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 Rapid Cycling ~ 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 Headaches

Friday, September 13, 2013

30 Things About My Invisible Illness You May Not Know: Dysautonomia (POTS)

1. The illness I live with is: Many, but this blog entry will be about Dysautonomia (POTS).

2. I was diagnosed with it in the year: 2011 or 2012

3. But I had symptoms since: I'm not sure, but they only became really bad in the last two or three years.

4. The biggest adjustment I’ve had to make is: I can't shower by myself anymore.

5. Most people assume: That "POTS" has something to do with flower pots, pots & pans, or drugs.  This annoys me to no end!

6. The hardest part about mornings are: the dizziness, weakness, and shakiness.

7. My favorite medical TV show is: Scrubs.

8. A gadget I couldn’t live without is: Powerade Zero!  Is that a gadget?  I seriously couldn't live without it, though.

9. The hardest part about nights are: The dizziness, weakness, shakiness, and pain from the falls I had that day.

10. Each day I take 47 pills & vitamins. (No comments, please) 

11. Regarding alternative treatments I: drink lots of water, and drink Powerade Zero.  I also take Magnesium.

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I can't work, but someday I want to write The Great American Novel.

14. People would be surprised to know: I am not under a doctor's care for my POTS, because my doctor, at a medical school, and her supervisor doctor, don't know what to do for POTS, so they told me not to come back.

15. The hardest thing to accept about my new reality has been: How scary it feels when I'm in tachycardia and how exhausting it is to simply stand up.

16. Something I never thought I could do with my illness that I did was: Pass out face first on the sidewalk outside the hospital where I was getting physical therapy for my EDS (Ehlers-Danlos Syndrome).

17. The commercials about my illness: I haven't seen any.

18. Something I really miss doing since I was diagnosed is: Having more energy.

19. It was really hard to have to give up: showering without help.

20. A new hobby I have taken up since my diagnosis is: crochet.  It's not a new hobby, but I've taken it up again, and I'm much better at it than I used to be.

21. If I could have one day of feeling normal again I would: stay awake all day, shower by myself, and not have so many falls.

22. My illness has taught me: to not take standing up for granted.

23. Want to know a secret? One thing people say that gets under my skin is: "Everyone's been tired before!" and "You're heart rate gets up high when you exercise, why would it bother you now?"  Ignorance sucks!

24. But I love it when people: Don't make a big deal about it if I fall.

25. My favorite motto, scripture, quote that gets me through tough times is: "But tomorrow's another day, and I'm thirsty anyway, so bring on the rain." ~Jo Dee Messina

26. When someone is diagnosed I’d like to tell them: I'm not sure, really.

27. Something that has surprised me about living with an illness is: How lonely it is.

28. The nicest thing someone did for me when I wasn’t feeling well was: My DH (Darling Husband) gave me my Valentine's Day presents a day early. ❤

29. I’m involved with Invisible Illness Week because: It's important to spread awareness that not all disabilities are visible!

30. The fact that you read this list makes me feel: Honored!  Thank you very much!

Saturday, March 16, 2013


I have a horrible secret to disclose.  I'm jealous.  I'm jealous of other people who are sick with the same things as me and can leave the house and even drive, but complain that their pain is worse.  It makes it worse when those people insinuate that I must not try very hard if I'm homebound with pain, or suggest that really it's mental.  I'd expect this least of all from an EDSer.  I'm jealous of people with good insurance, because I know with good insurance, instead of state Medicaid, I'd be healthier than I am, and could see good doctors.  I could even get braces made for me, rather than having to buy them on Amazon or at Wal-Mart.  I'm nearly jealous of people with my disorder who can walk, drive, work, or go to school...and I hate that.  I hate being jealous, and I'm usually not a jealous person.  Some EDSers can even climb stairs, something I haven't been able to do for years.  I haven't been able to drive for years either.  It pisses me off more than I can say when people say "well I do it because I have to."  Do you fucking think I don't have to?  DH (Darling Husband) is also disabled and I need to drive, too, but I can't!  I can't hold my hands up on the steering wheel, or push on the gas or brake, because the pain is so bad.  Or do you think that I don't want to drive, go up stairs, and get out of this fucking house with every bit of me?  Do you think I fucking like staying in this house all the time?  Do you think I fucking like my life like this???  I'm so lonely I cry from heartbreak every day as well as cry from pain every day.  

Saturday, January 5, 2013

A flare and I'll miss you forever

I've been in bed all day in too much pain to move.  I couldn't even hold the book I was reading, which incidentally, is very good.  So for most of the day I've been lying still, drifting in and out of sleep.  For 2012, I had a pain flare two to three times a month, and four times in December.  I made it until January 4th of the new year before I started flaring.  So...I made it a whole four days into the new year.

I have been doing good at keeping a food diary since the new year, all five days of it, and I need to be as diligent with keeping a pain diary.  I intend to keep up on all of my blogs a bit better this month, too.  The best I can do right now is to make monthly goals.  Making a goal for a whole year is just too overwhelming.

Obviously I'm moving now, at least enough to type.  I'm on the couch now, wrapped up in my zebra electric throw that DH (Darling Husband) got me for Christmas, and moving as little as possible.  I've tried some gentle stretches but they seem to only add to the pain.

I've been so frustrated with my hand pain lately.  I want to crochet so bad, but I can't because of the pain.  I see all these beautiful things I want to make on Pinterest and it's driving me nuts to not make them.  If you are interested in crochet, I have a few boards on Pinterest I'd like to recommend:

These aren't all of my crochet boards on Pinterest, but they are the best ones.

Christmas was nice, I was very thankful to have my own family: DH, Sterling, Niki, Katya, and me.  Our kitties are definitely our babies.  We just put up a tiny tree this year so they couldn't knock over anything big, and do a lot of damage.  Of course, they knocked over the small tree a million times.  We had a nice fake tree until a couple of years ago, but Niki climbed it a bunch of times the last time we had it out and she broke off and/or bent beyond repair the wire branches.

DH got me a zebra electric throw, which was perfect for all these flares.  He gave it to me early, well, because of the December flares.  He also gave me a craft knife set I can use for clay, which I want to try, on days that my hands are playing nice and not bitching at me.

I got horrible news from my parents a few days after Christmas.  My dog, who was my best friend growing up, and was there for me no matter what, passed away.  He was one of my soul mates, and I never would have made it through my teen years without him.  Heck, I wouldn't have made it through my favorite Aunt's two bouts of cancer if I hadn't had him to lick away my tears.

I just realized that there are tears streaming down my face.  I'll miss you forever, my puppy dog.

April 17th, 1994


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