Feeling jealous and alone

March 3, 2014

I know that jealousy is a useless emotion. I’m already working to change what I can, and a lot is out of my control, so there’s no point in being jealous. Yet I am.

You’d think I’d be jealous of my healthy friends’ good health, but I’m not. Ok, I am a little bit, but for the most part I’m past that. I know that I can’t have that, so I’ve let it go. Sure, I get jealous of their good relationships with their spouses, their kids, their pets – all things I could have but don’t. But what I’m really jealous of is my friend L’s situation.

You see, L also has chronic illnesses. She has chronic pain and other symptoms, so we can really relate to each other. What I’m jealous of is that she’s never had to handle her illness or it’s results alone. She moved in with her then-boyfriend (now-husband) as a teenager, and he’s always been there to take care of her. I, on the other hand, have been alone for the worst of my health problems. My parents were very supportive when I lived with them, and then I had tough years where I could manage alone. And now? Well, now I could move in with my parents if I had to, but for many reasons I’d rather not do that.

I’m lucky. I know I’m lucky. I’m able to live on my own, and that’s huge. And I’ve been able to go to college and work, which L never did because she was much younger when she became disabled. But still, I’m jealous that she has someone to help her out. Her husband earns a very good salary, so she can afford to have someone else do her laundry, to get medical treatments that aren’t covered by insurance like acupuncture and naturopathy, and to get massages, all without worrying about the cost. I either can’t do these things, or I pull money out of savings for them and then stress over them. She gets to have pets. She freely admits that she couldn’t care for them herself, and in addition to loving them, she talks about how much they help her. If you don’t know what I’m talking about, check any search engine and you’ll see the many articles that talk about the physical  and emotional benefits of having pets. I know they’d help me, but I can’t afford them or take care of them. Beyond the money, L has help and support at home. Her husband helps with the chores and does all of the cooking. He comforts her when she feels especially sick. He helps her make decisions about her health. Oh, what I would give to have that.

I was thinking about this today on the way home from the grocery store. I managed to do the shopping ok, but as we all know, it doesn’t end there. I was wondering how I’d manage to get the groceries into the house, and I thought about L, and how her husband carries in the groceries. And after buying everything, I was tired and needed to rest, but dinner still had to be cooked, and I thought about how L’s husband does their cooking. And I thought about how on days like today, when I don’t see anyone else except at the store, and other days when I don’t see anyone at all, it would be so nice to have a spouse come home and have a conversation with me, and give me a hug.

Everyone’s life is different. I know that. I know that I have a lot of things that L doesn’t have. I know I have a lot of things that many other people don’t have. Still, some days I get jealous, and today is one of those days. Some days, I just wish I had someone else to help me through the tough days and celebrate the good days so I wouldn’t feel so responsible for everything, and so alone.

10 Comments | Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Support | Permalink
Posted by chronicrants

Some things I wish were covered by health insurance

January 28, 2014

I look at the many, many medical thing I pay for that aren’t covered by insurance, and I wonder why they aren’t covered. I would think that most of these would be cost-effective for the insurance company. I won’t go into the financial aspects now, but I just want to mention a few of the things that I think should be covered. Please add your own in the comments!

  • Supplements. If prescription medications are covered with a copay, why aren’t supplements? My doctors all want me to take multivitamins, vitamin D, calcium, and others. They tell me to. Yet the supplements aren’t covered.
  • Massage therapy. Ok, I found out yesterday that it’s covered, but only if I get a prescription for physical therapy, find a physical therapist who does massage therapy, and get it billed as a physical therapy session. And it counts as part of my physical therapy sessions for the year, which aren’t unlimited, so that means I’ll get fewer other physical therapy sessions. But I think it’s necessary. It’s expensive, so I only do it 1-2 times per year, even though my doctors and physical therapists say I should do it 1-2 times per month. A few days ago, my neck hurt so much that I could barely turn my head. After today’s massage therapy, I feel so much better. I can turn my head again!
  • Acupuncture. This has been one of only two things that has ever helped my chronic pain, and yet it’s not covered! I can go to a pain clinic under insurance, even though it won’t help, but they won’t pay for acupuncture treatments.
  • Marijuana. In fairness, medical marijuana is new in my state, but I still doubt insurance will cover it any time soon. They pay for all sorts of painkillers that have lousy side effects and that don’t do much to help me, but they don’t pay for marijuana, which is the only thing besides acupuncture that helps the pain. I don’t use it often, but when I need it, I want to have it handy, without worrying about the ability to pay for it.
  • Orthodics. My insurance covers a visit to the podiatrist and it covers physical therapy. But for some odd reason it does not cover my orthodics, even though they are completely necessary to prevent all sorts of problems. I am completely lost as to why they aren’t covered.
  • More mental health visits. I get so few, it doesn’t even seem worth going. I’d run out just as the doctor was starting to know me, and I wouldn’t be able to pay out of pocket, so why bother? So I’m missing out on useful treatments because of inadequate coverage.
  • Naturopaths. I can’t really blame the insurance company here, but I still wish naturopaths were covered, like they are in other states and in other countries. Unfortunately, the state of Massachusetts won’t license naturopaths, despite all of the good they can do, so insurance doesn’t cover them. That means that I have to pay out of pocket, even though my naturopath has been more helpful than the 10 previous doctors I had seen, combined.
  • Various tests. There are many very valid tests that aren’t covered by insurance. Some are used in medical research. For certain things, they are more accurate than the covered blood tests. The insurance company will cover the inaccurate blood test, but not the saliva test or urine test that’s more accurate. Lovely.

Those are a few of the things I wish my health insurance covered. I know I’m lucky. I have one of the best health insurance plans in the state, and access to pretty decent care. Still, after rent well over half of my spending is for medical care, and that’s even with health insurance. So yeah, I wish this other stuff was covered. What about you? What do you wish was covered by your health insurance?

1 Comment | Expectations, Frustration, Healthcare, Limitations, Medication, Pain, Politics, Rants, Support, Symptoms | Permalink
Posted by chronicrants

How the other side lives: others’ medical appointments

November 27, 2013

I’ve been going to other people’s medical appointments lately. Well, I’ve really only been going to appointments for two. The first is my father. He needs someone more experienced to ask the right questions. The second is a friend who just had a baby. I just hold the baby in the waiting room while my friend has her checkup or whatever.

It’s interesting to see how the other side lives. My father has only recently had any health problems, and my friend has had almost none. Yes, I’ve gained some insight into their lives and into what it must be like to have a straightforward appointment with no medical mysteries, something I haven’t experienced since I was a pre-teen. What I find more interesting, though, is the reminder of why “healthy” people find it so hard to understand what we go through.

It starts before the appointment. There’s no major prep. There’s no gathering of pill bottles, lists of questions, or compiling of medical records. There’s no anxiety. There’s no worry.

Then there’s the day of the appointment. It’s no big deal to them. It’s just another item on another day, like doing laundry or buying groceries (which are also no big deal to them, unlike to me.) The appointment itself is straightforward. It’s treated like meeting with a plumber to get your pipes fixed – they ask questions, get answers, and go on with their day. There’s also more trust in the medical establishment. They don’t worry about tests not being covered by insurance, doctors not providing the right diagnosis, or any of the rest I worry about. And there’s so much trust in general! They don’t edit what they tell doctors, worried about being considered a hypochondriac. They don’t worry about being disbelieved. They state any problems and move on.

As if that wasn’t enough, there’s the followup, or lack thereof. After most of my medical appointments, there’s a parent or friend wanting to know every detail. Well ok, with my father’s current issues, we’ve been having followup calls with my mother. She wants to be there, but since she works and I don’t, and to be honest I have more experience with doctors, I’ve been going to the appointments. But for my friend, when it’s done, it’s done. I’m sure she updates her husband when they both get home at the end of the day, but that’s it. There’s no rush, no concern, no potentially life-changing news to impart.

Part of me is jealous, but mostly I’m amazed. I had forgotten that it could be like that. It’s a good reminder of why my friends don’t understand all of the crap I deal with aside from how I actually feel. They have no clue about the insurance nightmares, the anxiety, the stigma, or the huge amounts of time involved. It’s completely foreign to them. I might as well move to Kenya and expect them to automatically understand my life there.

I’ll try to remember this the next time I get a blank stare as I explain that even though I don’t work, taking care of my health is more than a full time job. Or better yet, maybe I should get them to come to an appointment with me!

Leave a Comment » | Educating, Expectations, Isolation, Rants, Support | 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

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