In light of that I have written out thirty things about my invisible illness that I would like to share with others.
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
"It is not in my head"
1. The illness I live with is: Degeneration of the spine, rheumatoid arthritis
2. I was diagnosed with it in the year: 1991
3. But I had symptoms since:spinal pain since my teens
4. The biggest adjustment I’ve had to make is: learning to just say no and not feel guilty
5. Most people assume: I am fine
6. The hardest part about mornings are: that I don't feel rested and hurt so much. I have to make a decision that life is worth the pain of getting up to start another day.
7. My favorite medical TV show is: CSI , does that count?
8. A gadget I couldn’t live without is: hot water bottle in the winter
9. The hardest part about nights are: not really sleeping while everyone else is zonked out
10. Each day I take some meds and vitamins~ yes, and i know they have side effects that I will pay for later
11. Regarding alternative treatments I: have tried MANY to no avail and this is not something that will ever get better or just go away
12. If I had to choose between an invisible illness or visible I would choose: glad I do not have a choice
13. Regarding working and career:I am thankful God has put me in a situation where I do not have to work outside of my home !
14. People would be surprised to know: Pain everyday is a fact of life for me, some days are harder than others, and it is easy to be depressed.
15. The hardest thing to accept about my new reality has been: my limitations in the home, with family and ministry
16. Something I never thought I could do with my illness that I did was: keep a happy spirit...most of the time :)
17. The commercials about my illness: I don't see them
18. Something I really miss doing since I was diagnosed is: being spontaneous, entertaining friends, accompanying my husband on road trips, playing with the grand kids more,
19. It was really hard to have to give up: saying YES to others
20. A new hobby I have taken up since my diagnosis is: blogging and writing
21. If I could have one day of feeling normal again I would: take a long walk with my husband and go sky diving!
22. My illness has taught me: that I have no control over this illness or much of anything else I once thought I controlled.
23. Want to know a secret? It hurts when people make me feel guilty for not being able to do more or when they assume I am lazy. But most people are kind!
24. But I love it when people: Are compassionate and do not think badly of me when I am unable to do something we had planned
25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt and overcome!
26. When someone is diagnosed I’d like to tell them: Take it one day at a time
27. Something that has surprised me about living with an illness is: how lonely it can be trapped in a painful body. It can not be shared with anyone.
28. The nicest thing someone did for me when I wasn’t feeling well was: Fix a meal for my family and clean my house.
29. I’m involved with Invisible Illness Week because: People need to be aware of various invisible illnesses
30. The fact that you read this list makes me feel: like you are trying to understand
MY 21 year old daughter, Jewel, also has an invisible illness and decided to share about her illness as well.
30 Things about my Invisible Illness you may not know
30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW
"It is not in my head"
1. The illness I live with is: Hashimotos Autoimmune Disease
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: being sure I do not over work my self or I can collapse
5. Most people assume: I am fine
6. The hardest part about mornings are: because of my disease it is hard to wake up and I am constantly exhausted even if I sleep for 12 hours
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my alarm clock ( also my phone)
9. The hardest part about nights are: also because of my disease I have a low tolerance for cold, and my dorm room is freezing
10. Each day I take some meds and vitamins~ yes I also have to be careful about what I eat and drink. and the time between meds and vitamins
11. Regarding alternative treatments I: other than natural herbs and meds I can have a surgery
12. If I had to choose between an invisible illness or visible I would choose: I also have asthma, does that count as visible? I do know people can hear it!
13. Regarding working and career: I am a college students right now so I have to work on my studies and work a job but luckily my work is simple and on the school campus.
14. People would be surprised to know: every night before I go to sleep, as my body relaxes, I have small convulsions.
15. The hardest thing to accept about my new reality has been: I can't do every thing I want to do because it will cause harm to my body
16. Something I never thought I could do with my illness that I did was: Go to school, I was advised to stay home until I had my disease under control. I did not and I am in my last semester of college
17. The commercials about my illness: I have never seen any
18. Something I really miss doing since I was diagnosed is: I have to be more careful about physical activities that could give me an asthma attack because my meds for asthma damage my thyroid even more
19. It was really hard to have to give up: activities that took up too much of my physical strength
20. A new hobby I have taken up since my diagnosis is: becoming the activities director for Kappa Delta Chi
21. If I could have one day of feeling normal again I would: go camping/white water rafting/rock climbing all in one day
22. My illness has taught me:to be happy with God's will for my life
23. Want to know a secret?the Doctors first told me I may never have children, but thanks to God's mercy after several months of exams and testing,it has been decided that I can still have children. It will still be difficult and I will need doctors observation but it is possible
24. But I love it when people: understand and don't think I'm just lazy.
25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt and overcome!
26. When someone is diagnosed I’d like to tell them: remember that its not a death sentence it just means its going to be tough
27. Something that has surprised me about living with an illness is: it is a constant reminder of God's control over every aspect in my life
28. The nicest thing someone did for me when I wasn’t feeling well was: carried me to my room when I passed out in class,
29. I’m involved with Invisible Illness Week because: People need to be aware of various invisible illnesses
30. The fact that you read this list makes me feel: like you are trying to understand!
"It is not in my head"
1. The illness I live with is: Hashimotos Autoimmune Disease
2. I was diagnosed with it in the year: 2011
3. But I had symptoms since: 2009
4. The biggest adjustment I’ve had to make is: being sure I do not over work my self or I can collapse
5. Most people assume: I am fine
6. The hardest part about mornings are: because of my disease it is hard to wake up and I am constantly exhausted even if I sleep for 12 hours
7. My favorite medical TV show is: ER
8. A gadget I couldn’t live without is: my alarm clock ( also my phone)
9. The hardest part about nights are: also because of my disease I have a low tolerance for cold, and my dorm room is freezing
10. Each day I take some meds and vitamins~ yes I also have to be careful about what I eat and drink. and the time between meds and vitamins
11. Regarding alternative treatments I: other than natural herbs and meds I can have a surgery
12. If I had to choose between an invisible illness or visible I would choose: I also have asthma, does that count as visible? I do know people can hear it!
13. Regarding working and career: I am a college students right now so I have to work on my studies and work a job but luckily my work is simple and on the school campus.
14. People would be surprised to know: every night before I go to sleep, as my body relaxes, I have small convulsions.
15. The hardest thing to accept about my new reality has been: I can't do every thing I want to do because it will cause harm to my body
16. Something I never thought I could do with my illness that I did was: Go to school, I was advised to stay home until I had my disease under control. I did not and I am in my last semester of college
17. The commercials about my illness: I have never seen any
18. Something I really miss doing since I was diagnosed is: I have to be more careful about physical activities that could give me an asthma attack because my meds for asthma damage my thyroid even more
19. It was really hard to have to give up: activities that took up too much of my physical strength
20. A new hobby I have taken up since my diagnosis is: becoming the activities director for Kappa Delta Chi
21. If I could have one day of feeling normal again I would: go camping/white water rafting/rock climbing all in one day
22. My illness has taught me:to be happy with God's will for my life
23. Want to know a secret?the Doctors first told me I may never have children, but thanks to God's mercy after several months of exams and testing,it has been decided that I can still have children. It will still be difficult and I will need doctors observation but it is possible
24. But I love it when people: understand and don't think I'm just lazy.
25. My favorite motto, scripture, quote that gets me through tough times is: Improvise, adapt and overcome!
26. When someone is diagnosed I’d like to tell them: remember that its not a death sentence it just means its going to be tough
27. Something that has surprised me about living with an illness is: it is a constant reminder of God's control over every aspect in my life
28. The nicest thing someone did for me when I wasn’t feeling well was: carried me to my room when I passed out in class,
29. I’m involved with Invisible Illness Week because: People need to be aware of various invisible illnesses
30. The fact that you read this list makes me feel: like you are trying to understand!
8 comments:
I think one of the hardest things for me has been the feeling that I can't be depended on anymore since I never know when something will strike. Several times I have planned major events, only to get sick right before them and be unable to carry out all I had set in motion leaving others to fill in the gap. Now it feels irresponsible to volunteer for things, even things I would love to do. I'm still working out what it all means for me (obviously).
May God continue to give you DAILY GRACE! Blessings, my friend.
Shilo
I should never read these things at work- :)
I had no idea that you both suffer fro these to illnesses. Your spirit uplifted me before and now that I understand what you go through each day I am even more uplifted. You are so positive and joyful. I thank God for FB just because of the uplifting, make me smile friends like you Rita- God Bless you both. Thank you for the courage to share this with us. Love you-
audrey
I had no idea you were in so much pain so much of the time. It makes your fun posts that much more incredible.
You are both an inspiration to me. Your humor and funny posts do not show what you must go through. And Jewel is lucky to have you to help her through this.
God bless!!
Rita,
You are both in my thoughts, well wishes and prayers.
Funny, I just thought of something: While I believe in a higher something to pray to, maybe not the typical idea of God but my idea of what there is, I rarely if ever pray for myself. I virtually always pray for others. That just popped into my had and then hit me like a ton of bricks and the brick dust is lying all round me at my feet, I am still standing. I believe that is a good thing, not the brick dust - the praying for others. I will be sure to keep the both of you in my prayers and well wishes because though we differ greatly you are a good friend.
All the best,
Glenn B
I would like to say that I had hashimotos till I had my thyroid out. It in now way affected my having children, After my diagnosis I had 5 more children.
Laurel, Jewel did not list all of her illnesses here. She deals with other issues as well as the Hashimotos. She had several systems effected at the same time and one of them caused the premature aging of her eggs. She had to undergo several tests to see if she still had any viable eggs or not and has been receiving hormone therapy as well.
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