posted
Sad list. Albeit seems like you have good attitude! Optimism is good for you.
In my case though I am angry and hateful at this stupid world where human idiocy and incompetence is unmatched and overshadows everything. Makes me wish genocide in planetary scale.
Posts: 856 | From MA | Registered: Jul 2009
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Need lots of help...haven't read your post yet but will.
here is the web site so others can post their 30 things.
I copied and pasted the questions on word and worked out it a bit when I could.
The posted it on the web site. It took me several tries to get logged in and to post.
Sent note to site as I wasn't sure if it was me or the site.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with: Lyme Disease
2. I was diagnosed with it in the year: 2003
3. But I had symptoms since: Not able to teach or do household chores, drive, read, do math, go for my morning walks, etc in Oct 2001. Fine one week and not the next.
But, wondering now if systems I had since ? were lyme related.
At least they did not stop me in my tracks and I was still able to do household chores, work, go to college, do yard work, etc.
4. The biggest adjustment I've had to make is:
The unreliability of my body and brain, learning to live within my limits and just do a little each day when able vs. over doing it and not being able to function for several days.
Trying to live on SSI of almost $700 a month vs earning $7,000 a month.
5. Most people assume:
I am normal.
6. The hardest part about mornings are:
Not knowing if I will be able to get up, get dressed and be able to drive to the trailhead and go for a 10 min walk or if I will need to use the reclining power chair and go across the street to toilet my service dog. But, thankful I am able to do one or the other now.
7. My favorite medical TV show is:
I was watching Grey's Anatomy but would not call that a medical TV show.
Can't handle the other medical TV shows such as mystery dx due to health being so low myself.
8. A gadget I couldn't live without is:
Would my power chair, car, public transportation to transport my power chair be considered gadgets?
I just know how much more difficult life was without them for years.
Also my sun glasses and ear muffs.
9. The hardest part about nights are:
Nights are OK now since I started taking gabapentin, sleeping meds and glycine to help me sleep.
10. Each day I take 30 pills & vitamins.
11. Regarding alternative treatments I:
Would water therapy be considered alternative therapy. I would do more if I had the funds.
12. If I had to choose between an invisible illness or visible I would choose:
I don't even what to go there. I prefer health.
13. Regarding working and career:
This has been put on the back burner since Oct. 2001.
Still trying to find something I can do within my health limits.
14. People would be surprised to know:
How difficult this condition can be.
15. The hardest thing (s) to accept about my new reality has been:
Traveling, the great outdoors, working, going to church/bible study, not being able to read a novel, having a newer reliable vehicle to transport my power chair. Not having a LLMD close by or able to travel to see a LLMD
And not being able to just focus on the bottom line anymore but needing to communicate via the keyboard and still not be sure about what I am saying.
16. Something I never thought I could do with my illness that I did was:
I still have hope and have not set limits on what I will not be able to do.
17. The commercials about my illness:
There are no commercials about lyme disease.
18. Something I really miss doing since I was diagnosed is:
See question 15...
19. It was really hard to have to give up:
My independence.
20. A new hobby I have taken up since my diagnosis is:
I keep trying to think of something I can do but have yet achieved this.
21. If I could have one day of feeling normal again I would:
Visit a National Park with my grand son's and a friend.
22. My illness has taught me:
Hindsight will tell me what I have learned from this.
23. Want to know a secret? One thing people say that gets under my skin is:
Complaining when they have the cold or flu for a few days or complaining when they have to go to work.
24. But I love it when people:
Have a positive outlook and appreciate what they have.
25. My favorite motto, scripture, quote that gets me through tough times is:
No motto, scripture or quote. God just shows me someone who is doing much worse or that he is there for me or like today when I heard a pastor say he has a saying on his wall...yesterday ended last night.
26. When someone is diagnosed I'd like to tell them:
Congratulations on getting a dx as many suffer a long time before knowing why. And congratulations on educating yourself and finding a LLMD to help you.
27. Something that has surprised me about living with an illness is:
Before this illness I thought you went to the medical field to get a dx and get better. Since coming down with this illness I have learned that it is business first with the majority of the medical field and my health second ....if that.
I was surprised when a specialist would suggest I go to Stanford to see a doc or have a mycoplasma test done to find answers, but the insurance would deny it.
I also learned that not all labs are the same.
And the majority of the medical field work out of a tool box provided by the insurance. A very small amount of doctor's will work outside of that box.
We all have a lot to learn when it comes to things attacking the inside of the body.
I also continue to battle the fear that comes with this and low self esteem and confidence.
28. The nicest thing (s) someone did for me when I wasn't feeling well was:
Get me food, prepare food for me, do household chores, show acts of kindness, drive me to the doctor's, help me with the infusion of abx via the PIC line when I was not able to do it myself, donated a power chair to me, donate a computer to me, donated a car to me, provide a service dog for me, pay for the repairs on my car, send me an encouraging card monthly...believe in me.
29. I'm involved with Invisible Illness Week because:
It is nice to not be isolated and know that others also can relate and to learn.
I have missed it the past few years do to health. Hopefully, my vision and processing will be working this time.
30. The fact that you read this list makes me feel:
Heard.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Geneal...I too thought about how differently my list is today than it was back in the early part of the 2000's.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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