Little by Little

I am making progress. I sometimes get down on myself and feel like I am stagnating, but then I have to remind myself how far I have come!

A year ago I couldn’t drive, didn’t have a car, didn’t have Wanda the Wheelchair, kept on having to recover from surgeries, and was still weak from malnutrition/dehydration because I had only just gotten my feeding tube. I hadn’t even been officially diagnosed with Marfan Syndrome yet! I was too weak to do physical therapy and spent most of my time at home in bed. When I did go out I had to recover for daaayyyyss afterwards.

Now I can drive myself around in a car that is all mine, with Wanda in the trunk for wheeling around destinations on longer outings. My feeding tube fuels me up so I only have to eat when I feel up to it. I am kicking ass in physical therapy (PT). And…

Yesterday I got a membership at my local YMCA! They have a heated pool that will be great for conditioning my muscles and joints. They also have the same type of exercise machines I use at PT and free group exercise classes. I am excited to keep working on my body’s strength. I am sore from working out yesterday, but I don’t feel completely wiped out like I used to.

Resting under a heated blanket this morning to soothe my achy muscles, but then I am getting back out there!

I know I still am, and will continue to be, chronically ill. I know I will still have bad days where I can’t get up. Now I just have some hope that I might have less of those days. Hope that maybe I can finally go to college someday.

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Seeing A New Doctor Is Like Going On A Blind Date…

…but they ask you to take your pants off without even having the courtesy to buy you dinner first!

I saw an orthopedist this week. I always feel the need to impress a new doctor. I want to appear informed but not overly pushy about my treatment options. At least this doctor knew what Marfan Syndrome is and was sympathetic to what I have been dealing with. My xrays of my knees looked normal, it’s just the hypermobility that is a problem. More physical therapy and a new knee brace with hinges that will stop it from hyperextending.

Also saw a hand therapist to deal with my flexi-hands! She custom made me some thumb MP splints out of thermoplastic (which was super cool!) and sized me for some Oval 8 ring splints for my fingers. I need to order the ring splints online. If they help I might upgrade to silver ones at some point.

Health Update

I saw my gastroenterologist and my dietician two weeks ago. Turns out I had misunderstood some things before. I don’t have to be trying so hard to force myself to eat by mouth or wean myself off my tube feed. It is perfectly okay for me to rely on my tube for most of my nutrition and only eat when I feel up to it.

I had felt like I had to be trying as hard as possible to get back to eating like a ‘normal’ person. It was so stressful and frustrating, not to mention painful for my dysfunctional stomach.

I feel so relieved to know I can relax and stop trying so hard.

My gastroenterologist also upped the settings on my gastric stimulator implant. Cyborg tune-up!

I will be starting physical therapy soon, which I hope will be helpful. My Marfan Syndrome has been causing chronic joint pain all over my body, and it has been getting worse lately.

The summer heat has been rough, but we are getting our AC system that is older than I am replaced this week! Hurray for air conditioning! The guy we talked to about it was really nice and since I have a medical condition that doesn’t do well with heat he promised to get a crew out to us first thing tomorrow morning.

Meanwhile, J and I are going to find somewhere to hang out today that isn’t sweltering hot. Possibly a friend’s house, or a movie theatre.

When you feel burnt out

I know my last post was all about acceptance, and everything I said in that post still holds true, but sometimes we get burnt out from working so hard to care for our finicky bodies.

I just happen to be having one of those days right now. A day where I don’t want to take pills all the time, constantly drink fluids, run my tube feeds, or stay in bed resting all day just so I can go out for an hour or two in the evening. I still do the things I have to in order to care for my body (for the most part anyway) but I am much more grumpy about it than usual. I’m burnt out right now.

In a day or two I will snap out of it and go back to my usual positive self. I think right now I am just feeling mad at my body for keeping me from going to college or getting a job. I want to be out there finding my way in the world like all my friends are.

I got to see a best friend graduate from college on Thursday, and I am so immensely proud and happy for them. I am glad I got to be there to cheer them on. A small part of me couldn’t help but feel a little jealous (and then feel guilty for feeling jealous). I still want that for myself someday. I just haven’t figured out how to make it happen yet.

Whenever I have tried college in the past I would get exhausted long before the semester was over and my grades would all plummet until I was forced to drop out. That was before a lot of my health problems got diagnosed though.

I am nothing if not persistent, so I know I will find a way to do it someday. I’d like to do something in the field of medical research, help people like me get diagnosed faster and treated more effectively.

 

Acceptance Is A Powerful Thing

Some friends don’t know how I cope with having multiple health conditions. Conditions that have required daily medications, tests, procedures, surgeries, a feeding tube, and physical therapy.

Acceptance. That is how I do it. Once you find out you have illnesses that have no cure, you can be angry and spend all your time wishing this wasn’t your life, or you can accept it and start building yourself a life that accommodates your disabilities.

I have my moments of anger and frustration of course. It’s okay to get upset sometimes. I will have a good cry and then pick myself back up. Having a supportive partner and a caring mother helps.

Walking long distances is extremely taxing for me, so I got myself a pretty, green wheelchair (I named it Wanda). Some people see wheelchairs as something bad, something to avoid having to use at all costs. I love my wheelchair. For me it means freedom to go out with my friends and not be exhausted after 15 minutes. It means going to the aquarium with my partner and getting to see the whole thing.

I have trouble doing some things myself and don’t always want to have to ask someone else to do them for me. Solution? Applying for a service dog! I don’t have one yet, but I am in the application process. Having a service dog would also make me feel more confident about going out of the house on my own.

One trick I use to help myself accept my medical equipment is to make it all look cool/cute. My wheelchair is a shimmery apple green with patches I have been sewing to the back of the black upholstered seat. My compression socks are all striped and colorful. I modified a cute little backpack to carry my feeding pump around in and I bought cute tubie pads off Etsy to wear on my tube site. I have a collection of canes of various styles. My water bottle I carry everywhere has stickers on it. My wheelchair gloves have rainbow skulls on them.

My P.O.T.S doctor says he often can’t get his teen patients to wear compression socks to help with their circulation. He had never seen colorful ones like mine before. Of course they will be less likely to wear them if the socks are that weird ‘nude’ shade that is the color of a dead Barbie doll! I told him Amazon sells all sorts of fun ones. I guess athletes wear them to help with muscle recovery, so there are a lot of bright colored prints to choose from.

If your medical equipment and mobility aids are plain, ugly, or don’t match your style you won’t want to use them. Make them look rad so you will use them with pride! I get compliments on my socks, canes, and wheelchair all the time.

I just do the best I can to shape my life into one that works with my limitations. I hope those of you out there who are sick like me can too. ❤