Gettin’ Back to It

Finally dragged my butt back to the gym today. I have been going to PT twice a week, but I hadn’t gone to the regular gym in months.

Just did some water walking in the heated pool. Not going to be doing water aerobics again because I am pretty sure that is how my pelvis got knocked out of alignment. Simply walking laps in the water feels good on my joints and works my muscles.

Next time I will have to go at a time of day when there aren’t so many little kids to dodge. (they’re cute and all, but splash a lot).


Craving College

It’s graduation season again, which means I am once again feeling a little envious.

I have accepted that I am ill and will remain so for the rest of my life unless there is some sort of cure discovered in my lifetime. It’s okay, I can and do still have a good life for the most part. I don’t generally waste much time wondering what could have been had I not had these illnesses.

That all being said; when it is graduation season and I see photos of all my friends graduating from various prestigious colleges I do get sad and jealous. Then I feel guilty for feeling jealous.

I have never been well enough to complete any college classes. In fact, since my health first really started going downhill a decade ago there have been only two years of school that I completed without significant absences. Eighth grade and tenth grade.

I want to go to college to study Biology and specialize in Genetics. I would love to be able to contribute to the research affecting the connective tissue disorders community.

Currently I am looking at various not-for-profit online colleges. Online college still takes a lot of energy; a brain that is hard at work uses A LOT of energy points. However, at least there is not the extra energy loss from traveling to school, sitting upright in uncomfortable lecture halls and labs, florescent lighting, and traversing campus to get from class to class. Having the option to stay in your pajamas and attend class from your favorite recliner sounds good to me.

I am not enrolled anywhere yet, just looking at some options.

Prepping for Flight

I haven’t done any airplane travel in a year and a half. I only ever fly to go visit extended family in the Midwest, and we don’t get the chance to do that super often. Well, next month I am finally going with my mom and siblings to go visit all our relatives again.

Which means it’s time to…

Plan What to Pack!

I used to try to pack as little as possible, but that was when I was a little kid with no medical supplies and even less concern for my physical appearance than I have now.

Now I need to make sure I pack all my medications, hydration mix, tube feed supplies, tape for my joints, comfy clothes, compression socks, hot/cold packs, and whatever mobility aids I deem necessary.

Haven’t decided if I want to bring my own wheelchair or not. Wanda is a pretty sweet ride, but I would worry about it getting damaged by the airline. However, I would not be able to enjoy shopping days with my aunts very much without a wheelchair.

I have almost a month to figure it all out, so it should be fine. I know the trip will be tiring, but it will be worth it to see family. I haven’t seen my grandparents in a long time, and my cousin has a six month old baby who I have not gotten to meet yet.

Getting Work Done My Way

I am helping make decorations for the wedding of some friends. Cutting out the fabric for the banners is the most time consuming part at the moment. Right now working from my bed is more comfortable than standing at my sewing table, so I brought my cutting mat up to my room and am cutting fabric while I binge-watch Prison Break on my laptop.

[image description: my rotary cutter, cutting mat, and fabric all layed out on my bed next to my laptop.]

Ollivander is being my little helper as always (when he isn’t walking all over my workspace)

[image description: Ollivander sitting behind a pile of fabric. His head is turned as he looks at something over his shoulder]

A Good Day

I had a good, productive day yesterday. I got out to see friends, helped out a teenager with EDS/Dysautonomia that I have been watching a few hours a week while his mom is out running errands (he is a fall risk and can’t be alone), and came up with another embroidery design to work on. Also took Ollivander to the backyard on his harness, which he thoroughly enjoyed. It was an absolutely gorgeous day out and he got to warm his fur in the sun while he watched the birds. Next time I will take pictures of the little floofball.

Doesn’t mean I wasn’t in pain, I was hurting all day, but I can have good days anyway. If I waited for a pain-free day to go out and enjoy myself I would be waiting forever. I go out anyway and enjoy the world so my mind isn’t as focused on the pain. I do reach a point where I have to stop and rest, but that is better than just staying home all the time out of fear of exerting myself.

Yes, I have been in bed for most of today, resting and recovering, but I plan on going out for at least a little bit later. It’s a balancing act. Some days I am better at it than others.

A Change in Diagnosis?

Had my yearly check up with my connective tissue disorder doctor today, just got home about an hour ago.

Good news! My aorta is still doing fine!

My doctor decided today to reclassify me as having Ehlers Danlos Syndrome (Hypermobility Type) instead of Marfan Syndrome. So yay, not likely to need heart surgery in the future! We are going to keep an eye on my heart just in case, but it’s less of a concern now. EDS is still a connective tissue disorder, and still accounts for all my joint pain/hypermobility, fatigue, and coexisting conditions. I’m still likely to have increasing problems with my joints as I age. Really the only thing that has changed is that I don’t need to be so concerned about my heart.

I know Dr. L gave me reasons as to why he decided to change my diagnosis, but honestly right now I am so achy and brain-foggy that I don’t remember what the reasons were. Curse you brain fog!

He likes my way of coping with the condition (I explained to him that it is thanks to Martina Stawski) and he wants me to talk at one of the panels at this year’s Marfan Foundation Conference in July (the Foundation also deals with related disorders like EDS). I was already planning on going to the conference anyways and I would love to help spread Martina’s message to more people! I suppose I could see if Martina herself wants to speak at the conference, but she lives all the way in Japan, so I don’t know how feasible that is. I will try to email her though.

All in all I had a good day today.

Now it is time to go take a nap with my cat because I have a headache and he is a cute ball of floof.

Keep Building Those Ladders Folks! ❤

Accessibility Ignorance


[image description: a parking space with the disabled access symbol painted on it. The space has been blocked off by fencing and is covered in construction debris]

This is what the disabled parking spaces in a shopping center near me have looked like for the past six months! There is construction being done to the facades of some of the shops, and the construction company for some reason decided that fencing off all of the disabled spaces was fine. I am not even sure if any construction is even still actively being done or if funds have run out and the project is on hold.

I realize some people out there may not understand why this matters. So let me break it down for you all:

Disabled parking spaces are positioned right at the front, which means:

  • We can expend less energy getting ourselves into the store and then back out to our car later; saving us from extra fatigue and pain.
  • Those of us using wheelchairs don’t have to navigate crowded parking lots where drivers might not see us because being seated makes us lower to the ground.
  • There is a cutout in the curb

Disabled parking spaces also have extra space around them, which means:

  • space in which to load and unload our wheelchairs/walkers/scooters/etc. from our cars
  • some disabled folks use a ramp to get in and out of their car in their wheelchair and need that space to unfold the ramp. Otherwise, they can’t get out of the car.
  • Not having to try to squeeze between two parks cars while using a wheelchair/walker/scooter/crutches/etc. in order to get to the sidewalk. We can’t always fit between two closely parked cars. Even if we can we have to worry about our mobility aid scratching the cars or getting snagged on one of the cars and breaking something off of our mobility aid.

I am not a full-time wheelchair user. Sometimes I walk with a cane or a rollator. Around my own home I usually walk unaided unless I am having a really bad pain or fatigue day. I use my wheelchair (named Wanda) so I can go on longer outings. Wanda gives me the ability to stay go out and enjoy the world much more than I could if I had to try to walk everywhere.

^ Point being; I can unload my wheelchair out onto the sidewalk if I really have to, though I get a bit winded doing so. No matter whether I am walking or using my wheelchair; the further away from the store I have to park the more energy I have to expend and the more symptomatic I will get before even getting into the store. Parking up front means I am much more likely to be able to complete my errands before I get too worn out and have to go home.

I looked for a sign on the fence with the name and phone number of the construction company, but there wasn’t one. Is there somewhere else I should call about this? The city hall offices perhaps?

Couldn’t they have at least temporarily marked out the next closest set of spaces as disabled parking spaces and loading zones until the construction is finished? I feel like that would have been a reasonable solution.