Devotional Writer, Laura, Shares Her 30 Things Meme
Posted Sep 26 2013 9:00am
During Invisible Illness Awareness Week we asked our devotional writers to share their 30 Things Meme and so we will occasionally share these with you. I hope that it is an opportunity for you to get to know our writers a bit better, as well as be reminded that you are not alone in what you are experiencing. God meant for us to share in our struggles so we can encourage and comfort one another. -Lisa
1. The illness I live with is: dysautonomia, autonomic neuropathy and Ehlers-Danlos syndrome hypermobility.
2. I was diagnosed with it in the year: 2011, 2012, and 2013
3. But I had symptoms since: things started to get really bad in December 2010 but I can trace some symptoms of dysautonomia back probably eight years.
4. The biggest adjustment I’ve had to make is: I had to retire from my job as an elementary school counselor in July 2012 after 23 years. I loved my career.
5. Most people assume: since retiring things have gone smoothly for us but dealing with a chronic illness puts a constant strain on a family. We are a loving family but we all have to deal with the stress of my illness.
6. The hardest part about mornings are: getting up and getting the kids where they need to go regardless of what is going on with me. I have to chug Gatorade and take my medications first thing in the morning to help my body adjust and get started.
7. My favorite medical TV show are: Grey’s Anatomy and Royal Pains.
8. A gadget I couldn’t live without is: my iPad. It connects me to people throughout the world I have met in addition to providing music, reading material and information. I can even use it for writing.
9. The hardest part about nights are: it is difficult at times to fall asleep. At least once a week I can’t fall asleep and end up tossing and turning on the couch until 1 or 2 a.m. When I am sleep deprived I am more symptomatic.
10. Each day I take 29 pills & vitamins. (No comments, please)
11. Regarding alternative treatments: I like going to the chiropractor. He relieves some of the pain I experience and gets some of my joints back in to place. I could not live, however, without traditional medicine as when your autonomic nervous system is broken a lot of things go wrong and a good medical team is necessary.
12. If I had to choose between an invisible illness or visible I would choose: invisible. I hate attention so I am glad oftentimes you cannot tell there is anything wrong with me–unless I turn ghost white and have to dive to the floor.
13. Regarding working and career: I miss my career. This is my second official school year retired and my third in which I have not worked ( I worked two weeks in Sept. 2011). I still have dreams about working and while I am thankful I loved my job and had fun every day there is still grief in giving it up.
14. People would be surprised to know: I am not sure if I would go back to my old life if I had a choice. I am so blessed now–I am so much closer to God and my family. I have met new people and I treasure tiny, tiny things in my life that I used to overlook. I really do count my blessings each day.
15. The hardest thing to accept about my new reality has been: I miss out on things that I would like to do with my family. I can’t always go places, walk too far, sit at a restaurant, stand in a line, shop for very long–so this can become frustrating at times. I am reminded daily of what my body can no longer do.
16. Something I never thought I could do with my illness that I did was: start a HopeKeepers group which is a support group for those with chronic illness or pain at my church. It is a hoot and I have met some great people and reconnected with a colleague who has become a close friend.
17. The commercials about my illness: there are no commercials about dysautonomia. Unfortunately, even some doctors don’t know about this deregulation of the autonomic nervous system. This is ridiculous.
18. Something I really miss doing since I was diagnosed is: riding my road bike. I miss riding my 21-speed bike more than anything. It is a huge loss and while I can now ride a stationery bike it is not the same thing. I so miss my bike and the freedom it allowed.
19. It was really hard to have to give up: biking, shopping, working, freedom to go where I wanted when I wanted.
20. A new hobby I have taken up since my diagnosis is: I have always written but now I write for Rest Ministries and love it. I also am the advocate for the disabled and chronically ill at my church–which never would have happened if I did not have a chronic illness.
21. If I could have one day of feeling normal again I would: That is easy. The first thing I would do is throw my helmet on and jump on my bike. I would pedal probably 15-20 miles wherever my legs took me. I would feel my heart pounding and have that wonderful sweat all over my body–the kind that tells me I worked hard and had a great ride.
I would take a long shower and then spend some time with my husband and kids–go shopping, out to eat, walk without getting sick, read, go to Starbucks for some tea. I would stop at my favorite chapel at church for a bit and reflect on the amazing day and thank God for it. Then off to a Buffalo Sabres hockey game with my husband.
22. My illness has taught me: that life is unpredictable and relationships are so very important. My illness has also taught me to rely on God for strength as I could not do this without my faith.
23. Want to know a secret? One thing people say that gets under my skin is: “Oh, you must be better now since you don’t work, since you don’t have that stress.” Stress had nothing to do with my autonomic nervous system breaking and nothing to do with me retiring from my job. I am not better because I don’t work and I miss it so.
24. But I love it when people: Tell me they are inspired by my positive spirit despite the things I go through.
25. My favorite motto, scripture, quote that gets me through tough times is:
Prayer of Saint Francis of Assisi
Lord, make me an instrument of your peace.
Where there is hatred, let me sow love;
where there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
O Divine Master, grant that I may not so much seek
to be consoled as to console;
to be understood as to understand;
to be loved as to love.
For it is in giving that we receive;
it is in pardoning that we are pardoned;
and it is in dying that we are born to eternal life. Amen.
26. When someone is diagnosed I’d like to tell them: this is a confusing disorder and what works for one person may not work for the next. Hold tight, it is a crazy ride, but things will get better. Find a support system, pray,get some good doctors and remember to drink plenty of fluids.
27. Something that has surprised me about living with an illness is: while my body reminds me of my illness each day there is so much more to me. I am a person, a mother, a wife, a friend, a writer, a HopeKeepers leader, a sister. I am stronger than I knew because I am not going to let this dreadful illness get the best of me.
28. The nicest thing someone did for me when I wasn’t feeling well was: I have had several friends really help me with my kids when I have had to travel out of state for doctor appointments.
29. I’m involved with Invisible Illness Week because: I think it is so important to get the word out about invisible illnesses. They may be invisible but they have a huge impact on our lives and I think it is helpful to let others know.
30. The fact that you read this list makes me feel: pleased.