Disappointment

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I am so disappointed. I have been looking forward to this doctor’s appointment since we booked it. I was thinking that maybe we could finally address some of the pain I’ve been dealing with. If I could get rid of some of the sensitivity in my abdomen and hip, inner thigh, back area, I would go a long way toward being more mobile and living quite a different life, I think!

But the doctor wasn’t there.

To be fair, I think the issue may have had something to do with him being beholden to another agency. They didn’t tell us anything, but you know what it’s like after a number of years, you learn what to listen for. So, listening in, and knowing he was having trouble when he booked a room for our appointment, he likely didn’t have a listing of his patients (confirmed) when he arranged to see people. Our theory is he wasn’t being paid by the hospital, ¬†but by another agency, which had say over his schedule, just based on what whispering we heard. His interest seemed to lie in a certain area of pain management, which is why he wanted to see these particular patients. He is keen, eager and excited to try to help. I love those kind of doctors. He was so kind at the appointment earlier. The plan is to catch up next appointment, which is April 4, or they will contact my husband if the doctor can meet earlier. I know I jinxed it when I said I didn’t want to go to the doctor this morning! ūüėĀ

My husband is at the eye doctor himself, his eyes seem to be clearing up. It’s Friday. I’m unwinding. Going out with a friend this weekend, although I don’t know what we’re doing. Probably lunch!

Found an old photo of me, probably at my heaviest weight.

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Me, with author Lindsay Kelk

I was probably just under 300 lbs here. It’s cropped weird, but I had to get all of me in there. I stopped at just over 300.

And me this morning.

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Waiting for the doctor…

204. I’d like to go to 170, but I’m not all anxious about it in case I get sick again. Sorry about my glamorous outfit, but hey, it’s the doctor! Also, why didn’t anyone tell me my boobs were so huge? Ugh! I need a better bra.

I will do a post about my weight gain/loss another time. Short, though. I used to be quite thin. Medication can do quite a number on your body.

I forgot to mention, I was so busy the other day, I started getting changed, but I only got my pants off! ūüėĀ I wasn’t doing anything too earth shattering, just easily distracted.

Have a great day!

Microaggressions and Ehlers-Danlos Syndrome

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What are microaggressions? They are those questions, statements and comments, that might not be too annoying if they happened once, maybe twice. Unfortunately, they seem to happen often. These are the ones that seem to happen most to me. I’d love to hear yours!

When I’m well enough to travel on my own, ¬†I often travel by cab. I’ll explain more on this in another post. Nearly every time I step into the cab, the question after,”Where to, Miss?” is nearly always,”Were you in a car accident?”! Of course, I was not in a car accident, I used to explain that I have a chronic pain condition. For a while I told them I had Ehlers-Danlos Syndrome, you can guess how well that went over! No one had heard of it, of course. So now I just say either I have a connective tissue disorder, or should genetic condition. That usually gets me through.

The next thing that comes up is always medical advice. So many cab drivers have pain, I get it. They know. They have great advice. I have learned so much wisdom from these men and women. But so help me, if one more gives me an exercise plan to follow, I just might scream! It always starts with a You know you just have to… However, I will be working with a very qualified physiotherapist when I am well enough to get there on a regular basis, and his assessment last time I saw him was he couldn’t make me stronger, there would be no ‘working out’ but I needed to work on my prioception (sense of self in space) and stamina, and he can help with that. Taking advice from someone unlicensed whom I don’t even know, would not only be dangerous, ¬†it would be irresponsible.

Vitamins and herbs are what comes next, always! I haven’t been bothered by this one too often, but hoo, boy! When it happens! I take some vitamins for overall health. A multivitamin, because EDSers notoriously do not absorb vitamins and minerals very¬†images-2-1. I¬†take Flaxseed and Vitamin E for dry skin, and general benefit, and I take dried cranberry because my pharmacist recommended this as a way to help defeat the raging full body yeast problems I was having trouble with for the year prior. They went away, and it’s not expensive, so, okay! Obviously, ¬†I’m not completely opposed. But when someone says it’s going to ‘cure’ me? Or I have to take hundreds of dollars worth? Then I have a problem. ¬†One time I had hailed as cab, it was at night, the driver had given me a sales pitch, I had demurred, but we were about three blocks from my house, it’s all residential now. Remember I can barely walk, it’s cold, it’s going to be tough for me go get another cab if I stop this ride. He shoves the phone at me. He had been talking to someone in another language. ¬†It turns out it’s some guy who is trying to set me up with a monthly recurring supply of vitamins and wants my credit card number! Yikes! I couldn’t say I didn’t have one, as I needed to pay with it. Good thing my husband was waiting up for me and noticed it was taking too long for me to get out of the cab, and came outside to help. They backed off when they saw him. He’s tall at 6’5″ but not hugely imposing. You bet I complained!

The next one I don’t get so often anymore. Pity. That’s: “You’re too young to use a cane!”. I’m sure I look younger than I am because I’ve been cooped up in my bedroom for years and haven’t been in the sun. A stellar argument for sunscreen if I’ve ever heard one! But I’m sure people mean I’m not 80 yet. I sure feel 80, although that’s pretty ageist because how is 80 supposed to feel? Is that old? I know people who have been old sticks in the mud at 20 and people who have the flutter of youth into their senior years. It’s all mindset. I don’t see what a mobility aid has to do with it, I’m just trying not to fall down.

The one I hate the most is,”You’re so lucky your husband hasn’t¬†left you!”! And if I’m extra good they tack on: “yet!”! Isn’t that lovely? I love people. I know they mean this in a sincere manner. There are so many stories of people getting ill and having a spouse not being able to cope. It’s tragic. My husband is exceptional as a human being, whether I was ill or not, and you know, I wasn’t totally healthy when we got together! *GASP* I KNOW! It’s okay! Do you need to sit down? This might be shocking. Ready? He seems to like me for me. Yes. Not for what I can do for him. We’re a partnership, a family. Weird, right? I get it. We’ve actually talked about splitting up. I’ve had some really bad days and encouraged him to run for the hills. He realizes he would have sole custody of the kids. He is not going anywhere. ūüėÉ

My favourite, “You should probably lose some weight.”! I’ve heard this from so many doctors. How do they think I got fat in the first place? If I could move, I would be exercising, walking, moving! It’s not like I’ve always been fat, as a teen I had anorexia and was scarily¬†underweight. (I still have anorexia, I am in recovery). It starts with the medication. Every single one puts weight on, it seems. Then motility issues, and then add in I’m pooping every 3 weeks. I finally started with MyFitnessPal¬†to see how much I was actually overeating, and I was averaging 900 kcal a day. Not good. Not one of those doctors offered any solutions beyond the order of ‘lose weight’. I finally asked one doctor why? And she said it might help relieve the pressure on your joints so you will feel better. I asked the next doctor about this theory and he laughed. He asked me if I felt better when I was thinner. I said no, not really. It didn’t seem to make much difference. ¬†He said, “don’t bother, then, you have enough on your plate!”. I sometimes suspect doctors offer this when they don’t have any other solution. That way, the onus is still on you to perform. It sure beats the therapist I had who interrupted a tearful story of mine to ask if I’d ever considered gastric bypass surgery. ¬†I was 275 lbs. I hit 300 lbs in 2015, unfortunately. ¬†I felt awful. I started again with MyFitnessPal, made sure I had enough food at 1600 kcals and my weight started to drop. 40 lbs in 2015. Got sick in 2016 and lost 60 more. Just weighed myself for the first time since Christmas. ¬†I have been eating a lot more because I haven’t been as nauseated, so I suspected a gain of 15 lbs, I was hoping not more than 20! I lost 2! I’m so shocked! I’m now 206. I still want to lose 30 more as I’ve mentioned, ¬†but I’m not desperate to do so, in case I get sick again like I did last year when I lost 40 lbs in 3 weeks. I’m 5’8″. Sorry for the tangent, anorexia takes over sometimes. Give me any point in my history, ¬†basically, ¬†and I can tell you what I weighed.

The woman at the eye doctor who won’t let me sit down. She is a lovely lady, but every time I walk in she stands between me and the seats and wants to chat. She won’t let me sit down no matter how many times the first thing I say to her is, “I need to sit down right now, my back is killing me!”! Sigh.

The most fun I have is with the people who I chat with at doctor’s offices and labs and goings who ask what is wrong with you. I’ve had both very wonderful and very weird conversations¬†with people. The best was the woman who asked what was wrong with me, and I told her I had something called Ehlers-Danlos¬†Danlos Syndrome, ¬†it is a problem with my collagen and connective tissue. “Oh, I have that!” She says. She was older than I am and didn’t seem to be in much pain so I was curious. We chatted for a while, I come to find out the silent she is referring to is high cholesterol! But it’s really similar, in some ways…?

Hope you’re having a great day! If you like it, please give me a like, comment, or help me improve! ūüėć