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.

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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.

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.]