More disability insurance bullshit

February 28, 2013

The other day I wrote about the inanity of the disability insurance system. Today I finally got in touch with my doctor and she read off the questions they sent her.

First, I love my doctor. When they called her, she refused to answer their questions on the phone and insisted that the questions be sent in written form. Lovely. And she’s going to send me a copy in advance so my lawyer and review it before she sends it in. Let’s just hope it helps me.

So anyway, she read the questions. And I didn’t like them. There were some along the lines of, if Prednisone and Plaquenil were helping me, why did I go off of them. Um, HELLO?!?!?!? These are not drugs to stay on long-term if you can help it! Why on earth would they suggest otherwise? And of course they asked why I didn’t try other disease-modifying drugs. I wonder if they mean the drug that’s in a class I’m allergic to, the one that causes permanent infertility, or the chemo drug? Because those are the only options I haven’t tried. Anyway, these questions are all focusing on treating the pain, and if you’ve been reading this blog for any length of time, you know that pain is not what’s keeping me from working these days. It’s the fatigue that’s stopping me from working, dating, spending more time with friends and family, getting out of the house many days… you know, having a LIFE!

Of course, the problem is that these insurance folks don’t see a person in those medical records. They see symptoms that could cause them to have to pay out lots of money, and they don’t want that. So they’re looking for a way to not pay the money. Even though if I had the money, I’d probably get better faster because I’d have more stable health insurance and more money to pay for treatments that aren’t covered by insurance, not to mention less stress and more stability in my life. But no, they’d rather try to avoid paying at all, which just delays my treatments, which means that if I do eventually win, I’ll be on the insurance for even longer. I’d rather get the money now so I can get better and then go back to work. And then they wouldn’t have to pay me at all.

Maybe I should buy a lottery ticket instead. Because, yeah, that always works.

I have to find a way to get healthy. I have to get healthy, start socializing again, go back to work, and then figure out how to fix this ridiculous, unfair, broken system that is completely stacked against the patient. I need to figure out how to lobby legislators or whatever to provide some fairness to this joke of a system.

It’s just not ok.

I used to end every post by asking readers to share it. I stopped doing that because I don’t think it helped and I’m less concerned by the quantity of readers than by the quality of readers (as in, getting people who are in some way helped or entertained by my writing.) But this time, I’m asking you to please share this and any of the other insurance-related posts. It’s so important to start opening people’s eyes to this. Everyone is so focused on health insurance. Yes, that’s important, but disability insurance is important too. And what’s the point of having it if they won’t provide the service that you’re paying for? People need to start realizing this, so that we’ll have more support as we work to improve the system. So please consider sharing this on Facebook, Twitter, Reddit, or whereever else you are. Or even by old-fashioned email (does that make me sound old?) For all but the last, just use the little buttons below this post. It’s a small way to help me work towards one day changing the system.

I can hardly wait to get started.

Leave a Comment » | Educating, Expectations, Fatigue, Frustration, Healthcare, Insensitive, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Using sex as a treatment method

February 12, 2013

Every week WegoHealth hosts a Twitter chat for health activists, and today’s chat was about sex and sexuality. Then a couple hours after that I actually had sex, a rare occurrence. So with sex on the mind, how could I write about anything else?

I don’t have sex as much as I’d like. I haven’t been dating much, and I only sleep with people with whom I feel a connection, so sexconvothat really limits me. Then a couple months ago, I got a text from D. D and I dated many years ago. Then after we dated, we slept together on an off for a couple of years. Then we lost touch for several years. We’d known from the start we’d never work out as a couple – he didn’t believe in monogamous relationships and I wasn’t interested in anything else. Still, he’s an excellent lover, and he thinks that same of me, so we kept having sex. I’d thought about him often in the years that we’d lost touch, so I was pleased when he texted me. We’ve been together several times since, and it’s been great. I have to be on guard that I don’t get emotionally involved, but aside from that, it’s all good. We get along great, we trust and respect each other, and we each think the other is fantastic in bed. Since I’m not dating anyway right now, this is just about perfect. (It would only be more perfect if we could sleep together more often.)

There’s another thing about D: he’s ok with the health stuff. When I first told him, he didn’t bat an eye. He’s always been Feelin' Satisfiedsupportive, without trying to “rescue” me. A lot of us know how rare that is. I once wrote that three different times I have crapped on a guy during sex. He was one of those guys, and he just shrugged it off and suggested we take a shower. Fantastic, right? Even tonight, in the middle of things, he kept starting to grab my arm, then stopping. Then I realized why – I told him he could grab it and it wouldn’t hurt me, and he immediately did. When we were together years ago, that would have hurt, and he remembered and was trying to be careful.

The point is, I can trust D around the health stuff. And that’s why I didn’t cancel on him tonight, even though the past 24 hours had been lousy. The fatigue hit hard last night, for the first time in a month or two. That was physically horrible and mentally discouraging. Then I woke up during the night to a lot of gas, cramping, constipation, and diarrhea. It was a terrible night. It took me several hours to get back to sleep. I woke up in the morning feeling lousy. I got out of bed late. I had no appetite most of the day. I spent most of the afternoon (I spent the morning in bed) watching tv, which I never do anymore. Usually when I have nothing to do I read, but I didn’t have the energy for that today. And to add insult to injury, the hormone mess meant that my sex drive was almost gone. I hadn’t been having sex fantasies, masturbating, or even feeling an urge for sex lately.

So why didn’t I cancel? Several weeks ago I was having a bad day when D was supposed to come over. I was in a lot of pain, and had been for days. I figured it was worth adding to the pain with sex. I’ve written before that sex can help with pain (this is true for me, but I’m not a doctor and am not giving you medical advice,) and that time a couple weeks ago it really did the trick. I felt much better afterwards, with the pain almost completely gone. I figured it was worth seeing if sex might help again today.

And help it did. It helped on many levels. Physically, I think it gave me needed exercise, and will contribute to better sleep tonight. He also gave me back my sex drive, which felt (and still feels) fantastic. Emotionally, it felt great to be close to someone and to cuddle for a while afterwards, having him hold me. Plus, I always feel wonderful about my body after sex. I feel sexy and desirable. Usually I dislike my body. I’ve always been comfortable with my appearance (except during Prednisone-fueled weight gain) but I don’t like the illness parts. This leads to a lot of negative thoughts about my body (such as I hate that I feel like crap! and Why does my body suck so much?). But it’s hard to have negative thoughts about my body after a half dozen orgasms, and after watching D’s reactions to my touch. Besides, how broken could my body be if I’m still capable of making someone scream like that?

Sex won’t solve all my health problems, even in the short term. And sex with the wrong partner won’t help at all. But when it helps, oh boy does it help! I’m not about to miss out on that.

1 Comment | Dating, Sex, & Relationships, Decisions, Educating, Expectations, Healthcare, Limitations, Medication, Pain, Raves, Symptoms | Permalink
Posted by chronicrants

Good health news!

February 5, 2013

I’m thrilled that for my 300th post on this blog, I’m reporting on some happy news. Sure, I rant about the frustrations and injustices of living with chronic illnesses, but I also think it’s important to celebrate and revel in the the good news whenever it comes our way.

Usually, a good medical appointment is when I’m told that I’m not getting worse. That tends to be the best that I hope for. So I’m still not sure how to interpret yesterday’s appointment where I was told I’m getting better. I think I’m still in shock.

Years of traditional medicine have failed me, so last summer I started seeing a naturopath. I did my own research first, figured out the treatment plan I wanted, then called around and did phone interviews with several people. I chose someone who was reasonably priced (though far from the cheapest), more local than many others, had similar treatment methods to the ones I wanted to pursue, and generally sounded like someone I’d want to work with. It took a while to research and find someone, but it seems to have been worth it.

The naturopath put me on a new diet and some supplements. The diet clearly started working right away. The daily nausea, cramping, gas, diarrhea, and constipation went away! I didn’t even realize just how bad they were until they were gone. Then I started to notice other changes. I had more energy. I didn’t unintentionally fall asleep in the middle of the day. I could take a short walk without needing a nap afterwards. I could do laundry and go grocery shopping in the same day (I’m still amazed by that one!) I could read a book and remember most of it by the time I reached the end, without having to reread the first chapters. These were all amazing improvements, but they were relatively small. Still, my naturopath felt that my gradual improvements were better than having big improvements that could backslide. That whole slow but steady thing. She felt I’d even be able to return to work in a year (this was said several months ago, so we’ll see….) She was positive, but I had my doubts.

Yesterday was the appointment that changed my attitude. My pulse was better. My ph balance was normal - and you chronic illness folks know how odd it is to be in the normal range of anything. My weight was good. My blood pressure was still too low, but most other measurements looked good. There were signs that my leaky gut had healed. What really shocked me was the part I should have seen myself. As she asked me probing questions about my recent health and abilities, it became clear that I’ve improved more than I’d realized. Yes, my memory is still a big problem, but it’s much better than it was. I hadn’t really grasped that before. My final IBS-type symptoms seem to have subsided, and I’m even having bowel movements twice a day. I hadn’t given that enough thought to realize it was happening, and what an incredible improvement it is. My pain is so much better that I only think of it when I’m having a flare. Sure, I still have too many flares, but they’re not as frequent as they were, and I do so much better in between. I knew that, but hadn’t put it in context with everything else, especially since I’m still restricting my activity to avoid what I know will cause pain. Then again, I’m walking up 2 flights of stairs at a time now – a record for me! My energy is a lot better. I knew I was doing more in a day, but she pointed out that I didn’t need “recovery days” anymore. I spent last Saturday with my mother. I left my house at 11am and got home at 6pm. A year ago, I might not have been able to do that, or I would have taken a nap at her house. And a year ago, I would have spent the entire next day at home, recovering, feeling lousy. I might have even needed more than one day of feeling lousy at home before I was “reocovered.” Instead, I felt good when I left her place! Ok, I wasn’t ready to do lots more activity, and I was tired, but I wasn’t really fatigued. And when I got home, I cooked dinner. Amazingly, I felt fine the next day! It was a quiet, laid back day because I already had plans to have a friend come over and play board games, but if he’d wanted to do some light activity, like take a short walk, I could have done that. Sure, I probably wouldn’t have wanted to walk through a large museum or do anything else like that, but I was able to spend a few alert hours with my friend, without needing to lay down to rest before or after. This is HUGE!

For the first time, I was feeling positive about my health prospects, and then my naturopath told me that we are ready to focus less on stopping the damage to my body and to focus more on repair. I almost jumped up with excitement. And in an even more concrete show of how good she feels about my progress, instead of booking our next appointment 3-4 weeks out as usual, she wanted to book it 6 weeks out! Ahhh!!!!!

I still have a long way to go, so I’m trying to be patient, something I’m really not good at. There is so much I want to do, but I’m not ready for any of it right now. It’s a good sign that I want to plan for the future, especially compared to a year ago when I couldn’t even see the possibilities. Still, I need to be realistic. I’ll probably never ride a bicycle, but maybe, just maybe, in a year or two I could go back to work, and date, and go out with friends, and travel, and…. Well, even doing half those things would be amazing. And for the first time in a long time, it feels like one day it might be possible.

4 Comments | Expectations, Healthcare, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Paranoid or realistic about symptoms?

January 30, 2013

If you have multiple chronic illnesses, then you probably have a huge array of symptoms, and you probably never know if a new feeling is a symptom of an existing condition or if it’s something new.  This always leads to the conundrum: to see the doctor, or to not see the doctor.  If I went to the doctor for every new odd sensation, they’d think I was a hypochondriac.  On the other hand, I don’t want to miss something important.  It can be a fine line.

A few years back, I kept getting numbness in my left hand.  It came and went for several weeks and I just tried to ignore it.  Finally, while I was in the car with a friend who has multiple sclerosis, it returned.  I asked him for his advice and he said what I was thinking: I should get it checked out.  When I got around to it.  No rush.  As someone with a chronic illness, he understood how absurd it would be to freak out over every little thing.  I did finally see the nurse practitioner at my doctor’s office.  She declared it to be a pinched nerve and she prescribed physical therapy.  I had just finished a long round of physical therapy for my back/hips/knees and I didn’t want to expend my time, energy, or money on another round.  I asked her what would happen if I didn’t do it.  She seemed confused.  I clarified: if I do nothing, could there be long term damage to my hand?  She said no.  Could it fix itself?  She said yes, that was possible.  I decided to ignore it.  It eventually fixed itself and I didn’t have to bother with PT.

But then, there was the time I had a bad cold, with a cough that sounded horrible.  I was staying with my parents for a week in between apartment moves.  My mother kept telling me to see a doctor, but I thought that was silly.  It wasn’t until I started to cough up yellow and green phlegm that I finally admitted she might be right.  Unfortunately, by then it was a weekend, which made everything more complicated.  If I’d gone a day before, things would have been much easier.  And of course my mother was right (aren’t they always?)  I had a bronchial infection, which was helped almost immediately by antibiotics.

This week’s problem was with my eyes.  Aside from needing glasses, and not even a very strong prescription, I’ve never had any eye problems.  I see my eye doctor every year for a regular checkup, and also so he can make sure I’m not suffering any negative side effects from the years of Prednisone and Plaquenil use, each of which can cause all sorts of eye-related issues.  Then on Sunday, my eyes started to hurt.  I thought maybe I’d rubbed them too hard when they were itchy.  But they kept hurting.  I never put anything in my eye.  I can’t even watch other people put in contact lenses!  I couldn’t figure it out.  When my eyes still hurt on Monday, I was worried.  They looked normal.  They weren’t red.  But they hurt.  I started thinking about the drugs I’d taken, and I couldn’t remember if this could be a symptom of one of those side effects.  I decided to give it one more day.  I dreamed about my eyes that night and was very stressed out in the morning.  The first thing I did when I woke up was to pay attention to my eyes.  Yep, they still hurt.

Feeling like a huge ass, I called the eye doctor.  I made sure they took my new health insurance.  Then I got an appointment for that afternoon.  I drove over, feeling like I’d be laughed at.  My eyes looked fine.  I seemed ok.  The doctor even remarked on how I didn’t look like I was in pain (he said he can sometimes see the pain in a person’s expressions.)  I pointed out my medical history and my high pain threshold and he immediately understood.  Still, as he checked me in different ways and each was normal, I felt ridiculous.

And then he put something my eye and shone in a light and saw how dry my eyes were.  This level of dryness would have been apparent at my checkup just a few months ago, so this was definitely new.  And it definitely accounted for the pain.  The doctor even said that it’s a known side effect of several of my conditions, especially hypothyroid.  He told me what to do (fish oil, eye drops, set up the humidifier that’s been sitting in a corner, put pots of water next to my radiators, etc.) and sent me on my way.  My eyes felt the same, but my stomach felt a lot better as the anxiety eased.  I felt silly going in, but I was also terrified that there was something seriously wrong.  What a relief!

There’s no way to be sure which problems need to be addressed and which don’t.  It’s all a guessing game, trying to use a biased gut reaction to decide.  Sometimes we’re right and sometimes we’re wrong.  Sometimes we’ll never know.  The night I had diarrhea over and over, each time containing blood?  Maybe I should have been checked out, but an ER on a Saturday night would have been torture.  I’ll never know if I made the right decision (but it did go away on it’s own and hasn’t happened since, so that’s a good sign.)  I guess the best we can do is to make decisions that we feel comfortable with, and about which we won’t have any regrets.  If we can do that, we’re probably ahead of the game.

As for my eyes, I’m just glad I made the right decision to get checked out yesterday.  Now if I could just get the drops in my eyes instead of on my cheeks….

4 Comments | Decisions, Frustration, Healthcare, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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