Invisible Illness Week (Sept 10-16) : 30 Things Meme

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 | September 17, 2012

30 THINGS ABOUT MY INVISIBLE ILLNESS YOU MAY NOT KNOW – 30 THINGS MEME
1. The illness I live with is: Common Veritable Immune globbulin Deficiency with low IGa the defense in our saliva, a Primary Immune Illness, Fibromyalgia, Post Traumatic Stress Disorder and Joint and Spinal Degenerative Arthritis, pulmonary issues.
2. I was diagnosed with it in the year: 2010 two weeks after my sister died of it.  With the CVID three years ago after several miss diagnosis left me totally demined and humiliated. The Later stages of CVID untreated acted like MS., seizure and several bazaar systems
3. But I had symptoms since: All of my life, infections and strange illness plagued me.
4. The biggest adjustment I’ve had to make is: Is having to mask in public, IVIG every four weeks of eight hour infusions of plasma. Slowing way down at my duties of homemaker and mother. Staying away from large gatherings of people, like church or gatherings.
5. Most people assume: Once infused I am immune to getting ill for four weeks. That is not always the case stress or fatigue can make me very vulnerable to airborne illness not having natural immune defenses.
6. The hardest part about mornings are: Removing the CPAP and breathing on my own getting past the eye opening pain and standing walking stiff.
7. My favorite medical TV show is: I think I tire of medical watching it on tv is just sad.
8. A gadget I couldn’t live without is: Under the cabinet jar opener.
9. The hardest part about nights are: Pain. Laying down increases it and taking the muscle relaxer and tramadol is disliked. I wish my day would have been more productive. Keeping a good attitude for a new day is tough. Meditation nightly really helps.
10. Each day I take 1 pills/vitamins. I do not take all of them each day, I just cant. So I do the most important ones.  vitamin powder b stress tabs and the ones I can stomach. When on the antibiotics and steroids they are taken and the supplements are reduced.
11. Regarding alternative treatments. I study and supply myself with needed items. I am eating for my blood type and doing a cortisol connection protocol to help the effects of the PTSD. I do get very discouraged when I get sick. 
12. If I had to choose between an invisible illness or visible I would choose: The port in my chest often reminds others that I really am sick. I helps me to remember all those donors of plasma that help keep me alive. My sister died in the indignity of invisibility. I live. The mask I must use makes me very visiable and is a hard thing to do. Some times I think that it is nice to blend in. I go with out the mask at great risk. Last time it left me sick now for almost two weeks. Physical invisibility is different from emotional invisibility it is the harder to have all these feelings all alone.

13. Regarding working and career: Dreams are less actualized but still fun to imagine.
14. People would be surprised to know: How sad I am for my caregivers.
15. The hardest thing to accept about my new reality has been: Future and the end that may come me.
16. Something I never thought I could do with my illness that I did was: Go out in public when the infusion is going on. My wonderful nurse and I go get mani pedi, or shop. People stare at me. 
17. The commercials about my illness: Except for the copd or the arthritis nothing is on. It is a rare thing. Dont see to many commercials about donating plasma.
18. Something I really miss doing since I was diagnosed is: Gardening and growing flowers. Working with my body.
19. It was really hard to have to give up: Gatherings
20. A new hobby I have taken up since my diagnosis is: Keeping the infusion kit organized, watching a lot of HULU and netflix.
21. If I could have one day of feeling normal again I would: walk for miles in a cool misty rain.
22. My illness has taught me: That to some my life is only valuable in order to finish raising my kids. To me my life is valuable to me to live it for the life that I deserve to live. 
23. Want to know a secret? One thing people say that gets under my skin is: "mom do you have to ware a mask?"
24. But I love it when people: Forget that I am sick.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 91 God loves me because I love Him.
26. When someone is diagnosed I’d like to tell them: Study and go to the Primary Immune Difficantcy Support group. Keep trying to reach out even when it is hard.
27. Something that has surprised me about living with an illness is: My nurse is here for me every month. She stopped all other patients and part time patients but me.
28. The nicest thing someone did for me when I wasn’t feeling well was: Bring me a home cooked meal. Made my chores easier. Kissed me on the forehead, and told me He was here for me. 
29. I’m involved with Invisible Illness Week because: I am trying my best to get out of this dark lonely cave I have been held up in.
30. The fact that you read this list makes me feel: scared