Postural Orthostatic Tachycardia Syndrome (POTS). I’ve also received many other diagnosis, but most simply explain the array of odd symptoms that are related to the POTS. Example diagnosis include hypermobility, fibromyalgia, chronic fatigue, and irritable bowel.
2. I was diagnosed with it in the year:
3. But I had symptoms since:
I could say since birth (1985), but the severe stuff started in 1996.
4. The biggest adjustment I’ve had to make is:
Realizing that . . . . “I can’t “do it all”. . . “His plans are not my own” . . . and “I’m not superwoman”
5. Most people assume:
I don’t know what they assume. I think many people (even those close to me) forget my limitations. They remember me as my good days and get taken back when I have to remind them of a limitation. I prefer it that way though. I don’t want to be seen as just this sick person that can’t do anything. I may have to be more effective with my time and more creative, but I can still accomplish great things.
6. The hardest part about mornings are:
The pain and dizziness that happens with the first few steps.
7. My favorite medical TV show is:
Don’t know . . . I like the real ones . . . like the ER shows on TLC. I get annoyed at medical TV shows where the writers don’t really understand the medical part.
8. A gadget I couldn’t live without is:
My heating pad! It is always in my bag if I have to spend the night some where, and mom has learned to keep hers handy for me as well.
9. The hardest part about nights are:
Nights are actually pretty good for me most of the time. I need more sleep than most, but thankfully have very few sleepless nights.
10. Each day I take __ pills & vitamins.
Currently “0”!!!!! This is very rare for me though, and I’m on a pill that I take as needed every other day. I have taken as many as 185 pills a week though. I’ve been in a couple research studies and have had to wean off the pills for the studies. If I hurt with or without them and they only are supposed to treat the symptoms then I try not to take pills unless absolutely needed. Plus there are no FDA approved drugs for my condition. All the medications we used are meant for other ailments.
11. Regarding alternative treatments I:
I salt all my food until I can see it, drink lots of water and salted Gatorade, used to sleep on an 8 inch incline, use medical support hose, and exercise for healing (not vanity). I’ve also tried some other techniques such as massages, biofeedback, yoga, water therapy, and homeopathic therapy.
12. If I had to choose between an invisible illness or visible I would choose:
Neither. I can’t wait to have my perfect body in heaven. But seriously, my POTS has turned into a visible illness many days as I have large tremors or have to depend on the walker for mobility. I slightly prefer the “visible” days because I don’t get crazy looks for parking in the handicapped spot. I get looks of genuine sympathy and concern. There are less mind games to play when the illness becomes visible.
13. Regarding working and career:
This is probably what I miss the most. I’ve always been an over achiever, but now I am physically unable to work. I’m a certified strength and conditioning specialist (the certification most college coaches are required to obtain). I’ve worked in many areas of health and fitness, but currently can not do it. There have been times when I’ve been determined to put mind over matter and work despite poor health, but too often it did not end well. I was often stranded by the side of the road unable to continue driving, or if I got home safely I would have no energy left for myself or my husband. Despite the financial difficulty and shot to my ego involved, I now stay home.
14. People would be surprised to know:
That this was the hardest question to answer 🙂 I guess I could say the fact that shocked the doctors the most is not only the severity of my heart rate variability while standing, but the fact that my blood pressure tends to fluctuate even more. This is very atypical for my condition.
15. The hardest thing to accept about my new reality has been:
That I am not in control.
16. Something I never thought I could do with my illness that I did was:
Stand during my own wedding and enjoy my honeymoon without getting sick. God blessed me with about 6 months of great health right before, during, and after the wedding.
17. The commercials about my illness:
There are none. Many doctors don’t even recognize it.
18. Something I really miss doing since I was diagnosed is:
Since my condition worsened . . . I miss running. It may sound crazy, but I absolutely loved running. It was a stress relief, an outlet, a passion, and it is now gone.
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
After I had to stop running, I started some light gardening. I loved it, but now can barely do it. I’m now trying to get into sewing and similar crafts.
21. If I could have one day of feeling normal again I would:
Catch up on all the things around the house that I wish I could do, but know I can’t. I’d edge the lawn, weed the flowerbed, deep clean the baseboards, finish the laundry, then go for a long run.
22. My illness has taught me:
That Christ is in control through ALL situations. I don’t know how people can live with this without knowing Jesus Christ personally. He has been my rock and my shelter through all of the pains and heartache. Matt loves me more than I can fathom and has been force to show the “through tough times and in sickness” love more in the first 4 years of our marriage than either of us ever imagined. People can be cruel, but it is typically through lack understanding. Even the most professionals with multiple degrees don’t have all the answers.
23. Want to know a secret? One thing people say that gets under my skin is:
If I try to politely get out of an obligation without having to tell my life story, it really irritates me to hear “Yeah, that bug is going around . . . “bob” had it last week.” Really? Do you know me at all? I think it all boils down to the point that I greatly appreciate my friends, family, and church members that genuinely care about my well-being. I don’t want or need anyone’s sympathy. If you don’t really care to know how I’ve been feeling this week, or what the latest news is – DON’T ASK!!!!
24. But I love it when people:
Check in on me with more than casual “How’s it going?” I love it when I can tell you honestly care.
25. My favorite motto, quote that gets me through tough times is:
Funny, but . . . “Life’s tough and then you die” I wasn’t placed on this earth to live a perfect life. Only Christ did that. I was placed here to grow in Christ and do His work. My life on earth is meant to have hard times, but when I die I know beyond a shadow of a doubt that I will be standing with Christ in Heaven and all of this will be as a vapor in the wind.
26. When someone is diagnosed I’d like to tell them:
You are not alone. Call me ANYTIME you need to talk or have a question. It was about 12 years after I was diagnosed before I met anyone else with POTS. We are not alone.
27. Something that has surprised me about living with an illness is:
The amount of stuff in this life that really isn’t as important as we once thought it was. Also, I’ve been amazed by the incredible amount of stuff I can accomplish with only 3 hours of energy on my good days.
28. The nicest thing someone did for me when I wasn’t feeling well was:
Matt gave me a “get better or else” gift once. It wasn’t the gift itself, but the time, energy, and emotion put into it. Just sitting with me goes a long way too.
29. I’m involved with Invisible Illness Week because:
Lis Copen and Rest Ministries helped me emotionally get through the first several years of battling with POTS. God spoke to me through the Rest Ministries email devotionals. I do not despair over this life, and they helped me open my eyes to that reality.
30. The fact that you read this list makes me feel:
Loved. I have a purpose, and as much as POTS hurts and slows me down, it is a vital part in that purpose. Jeremiah 29:11