Sunday, September 27, 2009

Didn't See it Coming

It never ceases to amaze me that no matter how vague or brilliant the aura, I refuse to recognize it for what it is. Have you ever done that? Even when it has sound, which it did this time around, well that is actually normal for me; anyway, there were the lights and zigzags, and the screaches, and still, I denied it was coming.

And even when I woke with it, I still didn't want to call it what it really was; I thought I had a bug. (what????) Stupid me.

Alas, I finally gave in and injected myself with my trusty toradol (chiming bells inserted here) and it eased up. ta da. How is it, that after several thousands of migraines, I still refuse to recognize it's coming?? Is it blatant denial? Or stupidity on my part? In the end, I see it for what it is, the monster, accept that it has come, and deal with it. Well, not so much accept as hmmmmm, know it's there. I refuse to accept them. I don't want them, therefore, I cannot accept them.

This past Tuesday, I had another round of cryoanalgesia, followed by, rather - triggering the migraine for the day. and the next day. But it works for me; it takes them down a notch and keeps me free from migraine for longer periods. Rather than daily migraine, I live with 1 to 3 per week. That is a remarkable upgrade in living conditions for me.

Perhaps the fewer migraines are causing me to become comfortable in the lack of them. Thus, the denial. That's my story and I'm sticking to it.

Fall has landed here, the weather is cooler, it is darker at an earlier hour. The weather patterns are changing from dry and warm, to cool and rainy. Spring and Fall are so beautiful, but they affect me terribly. We have talked about moving South, but cannot right now.

I would love to be able to play outside longer than we can here in the Northeast. I just hate the idea of winter coming; the idea of having to stay indoors for months to come. I'm not ready for the cold. It makes my body hurt, my head ring and scream with pain. I hate it!

We had this beautiful fog fall in the park across the street tonight. It's getting cooler. I am sure the pic does it no justice. It was so beautiful with the sky glowing behind it. You could smell smoke from a fireplace in the air. mmmmmmm, what a yummy smell. I cannot wait to light up the fireplace this year!! But, I'm not ready YET for the change to all cold days and nights.

Next week, Lexi will be moving to an adult hab home. I cannot wait to show the pics of the house. It's so homey and warm. Rather than 5 girls, where she is now; she will be one of three girls in the new home. There is REAL furniture, rather than the "institutional" style in the house she is at now. She will also be closer to our home and church. I am so excited to move her in, and decorate her room. We've already done some shopping for her, and I painted a new desk for her computer. It is soooooo exciting.

Tonight, DH is starting, the kids are in bed. The pups are curled up sleeping. Oh, and I am migraine-free. for now.

Wishing you a pain-free day

Monday, September 14, 2009

30 Things.....

In observation of National Invisible Chronic Illness Awareness Week, (wow, that is a mouthful!), I have taken on the challenge, well not necessarily challenge but (I am stuck for the correct term ) - I am participating, yes, that's it, with an activity: a "meme," 30 Things About My Invisible Illness You May Not Know. You can play along, too. If you are a reader with an Invisible Illness, take the "meme" to your site.

First of all, for those who do not know what an Invisible Illness is, it is one that has no visible identity. I do not use a walker or cane or a wheelchair; though at times, I am unable to keep my balance and would profit from such. I do not have a hearing aide; although at times I wish I could turn the volume down on life, as it gets way too loud for me. I just live with pain. hmmm, "just," well not quite. On with the "meme"

1. The illness I live with: I have Migraine Disease

2. I was diagnosed in the year: It has always been a part of my life; but the word "migraine" was first said to me in 1992.

3. But I had symptoms since: I have always had them, for as long as I can remember.

4. The biggest adjustment I've had to make: Slowing down, especially when I know it's coming. The migraine, that is.

5. Most people assume: head pain is the only symptom of Migraine Disease; and that it is not a disease, but simply a headache.

6. The hardest thing about morning is: waking up in pain when my family needs me.

7. My favorite medical TV show is: Gray's Anatomy

8. A gadget I couldn't live without: without a doubt, my earplugs

9. The hardest part about night: being awake when I should be sleeping. the tossing and turning and just hoping I can sleep is torture. Without enough sleep, I'm destined for another monster.

10. Each day I take: I am down to only 8 meds per day. My insurance company has refused me two of my medications that worked to keep them under control. In the event of the monster, I must take more meds to kill it.

11. Regarding alternative treatments: I have used chiropractic care, and am on a new drink (new for me) called Xango. It is from the mangostene plant

12. If I had to choose between an invisible or visible illness: I will deal with what I'm dealt thank you.

13. Regarding working and career. hmmmm......I take care of my family, so I am able to work from home - HA. The last job I had, I was forced to quit due to migraine.

14. People would be surprised to know: aura are the most beautiful and energetic part of my migraine. They mesmerize me.

15. The hardest thing to accept about my new reality has been: knowing my kids may develop them.

16. Something I never thought I could do with my illness that I did was: go to see DMB live!!!

17. The commercials about my illness: hardly touch on the reality of migraine

18. Something I really miss doing: this is more of a miss-out for me; I wish I could travel with my husband. He loves to travel, but because I don't do well with it, I get ill and migrainey, I don't travel.

19. It was really hard to have to give up: foods I love that are triggers for migraine.

20. A new hobby I have taken up: painting furniture

21. If I could have one day of feeling normal again I would: travel with my husband

22. My illness has taught me: to rest when my body tells me to. That is really is OK to take naps when I feel lousy.

23. Want to know a secret? One thing that gets under my skin is: when people have the "answers" because they read it somewhere!!!

24. But I love it when people: are actually informed; ask questions; seek professional advice.

25. My favorite motto, scripture, quote that gets me through tough times is: "I can do all things through Christ which strengtheneth me" Phil 4:13

26. When someone is diagnosed, I'd like to tell them: learn all you can. read books that explain and help you through the disease. I usually give titles and authors with that.

27. Something that has surprised me about living with an illness: is the amount of time I spend in bed getting over the monster, or trying to prevent it from coming on.

28. The nicest thing someone did for me when I wasn't feeling well was: my friend Joyce came to stay with me in the hospital; she showed up after hours, sang hymns to me, brought gifts for my children, gave me cds to listen to, and offered to massage my feet for me. I hate my feet to be touched, so I denied that. I do let my husband rub my feet when I am in pain.

29. I am involved with Invisible Illness Week because: I would like to help others, try to educate or point them in a better direction if I can.

30. The fact that you read this list makes me feel: that you care enough to listen. thank you.

At this point, you too are encouraged to participate by answering these questions on your blog and keep this going.

You can 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

Wishing you a pain-free day.