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 With Psychotic Features ~ 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) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema

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.

Tuesday, February 22, 2011

Rare Disease Day Monday 28 February 2011

The rare disease I live with is: Ehlers-Danlos Syndrome (plus possible Chiari, but I will answer questions for EDS),

I was diagnosed with it in the year: 2009

But I had symptoms since: I can't remember not being in pain

The biggest adjustment I’ve had to make is: I can't go walking like I used to, whether at a park or at the store

Most people assume: if I smile I'm my pain levels are low or non-existent. If you've had pain for your whole life doesn't it make sense that you've learned to smile through pain?:  My favorite medical TV show is: Scrubs

Each day I take __ pills & vitamins. (No comments, please) 29 to 33 depending on how I'm doing that day

Regarding alternative treatments: I wish! Medicaid doesn't pay for them. The best I can do is herbal teas, and I have a massager I use on my legs with are always hurting and feel very heavy.

I really miss doing: hiking in the woods and wearing high heels.

My hobbies I can still do (or have begun): scrapbooking, writing, reading, collecting books, pen palling, blogging, FB, & twitter

If I could have one day of feeling normal again I would: go hiking!

Want to know a secret? One thing people say that gets under my skin is: "You'll feel better tomorrow:" or "You're too young for so many medical issues." This is said with an implied you-aren't-really-sick.

It makes me feel special when people: Someone opens the door for me or gives up their seat to the girl with the cane. ;-) It really is seriously painful to stand. It reminds me that chilvary is not dead.

My favorite motto, scripture, quote that gets me through tough times is: "Tomorrow's another day/And I'm thirsty anyway./So bring on the rain."

What good stuff has happened because of my rare disease:I've made a lot of friends on facebook & twitter I'd never have met otherwise.

Friday, February 11, 2011

Listen to the bunny!

Listen to the bunny!
IBS incredibly freaking sucks.  My body is so screwed up.  I usually have a hard time peeing, it usually takes five minutes to pee.  I think it has something to do with Chiari or cranial instability, or it could be pelvic prolapse.  I haven't had any children or a hysterectomy and I have the hypermobility type of EDS, so I don't think I am developing pelvic prolapse.  It is more common for the other types of EDS to develop pelvic prolapse.  Since the IBS is so freaking screwed up right now it is one of my main complaints at the moment.  Well, IBS and EDS are my main complaints.  EDS is always right at the top.

Today we woke up and Robert had left with all his stuff; he left no note.  DH and I considered Robert a friend, so it is incredibly hurtful that he did that.  I'm not saying we wanted him to stay longer, the whole idea was for him to stay long enough to get on his feet and get his own place, but he owed us a good bye at least.  We don't know if he is safe or where he is.  It hurts my DH really bad because he thought of Robert as a friend.  When someone hurts my DH they are on my shit list for their lifetime.  My DH has been hurt by enough people in his life.  I don't know if DH would let Robert come back if he wanted to, but I hold the strong opinion that once someone moves out they are out.  We now have "only" three other adults in the house besides DH and myself.  I am very angry at Robert for hurting my baby.  DH gave him a snowsuit and was very excited he was able to find someone to wear it.  Robert left it behind and that really hurt DH.  Like I said I am so very mad at Robert for doing this!

EDIT:  Robert just called and he's in jail.  So...I have no idea how we can help him.  It is for unpaid parking tickets.  Now I feel bad, so I wanted to add this edit.  

Saturday, February 5, 2011

Another Look Back on 2010...

1. What did you do in 2010 that you’d never done before?

Started reading the Qur'an.

2. Did you keep your new years’ resolutions, and will you make more for next year?

I made one to read 75 books and keep track of them.  Yes I did it.  I am repeating it but more importantly I have monthly goals rather than one big resolution.

3. Did anyone close to you give birth?


4. Did anyone close to you die?

No, thank God.

5. What countries did you visit?

None. I did cross the border to Kansas, though.  Does that count?

6. What would you like to have in 2011 that you lacked in 2010?

Good health

7. What date from 2010 will remain etched upon your memory, and why?

The first minutes of the 2010 are etched in my mind. :-)

8. What was your biggest achievement of the year?

Helping raise awareness of EDS & fibromyalgia.

9. What was your biggest failure?

Letting squatters take over our home this past summer.
10. Did you suffer illness or injury?

Yes, of course.

11. What was the best thing you bought?

Veterinary bills to get our Niki fixed up when we got her

12. Whose behavior merited celebration?

Tiffany & Derek (the squatters) LEAVING our house.  I celebrated that!

13. Whose behavior made you appalled and depressed?

Tiffany & Derek squatting in our house for months & protected by our county's squatter's laws.

14. Where did most of your money go?


15. What did you get really, really, really excited about?

Getting Niki and starting grad school.  Unfortunately because of my health I didn't get to stay in grad school long.

16. What song(s) will always remind you of 2010?

I don't know.  It would have to be a song about being trapped in a nightmare or something.
17. Compared to this time last year, are you:

a. Happier or Sadder? Sadder

b. Thinner or Fatter? Fatter

C. Richer or Poorer? Poorer

18. What do you wish you’d done more of? 

Stay to ourselves.

19. What do you wish you’d done less of?

Not staying to ourselves.
20. How did you spend Christmas?

My wonderful friend Nancy brought us a dinner.  I opened a present from my wonderful pen pal Laura and I played Christmas music all day. :-D

21. How many one-night stands?


22. What was your favorite TV program?


23. Do you hate anyone now that you didn’t hate this time last year?


24. What was the best book you read?

Standing in the Rainbow by Fannie Flagg
25. What was your greatest musical discovery?

Lady Gaga

26. What did you want and get?

I wanted grad school, better health, increased knowledge, and for my DH and kitties to be safe, happy, and healthy.  I got increased knowledge, more experience, a new kitty, a larger capacity to love, a summer of being trapped with squatters in our house, more friends, more stressed and anxious, more fear, more in poverty, more pain, bitter, and more flashbacks. 

27. What was your favorite film of this year?

Land of the Lost

28. What did you do on your birthday?

I honestly don't remember.  I don't think it was much different than any other day.

29. How would you describe your personal fashion concept in 2010?

Jeans or sweatpants in a sleeveless shirt or a sweatshirt and barefoot.  Whatever combinations you make from them was all I wore all year (just about). i.e. jeans/sweatshirt, jeans/sleeveless shirt, sweatpants/sweatshirt, or sweatpants/sleeveless shirt

30. What kept you sane?

I wasn't aware I was sane.

31. Which celebrity/public figure did you fancy the most?

Ellen DeGeneres

32. What political issue stirred you the most?

Gay marriage
33. Who did you miss?

my dog Togy

34. Who was the best new person you met?

I didn't meet anyone worth meeting.

35. Tell us a valuable life lesson you learned in 2010:

You know the situations where you think you'd never be in?  Well, someday it may be you housebound and waiting for a meal from the soup kitchen.  I wouldn't have dreamed that would be me in a million years.

I have never...

1.  gone to prom.  I don't regret it either.

2.  had a serious injury, thankfully!

3.  been out of the country...yet!

4.  read the entire Bible or Qur'an.

5.  rode a roller coaster...and I'm not about to, either!

6.  driven a motorcycle.  Nope, not for me!

7.  rode a horse, though I've always thought it would be cool.

8.  memorized my multiplication tables.  Yes, it's true!

9.  eaten Greek yogurt.  I saw it the other day and I don't know what it is, really.

10.  read Shakespeare while standing on my head.


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