Michelle

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“I’m in school for yoga teaching/training and dance. [I’ve] missed quite a few classes. It’s supposed to be one session of twenty classes, and I have to do two sessions to get all the classes. It [yoga] helps with the breathing, kind of for pain management as well as understanding my body and its limits. Gaining more awareness of my body as well as helping with blood circulation and flexibility.

I do a lot of volunteer work, so not actually working. I’m on disability, so any of the jobs I do are temporary and, like I said, these are volunteer jobs through, like, the AIDS Foundation of Chicago, Human Rights Campaign, and actually this summer. I’ll be volunteering as a counselor at the sickle cell camp, the Northstar Reach.

I’ve been working since I was 17 years old, had my first major crisis when I was 18. I was basically sick on and off at least twelve times a year, major hospitalizations. I had a stroke when I was 20, more than a dozen DVTs (deep vein thrombosis) and pulmonary embolisms respectively, so it’s like twenty-four total. I’ve also had a blood clot in my heart that was actually discovered while I was at work because I passed out at my desk. I was a store manager for four years and then went to an entry job at Guaranteed Rate mortgage company. So, I didn’t have to be on my feet that much, but that only continued to make my blood clot more because I wasn’t moving.

On a daily basis, hydrated is key, drinking water. Even if I can’t get outta bed, I keep bottles of water in the bed or close to me. The breathing exercises, meditation,  yoga. Also, a ton of medication, including hydroxyurea. As well as a scheduled pain medication, long-acting methadone for the constant pain and Dilaudid for breakthrough. But it’s still scheduled because taking it more frequently like it was prescribed didn’t work when I was going to school or work because I would be passing out at work, getting really tired.”

To other people who are living with sickle cell

“Just become as educated as you can about your illness and your body. And just dedicate yourself to working with your body, with yourself, and your providers to make sure that you have a plan that’s best for you.

I drive all the way to University of Illinois at Chicago on Taylor Street because that is the only emergency room or sickle cell acute care that I know understands my pain, understands my sickle cell, and will treat me the way I need to be treated in crisis. But there have been situations at this particular hospital and others where they treat me like I’m seeking pain medication for fun or for recreational purposes; or because I don’t cry very easily anymore, I’m not actually in pain; or because they can’t quantify the pain, it’s not there. They can’t see it on a test, they can’t see it in my face, it’s not there or it’s not bad enough for me to receive the type of treatment that I need or that I’m used to. [They] are basically discriminating because they might have had a bad experience or read in a book that this is how certain users of this particular drug might react or how certain addicts might react, but they’re not understanding that this type of pain is chronic. If I cried every time I was in pain, I would dehydrate from all of the tears. It’s very hard to get people to understand what this pain is like and what it looks like on any given day.

It’s not contagious. You can’t get it from having sex. There is no particular look of someone with sickle cell. I’ve lost some friends because they said, “Oh, you’re too full-figured to have sickle cell” or “You don’t have yellow eyes” or “Your skin is too clear to have sickle cell.” It’s like, okay, they might be slimmer than I am or have jaundice and I didn’t, but did they have a stroke at 20? Did they have more than twenty-five blood clots? Did they have a blood clot that nearly stopped their heart?  You can’t look at me and tell. I really wish that people would understand that this is what you would consider one of those invisible sicknesses. There will be side effects that you can see eventually, but not necessarily, not all the time.”

On what gives Michelle hope

“The staff has gotten better as far as the nurses and whatever, but my doctor is literally so good to me. He understands me. He never denies a request, even if he…He just wants to understand why I’m asking for this, and if it’s something that is not feasible or it isn’t right at that time or if it’s not right period for me and my body type or our plan, then he’ll help me understand and give me an option that is right. So he never flat-out denies what I feel I need. He never makes me feel like I’m ignorant or I’m stupid because I don’t understand, or if it’s something about my body that he knows better than I do because he’s a professional, he never makes me feel like he’s patronizing me. Like he’s talking down to me, being condescending. It’s definitely a wonderful feeling to have someone that is above everyone else that understands you and will work with you. It’s been situations where I’ve gotten into it with the nurses because of the way they treated me and was able to bring it to him and he took my side. Like, “She’s still one of our patients. If anything, you’re supposed to be helping her understand the policy and why we can’t do what she’s asking you to do.” Typically, it’s not that they can’t do it, it’s they don’t want to. It’s been a lot of different situations that definitely made me feel hopeless with sickle cell, but that’s where I see hope – in my actual doctor.” – Michelle, SCD hgb S with Beta-Thal

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