My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar I Rapid Cycling With Psychosis ~ Migraines ~ Obsessive Compulsive Disorder (My OCD is currently in remission except for hoarding) ~ 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 (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Wednesday, August 18, 2010

Another long day at University hospital with good news

This blog is cross-posted at one of my other blogs Please Tape Me Back Together, my blog on Ehlers-Danlos Syndrome.

I went for the Tilt Table Test (TTT) last Friday but have been suffering from really bad writer's block for most of the past few weeks.

We caught the Medicaid Transport van at 5:00 am.  (Yes, I just said wrote 5:00 am!)  I am not a morning person so this was really hard to accomplish!  I had three hours of sleep the night before.  My TTT was scheduled for 7:00, the echocardiogram for 10:30 am, and the cardiologist for 1:20 pm.  After hobbling down the hallway on my cane we discovered that we had arrived shortly before the Cardiology Diagnostics department opened.  Fortunately we did not have a long wait.
I was the only one with a cardio diagnostic test scheduled for the morning.  I think that one of the ladies who did my TTT was really glad to have a slow morning after her really busy day the day before.  They said that since the morning was open for them that they would go ahead and do my echocardiogram right afterwards.

Once I got back in the room they did a quick history and went over the potential side effects of the TTT.  After that I had to change into a hospital gown above the waist so they could get the stickers on.  Once the EKG was hooked up, an automatic BP cuff was on my left arm, a manual BP cuff on my right arm, and I was strapped tightly to the table we were ready.  I was really afraid that I'd freak out strapped down because of all the things I've seen in our shitty mental health system.  I was scared, but it wasn't long and my mind was overwhelmed with the incredible pain of standing.  The test was 45 minutes long or until you faint.  I had to have them stop it early because I had searing pain shooting down my legs and, of course, a high level of pain everywhere else, too.  I was incredibly embarrassed that I can't stand up that long without crying from pain.  The techs never made me feel bad, but I still am ashamed I cannot stand for 45 minutes and I'm only 29.  I'm not even 30 yet.  By the time they did the echocardiogram, or ultrasound of the heart, I was crying in pain.  I don't know if they saw it but I know they heard me crying out everytime I was touched.  As anyone who has had an ultrasound done will tell you; the tech pushes hard on your body to get good pictures.

In between the two tests they went and got Jim in the waiting room to tell them my un-official result of the TTT.  I was very pleased to know that the un-official results were negative for any dysautonomia.  Yay!

When they had completed both tests they got me a wheelchair (by then I couldn't walk) and Jim wheeled me to the Cardiology department from the diagnostics department.  By this time my pain was a 9 out of 10 and there was no way I wanted to stay for the afternoon appointment.  I was too exhausted and in way too much pain.  So we rescheduled with my cardiologist, Dr. Z.

We went to the lobby of hospital and called the Medicaid Transport van.  He agreed to pick us up after picking up the woman he was waiting on.  He said he'd be there within an hour.  We went outside to wait.  Jim pushed the wheelchair down the hill, across the street, and under some trees so he could smoke a cigarette.  I got out my water and a Diet Pepsi and drank that.  We both ate a snack that I'd packed and Jim went back across the street to take pictures of the hospital for my blog.  I'd tried getting the pictures myself, but I couldn't.  So the lovely pictures here are thanks to my honey.  An hour and a half after we called Medicaid Transport they showed up to take us home.  After we got home I slept four or five hours without waking up once.

Monday, August 2, 2010

Saw the cardiologist

This blog is cross-posted at one of my other blogs Please Tape Me Back Together, my blog on Ehlers-Danlos Syndrome.

This blog is a bit overdue.  I saw the cardiologist in Columbia, Missouri at University Hospital.  I took a picture of the rug at the entrance because it was the only place that I could find the whole title of the place.

So we did make it past the rug to the cardiologist's office. lol  I didn't have to wait long in the waiting room but had to wake a bit in the examining room.  Jim stayed with me almost the whole time.  Dr. Z was a young woman, only 30 or so.  Since I'm 29 I did wonder; if I had lived my life better would that be me as the doctor?

Dr. Z was very nice.  She was familiar with EDS (amazing!) and agreed to do a Tilt Table Test (TTT) and an echocardiogram.  She explained that an echocardiogram is an ultrasound of the heart.  The TTT will be testing for Dysautonomia and the echo will be testing for Mitral Valve Prolapse, and I guess any other funky stuff.

After Dr. Z finished with me she called in the doctor above her to see me.  He walked in and I could tell he was happy to meet someone with EDS.  He asked me how I know so much about it.   He said that I knew more about EDS than he did, then he asked if I was a professional in the medical field!  I was so surprised and excited.  Of course I told him how I wasn't a medical expert but am doing my best to know all I can about EDS.  Well I tried using those words; I'm afraid that I was so excited everything came out wrong.  

We'd taken the Medicaid bus to get there and back.  It was a loooong day!  I went home and slept for four hours and Jim and I went to bed early.  With the fibromyalgia, low thyroid, and EDS, I get tired out very easily.  For those who are reading this and don't have these or other medical problems I want to point out there is a difference in being lazy and having multiple chronic illnesses. 

Which reminds me, I need to get paperwork mailed to me to get my blood work done from the same place for my endocrinologist.  He's a great guy and I am going to ask him about the lump on the side of my skull.  It is probably no big deal, but my mom had Castleman's Disease and I am pretty sure that hard lump used to be a lymph node.  I have no idea if Castleman's Disease is hereditary though.  Either way an endocrinologist should know if something is wrong.  I've had it for 4 or 5 years so it isn't killing me or anything, but it is still good to know what it is, right?  

My TTT, echo, and follow-up are all on the sameday, which is good.  This month I have the EDS doctor in St. Louis, MO.  I'm excited/nervous!  I have no idea HOW we are getting to St. Louis, and that is where most of the stress lies.

Sunday, August 1, 2010

A Rare Glimpse Into My Innermost Thoughts

Yesterday was an okay day I guess.  I've been kinda depressed lately, so I haven't really been blogging or much of anything.  I have gotten some pen pals written and have started practicing my breathing deeper and and some meditation again.  Everything is sort of grayish to me, it's not exciting and great but it isn't horrible either.  It's like wandering the Earth after everyone else is dead; all the buildings remaining are shrouded in a thick gray mist.  I can sense danger lurking off the street that I walk.  I want so bad to stop walking this street, I just want to stop, to run away from the pain and the fog that seems to fill my head.  I want to collapse and sleep a long, long time, without pain and without nightmares but I can't.  I have to keep walking this street, looking for reasons to stop but not able to leave the path that leads into darkness.  I can almost make out the screams in the distance, where the end of the road is a bottomless pit of pain; it's so dark there I wouldn't be able to see my fingers in front of my face.  I can feel the hot stale air in my face, my body contorting in every kind of pain as I fall deeper and deeper.  I can feel myself walking toward this place almost as if carried by a conveyor belt straight to my own personal hell.  I want to stop this journey, I know the end and I know the feeling of insanity's grip but I can't stop it.  I take my medicine, rarely missing a dose, but sometimes late.  I go to therapy.  I go to my shrink.  Can't they see?  Don't they listen?  Can't they help?  I've told them, my survival has rode on the fact that I can fake being happy for years at a time.  It is hard for me to let down my guard with anyone except Jim.  When I'm saying that I'm depressed I deserved to be listened to, whether I'm crying or smiling.  I couldn't work the whole time during my last therapy session because during the last 15 minutes I was having a seizure and recovering from that seizure.  The stress is overwhelming.  It is stifling, I can barely breathe under the weight of it.  Any expectations beyond to make it through the day are crushing, because I can't make it through the day.  How do I stop this?  Of all the medical conditions I have, the abusive I've suffered, some of that abuse at the hands of males, and of all the times I cannot count on my own body, the one thing I can, the one thing I want to always be able to count on, is my mind.  When I can no longer count on my mind to be there...there is no me.  I don't want to get that far again...yet the conveyor belt carries me steadily forward.  Is there a reason to fight it?  I can't seem to get away.  I'm scared.

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