Knit 1, Purl anything

August 23, 2015

One of the hard parts about being unable to work at a job is feeling like I’m not doing anything substantial. Sure, I do favors for friends and offer advice online and do other intangible things, but it’s rare for me to do anything I can point 2015-07-09 12.01.45to and say “I did that” and be proud of it.

I started knitting as a child. My grandmother made such beautiful things, and she loved knitting so much, that I thought I should try it, too. At the age of 6 I learned the basics. Unfortunately, I never progressed much beyond those basics. Then a few years back a friend taught me to crochet, and I really got the hang of that. Before I knew it, I was making some complex items.

I spend a lot of time sitting on my ass. It’s sort of inevitable when you have chronic fatigue. So while I’m sitting and watching tv, sitting and listening to an audio book, or sitting and talking on the phone, I’m also knitting and crocheting. I always have multiple projects in the works at any given time, and I love creating them. The best part is, I’m making something useful! At the end of each project I have a physical, tangible item that I can say I made, and I can be proud of it. I sell some things and donate others. It feels good to donate hats and scarves to a local homeless shelter and know that I’m helping people.

Last year I taught a friend with chronic illness how to crochet. Like me, she knew how to knit, and wanted to learn something new. Now she feels the same way I do: excited to be able to make something, especially because she can no longer work.

Crocheting and knitting doesn’t solve all of my problems. But it solves one problem. And I’m grateful for that.

What do you do to feel a sense of accomplishment? Please comment below so we can get ideas from each other!


A little snuggle goes a long way

August 21, 2015

I had a nightmare last night. It happens from time to time. Sometimes it’s easy to go back to sleep, but often it’s not. Last 2015-08-20 22.19.09night was easier than usual, thanks to the handsome guy in the photo.

I happen to be dog-sitting this week. This adorable fellow was asleep, with his little tongue sticking out (isn’t that cute?) at the foot of the bed right around the time I went to sleep. Hours later I woke up, startled and upset. Before I could even remember where I was, he got up from the foot of the bed, came over to me, and cuddled up by my chest. I reached out to pet him, and he began licking my arm.

Before I had time to think about it, I was asleep again. I woke up hours later with this guy back at the foot of the bed. I don’t know when he moved. I just know he was there when I needed him.

How lucky can a girl get?


How strange to bleed

August 18, 2015

Every time I have a “normal” injury, I’m surprised to bleed. You see, most of my symptoms are invisible, or nearly invisible. I might get pale or shaky, but that’s usually it.

Saturday night was a bad night. Horrible nausea. Diarrhea. Body temperature fluctuations. I was mi2015-08-18 18.20.58serable.

Sunday night wasn’t as bad as Saturday, but it wasn’t pleasant. More Diarrhea. More body temperature changes. Less-severe-but-still-there nausea.

But Monday night was much better. I felt ok! So I decided to take a short walk. I didn’t want to push myself or push my luck, but I needed to get out of the house a bit. I made it about two blocks when my ankle turned and down I went. In the end I was fine, but what initially struck me was the sight of the big scrape on my leg. I’m so used to the invisibility of my symptoms, I wasn’t sure what to make of it. On the way home, I got a couple of funny looks. People could see the blood on my leg. Usually I suffer in silence and no one knows that anything is wrong. This time they knew.

It wasn’t a big deal. There was only a little blood. It stung last night, but now it seems ok. You can even see that in the picture, taken 23 hours later, it’s not so bad. And yet, it looks a lot worse than what I usually go through.

How odd.


Even when they’re wrong, it’s still my fault

August 12, 2015

Let’s face it, sometimes customer service representatives aren’t trained all that well. I once had one of those jobs, and I mostly learned what to do through trial and error. I’m sure some callers were annoyed at my inability to immediately solve their problems, but since I was offering technical support on phones, it wasn’t a big deal if something wen8-12-2015 6-10-09 PMt wrong.

Until I got really sick, most of my experience with calling customer support fell into those kinds of non-essential categories. Maybe the cable bill would be screwed up or I wouldn’t have internet access for two days. This was really irritating, but I knew it would eventually be fixed. I also knew that I’d receive reparations for my hassle.

Unfortunately, it doesn’t work that way with government entities. If they get something wrong, it’s still considered my fault. A few weeks ago I wrong about my frustration with SSDI benefits, mostly based on a phone call with a representation at the SSA (Social Security Administration.) I’d read everything, but it’s confusing, so when she corrected me, I assumed she was right. I should have known better. Thankfully, reader StuckInTexas commented and corrected me. But what else are they getting wrong?

I called the SSA 4 times to report earnings from a bit of work I’d done. It was handled 4 different ways, including 1 representative who was so confused, I just gave up and hung up the phone.

Yesterday I called Medicare to ask if a certain treatment was covered. They said yes, but only under certain circumstances. Those circumstances weren’t 100% clear, and when I asked questions, they just reread the same passage. To me it sounds like what I need will be covered, but they wouldn’t confirm that. They were happy to repeat, though, that it’s my responsibility to make sure it’s covered. How is that logical? I can understand that it’s my responsibility to call and check, but if I call and they refuse to confirm, then what? Do they really expect patients to move forward with appointments and treatments without knowing if they’re covered? Obviously that’s sometimes necessary, but often it isn’t.

MassHealth, our state Medicaid, was different. She simply said she couldn’t tell me and then she passed the buck: she said my doctor had to call the provider line. I can only assume the representatives on that line are better trained and will be able to answer the question. When I asked about covering a TENS unit, for example, she didn’t know what it was. When I spelled it, she still didn’t know. Medicare doesn’t cover it, but at least that representative knew what I was talking about. I think. Maybe she didn’t. Maybe they really do cover it. I don’t know!!

Yesterday I got a long form in the mail from the SSA. They want me to fill out all earnings I received since I went on SSDI. This was triggered by the earnings I recently reported, but I thought that only happened if the earnings were $750 or higher in one month. My earnings weren’t over $400! So now what should I do? I don’t want to have to fill out the form, but even more, I don’t want to be put in the category of people they “observe” unnecessarily. I want to call the SSA to check on this, but I’m pretty sure that if I call 5 times and speak to 5 different people, I’ll get 5 different answers! And if I do get 5 different answers, they’ll still say it’s my responsibility to handle this correctly. If I get 1 answer from everyone and it’s wrong, then the SSA will still say it’s my fault, even if I do exactly what they tell me to do. Don’t believe me? Look at what happened to these disabled folks who were on SSI.

I will take responsibility for my own mistakes. But I think these big government entities should do the same. What do they really expect from us? If they can’t manage to properly train their own employees in these complicated rules and regulations, is it reasonable to expect the general population to understand these same complicated rules and regulations? I don’t think so.

Have you encountered anything like this? How do you handle it? And if you’ve had to report income while on SSDI, did you have to fill out tons of paperwork? Please comment below so we can help each other out!


The shock of speaking with a supportive doctor

August 9, 2015

“I’m impressed by how well you know your body.”

“It’s not your fault you have gluten intolerance or hypothyroid. It’s just what you’ve had to deal with and it seems like you’ve been doing a great job.”

I’m not used to hearing things like this, especially from a doctor. Who was this amazing stranger?

24 hours ago life was good. I’d had a fantastic day with first one friend, then another. I’d spent a lot of it outside on one of the rare August days that’s cool enough for me to be outside. I was happy and content and tired in a good way. It was an absolutely perfect day. Until the reaction.

I’d been putting off trying Metformin for ages. I was worried that it wouldn’t sit well with me. I know a lot of women have problems with it. But I was also running out of options. I can’t take estrogen because of the side effects, and ditto for progesterone. My naturopath wants to try some homeopathic treatments. My only options were the homeopathy, Metformin, or literally scraping my uterine lining. I’d prefer to avoid that last one. So after dinner, I swallowed 1 pill. And almost immediately it hit me.

Diarrhea, nausea, and a racing heart all waxed and waned for what seems like years. After several hours of symptoms I texted my aunt my symptoms and asked her to get my uncle’s opinion. He’s a non-practicing doctor. The last time I had a bad reaction to a medication he told me to wait it out. When I blacked out in their living room he took my blood pressure and had me rest. He’s never told me to go to a doctor. This time, he told me to call my doctor. So I knew I should do it.

It takes a lot for me to call my doctor. I’m sure many of you can relate. I’m used to things going wrong with my body, so I don’t panic. And the diarrhea wasn’t so bad. It was certainly less bad than my reaction to eating gluten. But the racing heart had me worried. My resting pulse is around 75. I kept checking my pulse using a phone app. It was 82, 89, 95, 94, 88, 83, 99, 101, 109…. I didn’t like that my pulse had gotten better, then worse again, and so had the diarrhea and nausea. I almost never call a doctor after hours; the last time was probably 10 years ago when I was coughing up green phlegm. But this time it seemed like the right move, so when my uncle told me to call, I did.

My endocrinologist (who prescribed the Metformin) doesn’t have after hours, so I called my primary care physician’s office. Just 5 minutes after I left the message I got a call back from the doctor on call. This was 10:30 on a Saturday night, so I wasn’t sure what to expect. This guy was amazing! He spent 25 minutes on the phone with me. I stated my symptoms, the timing, and what I’d been doing (orange juice in case it was a blood sugar problem (because Metformin can do that), sucking on ice to stay cool and hydrated, etc.) I was a bit defensive and insecure as I stated just a few of my current diagnoses. I was apologetic for calling. I couldn’t help but brace myself for the doubt that usually follows, so I was shocked when, instead of doubt, I received support!

Thankfully, he didn’t feel I needed to go to the hospital unless things got worse. He agreed with me that, because of my immune system problems, it was best to keep me away from the hospital as much as possible. That was a relief. The shock was the way he treated me. Instead of assuming I was exaggerating, he took me seriously. He said more than once that it was good I called. He told me how impressed he was with the way I was responding to his questions and monitoring my situation. He couldn’t have been any more perfect.

My current doctor is supposed to be the best, but I haven’t been thrilled with him. Now I’m thinking about switching. I might be much better off with whoever belongs to the voice I heard over the phone last night who was calm, reassuring, supportive, and clearly knows his medicine, too. I don’t have to decide now, but I’m definitely going to give this some thought.

As for my own saga, another 1/2 hour or hour after I got off the phone and had texted an update to my aunt and uncle, my symptoms eased enough that I was able to doze off. When I woke up, I felt much better. I dozed again, and this time when I woke up I felt ok. I moved from the couch to my bed, and slept a deep sleep until morning. I’m spending the day resting, just like the doctor ordered. It’s another gorgeous day outside and a friend invited me to a barbecue, but I don’t mind missing it. I’m just happy to be feeling ok (though tired.) Today has been all about computer solitaire, movies, tv, and crochet. But tomorrow might just be about researching that doctor.


How to dress for a new doctor

July 30, 2015

There was a time when I never thought for a second about what to wear to doctor appointments. I just wore whatever I was going to wear that day anyway.

Then for a while I thought about it in small ways. Are the sleeves easy to push up for a blood draw? Is this shirt loose enough to get a stethoscope underneath easily? Is the outfit fast and easy to get off and back on? 2015-07-30 10.41.51

At some point, things shifted. I still think about those small things, but now I have to consider what my appearance says to the doctor. If I dress too slovenly, they’ll think I don’t care about myself. Or they’ll just have an unconscious dislike for me. If I dress too well, they’ll think I’m faking it when I talk about my symptoms. I don’t want to look bad, but I don’t want to look too good, either.

I’ve heard from friends with chronic illness that they have this same problem. They want to look decent, but maybe they don’t put up their hair or they skip the makeup or they wear a t-shirt instead of a button-down. And like me, they feel ridiculous for worrying about what they wear when what really matters is their health, but they also know much one will be impacted by the other. So they plan carefully.

I’m seeing a new doctor today. I’m excited to see him. I scheduled this appointment 2 months ago, I wrote up my notes, I have my list of questions, I read the book he wrote and I’m bringing it with me, and I’ve got all of my medications and supplements in a bag that I can bring with me so that he can see exactly what I’m taking. I’m ready. Except for my clothes. I’m still in my pajamas because I just don’t know what to wear. How absurd!

Do you worry about what to wear to appointments? Do you feel it affects how your doctor perceives you and treats you? What has your experience been? Please let me know in the comments!


The problem with SSDI’s trial work program

July 28, 2015

When you’re on SSDI (social security disability insurance) the presumption is that your disability prevents you from working. Ok, I get that. But what if you want to return to work part time or full time? Ah, that’s and interesting process.20120809_220808

Everyone gets a different amount of money through SSDI. The formula is based on how much you paid into the system, and that in turn comes from the salary you earned and over how many months you earned it. You might be getting $900 per month or $1800 per month. If you’re on SSDI for more than 2 years then you’re eligible for Medicare, which is health insurance. You’re also more likely to be eligible for other benefits.

Now, what happens if you start doing some work? Well, at a certain point the SSA (Social Security Administration) decides that you’re able to support yourself. That point is a set number. It’s not a percentage of your benefit. Nope. It’s a set number: $1090 per month right now (this can change each year.) So if your benefit is $900 and you start earning $1100 then you lose SSDI and Medicare, but that might be ok with your extra income if you’re earning $1100 every month. You might only earn it occasionally, though (more on that in a bit.) But if your benefit is $1800 and you earn $1100, then you lose SSDI and Medicare and, unless you have unearned income from some source (like a spouse, alimony, or investments) then you’re probably screwed.

That’s how I feel now: screwed. I’m ready to do some small amounts of work, which is exciting in and of itself! I recently earned around $1100! This is very exciting! If it was all in 1 month, though, it would count towards my return to work trial period of 9 months total. Those total 9 months are spread out over 5 years, so I could work for 2 months per year, and still lose my benefits. That’s not good! Luckily for me, it was spread out over 3 months, at an average of under $400 per month. What a relief!

But wait, isn’t there something wrong with the system if I feel relieved to earn less money? Shouldn’t the goal be to get me back to work so that I don’t need benefits?

What if I make more than $1090 per month for 3 months this year? Then what if the same thing happens again next year? I’d stop working altogether so I wouldn’t risk going off benefits. I can’t afford to have 0 income, and I definitely can’t afford to lose my health insurance!

Instead, the system should encourage me to work part time with the hope that I would build up to more part time work or even full time work! The trial work period should only cover a short timeframe, like a certain number of months worked in a 1 or 2 year period. There should be a grace period for Medicare.

But with the current setup, I’m scared to attempt to go back to work. What if I try to work, lose my benefits, and then fail to continue working? Yes, there’s a grace period where I can get back on benefits, but it’s short. And I’m scared. It took me more than 2 years to get on SSDI in the first place. I can’t take a chance on losing it.

And that’s why the system doesn’t work.

Have you felt the same way about SSDI? How do you handle it? Do you hold back on the amount of work you do in order to stay on benefits?


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