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.
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.
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! ❤
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. ❤