For Invisible Illness Awareness Week people fill out our “30 Things” Meme, “30 Things About My Invisible illness You May Not Know.” Some of our devotional writers have filled them out for us and we thought we would share them. You can fill out your own here. It can be something to reflect on.
Here, Sandra Platt shares. . .
1. The illness I live with is: Fibromyalgia, Sjogrens, RLS, kidney disease, heart condition, IBS, Lupus, and Autoimmune Peripheral Neuropathy, I am sure I am forgetting a few.
2. I was diagnosed with it in the year: The Fibromyalgia was diagnosed 26 years ago. The other illnesses followed after that.
3. But I had symptoms since: For as long as I can remember!
4. The biggest adjustment I have had to make is: I guess when I came to the realization, early on as a pastor’s wife, that I cannot please everyone, and do it all anymore.
5. Most people assume: When they read about me, or hear about me–as Larry’s wife (he is a fairly well known Pastor in our area) , they assume that because of my illnesses I am all sad and an invalid in bed.
6. The hardest part about mornings are: I know that the first bit of movement will be painful, my first step when I touch the floor will be awful.
7. My favorite medical TV show is: I don’t watch medical shows.
8. A gadget I couldn’t live without is: My Laptop! It is my communication to the world! I find fellowship, friendship, even when I am flat in bed.
9. The hardest part about nights are: more pain, the aching seems deeper.
10. Each day I take [too many! LOL!] pills and vitamins.
11. Regarding alternative treatments I: am open to them after I study about them.
12. If I had to choose between an invisible illness or visible I would choose: Pardon me, but why would I choose? I have had both, and I see no place where one wins over the other.
13. Regarding working and career: I went to college to become a teacher and was only able to teach 2 years. Then I became the manager of a Christian bookstore. Eventually that was too much. But I have loved 26 years of being a pastors wife, and I love my writing!
14. People would be surprised to know: that I am in pain constantly. Every minute. But that I am also full of joy!
15. The hardest thing to accept about my new reality has been: I have had to graduate to the wheelchair full time this year. Seeing myself losing ground is hard.
16. Something I never thought I could do with my illness that I did was: still be joyful, raise my family, see my kids graduate and begin building their lives. If I would have been told 26 years ago at the beginning of my illnesses and the beginning of our ministry; that I would have had the life I had with my family that I did, I would have been amazed!
17. The commercials about my illness: at least share some information, but it is not always presented truthfully.
18. Something I really miss doing since I was diagnosed is:take long walks, dance, jump rope, ride my bike.
19. It was really hard to have to give up: the day trips we would take to some of the State parks with beaches and hiking trails into the woods and hills. We used to swim, hike, picnic, all day. We still go to nature reserves, but we have to do things differently due to my wheelchair, staying out of the sun, watching for fatigue, etc.
20. A new hobby I have taken up since my diagnosis is: Container gardening, I cannot go out and dig in the dirt to plant flowers and vegetables, so in the summer I grow things in pots. Inside all year, I grow beautiful African Violets.
21. If I could have one day of feeling normal again I would: Enjoy a long walk with my husband.
22. My illness has taught me:So many things! A whole new deeper way of life! If I had to choose between having had a normal healthy life, or the illness I have now; I would choose this life because of all I have learned in my dependence upon my Lord. I would not have this walk with the Lord if I would have remained healthy.
23. Want to know a secret? One thing people say that gets under my skin is: I look like I “am doing better!” Or, I look ” like I am having a good day “. It takes planning a day or two before, extra pain meds, and a great makeup job, to get me to church. Usually by the end of the Service I am ready to lay down! Not feeling like I look good then! LOL
24. But I love it when people: notice the effort it took to be in fellowship with them. Offer to bring over a dinner so I can rest. Call and see if I need anything from the store when they are running errands, stop in for a short visit over coffee.
25. My favorite motto, scripture, quote that gets me through tough times is: Our family motto is this, “We are living in the realm of the miraculous with Christ as the Cornerstone.”
26. When someone is diagnosed I’d like to tell them: take it just a day, or hour at a time. Call me, and we will walk through it together.
27. Something that has surprised me about living with an illness is: if I keep my eyes on me; my pain, my loneliness, etc. I am miserable. But if I keep my eyes on Jesus. . . like the song says, the things of the earth will grow strangely dim. When I look to Jesus, I don’t see my pain, I see Him. And there is JOY!
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring over lasagna, and a pan of brownies to bake in our oven so it would make our house smell good, instead of baking our dinner in her home.
29. I’m involved with Invisible Illness Week because: When I first got sick, some members of our church were ruthless in their belief that I was a self centered whiner! I don’t want anyone else to be treated that way.
30. The fact that you read this list makes me feel: Humbled, glad, thankful.
Thank you for sharing Sandy. It was a pleasure to learn more about you.
You have a beautiful heart. Thank you for letting a glimpse in. I am reaching out this week. Climbing out of a cave that just had God and I around the camp fire inside. It does take that courage to tell what it is like inside. It is wonderful with Him but I do so miss others company. I miss the vibrancy .
I am so glad that you are reaching out! This is a good place to come to. Have you known about Rest Ministry long? We have a Sunroom as part of our ministry, and there you can make friends that love Christ, and are suffering with the same illnesses that we are. Someone is usually one all the time, and I have made many wonderful friendships. I can meet you there!
Just a note to tell you that you are in my prayers. I am here if you ever want to talk.
THIS is one of the most up-lifting & helpful posts I have read in a long time! I wish that we could be neighbor’s because I felt like I was reading about MYSELF! I am not a Pastor’s wife…though I could have been! I NEED people like YOU in my life. You have blessed me today like no one else could. What a JOY to know God still uses YOU, & ME too, when we least expect it!
Thank you for writing in! What a blessing to know this lifted you up. Are you a member of the Rest ministry Sunroom? If not, I think it would be a wonderful way to have friends that understand, and you can share with. You can talk tyo me in the Sunroom too.
Yes, I am a member..just READ much more than I write:)! I’ve found that my relationship w/God DEEPENED so incredibly on this road, that despite what it’s cost me, I wouldn’t change it either! I LOVE Rest Ministries, it’s been a great encouragement to me to read other’s stories. I am in a place right now, that I just need to be QUIET and sit at the Lord’s feet, so I don’t write a lot. Blessings to you♥
Have I met you in the Sunroom? I understand the need to be quiet and feed your soul. I am like that too.Sorry I did not get back to you sooner. I have been laid up with kidney stones again. Find me in the Sunroom and we can visit.
Not sure..lol! My memeory isn’t as ‘finely tuned’ as it used to be:) Sorry about the kidney stones, I understand though-have had them a number of times myself. I’ll look for you…
Thank You for sharing Sandy!
Sandy, my dear friend you are a blessing to all who know you, (and many who don’t)…A wonderful and gifted writer, mom and wife, and a supportive friend to anyone who needs you…you never cease to amaze me and I thank the Lord he has brought you into my life.
Love you Micki, you have been an amazing blessing to me too!
Thanks for sharing of yourself dear Sandy♥. You sooooo blessed & encouraged me & it was lovely to get to know you better. I’ve slowly been trying to fill in the 30 questions. God bless. Lotsoluv Kerryn
Dear Sandy,
Really wanted to thank you for sharing your” 30 things”. I so enjoyed and identified with many of your comments. I laughed, cried, was encouraged and inspired by your thoughts and feelings. You shared your heart and soul for our Lord and your faith and strength in Him shone thru your words.
Also, pray your kidney stones are either passing, past or literally getting resolved (ie blasted). My husband has had 17 in the past and I know how painful and awful they are. The good news is that he hasn’t had any now for several years. I watch his diet, try to get him to drink more water(filtered(, etc.) But they just stopped forming. We prefer to believe he was healed from them Good thing as he has to take care of me. Smile! I have had fibromyalgia and chronic fatigue and much pain for 30 years with a lot more health issues. RM is a lifesaver for me and I truly believe you all here are missionaries for God right where you are!
Blessings,
Patty
Hope this goes thru!!
It did! I am just getting used to this system as well. My Dr. and I worked with diet, vitamins, etc. They believe my Sjogren’s, and Lupus has caused organ damage, I usually am bothered by them a couple times a year. My husband is a wonderful care giver, but he is still in full time ministry. My daughter, 24, is with us while attending College, she is a blessing.
Soft hugs and prayers,
Sandy