Life with chronic conditions

I may whine complain about a lot of the crap I deal with in my life. I also may be a tad cranky about getting my meds so I don't hurt all the time.

I have a therapist for talking about stuff and I have a meds therapist who keeps me on an even keel. So any issues with depression are held back. I have people to talk things out with. And I know my ailments are not in my head.

I get exercise to help maintain my body as much as I can before my ailments compromise it further. Its not age that is doing this to me.

But so many people just don't get it.

I have a friend with a chronically bad back who has a fair amount of pain. But she doesn't see a doctor about it. She does occasionally see a physical therapist. She has no prescriptions for pain meds because she gets her sister's prescription. She doesn't exercise regularly. And she doesn't understand how I live in pain and have to beg off on group events or leave early. Since she's there and in pain she doesn't understand why I can't stick around.

I also have friends who want to go out at night to do things. Since not much is allowed to get between me and my 930 pm self imposed curfew, I don't go out much. If I do, it needs to have a comfy chair that provides good support. And it can't include any amount of walking or standing.

Finally I have an expiration period. If I am out too long, I spend a long time recovering. So if a friend is late and I spend time waiting around for them, especially if I am standing, I don't get to fully enjoy my time out and end up leaving early to go home and rest before I need to spend a couple days recovering. Therefore I don't spend time with friends who are late.

My husband does understand me. He claims that if I do things I shouldn't or for too long, I am crabby for a day or two. Apparently he doesn't like me when I am crabby. Maybe I should rip off that fake smile and let my inner crabbiness show and then more people might get it.

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.

The big scary headline

The latest big scary headline from the pharmaceutical industry says that it will cost $2.5 billion to bring a new drug to market. That's a lot of hype over a little factoid. And this kind of thing pisses me off. Increasing drug prices are an increasing part of medical costs in recent years.

First of all, yes that is a hell of a lot of money. There is no denying that. Second of all, its not as big as it sounds in terms of how they will recoup their money. For example.

If a new drug is developed that will treat a mere 10,000 people each year and costs $5000 per month (not an unexpected amount), it will take the drug companies 4.17 years to recoup their expenses. 10,000x$5,000x12=$600,000,000. $600,000,000x4.17=$2,500,000,000.

And this is why I really have no patience with the drama from the pharmaceutical industry:

"Development costs are one factor companies use in determining how much they will charge for newly approved prescription drugs. But they also weigh demand, the competitive market in their therapeutic areas, and the value they believe a treatment can provide to patients."

So if you thought the so-called 'death panels' were going to put a dollar value on human life, you don't need to worry because the pharma industry already did when they include the 'value they believe a treatment can provide to patients'.

But I do understand the value the pharmaceutical industry brings to medical advancement. I just have a problem with the dollar amounts and drama.

Sleeping, or not

I have problems sleeping these days. On a good night, I get to sleep for a solid 12 hours. I'm not kidding. I hope to do this once a week at least. Not this weekend. If I can, I save my big sleeping nights for the weekend because I don't have to get up in the morning.

Friday night I slept from about 10-330. Then I dozed off and on until 6 when I gave up and got up. Last night, I slept from about 930 to 4. Then I couldn't sleep so I played games on my phone (because my phone was nagging me to get caught up on words with friends) for about half and hour and then dozed for a while and finally got back to sleep for a bit. I am feeling a bit sleep deprived as a result.

I have spoken with my many doctors about this and my PCP said she wants me to have a sleep test to figure out if I have apnea or other issues.

Sleep tests can determine other problems as well. According to Dr. Wikipedia:

"Polysomnography is used to diagnose, or rule out, many types of sleep disorders including narcolepsy, idiopathic hypersomnia, periodic limb movement disorder (PLMD), REM behavior disorder, parasomnias, and sleep apnea. Although it is not directly useful in diagnosing circadian rhythm sleep disorders, it may be used to rule out other sleep disorders."

My PCP said that now they do sleep tests where they send you the machine at home and you can sleep in your own bed. However the hospital set me up for an overnight sleep test there. They claim the room is like a motel room. I hate sleeping in motel or hotel rooms by myself. I want my husband there to protect me from intruders and scary monsters or zombies. I also want the cat. I'm not sure I can bring either.

I got the schedule in the mail late Friday afternoon when it was too late to call. Then I got the information brochure in yesterday's mail telling me all kinds of useful information. Dress in comfortable clothes - not pajamas. It doesn't sound like you can wear pjs. They do not have shower facilities either.

I like this part where it says if you drink every night you should do so before coming - but you can't bring any alcohol and you must have a driver bring you if you are drinking. LOL. I find it funny that they specify this. Obviously some have driven drunk to the sleep test or brought in a bottle or two.

But I don't think I can get sleep there which is the whole point of the test. And what if I want to gt up and pee in the middle of the night?

First thing Monday I will call my insurance company and make sure they cover the test at home instead of there. Then I will call the hospital and see about having a home test if I can and ask all my other questions - can I bring my tablet to read a book on before sleeping? What about PJs? What about bathroom visits? Lots of things to know.

All I know is I need to sleep more. And this might help.

Lack of sleep causes both crabbiness and crankiness.