Friday, September 25, 2009


I love rainbows and the music of Colby Caillet so this brightened my day. Hope it brightens yours too.

Stop & Smell the Roses, Why Not Listen to the Corn Sing

I live in a rural area where it is mostly crop farming; corn, soybeans, winter wheat. The other day I was walking the puppy and it was very windy. It is almost harvest time so the corn is very dry and for the first time in my life I noticed the music of the corn blowing and rubbing against one another in the wind. It was a beautiful sound. It seems illness & disability can open our senses to all the things we used to miss or ignore.

Tuesday, September 22, 2009

Recent Happenings

Over Labor Day weekend my husband and I were being lazy and watching a movie, No Country For Old Men. I had seen the movie several times but for the first time during one scene a couple of lines smacked me in the face. Thanks to Google I have a copy of the two lines that spoke to me that day.
"All the time you spend tryin to get back what's been took from you there's more goin out the door. After awhile you just try and get a tourniquet on it."
Character: Ellis played by Barry Corbin

Isn't that what we are doing living with chronic illness and disabilities? We are trying to just "get a tourniquet on" our lives living with all the changes and adaptations in our new world. That is how I feel right now in my life. Some days the tourniquet is tighter than others but I keep trying to move forward and hope it loosens a bit from time to time as I continue the cycle of living. Just my thoughts. Maybe it is just my scrambled brain.

Now on to hot air.

We also went, at my urging, to a hot air balloon derby that is held annually in a town near us. All my years of living here and I had never gone. I decided I wanted to go and take some pictures. My hubby wasn't ecstatic about the idea but I really wanted to go. Reluctantly he drove me to the launch site. I would love to go up in a balloon someday. Years ago I wanted to skydive but now I will settle for a ride in a hot air balloon. We watched one group of balloons launch and another come from another site and land. As it turns out hubby enjoyed himself. I wish the pictures were better but I did get a few good shots I think. I hope you enjoy them too. I had a great time taking them. Yes, my neck was killing me later after maintaining the position it took to get the shots. It was worth it though.

I have also had quite a time with our new puppy. Maggie is growing so fast. She is asleep beneath my feet as I type. Shhhhh..... She is 4 months old now and is a handful but she is such a joy for me.

To be quite frank with all the above pleasant moments there has been a great deal of emotional and physical pain. Family problems, financial issues and everyday stresses of life have me feeling like I really need that tourniquet on tight. If you see a balloon fly by one day it may be me on my great escape. LOL It will be a rainbow colored balloon by the way.

Wednesday, September 2, 2009

My Latest Photography Adventure

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Maggie and Me

I love pears!
I told Maggie I would post an update. The vet weighed her on Saturday and she weighed 24 lbs. One month ago she weighed 10.5 lbs. She got a clean bill of health.
Now on to me. I had a lousy month in August. Much more pain than usual and the fatigue was almost unbearable. I have started having some worsening vision problems and hope to see the opthamologist in the very near future.
I love Maggie so much and she brings me so much love, joy and pleasure. I had forgotten what potty training entailed and the energy I would need to keep up with her. I take her out on a leash and walk her much more than I am used to walking and she is very strong. I am trying to teach her basic skills such as to walk on my right side only to prevent me from falling. Wow the energy this takes. We will get through this. LOL
I forgot to mention my sleeping pattern has also been disrupted since her arrival. She seems to think I should be out of bed by 6am - 7am. She jumps in bed and tries to root me out of bed by digging and digging under my body. Needless to say I am up earlier than I am accustomed. I didn't realize how a change in my sleep pattern would affect me. Please wish me luck with this endeavor
September isn't off to a great start as all the symptoms have followed me into the new month.
I have faith it will get better.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: MS, CFS

2. I was diagnosed with it in the year: 2000

3. But I had symptoms since: years prior

4. The biggest adjustment I’ve had to make is: Had to stop driving & dependent on husband.

5. Most people assume: I feel ok.

6. The hardest part about mornings are: Pain, stiffness

7. My favorite medical TV show is: Nonfiction medical shows

8. A gadget I couldn’t live without is: tub bench and detachable shower head

9. The hardest part about nights are: Getting comfortable related to pain

10. Each day I take _16_ pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: Not covered by insurance

12. If I had to choose between an invisible illness or visible I would choose: invisible

13. Regarding working and career: I do not enjoy being unable to work.

14. People would be surprised to know: How sad I am because of my cognitive deficits.

15. The hardest thing to accept about my new reality has been: Lack of emotional support by my adult children.

16. Something I never thought I could do with my illness that I did was: Still be a fun Nanni

17. The commercials about my illness: Don't depict reality fully.

18. Something I really miss doing since I was diagnosed is: working

19. It was really hard to have to give up: career & driving

20. A new hobby I have taken up since my diagnosis is: photography

21. If I could have one day of feeling normal again I would: Play with my 8yr. old granddaughter in a way she hasn't seen me before.

22. My illness has taught me: I have much to live for.

23. Want to know a secret? One thing people say that gets under my skin is: "You look good"

24. But I love it when people: Make me laugh.

25. My favorite motto, scripture, quote that gets me through tough times is: God grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.-- Reinhold Niebuhr

26. When someone is diagnosed I’d like to tell them: You are still the same person in your soul.

27. Something that has surprised me about living with an illness is: Tremendous financial burdens & stress

28. The nicest thing someone did for me when I wasn’t feeling well was: Bathe me. My husband is a blessing.

29. I’m involved with Invisible Illness Week because: Dedicated to the education of others to make our lives better.

30. The fact that you read this list makes me feel: Hopeful

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at