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.]


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.


When you feel burnt out

I know my last post was all about acceptance, and everything I said in that post still holds true, but sometimes we get burnt out from working so hard to care for our finicky bodies.

I just happen to be having one of those days right now. A day where I don’t want to take pills all the time, constantly drink fluids, run my tube feeds, or stay in bed resting all day just so I can go out for an hour or two in the evening. I still do the things I have to in order to care for my body (for the most part anyway) but I am much more grumpy about it than usual. I’m burnt out right now.

In a day or two I will snap out of it and go back to my usual positive self. I think right now I am just feeling mad at my body for keeping me from going to college or getting a job. I want to be out there finding my way in the world like all my friends are.

I got to see a best friend graduate from college on Thursday, and I am so immensely proud and happy for them. I am glad I got to be there to cheer them on. A small part of me couldn’t help but feel a little jealous (and then feel guilty for feeling jealous). I still want that for myself someday. I just haven’t figured out how to make it happen yet.

Whenever I have tried college in the past I would get exhausted long before the semester was over and my grades would all plummet until I was forced to drop out. That was before a lot of my health problems got diagnosed though.

I am nothing if not persistent, so I know I will find a way to do it someday. I’d like to do something in the field of medical research, help people like me get diagnosed faster and treated more effectively.



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. ❤