Translate

5/19/2019

Ehlers-Danlos Awareness Month


How fitting that I start this blog and share my diagnosis the month of May after just finding out. I decided to join this EDS Awareness Month Challenge so here goes:

1. What type do you have?
Currently I am diagnosed with hypermobile (hEDS), but doing the genetic testing after all the upcoming specialist doctor appointments because there's a good chance I could have vascular with the birth experience I had with my second child.

2. When were you diagnosed?
April 19, 2019 at my first rheumatologist appointment and then confirmation with my dermatologist last Tuesday.

3.  Comorbidities?
What we are currently testing and have appointments to confirm and rule out. Possibly another autoimmune like Sjorgren's Syndrome, MS, POTS, and MCAS.

4. How hypermobile are you?
9/ 9 on the Beighton Score so I guess very?

5. Are you "stretchy"?
For sure - gymnast & cheerleader when I was younger and definitely did the party tricks they talk about that usually mean you have EDS.

6. Mobility aids?
Starting off with a cane.

7. Pain Management?
The main problem right now. Haven't been able to get into see a pain specialist and medicines that I've tried with rheumatologist have only amped up pain. Will start PT on Thursday and have been walking (more of a minimum currently with how much pain I'm in), pilates and isometric exercises on my own since they don't recommend everything I use to do with strength, cardio, and stretching. Heating pad is always my go-to and foot rubs from the husband to help distract ;)

8. Surgeries?
Most were exploratory to explain all my issues before I finally got diagnosis - endoscopy, colonoscopy, laparascopy, and finally hysterectomy last year. We had hoped the hysterectomy would fix my pain issues, and it did for months, but returned continuously. I want people to know though there were many reasons for the hysterectomy and although I have the pain again, it helped a ton of other issues.

9. Hospital stays?
Hospital bed rest with 2nd pregnancy.

10. What is "your normal"?
Exhaustion/fatigue, pain, migraines, digestion problems, nausea, & allergies.

11. What is your flare like?
Difficult time making it out of bed, feels like the flu- fever, chills, sore throat, stomachache.

12. What specialists or types of doctors do you have?
General Practitioner, Rheumatologist, Dermatologist, Allergist, Neurologist, Gastroenterologist (new one eventually), Cardiologist, Physical Therapist, Counselor (and hopefully a pain specialist here soon or will get a referral for one in Dallas)

13. Funniest EDS story
Now that I'm aware of symptoms of Ehlers-Danlos Syndrome, I realized it would explain so many times randomly falling, not just being extra clumsy. In high school my junior year during passing period I was walking down the stairs and my legs just gave out and I fell down the rest of the way. Of course I was completely mortified, but when my friend in the next period starts telling me how some girl fell down the stairs and it was hilarious, I was just a tad embarrassed ;) That really began me learning to laugh it off when I have so many of those experiences because it is pretty entertaining for others when it happens.

14. Worst doctor experience
Probably getting denied 2 weeks ago by a referral from a friend for a specific pain specialist who said that my rheumatologist should be able to help me.

15. Best doctor experience
Meeting my rheumatologist who finally figured out what I have so far. After so many years of seeing doctor after doctor, I usually get super nervous and have major anxiety about it. As soon as she walked in my sister and I just felt her wonderful presence she has. 

16. What is your support system like?
If you know my husband, than you know how good of hands I'm in. Also, I feel like they are his support system too, making sure he's ok and gets breaks. Even my daughters, who are 1 and 3, know when Mommy is having a particularly hard day, which have been more often than not, try to help me and take care of me. Every day I'm in awe of how God led us back here because we can't imagine what we do if we didn't have my sister and parents to not just watch the girls for all my appointments and during the tough tough times, but to cry with me, get nervous for appointments just as bad as me, hug me. Then our family nurses who are my advocates, making sure I'm safe with my medicines, listening, and checking on me. All our family and friends who are also telling me they are thinking of me and want to know how I'm doing. Our church for praying for me and offering to help us in any way. I truly have the BEST support system.

17. Do you think EDS is "expensive"?
Thank goodness we have good health care and free childcare when we need it, but unfortunately all the trips to Dallas are not free. After my experience with all the appointments there so far, we know it's all worth it.

18. Do you consider yourself disabled?
Actually I have been contemplating that subject lately. Part of me is still too proud to accept that yet.

19. Have you experienced ableism?
This is a great post about it -> http://authorbrandikennedy.blogspot.com/2018/07/?m=1 
I definitely feel like it's a lot different with people who have invisible illnesses.

20. Worst part of EDS?
That it is so rare and usually goes undiagnosed because it was not knowing so many symptoms were all connected or what would explain the many things wrong with me for so many years.

21. One thing EDS has taken from you
My activeness/athleticism so getting to really play with my kids.

22. One thing EDS has given you
Perspective

23. Something you wish everyone understood
Why I may not answer a phone call, reply to a text, or have to cancel plans last minute. It is so frustrating being so undependable now, but that doesn't mean I ever want you to stop asking or inviting :)

24. If you could rid yourself of one EDS symptom, which would it be?
PAIN




25. One person you're grateful for
My Aunt B, she's had very similar difficulties and obstacles and it breaks my heart thinking of anyone else going through this, but I'm so grateful that she's open with her experiences and helping me.

26. Scariest part of your future with EDS?
How accurate the chart below is.



After I started really learning about this syndrome, one of the "aha" moments was a comparison of my sister and I. When we were middle/high school years, every summer we'd go to Pennsylvania to visit my grandparents and train/swim competitively. Yes, we got up early hours and swam and worked out at an elite level, but she would come home to shower and eat and then off to spend time with friends doing all sorts of activities. Me on the other hand, I'd need about a three hour nap, and then would feel like I was hit by a bus the rest of the day. She remembers it too. It's still true to this day except I haven't swam or worked out like I used to do.

27. What are your health goals?
Find my balance - where I can be as active and strong as I can for what my body needs, but understand boundaries and not overdoing it. This has been difficult finding balance in doing housework, cooking, pouring into the girls.

28. Have you ever met someone else with EDS in person?
Now that we are aware that I have it, we are connecting dots on who else in my family probably had or has it. There are so many amazing EDS support groups and I am hoping one day I can attend a conference and meet other zebras.

29. If there was a cure for EDS would you take it?
In a heartbeat, for my husband and girls.

30. How do you make your invisible illness visible?
Trying to now share my story. I've always been self conscience not wanting to seem difficult, weak, or a victim and just tough it out. Sharing my experience has not been my idea because I'm usually a pretty private person. I always thought God blessed me with physical talents/gifts to share and help others in the fitness/nutrition realm. I had so many plans on how to do this even last year when I thought I was cured and was going to use my experience to inspire others to be healthy and what God can do. Let's just say I am now understanding the path He has for me because it really will show a testimony of Him and what He can do and how He can use us.

31. What does awareness mean to you?
For someone who didn't know about Ehlers-Danlos Syndrome until I was diagnosed a month ago, it means talking about it so other people might not have to wait so many years to get a diagnosis.



Any questions you have about EDS?

Human Beings are God's Love Language


In the previous post I shared this video. The past couple months have been difficult, but during these tough times I have constantly had the same thought that Kushner mentions in his talk, God answers my prayers through caring people. I know my family, friends, church, and doctors don't do what they do for acknowledgement or praise so I felt funny bragging on them, but realized recently they are my miracles and I should shout them as loud as I can (or share a few pictures on here).

Meal prepping for us even with my dietary restrictions
All the continuous prayers 🙏
All the thoughtful calls, texts, cards, & gifts of encouragement
Pampering me for Mother's Day
Treating me to coffees & lunches
Surprise visits with delicious goodies & hugs
Keeping me company at appointment or watching the kiddos
Paying for me to try the HOCATT to see if it would help

I leave you with this quote & the title of this post because I believe it to be true and have seen evidence of this over and over again.
 "Human beings are God's love language"- Harold Kushner



How has God used human beings in your life to show you He loves you?

5/17/2019

When Bad Things Happen to Good People


THIS 👆

It's super long, but super worth it. If you want to just listen to a bit, start at minute 43.

5/15/2019

A Diagnosis, Finally!

I was waiting to start sharing updates until we had more answers, saw more doctors, and had more tests done to rule out other things, but today has been a monumental day. There have been so many "aha moments" that I just feel like we finally have answers. It's definitely the beginning of the journey, but it feels so good to feel validated and have explanations. It's just reassuring. Not that I didn't truly know something wasn't right and my health wasn't ok because I obviously haven't stopped going to new doctors, running or tests, retelling my story and symptoms, but it really gives me the confirmation I'M NOT CRAZY.

After today, I have been so excited (which is a weird term to use) to share with those that care, research, follow along, and pray for me and my family what I'm learning and the pieces I'm finding to my puzzle.

Ehlers-Danlos Syndrome (EDS)

If you are like me and when my rheumatologist mentioned something at my first appointment about having a hypermobility syndrome and kinda went, "what, is that a thing?" YES, YES IT IS! After leaving the appointment, my sister and I immediately started googling because the doctor did say it could explain a lot of my issues. We weren't expecting what we would start reading and of course now you know she found my diagnosis. At my next check up with her 2 weeks later, I could barely hold back tears to tell her all the little things I didn't even think to mention were symptoms that I've always had and dealt with just brushing off.



Favorite link so far that I would love for you to read 👇


Stay tuned!