Dreams of winning the hypothetical medical lottery

December 13, 2013

I keep reading and hearing about the big $400 million lottery jackpot. I thought for a minute about what I’d do if I won (unlikely, since I didn’t buy a ticket) and I was surprised by what came to mind.

I used to dream about winning. I figured I’d quit my job, buy a house, travel with friends, get a couple of dogs, and support20120809_220808 charities. Those were the first things that came to mind. Those are all still on my mind, but now something else comes to me first: doing all the health stuff I feel I can’t afford to do right now.

Money doesn’t solve everything, but it sure could help! I wrote about this 2 years ago but life was so different then. And back then, I didn’t know what was causing my health problems. If I had that money now, I’d immediate see the doctors who don’t take insurance, run all the lab tests that the insurance companies don’t want to cover but that I know I need, and take the extra supplements I’ve been avoiding. That’s already thousands of dollars every year. Then I’d go back to physical therapy and start getting therapeutic massage every week. I would pay to see a doctor for a medical marijuana prescription and buy a high-end vaporizer to help with the chronic pain. I would get a dog, which would do wonders for my emotional health (and I could then afford a dog walker for the days I needed someone, which would be most days.) I could get a home with central air conditioning so I wouldn’t feel as horrible all summer long. Of course, I wouldn’t have the stress of worrying about my future finances, and that would really help with my cortisol levels. I would update both my eyeglasses and my orthodics more often. And of course there’d be things like buying only organic produce.

This flashed before my eyes in an instant, and then it was gone. I didn’t win the lottery. I need to save the money I have in case my benefits are pulled away, which could easily happen any time. And I don’t have enough money to make all of that happen anyway.

It’s sad but true: good health costs money. I’m lucky to be doing as well as I am, to be honest. I’m thankful for a safe home, good health insurance, and a supportive family. But $400 million might not be so bad to add to that.

6 Comments | Expectations, Frustration, Healthcare, Limitations, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Making the rest of the world wait

December 11, 2013

The past week has been really stressful, both emotionally and physically. That’s why I’m typing this at 1pm in my pajamas. I’m not talking about the clothes I wear to lounge around the apartment, but the ones I slept in last night. I have not showered or brushed my teeth. I have no had lunch. I have not gone grocery shopping, visited my grandfather, or run the errands that I planned to run today. And I won’t.

Some things can’t wait. That’s true. I have to pick up a prescription at the pharmacy. It doesn’t have to happen today, but it can’t wait forever. Maybe you have to get to the mailbox with your rent check or cook a meal. But there are so many things that we think must happen today and the truth is that the world won’t care if we put them off for a few days. For me, those things are the ones I just listed. Yes, I want to do all of those things. Sooner or later they all have to happen. I planned to do them today, but waiting is ok, too.

I’m putting my health first. I feel lousy. I spent all day yesterday at home and resting. That helped a lot! I had hoped that one day would be enough, but it wasn’t. And that’s ok. I mean, I’m not happy about it and it sucks, but it’s ok. It’s not the end of the world. It’s not the end of my world. I will spend another day at home, resting. If I have to cancel tomorrow’s plans to rest more or to do today’s errands, then so be it.

I’m putting my health first, and I know that’s the right decision. Everything else can wait. No one will mind and in the grand scheme of things, it just won’t matter.

9 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why don’t I cry?

November 25, 2013

Sometimes I wonder why I don’t cry more about my health situation. I certainly have good reason to. Sometimes I want to, but I don’t. And I wonder why.

I just emailed a bunch of loved ones to let them know that my new, long-awaited treatment isn’t working. I thought about the many options I can try out next. I thought about the months and months of trial and error, of hope and despair, of improvements and horrible side effects, that now await me. I thought about it all, and I wondered why I wasn’t more upset.

Right now I am wrapped in a blanket. My hands are so cold that it’s hard to type. Yep, we’re getting some early winter weather here in New England. I want to take a hot shower to try and warm up, but I’m too tired to manage it. Should I want to cry?

I’m sure that part of my lack of crying is my positive attitude. I’m cold, but at least I have shelter, warm clothes, and the ability to get warmer if I have to (I can drive to a friend’s house, complain to the landlord about the lack of heat, etc.) My treatment isn’t working right now, and trying others could be tough, but at least I have options. That’s a hell of a lot more than what I had two years ago. Or even 1 year ago. Or even earlier in 2013. Overall, life isn’t that bad.

Then again, it isn’t all that good, either. My life is tough. Sometimes it really sucks. I want to date and have a job and play sports or even just take a long walk. Yeah, it sucks. But a long time ago I promised myself that I wouldn’t constantly get upset and cry over it. The thing is, I made that promise to myself about 20 years ago when I was a kid. I had always been a crier, and I didn’t want to be considered a cry-baby. Also, I was trying to prove to myself that I was stronger than my pain. That made sense back then. I occasionally cried over the pain, just like I occasionally cry now when it’s really bad. But the thing is, I still only cry when it’s really horribly extremely bad, and maybe there are other times when a release of emotion would be good for me. My health situation is much worse and much more complicated than it was 20 years ago. Back then, it was sporadic pain. Now it’s constant pain, fatigue, digestive problems, and more. Back then it didn’t stop me from doing anything other than certain sports. Now, it stops me from participating in so many important facets of my life. So why don’t I cry more often?

I don’t know what the answer to that question is. Maybe one day I’ll figure it out. Maybe I won’t. Right now I don’t think it’s important enough to worry about it actively, but I like to be self-aware, so I’ll keep it in the back of my mind and maybe the answer will come to me. In the meantime, I’m not in denial and I’m not suppressing my emotions. I know all too well what my situation is and I’m facing it head-on. And that feels good.

Plus, I have this blog as an outlet. I can’t believe I’ve written almost 400 posts now. I’ve found writing it to be very cathartic and the readers to be very supportive. So thank you all.

I admit it, I don’t have an answer. I don’t know why I don’t cry more. And right now, that’s ok.

4 Comments | Educating, Expectations, Fatigue, Frustration, Limitations, Medication, Pain, Support, Symptoms | Permalink
Posted by chronicrants

Giving in to yoga pants

November 23, 2013

It started in college. One summer a friend at I got an apartment. Every day after work she would change into “comfy clothes” as soon as she got home. She acted like this was normal, but it seemed to odd to me. After all, it’s not like she wore suits to work. But by the end of the summer, I was doing it too. It felt great to wear something stretchy and comfy instead of jeans or whatever. I was hooked.

More than a dozen years later, I still do that. The difference is, since I’m not working now, and I don’t feel well enough to be out all day every day, I spend a lot of time at home. That time at home means lots of time in comfy clothes. Sure, I could get formally dressed in the morning, but if I’m not going to leave the house, then why bother? In the summer, I’d rather get my “house clothes” sweaty instead of my “going out” clothes. When I cook, I’d rather spill on house clothes than going out clothes. I don’t have to own as many going out clothes if I’m mostly staying in, and when I’m in I don’t mind wearing the same thing over and over (as long as it’s clean.) And mostly, I just want to be as comfortable as I can be.

Last winter I didn’t have a ton of pants options for around the house, but this year I have fewer (one pair doesn’t fit, another has holes, etc.) I did ok by wearing my fleece pajama pants around the house for the last two months. They’re warm and so comfortable. That worked because I slept naked, so I wasn’t wearing the same pants all day long. But then it started getting colder, and I needed to sleep in my pajamas – can you imagine? Suddenly, I didn’t have much to wear around the house.

A couple weeks ago I was at a store buying something I really needed. Yoga pants had been on my mind for a while. Everyone swears by their comfort. I had tried a pair on recently and loved them, but felt I didn’t need them and couldn’t justify the expense of the purchase. Of course, that’s when I was still wearing my pajama pants during the day. So while I was in that store, I tried on a bunch of them, and WOW! I bought two pairs and I’m wearing one right now. They could even pass for going out pants if need be. That means that if I just need to run a quick errand, I won’t feel like I have to change, then change back in 1/2 hour. I can just stay in them. Most of all, they’re just so comfortable. They aren’t tight on my tummy, something that really bothers me both physically and emotionally because of years of physical discomfort there. They keep me warm. They were inexpensive (under $20 each.) They aren’t too tight around my legs and I don’t feel the material pull as I bend my knees, something which can bother me in jeans. And since they’re meant for yoga, I can comfortable wear them when I do my physical therapy exercises.

I’m not trying to tell a style of pants. I’m trying to sell the idea that when we’re dealing with physical discomfort on a regular basis, we deserve to be as comfortable as we can be, as much of the time as possible. That’s what I love so much about these pants, the comfort. We all need to find that comfort. For some that will be a certain style of pants. For others it will be blue-light filtering sunglasses. For others it will be just the right shoes. Hell, I could have just as easily written this about my new-found enjoyment of wearing a bra less often. But I guess that’s a story for another day.

14 Comments | Educating, Expectations, Limitations, Pain, Raves, Symptoms | Permalink
Posted by chronicrants

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