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) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ High Cholesterol

Wednesday, July 21, 2010

Wordless Wednesday: Happy Times! My Niki growing up!

Niki at 4 months

Niki at 11 months

Wednesday, July 14, 2010

Suspected Transient Ischemic Attack (TIA)...WHAT??

I saw the neurologist today about that spell I had yesterday.  I had a spell where I could only walk left.  It was really weird.  Afterwards I slept for an hour in a really deep sleep.  Anyway, Dr. A seemed to think it was more likely to be a TIA which is a Transient Ischemic Attack, or mini-stroke, more than a seizure.  I have temporal lobe epilepsy but, like I said, he didn't think this was a seizure.  He told me to take aspirin every day.

I thought that was kind of bizarre, I mean I'm only 29!  I don't know if that is a vascular or neurological in cause.  I mean could it be the Ehlers-Danlos Syndrome?  For anyone who doesn't read my blog, I have the hypermobility type but a consult rheumy said he thought I might have the vascular type.  I'm seeing Dr. Willing in St. Louis, Missouri next month, she is an EDS specialist.

So...what now?  I guess take aspirin everyday and wait to see Dr. Willing to see if it is EDS related.

Thursday, July 1, 2010

30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
Ehlers-Danlos Syndrome (EDS), Epilepsy (Seizures), & Fibromyalgia

2. I was diagnosed with it in the year:
Ehlers-Danlos-2009, Epilepsy-2005, Fibromyalgia-1996

3. But I had symptoms since:
Ehlers-Danlos-birth, Epilepsy-unknown, Fibromyalgia-childhood

4. The biggest adjustment I’ve had to make is:
I can't drive and I can't wear high heels anymore.

5. Most people assume:
that if I'm talking and laughing I'm not in pain, when actually it does NOT mean I'm can't be in incredible pain. I've just learned to bear it unless it is at it's absolute worst.

6. The hardest part about mornings are:
Getting through the morning stiffness & pain then not going back to sleep after my morning medicine makes my sleepy.

7. My favorite medical TV show is:

8. A gadget I couldn’t live without is:
my laptop.

9. The hardest part about nights are:
when I can't sleep all night from the pain then have to get up the next day even more tired and in pain than the day before.

10. Each day I take __ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I:
simply don't have the money, though a friend in Colorado once did reiki and it helped a lot (thank you Mary Lou).

12. If I had to choose between an invisible illness or visible I would choose:
I just know how to be me, so I can't fully understand the other until I've walking in their shoes.

13. Regarding working and career:
I want to SO bad but may not ever be able to.

14. People would be surprised to know:
How it hurts my pride that I have to be dependent on everyone.

15. The hardest thing to accept about my new reality has been:
going through the grief process, with the conditions that do not go way and are chronic it makes the grief process seem endless.  That's really hard for me.

16. Something I never thought I could do with my illness that I did was:
to be able to raise awareness for Ehlers-Danlos, Fibromyalgia, and Epilepsy but I am/

17. The commercials about my illness:
don't give anyone without it a clue how bad it really is.  I've only seen commercials for fibromyalgia, though.

18. Something I really miss doing since I was diagnosed is:
wearing cute shoes and going on long walks!

19. It was really hard to have to give up:
my cute shoes...I still can't throw them away!

20. A new hobby I have taken up since my diagnosis is:
well I took it up again after years of not doing it-- penpalling!

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

22. My illness has taught me:
to treasure small moments and to have more empathy for others.  We have no idea what someone else is going through.

23. Want to know a secret? One thing people say that gets under my skin is:
You just need to get out more & If you'd get more exercise...oh and I have to add "I know such and such and they cured it by (insert crazy idea here.)"

24. But I love it when people:
treat me with respect and believe me.

25. My favorite motto, scripture, quote that gets me through tough times is:
The Hail Mary

26. When someone is diagnosed I’d like to tell them:
learn all you can about it AND have support. For myself I've found a lot of support online. I love you guys.

27. Something that has surprised me about living with an illness is:
how hard it is, yet at the same time I seem to have become a nicer and calmer person.  I never thought I could be this brave, but I have no choice.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Jim always gets me sodas when I am in too much pain to walk and carries my purse.  He's so sweet to me.

29. I’m involved with Invisible Illness Week because:
I want ppl to know that even if you can't SEE someone being sick doesn't mean that they aren't!

30. The fact that you read this list makes me feel:
really good. Thank you.


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