Amy's 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 ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Wednesday, April 27, 2011

Flare (again)

I thought about trying to say something really poetic about the high level of pain I'm in today.  The best I could come up with sucked.  Pain makes it hard to think.  It was "If pain was a color, I am that color."  Yeah, I know, not exactly my usual caliber, is it?  Actually I don't remember if I've ever posted poetry on any public blog.  I will have to share soon.  I will share a doodle from awhile back with you.  That was taken when it wasn't incredibly painful to write.  Since no poetic ideas are flowing currently I am going to steer away from poetry and into the world of...physical therapy!  Woot!

I got up this morning to go to physical therapy.  I usually have PT on Monday, Wednesday, and Friday.  When I get to the hospital, I get my walker out of the backseat to go inside the hospital out-patient entrance near the PT department.  Often, DH helps me get my walker out, because it is a bit bulky.  While it is bulky it is awesome.  It's more than awesome, it's snazzy.  But, I digress...  I get the walker out and make my way inside and down the hall.  It is a straight hallway from the entrance that goes straight to where I need to go.  The PT department is at the end of the hall, it dead-ends there.

I very, very slowly made it toward my destination.  By the time I was 1/3 down the hall I was supporting as much weight as I could onto the walker because of the pain in my legs.  The hall seemed to be a tunnel, and the PT department was the light at the end of the tunnel.  I finally made it through the open doors of the goal.  I had only fifteen feet more to walk to a chair so I could sit.  I made it to the chair and sat down as fast as I could without causing anymore pain.  My pace was a little slower than a turtle walks, but that was my best, and I can only do my best.

When my awesome physical therapist walked in she immediately looked at my face and pointed to the patient room she does the myofacial tender point indirect releases and light massage in, instead of asking me if I want to go to the patient room or the gym, like usual.  She worked on my neck, my piriformis muscle, my shoulders and my legs.  After than my pain level had dropped from an 8.5 to an 9 out of 10.  Any reduction in pain is appreciated.  I had to use my walker to sit and wait on the other patients so that I could ask the receptionist to use the phone and call DH to wait at the door.  After starting my way down the hallway that had somehow lengthened since last time, I had to stop and use the seat on my walker twice.  I don't know why that didn't occur to me on the way down.  I would have collapsed with weakness and pain if I didn't have that walker seat.  Thankfully, I did!  I somehow made it to the car and from the car to the front door, and from the front door I made it the two steps I needed to take to gently sit on the couch.  By this time my pain was back to a 9 out of 10.

My pain at this moment is an 8, and I'm not sure how I'm supposed to make it through the day without losing my mind (again).  I think having chronic pain makes you become a stronger person, and you don't get a chance to choose to have it either.  It's not like some people choose to join the Army to become a better person/soldier.  Or they choose to enter the priesthood to become a better person in their God's eyes.  I however, didn't choose to live in chronic pain.  I didn't choose to be disabled.  I do choose to be the best person I can be.  I try to remember that when I start feeling sorry for myself.  I may be under thirty and on a walker, but I can still live a full life, just not in the same way others do.  I am still a spiritual person, an ethical person, a person who likes corny jokes, and animal lover, a procrastinator, a writer, and a bookworm, whether I am disabled or not.  I'm still me.  That's what I have to remember no matter how much pain I'm in and what I want people to always remember about disabled people, or anyone different, whether it's a religious difference or a sexual orientation difference, people are still people on the inside.  I'm rambling.

Wednesday, April 20, 2011

Denial on a brick wall

I am trying so hard to live in denial but things keep happening that make me face reality.  I don't like this!  I want to have a big brick sign built around me that explains I'm in denial so people (or my body) will quit hitting me with reality.  



Reality says: Something is wrong with my bladder, I can only pee sometimes or get a good stream most of the time only by leaning into a certain position.

Brick wall says:  Everyone does that!

Reality says: My fingernails are starting to club.

Brick wall says: Everyone's nails do that around age 30!

Reality says: I need to get my thyroid checked and quit canceling appointments.

Brick wall says: I bet most people have cysts on their thyroid and parathyroid and don't even know it!

Reality says: I am told by my physical therapist I'll always need a walker, if only on bad days.

Brick wall says: By this time next year I bet I can jog two or three miles again!

Reality says: My sister may not want anything to do with me for another 20 years, if ever.

Brick wall says: My sister will realize the abuse she's taking and will love me again and want to be around me.

Reality says: I will dislocate my toes more often if I don't wear socks.

Brick wall says: Everyone dislocates toes when not sleeping in socks!  Duh!

Now, can someone tell me why the damn reality of things keep hitting me and my brick wall keeps getting knocked down?  This is not the purpose of my brick wall!

Sunday, April 17, 2011

Bipolar stress

I've been forgetting to do my physical therapy homework lately, which isn't like me.  I'm usually really good at doing it, but lately everything seems messed up with all the stress.  I want to try doing it everyday except Sunday like I'm supposed to again.

I haven't talked much to my fellow EDSer friends on Facebook.  They did remind me that they care and that they are there, though, which meant a lot.  At the same time all this good stuff is happening I still feel like I'm holding my breath, waiting for the other shoe to fall.  I'm waiting for something bad to happen, because for the last year life has been nothing but a string of bad things happening.

I'm depressed, anxious, sleep all the time, cry a lot, get angry easily, and am very moody.  I think that the stress, rain, hormones screwed up from PCOS, and anxiety are all getting too much for me to handle along with my bipolar.  If I could give up any one of my multiple medical problems, I'd give up the bipolar.  I hate being bipolar, and there is still so much stigma attached to it.  Some people actually don't believe in mental illnesses (like Tom Cruise and other Scientologists) and that makes me feel as if they are belittling the experiences I've gone through.  Some people mistakenly believe that bipolar is actually fun.  Trust me, it's at the opposite end of "fun."  Thinking it is fun couldn't be further off.  Bipolar is devastating and can ruin your life easier and quicker than any other medical illness I have.  I have lost years of my life to bipolar and the ability to work.

Most of the time I have pretty good control over it now, I take my meds and do pretty well, albeit moody.  Lately, though, I've realized that my bipolar is turning into a monster out of my control.  I have more anger outbursts, more tears, more pronounced mood changes, more thoughts of self-injury (SI).  That's the thing with bipolar.  You can't count on it to be up, down, both, or stable.  You never know what it will be like from one moment to the next, but you hope that it will be a moment under your control.

I think it is important to talk about mental illness to take away some of the stigma.  I have bipolar and a chemical imbalance in my brain.  I take medication that helps me manage that, but sometimes it still gets out of control.  Most people with mental illness are not violent, like the media wants you to believe.  I am a peace lover and am completely non-violent.  To be honest, some people can get their life back after their first major episode, some people get parts of their life back, and some people never come out of it.  I was one of the semi-lucky.  I have parts of my life back, but I'm still disabled by the bipolar and I can't work even if I didn't have EDS.  (By the way, Dr. W told me I'd always be disabled with EDS, too.)  If you ask my honest opinion, most people never regain the life they had or the level of stability they once enjoyed before their first bipolar episode, no matter how "good" they are doing.  You have to realize that doing good with a mood disorder is different that a "normal" person doing good.

I want to share a picture project I did of myself that I call "Manic Depression."  (Manic depression is the old name for bipolar.  They mean the exact same thing.)

"Manic Depression" by Amy

It is past two thirty in the morning so I guess I should stop writing now.  Good night all.

Friday, April 15, 2011

A bowling ball in the gut

I hate, hate, hate that sick feeling you get when a joint dislocates.  So far I only dislocate fingers and toes, but I know that eventually I'll dislocate large joints.  I put my toes back in myself, though I've never dislocated my big toe or pinky toe.  I'm never dislocated my thumbs or pinky fingers either.  I'm getting where I can stand the toe dislocations without freaking out.  I can put them back in by myself, and I don't even retch anymore.  But my fingers are a different story.  When a finger dislocates at the knuckle I feel like someone threw a bowling ball into my stomach.  I get on the verge of hysteria sometimes.  I feel embarrassed at this because my more "experienced" EDSer friends just sit down and pop back in a hip, while I freak out over my knuckles.  Do all EDSers start that way?  Or am I just especially wimpy?

EDS...no wimps allowed!

Friday, April 1, 2011

Saw Dr. W and got official diagnosis

Children's Hospital in St. Louis
I have so much to catch everyone up on!  First of all, physical therapy is still going great.  This week marks the end of my first month of PT.  Now for my big news: I got to see Dr. W in St. Louis.  As I mentioned before, Dr. W is a geneticist who specializes in Ehlers-Danlos and Marfans.  She was absolutely awesome.  It took us quite awhile to find the hospital, but we still made it there 45 minutes early.  If anyone is in the St. Louis area, or can travel to St. Louis, Missouri, then I can give you information on how to contact Dr. W by email.  Just drop me an email at spoonieblogger (at) gmail (dot) com.  For future reference, my email address is also at the very bottom of my blog.

At the beginning of the appointment I talked to a genetic counselor, which is something different than when I saw the first geneticist.  She was also very friendly and knowledgeable.  She looked at my family pedigree and commented that no one else in my family displayed any symptoms of EDS.  I saw Dr. W next.  She did a thorough exam, along with the genetic counselor.  She commented many times that a lot of doctors think that EDS affects only your joints when really it affects all of your body, including GERD and GI difficulties.  She also diagnosed me with POTS based on my symptoms but I am supposed to go back to my cardiologist to know for sure.

Dr. W gave me the official Ehlers-Danlos Syndrome hypermobility type diagnosis, not benign joint hypermobility syndrome.  So...kiss my ass doctors that treated me like I was lying!

Seeing Dr. W has also given me the courage to go and see a competent neuro to discuss possible Chiari.  I listed all my symptoms that make me suspect Chiari in an earlier blog here.  I just really feel that there is something going wrong neurologically that is not being looked at and taken seriously, so I'm going to go to University Hospital to see a neuro.

Dr. W had a copy of the write-up she did of my appointment.  (I'm really sleepy, it's 1:30 am, please don't judge my grammar.)

My physical therapy was approved for one more month.  I have a snazzy new red walker and kick ass Oval-8's now.

What should I name my snazzy new red walker?

My Oval-8's are almost my flesh tone!


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