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 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 (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, February 26, 2011

Morning pain, appointments, & baby dreams


I am finally going to get to see Dr. W, the geneticist specializing in EDS and Marfans, in St. Louis.  I am so excited about that!  I made the appointments I needed to schedule yesterday.  I got an appointment to see my cardiologist, Dr. Z, to follow up on the Tilt Table Test and electrocardiograph.  Both were very painful tests for me!  They wouldn't be for a normal person, but when you hurt severely all over and can't stand very long at all then the TTT is excruciating.  Unfortunately an electrocardiograph of my heart, which is really just a heart ultrasound, entails pressing really hard over the heart area.

I also rescheduled my physical therapy eval.  DH's seizures are usually at night but the other morning right when we were ready to go my PT eval he had eight seizures, but conscious in between.  I call and canceled, when I explained it they were great and said I could call back later to make the new appointment.  I called back and they were just fine.  The hospital here in town's PT department seems great to work with. I think I may need to remind my readers that I have very bad phone anxiety, which is an aspect of social anxiety. 
Next I called my social worker's office to make an appointment with her.  Before I called I did a deep breath of bravery in preparation.  I have very bad phone anxiety if any readers didn't already know.  I asked the receptionist for an appointment.  She used to be so sweet to me.  She'd see me limp in on my cane and she'd smile and offer prayers that it "goes away."  I don't believe my EDS will ever go away and I'm not Christian, but I was touched at her sweetness.  Now she makes it a point to be a bitch to me every time I see her.  I can't figure out what I did wrong.  I've spent many tears trying to go over what I did between when she liked me and when she started being bitchy to me.  I know I care too much what other people think, but I just do.  So she made me an appointment 2 months out, as it was the earliest appointment they had.  I asked her for more appointments since she is always filled up 2 months out.  In a voice dripping with saccharine, she scheduled me one more appointment and said that was it.  
After the call was over I realized I forget to give her my new phone number.  So I called back to give her my number.  There was no saccharine in her voice this time, now she was letting the sound of her annoyance and actual anger come through loud and clear.  I also asked her if I could have another appointment after the two she scheduled because if I have to wait until after I have those two appointments then I will have to wait another two months to get in.  She got out the appointment book and read that the last four appointments I missed.  Imagine, under the stress I've been having I've had to call in when it was possible because Jim or I have been seizing.  I thought if I explained the reason behind the missed appointments she would understand.  I really need therapy and I want to go, but if Jim or I am having a seizure I can't go.

I really am sorry I missed the appointments.  Unfortunately I didn't get my way, and I didn't get to go.  Epilepsy doesn't happen on our time, we happen on it's time.  She said it didn't matter if one of us were having seizures.  Most of the time its DH having seizures.  I just have a few here and there while DH has a bad case.  I asked again if I could please have some more appointments so I didn't have to wait two months to see her, see her twice, then wait another two months to see her.  She said no, and very haughtily told me she'd talk to my social worker about it.  Gee...I wonder whose side the social worker will be on...her receptionist and friend or a client who has "mental problems?"  I've not decided anything set in stone, but if the receptionist keeps this up and only lets me make appointments two times every two months, then I'm going to have to look for a new therapist or forget about therapy.  When you open a can of worms in therapy then are told to wait two months while the flashbacks increase and become worse...well, it does more harm than good.  I will try to talk to my social worker about it if I ever get in to see her, but things don't look good.  I really need therapy right now, but if I can't get in then I can't get in and I sure don't have the time or energy to really look for a new therapist.  She's the only good one I've heard of in this town, unfortunately.  She also is a really good therapist.  So if it turns out I can't see her I guess I'll try to someone "therapize" myself.  I heard the word "therapize" on a Beverly Hillbillies and love it, and yeah, I think it's hilarious!  But I do have the books that I think will help me a lot.  I already started reading one a while back and making notes in it.  So, unfortunately, I'm afraid therapy may have to be something that I'll have to work as hard as I can do in a self-help manner since I don't have the opportunity to get therapy from my social worker.









This morning I woke up in all sorts of pain.  DH had forgotten to give us our medicines last night.  The way we usually do it is whichever one of us goes to sleep first the other is responsible for getting out the medicines.  Anyway, last night our tried and not-so-trusty system failed (again).  So this morning, I am blogging in a higher level of morning pain than usual.  While I usually wake up at a 6 to 7, now I am an 8.  (See sidebar for my personal pain scale.)

Lately my biological clock is ticking like a madwoman, assuming clocks are women.  I see, hear, think, breathe, dream, read, etc. about babies.  I even went so far as to make a blueprint of our bedroom showing our furniture now and the way it would be rearranged when we bring in a little one.  DH thought that I wanted to have a baby right now.  As much as I'd welcome a baby, right now would be a really bad time.  While we are still having people living with us we wouldn't have a baby.  We also want to be on our feet financially first, as well as for me to be in better health to carry a baby 9 months and take care of him once he's born.  When DH found out that I didn't want to have a baby now he was much happier.  He, too, wants to have a baby soon, we just want to wait until the timing is better. That doesn't stop my baby obsession, though!  I can't think of anything but babies and my favorite books to read before going to bed are fertility books in hopes I'll dream about babies.  I've read that your biological clock ticks loud when your eggs start disappearing rapidly.    If that is so, that's another reason for babies to be on my mind.  I only have so many eggs, and they could cause our bundle of joy to have EDS.  What a mind fuck.  DH will be such a good Daddy.  The first time I saw him and Sterling look at each other I saw oceans  of love there than many people never reach or see.  His heart his huge, that's why he gets hurt easy.  DH and I will make a lovely baby when the time is right.

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