Why I prefer the virus

August 25, 2016

A few days ago I wrote about some symptoms I was having, but I didn’t know why. Now I know.

When I felt fatigued, brain fogged, and just “off” for the first couple days, I assumed I was just having “bad” days. After 4 days I was concerned. What if this wasn’t just my typical “bad” days? I wasn’t getting better. What if this was a long-term issue? That happens all the time, after all. I get a new symptom, or an old symptom becomes worse, and it stays that way for months or even years. Crap crap crap!

On day 5 I was fed up and I emailed my Naturopath. It was a Sunday, but I felt better having reached out anyway.

The next morning she wrote back: there’s a virus going around with my exact symptoms. I wrote back that I don’t have any other virus-like symptoms. No runny nose, sore throat, or upset stomach. She assured me this is what the virus is. Extreme fatigue. I decided to accept that. And then something interesting happened.

I rested.

For the first few days I had tried to continue my normal life. That means trying to “be productive” and “get stuff done.” Sure, I might be doing a lot less in a day than a healthy person, but I was doing it nonetheless. I was working on blog posts for this and another site, I was thinking about doing my laundry (though no actually doing it,) I was trying to clean up around the apartment. But I was failing at all of it. I just couldn’t manage.

Then I spent a couple days not doing anything and feeling guilty about it. I’d accepted that I needed to rest for a few days, but there were so many things I should be doing. I even went out briefly one day to get a prescription and some groceries. I felt bad about canceling plans with friends. It sucked.

Once I was told I had a virus, though, I rested without guilt! It was lovely! I watched tv, crocheted, listened to audio books, and read. My only responsibility was to keep myself fed, and I did that with simple meals: eggs, leftovers from the freezer, sandwiches. I washed dishes only as needed.

If I’d rested from the start, the virus probably wouldn’t have lasted so long. It was 8 days. Today is the first day I feel 100% over it. But I probably would have felt better days ago if I’d only rested from the start.

The thing is, when you have chronic illness you can’t rest every time you feel bad, because you’d never do anything. Even when my fatigue was at its absolute worst, I did stuff. Or I tried to do stuff. Or I felt guilty about not doing stuff. Because I felt that way every day, so pushing through was the only way to get shit done.

But a virus is different. It’s temporary, and we know it’s temporary. Resting with a chronic illness, only feels good in the moment, but resting with a virus means overall improvements in health. It’s worth resting if it means I’ll get better, right? So I rested.

And on top of that, there’s the sympathy! Family and friends were checking on me every day. That doesn’t happen with chronic illness. And I get it. Checking on someone every day for a week is one thing, but you can’t check on someone every day for the rest of their life. Still, it felt good to know people were thinking about me and wishing me well in the moment.

So given the choice, sure, I’ll take the virus every time! I felt only slightly worse that usual, and in exchange….

I got to rest without guilt!

What about you? Do you feel guilty when you rest? Do you find it easier to have a virus that you know will go away? Or are you the opposite? Please comment and let me know how you feel about it!

4 Comments | Expectations, Fatigue, Healthcare, Isolation, Limitations, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Exactly the same and completely different 5 years later

July 27, 2016

birthday-cake-1320359_1280Happy birthday to us! Last week was the 5 year anniversary of Chronic Rants. And when I look back, it’s hard to believe how much has changed and how much has stayed the same over the last 5 years.

I still have the same symptoms as I did then, it’s just the severity and frequency of various symptoms that has changed. I no longer work full time at an office, but I am trying hard to start a small online business that I can do part time from home. I still encounter all sorts of ableist bullshit, though it’s usually in different ways than before.

I suppose the biggest change is my perspective. 5 years ago I was struggling, but I assumed that I would continue working. I assumed my health would continue to slowly get worse. Little did I know that just a few short months later I would be leaving my job for a “temporary” break that would become permanent. I had no idea my health would get so much worse so fast.

But this blog has also helped to change my perspective. Writing about my illnesses has taught me a lot. Talking to you through emails and comments has taught me more.

I stand up for myself even more than I did before.

I am more aware of other illnesses, other medical systems, other cultures surrounding illness and disability.

There are many chronic illness blogs out there. I read a few before I started writing my own, and I have found many more over these last 5 years. The online communities are so important for all of us.

Now I wonder where I’ll be in another 5 years. Will I have finally found my fur baby? (I’m really hoping that will happen in the next year!) Where will I be living? How will my health be? Will I be able to travel again? Will I be working? Will I be on benefits? Which symptoms will be bothering me the most? Which will be worse? Which will be better? I have so many questions, and all I can do is work to push my life in the direction I want it to go and hope it goes at least a tiny bit according to plan.

Thanks for joining me on this awesome journey!

6 Comments | Expectations, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Getting good doctors isn’t about luck

July 16, 2016

I lied. It’s a little about luck. But mostly it isn’t. Mostly it’s about research and persistence and organization and all sorts of other things.

I have some really great doctors. I feel so lucky to have them. My friends with chronic illnesses say I’m lucky to have them. But the truth is, luck had little to do with it.

I’ve worked damn hard to get this line-up of doctors on my side, and I had to go through a lot of shitty doctors over the years.

First I spent years in a system where I could only see doctors within that group. Twice I got referred to specialists outside that group because they didn’t have anyone to help me, but each time I only saw that specialist once. And in hindsight, I realize that those specialists had really been on to something each time. Damn. My diagnoses got delayed for many years because I played by the rules and stayed in that group.

Then I moved, and I didn’t live anywhere near that group. Since I was a student (in graduate school) I was able to stay on my parents’ insurance, and since I was out of state I was allowed to see another doctor and insurance would reimburse me. I decided to use this to my advantage. It was a conscious decision.

Back then I thought that the pain was my only treatable symptom, so I went on a national arthritis group’s web site and saw that they mentioned rheumatologists. I’d never seen a rheumatologist, except for one of those outside, 1-time referrals, and all he did was rule out Lupus. Yes, I’d had more than 10 years of joint pain and hadn’t been examined by a rheumatologist. It sure was in a shitty system.

I found a list of local rheums, made a lot of phone calls, found one that my insurance would reimburse me for, and made an appointment. Within a few weeks I had my first diagnosis: autoimmune disease. Shameful that it took more than 10 years, but I finally had it! It wasn’t in my head!

I was lucky. I was also opportunistic.

A few years back it was obvious I wasn’t absorbing iron properly. I tried every type of supplement. I ate red meat and spinach. But my ferretin was still way too low. I asked around and researched and found a great hematologist. On my way to the appointment, I realized I never got a referral from my primary care physician! Without that referral, insurance wouldn’t pay for it. Damn! So I called up the office and they wouldn’t give me the referral because this doctor was at a different hospital and they got a lot of pressure to only give referrals to doctors at their own hospital. But I already had this appointment, I was in the car already headed over, and this guy was supposed to be really good. She wouldn’t budge. So I fired her. I immediately looked for a new doctor.

In case you’re wondering, when I arrived at the hematologist’s office I was basically in tears. I had waited 6 months to see this doctor, and now I didn’t have a referral. They called out their billing specialist from the back office. He was a nice guy and reassured me that they’d work it out. I saw the hematologist. He ordered iron infusions and they helped. The billing specialist also recommended his own PCP, who I switched to immediately. (That didn’t work out, but that’s another story.)

I didn’t liked my doctor, so I found someone else.

Years before that I wanted to see a specific endocrinologist, but my doctor wouldn’t give me a referral. I tried other doctors with no luck. So I reverse engineered it – I called that endocrinologist’s office and asked which doctors give referrals to him. His administrator wasn’t allowed to tell me that, of course, but she said that she could tell me that she and her coworkers all saw Dr. J and loved her, and that they recommended her. Sure enough, I loved Dr. J, and she gave me that referral to the endo.

I went to a lot of trouble to find a doctor who would give me the specific referral I wanted.

Now I just started with a new doctor who I love. I love the approach of his entire office. I love that we have conversations about my treatment as equals. I tell him about research I’ve read and he listens respectfully, then counters with his own argument. He’s glad that I debate with him. I wanted to see him years ago but I had doubts about leaving the hospital network I was in. I should have done it anyway. Now my PCP can’t read the notes or tests from my specialists and they can’t read his because they’re in different hospital networks. That means I have to be the one to ferry records back and forth. It’s a pain in the ass, but it’s worth it. I love this guy, and I’m certain my treatment will be much better. I waited longer than I should have, but at least I finally made the switch.

I took a chance and it was worth it. Sometimes it’s not, but I have to try.

I know that some people have fewer options. There’s only one specialist within 50 miles. Or their national health insurance assigns doctors to them and they aren’t allowed to switch. But I also know that sometimes we follow rules or conventional guidelines when we shouldn’t. Sometimes we have to find loopholes. Sometimes we need to ask for help. I have found many workarounds to the “rules” over the years.

It doesn’t always work out in my favor. I admit that. But I also know that almost every single health improvement I’ve had has been because I did my own research and pushed to find the doctors who would give me the tests and treatments that I felt I should try.

I have a kick-ass team of doctors now. But that didn’t happen by accident. I worked fucking hard to make it happen.

Lucky me.

What has your experience been? What will you do to make your own luck? Please share in the comments. We can learn through each others’ experiences!

10 Comments | Decisions, Expectations, Frustration, Healthcare, Medication, Rants, Raves, Support | Permalink
Posted by chronicrants

Cooking without a stove

July 1, 2016

I’m lucky. I have a fairly decent kitchen with a stove and oven that work well. I’m thankful to have them! Still, when the heat and humidity of summer come along, I can’t bear to turn on the oven at all, and I rarely use the stove. But a girl’s gotta eat! What to do?

Whether you’re heat sensitive like me, you don’t have a stove, or you’re just not a cook, I bet you can relate to my dilemma. I can’t eat out much. It’s not good for my health or for my wallet. Ditto for frozen convenience meals. I eat salads and sandwiches, but I get tired of those long before the cooler weather returns. So I’ve gotten used to cooking without the stove.

I was thinking about this last night as I prepare burgers, fries, and steamed veggies. It wasn’t too hot, so I could stand to be in the kitchen (which doesn’t have air conditioning,) but it was warm enough that I wasn’t about to turn on the stove. So instead, I cut up some potatoes and put them on the toaster oven pan with salt, pepper, and olive oil. Then I put them in the toaster oven set to bake at 475 degrees. Voila: Roasted potatoes!

The vegetables were easy. I put some frozen green beans into a bowl, covered it, and microwaved it for 2 minutes.

The burgers were easy because I had a Griddler. This was a very nice gift last year. A George IMG_20160701_102445.jpgForeman Grill would do the same job, I assume. It emits some heat, but not as much as a stove and a hell of a lot less than an oven. I put some garlic, scallions, salt, and pepper into a bowl and mixed it up, then added the beef. I made 4 patties, put them on the Griddler, set the timer on my phone, and sat on the couch to rest.

Dinner was delicious, healthy, and didn’t heat up the apartment!

A friend gave me the idea of making rice and black beans, then throwing avocado and salsa on top. Yum! Since I don’t have a rice cooker, I do have to use the stove for that. The good part is that I don’t have to be in the kitchen! I try to make rice on a cooler day, and I leave the kitchen while it’s cooking. It’s not perfect, but it mostly works.

And then there’s my favorite: the crockpot, also called a slow cooker. This was an excellent housewarming gift a few years back. A friend introduced me to a series of crockpot cookbooks, and I found the author’s website. It’s filled with delicious recipes that can all be made gluten free!

I’m a huge fan of my crockpot. You throw in the ingredients, set the timer, and walk away. IMG_20160701_102502.jpgWhen you come back 3-10 hours later (depending on the recipe) your food is all done! There’s something so great about tossing in ingredients, going out for the day, and coming home to an apartment that smells amazing. Again, it emits some heat, but not much. And I don’t have to be in the kitchen while it’s on.

Unfortunately, I do have to be in the kitchen without air conditioning while I do dishes, but at least the stove and oven haven’t heated up the space!

This isn’t perfect, but it gets me through the summer. If you struggle to cook without a stove and you have relatives who sometimes ask you want you want for your birthday or for Christmas (or who might be open to some hints) maybe a kitchen gadget is the way to go.

What about you? Do you have favorite meals that you can make without turning on the stove? Please post them in the comments – I can use all the ideas I can get!

2 Comments | Fatigue, Limitations, Pain, Raves, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

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