really could use a walk on the beach. It is not covered by snow because the tide removes it. But the tides are wrong so I need to rethink that. Or I can take my dilapidated body outside and go snow shoeing which invariably leads to pain and whininess.

My inner rebel is going to get me in some kind of trouble with my self I can tell. I'll rebel and do something I really shouldn't and then pay the price with pain and whininess. But I need to do something!