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.

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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.]

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.

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.

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.

Hello Internet. I am your friendly neighborhood cyborg!

Welcome to my little blog.

I have been doing this whole chronically-ill-young-adult thing for awhile now, and I thought maybe some of my experiences could help someone else out there or make them feel less alone.

I live with Marfan Syndrome, Dysautonomia w/ Gastroparesis, Hypothyroidism, and Celiac Disease. It took me a long time and a lot of self-advocacy to get properly diagnosed with all of those conditions. I hope to write posts on a vast amount of topics related to my experiences with chronic illnesses.

And cat pictures. There WILL be cat pictures. My cat Ollivander is a fantastic floofball that I must share with the world. He is my dedicated little sidekick.

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[image description: picture of me from a couple years ago with short, blue hair; sitting on a couch. I am holding my long-haired, pumpkin and cream colored cat, named Ollivander.] Photo taken by my cousin.