Living life with multiple chronic illnesses…. and some other stuff!

Category Archives: Art

Part I

Part II

Part III


First off, I am getting the hang of making “green” smoothies. I have possibly made the best smoothie ever this morning! It’s so yummy. Those of you who aren’t familiar with green smoothies may think it’s a bit weird. Basically a green smoothie consist of a leafy green (the basis of a “green” smoothie), a watery veggie like cucumber or celery, some other veggies if you’d like, and a few fruits. Today’s blend for me was some collard greens, celery, an apple, a banana, and some pineapple. So yummy. The stronger flavors of the fruit mute out the bitterness of the greens. It’s delicious!

Yesterday I went out with one of my knitting friends and met up with another. First stop was the Slater Mill Knitting Extravaganza. So many gorgeous, soft, colorful yarn. Yet also very pricey. There was a raffle table, I bought 6 raffle tickets. I never do, but any one of those prizes would have been phenomenal! Especially the Knit Picks basket of goodies. Alas, I didn’t get a call saying I won… not surprised. lol.

The next stop was to Peter Patchis’ Yarns which is the Mecca for all yarn users!!!  I have pictures but not uploaded yet.  I will soon, I promise.  It’s literally bins and bins of giant spools of cotton, linen, wool, acrylic, and mixed yarn.  They have some skeins as well.  His prices range from 75 cents a skein to $3 -$4 per lb for wool and cottons and blends, and up to $16/lb for mohair and tencel blends.  I walked out with 3 giant spools over 2lbs each.  One is an acrylic/wool blend in a tweed heathered rose color, very pretty!  The other two are %100 cotton, two shades of aqua that I am going to ply together.  I must go back soon!

And finally, our last stop, New To You Too.  It’s a thrift store nearby that has a deal where you spend $1.95 to fill a bag with books.  How ever many books you can fit!!!  I got a bunch of old Reader’s Digest bound volumes, and outdated dictionary, and some other hard bound books to use as art journals, and found Cold Mountain by Charles Frazier which I heard is supposed to be good as a novel.  I loved the movie.  I also found The Poisonwood Bible by Barbara Kingsolver.  I also grabbed a mini mason jar for a project, a pretty pewter votive holder with stars and moons cut outs, and three americana style game board wall hangings.

Over all, I spent about $33!!!!  Frugality FTW!!!

In some medical news, I saw the cornea specialist and it doesn’t look like I have keratoconus or keratoglobus, so yay, but it also doesn’t seem like the majority of my vision loss is true myopia.  Rather, the dryness of my eyes are so severe that I’m continually getting corneal abrasions and irritation.  He said that he has no doubt I have Sjogren’s Syndrome and that around 40% of patients with Sjogren’s actually have negative blood results.  It’s not great news, but better than actually losing my vision.  I got plugs put in my bottom two tear ducts so that my tears won’t drain so quickly and keep my tear film replenished.  I am also on a pretty intense regimen.  Right now I am using OTC preservative-free eye drops 6 times a day, warm compress 2 times a day, flaxseed oil 3 times a day (which I should be doing anyway), and an OTC night gel.  It doesn’t seem a whole lot when it’s typed out, but trying to remember to put the drops in all day is hard when you have basically mush for brains.

I know it’s been a long long time since I posted. Things have been pretty hectic for me. All kinds of doctor’s appts and what not. I have hope, though, that they will be able to help me. I saw a fantastic Geneticist at Boston’s Brigham and Women’s. They set me up with a CTD savvy Physical Therapist. She is great. She understands that with EDS, I am not always able to do the exercises. She agreed with me that until I am in some sort of proper alignment and bracing, I shouldn’t do too much and gave me a few exercises to try. She also told me not to do them if I hurt. I am also seeing an EDS savvy Physiatrist in November to get evaluated for new braces. My current ones are either broken or dont fit properly. Also lined up is a Pain Specialist and a Neurologist. I’ve already seen a Cardiologist, GI Specialist, a Neuro (that was horrible), and I have a new Primary that is helping me set all this up. So far, I’ve had good experiences. All the doctors, except the neuro, had extensive knowledge of EDS and it was refreshing to not have to explain my condition to them all.

In the meantime, I am simply trying to deal with it all. I’m not walking very well lately. When I do I look like a Parkinson’s patient, I’m not joking or making fun, that’s really what I look like.

Right now I’m sitting in bed with my laptop (on a bed desk) with my soft neck brace on. I strained it somehow and considering the way it hurts, seems like I strained it from going to see Fame in the theater. Boo!

I’m trying to separate myself from my condition. As in thinking in terms of being a person with disabilities rather than a disabled person. I’ve been doing more creative things. I’ve gotten into beading, which is surprisingly easy on my hands! I’ve gotten back into art. I’ve joined an artists’ website WetCanvas and started to do the monthly challenges. I’ve only done one so far, but it was fun. You can see a picture of the drawing on my Art Blog . I have hopes of taking art classes next summer or fall. Here, we have the Rhode Island School of Design which is one of the biggest art schools in New England. They have a Continueing Ed program where you can get a Certificate in an area of art or design, e.i. drawing and painting, photography, fashion design, etc. The Certificate is kind of like a BA but without all the Liberal Arts and general courses require for a BA. I want to go for Drawing and Painting. I am really excited and have made this my goal.

I’ll try to keep this blog updated!

So until I get my butt in gear and really work on my own website, I have devoted a separate blog for just my art.

Check it out. Subscribe. There will be more to come.

It’s sure has been quite some time since I’ve last posted.   Things have been absolutely crazy on my end.  Still trying to figure out a good pain management.  So far: Ultram ER 300mg, Ultracet 37.5 every 4hrs as needed, Neurontin 300mg 3x Daily, Cymbalta 60mg, Valium 10mg every 4hrs as needed, Ambien 10mg at night (and I still don’t sleep more than a few hrs between the neurontin, ambien, and valium).  I’ve changed PT’s because the first one was pushing me too hard and I ended up hurt after every session.  The new guy was really good.  Was with him for about a month and a half–then, no insurance.  That’s right.  I don’t have medical insurance anymore.  

After a day of freaking out and sobbing about what will happen, neil, my mom, and my shrink, came up with a game plan.  I am working with a lawyer who is taking care of all the paperwork, even the medicaid that is separate from SSDI.  I am so grateful that he is offering to do everything  for me.  
I contacted my primary care physician and explained to her my situation, she said that she will talk to both my psychiatrist and my pain dr, to work on a better pain management that won’t interfere with my psych issues.  She also said that for the brand name meds I could get samples.  The generic stuff I could go to walmart, they have the $4 dollar script program.  I think Rite Aid also has a program (that’s where all my stuff is, and they know me).  
My Shrink is going to work something out  for me.  Phone sessions for a bit, until I figure out my financial situation and if I need to come in to see her she’ll give me a decreased flat rate.  It sounds doable.  Especially if I get the state program stuff to come in.  The only other issues I’m worried about is the pain dr and my psychiatrist visits.  
Hopefully, things will go through quickly and hassle free, but anyone who has had to deal with the system, it takes forever.  I refilled everything that I could refill before I lost the insurance. At least for that.
As for some more upbeat things, I am really wanting to get back into art.  I think I’m going to make a new blog that is strictly for my artwork, until I get my own website up and running.  I joined a website with many tips and advice for anything art related.  The people there are very helpful and encouraging.

So I was bored and antsy yesterday and had noticed that Alison had left one of her miniature bird house windchimes unpainted… I took it upon myself to pain it. Here it is in all its glory!