Tuesday, September 20, 2011

30 Things About Invisible Illness You May Not Know

I saw this on a site I love called butyoudon'tlooksick (but you don't look sick) and thought I would recopy and share my 30 things about living with Invisible Illness. I love this!
1. The illness I live with is:
Inflammatory Arthritis which my Rheumatologist thinks is RA but not 100% sure. Myasthenia Gravis? Many others that are not worth writing down.
2. I was diagnosed with it in the year:
2006 with Inflammatory Arthritis. MG was 2007 diagnosed, undiagnosed, then diagnosed, the roller coaster continues as I see a Neuro-Opthamalogist regularly for this.
3. But I had symptoms since:
The birth of our son Richie, 1990
4. The biggest adjustment I’ve had to make is:
Becoming a whole new person and having to give up many of the things I love to do. Physically most are just impossible now days.
5. Most people assume:   
Because I look so good I can't be that sick. I say the only people who know how sick I am are the ones who live with me. Or people assume that all I need is a better diet or some magic vitamin and I will be better. This erks me when they have no idea what is going on medically.
6. The hardest part about mornings are: 
Getting my eyes to focus and loosening up my whole body. Just getting myself going.
7. My favorite medical TV show is: 
Mystery Diagnosis. I can relate to every story. You suffer for so long and every doctor has a different answer, very frustrating. I watch that show and just get pissed off that people have to live ill for so many years until they find out what is going on. Many times it makes me cry because I know what it is like. The whole show I am saying, stupid doctor, idiot, one and on.
8. A gadget I couldn’t live without is:
My bathtub to soak my stiff body in and my pillows that surround me at night.
9. The hardest part about nights are: 
Waking up a million times to move because of the pain and stiffness, it doesn't matter how many drugs I take or what kind I take this is a given for me.
10. Each day I take: 
11 pills in the morning and 4-5 pills at night then once a week I do an injection of Methotrexate.
11. Regarding alternative treatments I:
think they are wonderful for those they work for. We all must make our own choices when it comes to our treatment.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I have been sick long enough that I am use to the snide comments and I have really learned to let it all roll off my back or speak up for myself. Plus, I just don't care anymore what people think as I only try to focus on the good in my life.
13. Regarding working and career: 
I dream of working again someday. I hope someday that is possible for me!
14. People would be surprised to know: 
I am ready to die. Don't get me wrong I love my life but if I die it would be a good thing. See that is a surprise, I know!
15. The hardest thing to accept about my new reality has been: 
That  my world has shrunk to a very small existence. A very tiny world but a good tiny world.
16. Something I never thought I could do with my illness that I did was:
Start this blog. I never thought I would ever share my inner most thoughts with people I have never met. It helps me so much!
17. The commercials about my illness:
Are misleading. I do not doubt some people do get to go out and do whatever they want after treatment but for me everyday is like riding a bike up a steep hill all day long.
18. Something I really miss doing since I was diagnosed is:
Working in my yard and meeting my friends for coffee or lunch.
19. It was really hard to have to give up:
Reading. I miss reading so much but with my eye problems it is just so hard. I can read for 5 or 10 minutes and have to stop. It makes me not even want to buy any books anymore. That is a huge loss for me.
20. A new hobby I have taken up since my diagnosis is:
Making cards for fun to share with others.
21. If I could have one day of feeling normal again I would:
Go for a long walk in the woods, do some gardening, run at the park with my grand babies, read a book from cover to cover, cook a huge meal for my family and sit down with them to eat it, plus many other things! You have no idea how hard it is to write this stuff down as the tears roll down my face.
22. My illness has taught me:
What really matters in life and who really cares and who doesn't.
23. Want to know a secret? One thing people say that gets under my skin is:
"You just need to get out more." That one drives me BONKERS!
24. But I love it when people:
Say they understand, even if they don't.
25. Favorite quote or saying:
Some things happen to us from which we never recover, and they disrupt the normalcy of our lives. That's how life is. Human nature has a tendency to try to reconstruct old ways and pick up where we left off. If we're wise, we won't continue to go back to the way things were. (we can't anyway)We must instead forget the old standard and accept a "new normal".
 26. When someone is diagnosed I’d like to tell them:

I understand and tell me about your story!
27. Something that has surprised me about living with an illness is:
How much my family loves and cares for me. Especially my husband.
28. The nicest thing someone did for me when I wasn’t feeling well was:
First and foremost Rich but besides him my friend Kim Seitz. She is always doing nice things for me. When I was really sick she would bring meals to us all the time and send cards or call. She is a gem! She still sends me cards that brighten my day. I love her like crazy! A true friend!!
29. I’m involved with Invisible Illness Week because:
I want to support others who suffer as I do and make people realize just because someone looks good doesn't mean your insides are doing good too. They may be eating you alive!
30. The fact that you read this list makes me feel:
Special and like you care. It tells me you have a kind, compassionate heart for others to care enough to read it. Thank you!

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