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.]


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.


Acceptance Is A Powerful Thing

Some friends don’t know how I cope with having multiple health conditions. Conditions that have required daily medications, tests, procedures, surgeries, a feeding tube, and physical therapy.

Acceptance. That is how I do it. Once you find out you have illnesses that have no cure, you can be angry and spend all your time wishing this wasn’t your life, or you can accept it and start building yourself a life that accommodates your disabilities.

I have my moments of anger and frustration of course. It’s okay to get upset sometimes. I will have a good cry and then pick myself back up. Having a supportive partner and a caring mother helps.

Walking long distances is extremely taxing for me, so I got myself a pretty, green wheelchair (I named it Wanda). Some people see wheelchairs as something bad, something to avoid having to use at all costs. I love my wheelchair. For me it means freedom to go out with my friends and not be exhausted after 15 minutes. It means going to the aquarium with my partner and getting to see the whole thing.

I have trouble doing some things myself and don’t always want to have to ask someone else to do them for me. Solution? Applying for a service dog! I don’t have one yet, but I am in the application process. Having a service dog would also make me feel more confident about going out of the house on my own.

One trick I use to help myself accept my medical equipment is to make it all look cool/cute. My wheelchair is a shimmery apple green with patches I have been sewing to the back of the black upholstered seat. My compression socks are all striped and colorful. I modified a cute little backpack to carry my feeding pump around in and I bought cute tubie pads off Etsy to wear on my tube site. I have a collection of canes of various styles. My water bottle I carry everywhere has stickers on it. My wheelchair gloves have rainbow skulls on them.

My P.O.T.S doctor says he often can’t get his teen patients to wear compression socks to help with their circulation. He had never seen colorful ones like mine before. Of course they will be less likely to wear them if the socks are that weird ‘nude’ shade that is the color of a dead Barbie doll! I told him Amazon sells all sorts of fun ones. I guess athletes wear them to help with muscle recovery, so there are a lot of bright colored prints to choose from.

If your medical equipment and mobility aids are plain, ugly, or don’t match your style you won’t want to use them. Make them look rad so you will use them with pride! I get compliments on my socks, canes, and wheelchair all the time.

I just do the best I can to shape my life into one that works with my limitations. I hope those of you out there who are sick like me can too. ❤