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.

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! ❤

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.]

#BuildALadder

Martina Stawski is my role model for doing my best to live well with chronic illnesses. She, with her husband Simon, runs the YouTube channel Simon and Martina along with the EatYourKimchi website. The two of them are Canadians that have been living in Asia the past ten years; first in South Korea for eight years, and now in Japan for the past two. I have been subscribed to their YouTube channel since 2015.

Martina has Ehlers-Danlos Syndrome [EDS], a connective tissue disorder that affects the way the body forms collagen. It is related to (but not the same as) Marfan Syndrome, the connective tissue disorder that I have which affects fibrillin. Martina deals with chronic pain, fatigue, and joint dislocations on a daily basis. She manages to travel the world with Simon creating hilarious, beautiful, informative, and often mouth-watering videos.

It isn’t easy for her to do, and she often pays for it with increased pain in the days after her adventures, but it is what she loves. She says she would still be in chronic pain if she just stayed at home all the time and then she wouldn’t have all the awesome memories to sustain her on her darkest days. She uses those memories to ‘build a ladder’ to help her climb out of the pit of depression on her toughest days. Along the way Martina has inspired many people living with chronic illnesses, including me, to do the same. She emphasizes that it doesn’t have to be big things like going on a trip. There are little things we can do each day to add rungs to our ladders.

Since Martina made the video “An Open Talk About My Depression” last February, in which she first shared her Build A Ladder philosophy, I have really taken her message to heart. I give her some of the credit for my quality of life having improved in the past year. I don’t think I would have accomplished as much progress without her as inspiration.

Martina, if you ever read this, thank you. I have talked to you in the comments section on YouTube and Instagram on many occasions, but I just wanted to do a little write-up about you on my own blog so that maybe people who haven’t heard of you can find you and hear what you have to say. ❤

How I Avoid Losing My Mind When I Can’t Leave The House.

No matter how much I improve I will always have days where I can’t leave the house; sometimes not even leave my bed. I’ve accepted that probably won’t change any time soon. I am just grateful that I can go out more than I used to and that I can drive myself.

However, it is very easy for me to slip into a state of depression if I am in the house for a few days at a time and don’t make the active effort to occupy myself.

So here are some things that help me:

  • My cat, Ollivander. Having the company of a four-legged friend always makes being stuck at home way more pleasant. Ollie is an expert snuggler and is very devoted to me. I am so happy that I adopted him back in 2013. When I am at home he rarely leaves my side.
  • Comfy bedding! I burrow under blankets when I am feeling worn out. My fleece blanket that I made myself and my Sunbeam electric blanket are my favorites. I use my electric blanket as a whole body heat pack when my joints are bothering me. I also recommend a memory foam mattress topper if your joints need some extra cushioning.
  • Crafting supplies. If I am really in bad shape I won’t even have the energy for crafting, but most of the time I can manage it. Making things with my hands has always been something that helps preserve my sanity when I am stuck at home. Back when I first got really sick ten years ago was when I vastly improved my knitting skills. Recently, I have been teaching myself to use a sewing machine.
  • Internet access. Even when you are stuck in bed, if you have a wi-fi connection you can be all over the world. I am on my computer quite a lot. I prop myself up on pillows, place my laptop on my little lap desk, and then I can get all sorts of stuff done from the comfort of my bed. I use the computer application F.lux to tint the color of my computer screen. My eyes are very sensitive to certain kinds of light, so being able to tint the screen an amber color is very helpful in preventing migraines. I have to have the brightness on my screen turned all the way down AND have F.lux running in order to be able to look at the screen.
  • Video Streaming Subscriptions [i.e. Hulu, Netflix, PBS] I haven’t had cable TV in my house in years, and I am totally fine with that. I have access to several different streaming sites and therefore enough shows and movies to keep me entertained indefinitely.
  • Switching up locations in the house. Sometimes all I need to improve my mood when stuck at home is a little change of scenery. If I have been in my room for too long I go downstairs to hang out in the living room for a bit. I usually use a big canvas tote bag to carry whatever I might need down from my room with me so I don’t have to take multiple trips. Stairs are my sworn enemy so I try to avoid going up and down them more than absolutely necessary.
  • Books. I do not always have the mental energy and focus required to read books for hours on end like I used to. Over the past couple months I have been getting back to reading books again, even if it isn’t at the same ridiculously fast pace as before all this. I have a rather large collection, so I always have something to read should I feel like it.