My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Tuesday, August 16, 2011

Cold showers, grad school, and a crafty Christmas

I just had to reschedule my rheumy appointment at University Hospital (yes, again) because we don't have the money to get there.  I see her for my fibromyalgia and she's the one I discuss my EDS with.  I'm going to ask her about my neck and who I should see next time I go.

We also don't have the money for the gas bill this month.  So at the end of the week they are turning it off.  From then until the 1st of September when we get our disability we will not have hot water.  We won't have heat, either, but we don't need it in August.  So it will be either cold showers or heating water on the stove for washing for both of us.  Dishes will also have to have water heated on the stove.  It will be a major pain in the ass, but we will survive.  ;-)  We've been through worse.

My neck pain isn't so bad today, but my legs are really achy.  I've already got a load in the washer and a load in the dryer from the other day.  When I'm having a good day I seriously love to do things to make my house look nice.  No one else did during this past year.  I've been so depressed, scared, angry, in pain, having trouble with mobility, fatigued, etc., that I haven't cleaned much.  The place pretty much went to shit.  So a little at a time I'm trying to get my house back.  I canceled my home health aide service because the ladies coming in were not doing anything (after Nancy left) and instead expected me to talk to them for three hours.  I figured that I could do without entertaining them and Jim can do the dishes, so that pretty much covers everything they do.  When Nancy was here she actually cleaned and became a great friend.  But...she isn't here anymore, and while I know no one else will be Nancy, they still just plain suck.  Nancy moved to Oregon, and I miss her.  She's probably the only friend I've made (in person) since I moved to this town when I met DH.  :-(

September 2011 calendar
They rescheduled my appointment with Dr. G, my endocrinologist, last week.  Or was it the week before?  They had me scheduled with another Dr. G.  He has the same first and last name, and works in the same office.  Talk about confusing!  Anyway, I have my appointment with him, for my thyroid.  I have a couple of small cysts on it so far, with the right side enlarged, and a cyst on my parathyroid.  I have Hashimoto's Thyroiditis, or autoimmune hypothyroid, by the way.  I also want to ask him about a lump I've had under the skin kind of below and behind my left ear for the last five or six years.  It seems like it may be a bit bigger than it was, so I thought it wise to ask if he knew what it is.

I rescheduled my appointment with Dr. Z, my cardiologist.  I am getting the test results of the Tilt Table Test (testing for dysautonomia, which is common in EDSers) and a baseline echocardiogram.  I am like 99% sure that the results are normal or they would have called me after all this time.  Also, the lady running the TTT said that she is usually right, but is not a doctor, and thinks that my TTT was fine.  She said she is right about 90% of the time and the TTT is accurate at any given time about 75% of the time.  I didn't pass out or get dizzy then, even though I get dizzy and get a rapid heartbeat (scary!) a lot at home.  I don't know why I didn't feel faint (I believe I have fainted a couple of times, I can't remember) or have a rapid heartbeat or anything.  I did cry because I was in so much pain trying to stand.  This was before physical therapy and it went from painful to excruciating after the first minute.  So my cardiologist, rheumy, and endocrinologist appointments are all in September 2011.  I am so freakin' sick of having to reschedule!  I really hope I get to go this time and get it over with.  Then I'd like to find out if someone can help my neck.

I have good news.  I got an email yesterday telling me that the university I applied to has my transcripts and is making an admission decision.  I will hear by mail what they decide.  Then classes start August 29th.  I am going for my Masters in Professional Writing.  I got my Bachelors degree in Business Administration-Accounting, with a minor in English.  I really hate accounting, too!  It's a long story on why I ended up in a major I despise for my undergrad degree.  Either way, I'm very excited about grad school.  This program I'm applying for is online, so I don't have to move somewhere and being stuck at home isn't going to keep me from finishing my degree.  Did I mention I'm excited?

I just woke up from an hour and a half nap and it felt so good.  I feel like I slept four hours.  I love it when I sleep good, it doesn't happen often.  I need to start up again with my cross-stitch.  I haven't done much in the last couple of months.  I cross-stitch and can embroidery and crochet a little.  I can't seem to get the hand of knitting but I will someday.  ;-)  I want to try different crafts until I find one that doesn't hurt my fingers bad and that I am good at.  Then I want to make Christmas gifts for my friends.  I have such a long list in my head of people I want to do stuff for!  I have a little blog I hardly every post in here, but you may want to check out.  It's just pictures of my crafts I make.  I should include my scrapbook pages I make.

Does anyone know of anything small and ZEBRA striped (or with a zebra on it) that I can make for my friend's Christmas?  I am looking for small cross-stitch patterns or some other small craft I can mail in a bubble wrap lined manila envelope.  I'm also looking for the same thing with SPOONS.  If you have any good ideas be sure to leave them in the comments.  Leave links to patterns or ideas if you want, too.  I'm so excited about what my readers may come up with!

Happy super-duper-early-Christmas.  Too soon?  Nah.  I listen to Christmas carols all year long, effectively driving DH nuts.  ;-)

1 comment:


    I was thinking of making you a spoon ring for xmas when it comes :)


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