Please don’t suggest shortcuts unless you’re going to help pay for them

October 16, 2013

People like to offer advice. They want to help. I get that. I want to help others, too. But when the advice involves money I don’t have, and I point that out, arguing the point really doesn’t help.

Example 1: “Why don’t you order groceries to be delivered?”

This is suggested to me a lot. Yes, that would be great. It would save me time and energy and effort and the pain of walking and driving and reaching and carrying. Perfect solution. But it’s expensive. Only the more expensive grocery stores offer this service, and then they charge extra for this service. I just can’t afford it. I point this out to people and too often they try to argue that it would be worth it anyway. They don’t seem to understand that I am living off of disability payments that don’t cover all of my expenses as it is, and that might be cut off any time the insurer feels like it (well, that’s essentially the case.) So yes, grocery delivery would be incredibly helpful, but that doesn’t mean that it’s an option for me. I wish I was. I really do. But it’s just not.

Example 2: “Why don’t you use a laundry service?”

Wow, that sounds nice. Someone else would wash all my clothes and linens. I’d just have to prepare them and put them away. I’d love that! No more lugging everything down the hall, into the elevator, to the basement, and into the machines, then returning later to put everything in the dryer, then returning again even later to lug it all back up to my apartment. I would even have to fold clothes. It sounds heavenly! But I balk at the laundry prices I’m already paying: $2.50 to wash each load and $2.50 to dry each load, which is why I let some clothes dry on racks in my living room now instead of paying for the dryer. If I have trouble paying those prices, how am I supposed to pay even more to have someone else do my laundry? People try to argue that it’s not that much more to pay someone else, and it will save me money on detergent, etc. Um, I don’t pay that much for detergent (just how much do you use?) Besides, if the current cost is too much, a higher amount isn’t magically ok. It just doesn’t work like that.

Example 3: “Why don’t you order in for dinner?”

Oh, don’t get me started. It is so much more expensive to buy a restaurant meal than to cook at home. Yes, it would do wonders for saving energy and reducing pain on the days I need it most, but that doesn’t mean I can afford it! Plus, it’s just not healthy – I can’t be sure what’s in those foods, and my health is the most important thing. I have a list of easy meals to make from ingredients I always have on hand and I grow the list whenever I can. Failing that, when I feel well enough I often cook in large quantities and freeze the extras, so I can always pull something out of the freezer. People try to argue that it’s worth it to order in. Maybe it is to them. Sure, you with a job and a steady income might eat out sometimes. Good for you. But you can’t assume we can all do it. There are financial limitations, and this is one of mine.

There are so many more examples like this. I know people mean well. They really do. And I don’t mind the suggestions. But when I say I can’t afford it, that means I can’t afford it. Trying to suggest it’s “worth it” just doesn’t work. So my new response will be that if they think it’s that important, they should be offering to cover the cost for me. If they won’t do that, then the conversation is over. Kaput. Finished. I live in the real world, and in the real world I’d rather pay for medical care than for grocery delivery. Yes, that is a choice I must make. It’s a personal choice. And I’m certain I’m making the right one for me.


Should I try to trust doctors?

October 10, 2013

I’m in a bit of medical flux at the moment.

I have a naturopath who’s very helpful and knowledgeable, but thanks to absurd politics, naturopaths aren’t licensed in Massachusetts. That means she can’t order blood tests or prescribe medications. Great. I haven’t had a primary care physician (PCP) that I’ve trusted in many years, and in hindsight, none of them were very good anyway, and some even did harm. I have never had a “good” PCP. I have some specialists who are good, but they aren’t in the specialty that I need right now. In a few weeks I’ll see a new PCP, but I’ve never gotten any value out of PCPs. Still, they are necessary for insurance referrals, so I will see the PCP and grade him based on his willingness and ability to refer me to good specialists. And when he does refer me, should I trust the new specialist?

After many years of bad health, I’m finally ready to try new treatments that could really help me. But these are all based on research that I did myself. I then ran that research by my doctors and naturopath and they all agree this is the way to go, but I had to figure it out for myself. I no longer expect a doctor to give me any answers. That means that right now, I am only looking for doctors who are willing and knowledgeable enough to implement the treatment plan that I have designed for myself, and to help catch any potential problems and fix them.

The thing is, what if something new comes up that I haven’t already researched? I just can’t trust a doctor to catch it and treat it properly. It could be big or small, but I won’t trust them. I know that trust is essential, but I just don’t have it for most in the medical field. I have seen my naturopath quite a bit in the last year+ and I mostly trust her, but not 100%  So then why would I trust someone new?

I don’t trust easily. That goes for friends, lovers, medical practitioners, and anyone else I get close to. I don’t give out trust; it has to be earned. My friends have all earned my trust. If they hadn’t, I wouldn’t consider them friends. So have my lovers. If they hadn’t, I wouldn’t have slept with them. But I don’t have the luxury of visiting doctors a bunch of times and letting them earn my trust. Most of them don’t seem interested in earning it, and the insurance won’t pay for it (nor will my bank account.)

The truth is, I have been screwed over by doctors, health insurances, and medical facilities so many more times than I have covered in this blog. Tests I needed weren’t run. Abnormal test results were ignored. Surgery was performed unnecessarily. I was blamed for my own health problems. I was ignored. I was embarrassed. I was belittled. I was outright lied to. Necessary referrals to specialists weren’t given. Important medications were denied. It’s not that I won’t write about it all, it’s that I can’t. I can’t even remember it all. There’s just too much.

So after all of that, how can I be expected to trust a new doctor? But then, what other choice do I have?

By the way, I set out to write about what I am looking for in my new doctors. I need to think about this before I see them in a few weeks so I really tried to come up with what was most important to me. I couldn’t come up with a damn thing because no matter how I thought about it, it always came back to the same problem: I wouldn’t trust them to help me.


From unconsciousness into pain awareness

October 6, 2013

Last night I went to bed thinking about the probable rain we’d get today. I made plans with friends a month ago, and they involved being outdoors today, so I was really hoping it wouldn’t rain.

Normally, I would wake up on a rainy Sunday and immediately enjoy the quiet, the peace, that we only get on rainy

Why must you hurt me, thumb?

Why must you hurt me, thumb?

Sundays in this neighborhood. No cars, no trucks, no shouts. The sound of rain against my bedroom windows. Heaven. Normally I’d enjoy that. Today was different. You’d think I’d have first thought about my ruined plans, but no.

The first thing I noticed was pain. I tried to go back to sleep but couldn’t, which made my brain wake up a bit – why couldn’t I sleep? The pain wasn’t that bad, and I’ve gotten good and sleeping through mild to moderate pain over the past 20+ years. I slowly realized that the pain was in a new place. Huh. That’s not good. I figured that’s why I couldn’t sleep. Every time pain appears someplace new, it takes me some time to learn to ignore it. As I lay there in the dark, I started to realize that this pain was different. Instead of pain in my joints, it was in my thumbs, above the top joints. This was weird. And it wasn’t the usual pain, this was a throbbing pain. And it was both thumbs. I never get symmetrical pain, so this worried me. And suddenly I was a bit more awake.

Cuddled under the blankets, I gave it some thought. What did I know? I knew that I had a new kind of pain, in a new place, and it was symmetrical. I could call my doctor, but I doubt she could do anything by phone. And the office is closed on weekends. Was it worth going to the hospital? Nope. I could wait. If was still a problem tomorrow, then I could call and be seen. But I still doubt they could do anything. How worried should I be? I had no clue. Maybe I should go back to sleep? I tried, but no luck.

And then I noticed that it was raining. It was quiet and peaceful. Oh shit! My plans had to be cancelled!


Some symptoms I hope to “cure”

September 29, 2013

A couple weeks ago I wrote about wanting to improve my health. I’m hoping to start a new treatment soon, and there’s a good chance it could fix a lot of my symptoms. I don’t know if I’d consider it a cure exactly, but it should help.

The truth is, I can only guess at which symptoms are related to my thyroid condition, so I can’t be sure which could potentially be helped. And then of course, I don’t know how well the medication will work for me. But what gets to me is all the symptoms that could potentially be related to my hypothyroid that I didn’t know about. I figured my fatigue might improve, but by looking at symptom lists and following online patient groups, I’m realizing just how much else could possibly improve. So here’s my list of symptoms that I have reason to believe might improve on the new medication. I sure hope I’m right!

  • Fatigue
  • Joint point (some of my pain mostly likely isn’t related to the thyroid problem, but some of it could be)
  • PCOS
  • Raynaud’s
  • Foggy thinking
  • Pins & needles feeling in various parts of my body
  • Extreme sensitivity to heat and humidity
  • Sensitivity to cold
  • Difficulty regulating body temperature (once hot I stay hot, once cold I stay cold)
  • Dry eyes
  • Feeling like my arms and legs are dead weights
  • High cholesterol
  • High triglycerides
  • Heart palpitations
  • Digestive problems
  • Unusually dry patches of skin
  • Acne
  • Weight instability
  • Fluctuating sex drive
  • Memory troubles
  • Trouble concentrating
  • Tinnitis
  • Low blood pressure
  • Sleep problems

Of course, there are more hypothyroid symptoms. You can find some of them on this list. But these are the ones that I’ve got and that I hope might go away. Can you imagine? I can’t. I’m scared to think it’s even possible. But what if….? What if these went away/improved? What if I got better, even just partially? It could be incredible.

I have to wait several more weeks at least before I can try the new medication, and then it could take months before I know what, if anything, it will fix. But just having hope after so many years of having none is already an amazing gift. I sure hope it works. I hope that at least some of these get better. I’ll let you know soon….