I actually did this last year, but since it's been such an eventful year, with a few new diagnoses and other changes, I thought I would make it better fit with where I am now.
1. The illness(es) I live with is/are: Classical Ehlers-danlos syndrome, Postural Orthostatic Tachycardia Syndrome, osteoporosis, borderline chiari, Barrett's esophagus, and a whole host of other supporting cast... too many things, and I'm not sure if I want to know more right now. I need a break!
2. I was diagnosed with it in the year: The POTS was diagnosed a year ago. The CEDS was diagnosed November 8, 2010 and everything else in between there somewhere.
3. But I had symptoms since: my whole life. I remember not wanting to run in kindergarten because my ankles were already subluxing and dislocating then.
4. The biggest adjustment I’ve had to make is: learning that the true worth of a person isn't how much they can give and do, but how much they can love.
6. The hardest part about mornings are: standing up. Heart-rate and dislocations are at their worst in the morning (most days... sometimes it's only downhill from there).
7. My favorite medical TV show is: House, probably, though it's difficult to watch others with these rare, but most curable diseases, being diagnosed and cured within an hour, espeically since it's taken me several years to be diagnosed correctly.
8. A gadget I couldn’t live without is: 1. My handicap placard. 2. My computer, as being able to connect with others who have similar issues to deal with is helpful. 3. My Kindle. Seriously, every book-worm spoonie should invest in a Kindle, as the free books I've downloaded thus far have more than paid for the cost. It's great to have when waiting for doctor's appointments (I've done a great deal of my reading in waiting rooms), and my hands don't hurt nearly as much holding that as it is holding a 300+ page book.
9. The hardest part about nights are: the insomnia, because I hurt too much to sleep or my ANS is really cranky and wants company.
10. Each day I take: tons of water and salt. Runner's gel and electrolyte tabs are great for dehydration.
11. Regarding alternative treatments I: can't do acupuncture, as it makes my pulse and bp do strange things for a few days afterwards. I do massage therapy, and am slowly changing and learning about optimal nutrition (getting enough magnesium in my diet for the osteo and muscle spasms, for example)
12. If I had to choose between an invisible illness or visible I would choose: His will be done. I do not care... suffering is suffering. That which is not to the detriment of my soul.
13. Regarding working and career: I wish... I am in school right now, still working towards a music degree (at least a certification). I want to be an organ choirmaster, but I would be happy even filling in for other's vacations and such.
14. People would be surprised to know: how much I view my illness as a blessing. To quote St. Paul in his second letter to the Church in Corinth: "To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." As a Christian, I am to worship God with all of my heart, mind, soul and body... I am reminded of the story of the widow and the two mites.
15. The hardest thing to accept about my new reality has been: well, it's not so much of a new reality, as my whole life has been like this. The only new about it is that I'm not being called a hypochondriac by the medical profession anymore, and I have a letter on official stationary that says that I have these things. Yes, I have been fighting my whole life to have someone believe me, and now that I do... it's difficult to know what to do with that.
16. Something I never thought I could do with my illness that I did was: Drive 18 hours in a 3 day period... exhausted doesn't cover how tired I was afterwards.
17. The commercials about my illness: I'm not special enough to have commercials about my illness. Not enough people have it (or it is terribly under-diagnosed, which is my supposition) to warrant the advertising costs.
18. Something I really miss doing since I was diagnosed is: Nothing in specific... As my symptoms get worse, I have to modify my behavior even more, but I've been doing that my whole life.
19. It was really hard to have to give up: smoking... but so much easier than I thought it would be. And I'm SOOO glad to be an ex-smoker!
20. A new hobby I have taken up since my diagnosis is: blogging and reading many patristic writings in the wee hours of the morning.
21. If I could have one day of feeling normal again I would: do not much different... maybe with more energy, and with less crashing in between, but I make sacrifices now to do the things I love the most here on earth (playing organ and singing are surprisingly rough on an EDS/POTS body).
22. My illness has taught me: humility, patience, a greater understanding of the suffering of others maybe not exactly as they understand it... but I've learned that suffering is suffering, and that through love, it becomes more than suffering.
23. Want to know a secret? One thing people say that really bothers me is: "Are you feeling better?"
24. But I love it when people: randomly surprise me with their knowledge. A few months ago, I was in the grocery store, using the in-store cart and my neck brace. When I was parking the cart, heading back out to my car, someone asked me what happened, and if they could help me. I mentioned I had a collagen deficiency, and the gentleman mentioned Ehlers-danlos syndrome and he had learned about it in dental school... this is just one of a few encounters I've had since I've been diagnosed, and I try to clear up misconceptions at each encounter.
25. My favorite motto, scripture, quote that gets me through tough times is: From two of the St. Therese's (or Teresa):
We always find that those who walked closest to Christ were those who had to bear the greatest trials."
~St. Teresa of Avila
"The greatest greatest honor God can do for a soul is not to give it much, but to ask much of it."
~ St. Therese of Lisieux
"Suffering is the very best gift He has to give us. He gives it only to His chosen friends."
~ St. Therese of Lisieux
26. When someone is diagnosed I’d like to tell them: I am sorry... Allow yourself time enough to grieve for what you have lost, because there are losses, but at the end of that time, don't stay down, because you are more than your diagnosis! You are still the same person, at the core. You don't change... your situation might have changed, but what makes you, you cannot be changed without your permission. God give strength to endure to those who ask... He doesn't give the whole lifetime supply at once... He gives you just enough each day to get through, and He is ever faithful.
27. Something that has surprised me about living with an illness is: how much faster my 70 something organ teacher can go up stairs than I can... She can run up a whole flight before I'm even on the 4th step. Also, how weak I am and how little I can do.
28. The nicest thing someone did for me when I wasn’t feeling well was: immediately start praying with me.
No comments:
Post a Comment