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.


I Did The Thing!

Art, art is the thing. I went out and got a little watercolor palette and some brushes. My drawing skills have atrophied a bit since I have almost exclusively been working in textiles for the past six months. I really enjoyed getting back to drawing and painting today.

Here is what I have done so far:

[image description: watercolor of a green snake plant in black planter and an ink drawing of the sheep bug fairy from Ancient Magus’ Bride]



The Need to Feed My Artistic Spirit.

I haven’t been doing enough artwork lately. I have lacked the inspiration and motivation to do so. I *want* to do artwork, but every time I pick up a pen/brush/sewing needle my brain just goes “uuuhhhhhh, sorry boss, I’ve got nothing.”

Excited for the painting class I will start taking next month. I haven’t worked in a two-dimensional medium in awhile and I think switching things up will be good for me. Also, I always feel better around other artists because we can bounce creative energy off of each other. I know the teacher of the class well and have taken classes from her before, so I know I will enjoy her instruction.

Been thinking about starting an art journal. I have always been a journal writer, but usually it is just pages upon pages of endless handwriting. I feel the urge to try adding some watercolor to my journaling. Haven’t used watercolors in a long time. I would have to go buy a watercolor palette, some paints, brushes, and the right kind of paper. Maybe later this week I will make a trek out to the art shop in Berkeley that I like. I might order the palette online because there is a very particular style of palette that I want.


Depressed? I guess?

It isn’t that stereotypical “sad and crying all the time” depressed that people without depression imagine. It’s that “emotional equivalent of watching paint dry” kind of depressed where you don’t enjoy all the things that you usually would and so you kind of just space out and go on autopilot through everything.

Doing volunteer work twice a week and exercising at the gym a few times a week had been making me really happy. It made me feel capable and like I was contributing something.

About a month ago my pain got worse and I had to take a hiatus from those activities. I was hoping I would only need to stop for a week, but it is taking longer. I am back in physical therapy and getting my joints realigned is going to make my pain worse before it can get better.

I guess it all just has me feeling despondent about the future and what kind of life I will lead if I never get to go to college or have a career due to my health. I know I will make things work no matter what, but I am feeling down about it anyways.

Probably also doesn’t help that I have my yearly Marfan Clinic heart check up coming up on March 7th. That’s the appointment where they take an echocardiogram of my heart and tell me whether or not my aorta has dilated further. So far, the past two years, it has stayed the same size; just slightly larger than normal. I take my meds and avoid lifting heavy things. However, I have been trying to be more active in the past year and I am nervous that it will have made my aorta enlarge. If it ever gets too large I will need open heart surgery. I have accepted that I might need that surgery someday. Doesn’t mean I am super stoked about it though.

I just want to get the appointment over with so that I will know how my heart is doing and if I need to change anything in regards to treatment.

So close to deleting this post before I even publish it because I hate how mopey it sounds. Only publishing the blog posts that end on an upbeat note would be censoring myself and painting an unrealistic portrait of what living with illness and disability is like; so it gets to be posted.


Ramblings/Life Update

*in radio advertiser voice* “Today’s blog is brought to you by brain fog! It’s like a Winter morning in San Francisco, but a lot less pretty…”

I’ve been in a pain flare up for the past several weeks, which hasn’t been fun, but I am coping. I started seeing a new physical therapist who is trying to get my joints back in alignment and loosen up my tight muscles.

The way she explained it is that my muscles are trying to overcompensate for my weak joints and that is why they get so cramped up. My muscles have been tight my entire life, so I don’t know what it feels like to have muscles that aren’t constantly in knots.

I wish my house had a functional bathtub that I could take epsom salt baths in when I feel like this. Unfortunately, our’s makes water drip into the foyer whenever we use it, so we use the downstairs shower. I do have a nice shower chair at least.

I could start seeing a massage therapist, but I doubt that is covered by Medicare and I don’t know if I can fit it into my budget. I will look into it though. I have a friend with Lupus who sees a massage therapist locally. She is on a fixed income like me so I can ask her how she pays for it.

I have had to take a break from my volunteer work during this pain flare up, but I hope I can return to it soon.

Still no college for me either, but I am not giving up on that dream yet. Maybe once I get a service dog it will be easier to give college another go.

I am on the wait-list with CCI for team training. When my turn comes around I will go live on a CCI campus for two weeks to get matched with a dog and train with them. It will be exhausting, but hopefully at the end of it I will have a dog that can stick by my side and help me gain a little more independence. No idea when I will get the call. Could be any time in the next year and a half. I have a feeling it will be some time in 2018, but I could be wrong.

Haven’t started archiving Dad’s photos yet, but I will once I feel a little better.

All in all I am doing okay:

  • I have great friends and family who are always there for support.
  • J is as sweet and caring as always. We’ve been together for seven and a half years and have lived together for almost a year.
  • Ollivander remains my devoted feline companion. He is snuggled up next to me now as I type.
  • I am signed up for a painting class at the local art center starting next month. It has been a long time since I have taken an art class, so I am excited for that. The teacher is an old friend of mine and I have taken classes from her before, it will be nice to see her again.
  • I have a car and wheelchair that are both 100% mine that help me to be more independent.
  • I am getting pretty good at machine sewing considering I have only really been doing it for six months!
  • Some friends of mine are getting married next month and I am going to help them make some of the decorations!

[always nice to reflect a little on things that are going right in my life. there is more to my life than my illness and when it knocks me down like this it is good to remember that I do have good days and this pain will go back down to a more manageable level eventually. it is okay to get frustrated and sulk a little sometimes, but then I have to pick myself back up.]


Archiving Dad’s Memories

My mom recently had to clean out the garage so that we could get the old, rotting ceiling removed and clean out the attic space above it that had been home to a colony of rodents. While sorting through all the boxes and bins that have accumulated over the years Mom found an old box of photos, cards, and letters that Dad had saved; spanning from around 1985 – 2008. My dad passed away in a hiking accident when I was 13 years old (2009), so any memorabilia from him is very precious.

Looking through the box tonight we couldn’t believe all of the stuff he had saved. I found a birthday card that my best friend had made for him when we were in kindergarten! She is still one of my best friends now so I had to text her a picture of it. He also saved the ticket from the jazz concert that he took my mom to on their first date back in ’89. Lots of letters from his friends and cousins too. Even a card that his brother (who has also passed away now) wrote to him.

There are hundreds of photos in the box, many sorted into labeled envelopes in Dad’s neat, printed handwriting. They document trips he took with his friends and siblings as a young man, family gatherings, his business trips that took him around the world, the early childhoods of my siblings and me.

I am lucky that I have a ridiculously good long term memory. I can still remember things from back when I was two years old! I can still remember the events during which a lot of those childhood photos were taken. I can still remember those good years with my dad. I think that maybe my brother doesn’t remember those years as much, which is sad.

He loved us, he cared for us, and he taught us about the world. It wasn’t his fault that depression sunk its claws into him in our later childhoods and early teen years, taking away some of his vibrant spirit. There was a time before that, when he was happy, when we were all happy. That is the time that I choose to remember and that I want to make sure stays documented.

Anyways, the point is, I have a new project to work on! I want to archive all of this stuff. Scan it all into a computer and put it on discs to distribute to family members. My aunts, uncle, and grandparents would especially appreciate it I think. It’s important to keep a record of when he was still so vibrant and full of life.

Will post updates periodically about how this endeavor is going. We are hoping to go back to Illinois to visit family in June, so maybe I can try to have it ready by then.