Sunday, September 27, 2009

Important New Blog from the Alliance for Headache Disorders Advocacy

According to the their website, the Alliance for Headache Disorders Advocacy 
is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients.
The AHDA has started a new blog called HeadNotes. This blog will provide another way to find what is happening with headache advocacy. Their latest post is a must-read as it is an update on what progress has been made since the formation of the group in September 2007. I was excited to read about how the AHDA has been making a difference.

It is of vital importance for those of us who are headache sufferers to be involved in the advocacy for better treatment and research. As others have said before me, if we do not stand up for ourselves, how can we expect others to do so?

The AHDA website has a page dedicated to what we can be doing all the time for headache advocacy. Addiionally, there is an Action Center as well as an action e-list where for you and other headache sufferers can sign up to receive alerts on important advocacy information. I encourage you to please sign up for action alerts and get involved! The HeadNotes blog is a great place to get started.

Saturday, September 26, 2009

30 Things About My Invisible Illness You May Not Know

I completely missed the boat this year in blogging about Invisible Chronic Illness Awareness Week that took place September 14-20th. Here is my belated meme:
1. The illness I live with is: Migraine Disease & New Daily Persisitent Headache (I have others, but will not be referring to them in this meme.)

2. I was diagnosed with it in the year: 2006 (February) when I was 26.

3. But I had symptoms since: I have had headaches since I was in jr. high/high school. I was diagnosed with chronic sinus headaches as a teenager that continued into adulthood, but I now believe that many were probably Migraines. NDPH and Migraines became disabling in October 2005 when I was 25.

4. The biggest adjustment I've had to make is: make a complete lifestyle change and adapt to new limitations. I used to be a planner, now I go with the flow.

5. Most people assume: Migraines are just headaches. Also they assume if I look okay, I am not in pain.

6. The hardest part about mornings is: wondering what I will be able to do today or if I will have to spend most of the day in bed.

7. My favorite medical TV show is: none of them. I don't watch any.

8. A gadget I couldn't live without is: my computer.

9. The hardest part about nights are: difficulty falling asleep/staying asleep because of pain.

10. Each day I take 19 pills & vitamins. More depending on daily pain level. (No comments, please.)

11. Regarding alternative treatments I: do biofeedback, relaxation techniques, pilates, exercise, modified diet, and the list goes on.

12. If I had to choose between an invisible illness or visible I would chose: neither. 

13. Regarding working and career: I haven't worked since February 8, 2006. Although I keep up on continuing education for my speech language pathology certification. I volunteer when I am able.

14. People would be surprised to know: that I am in pain 24/7 and even when I look like I'm not, I am just pushing through.

15. The hardest thing to accept about my new reality has been: that I am so dependent on others.

16. Something I never thought I could do with my illness that I did was: make a difference.

17. The commercials about my illness: are inadequate and sometimes make me angry.

18. Somethings I really miss doing since I was diagnosed are: working as an SLP and spending time with family/friends whenever I wanted.

19. It was really hard to have to give up: serving others in the way I used to.

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

21. If I could have one day of feeling normal again I would: serve in some way that I'm not able to now: i.e. work with kids, meet the physical needs of someone who is chronically ill ect...

22. My illness has taught me: how to persevere.

23. What to know a secret? One thing people say that gets under my skin is: God has a reason for my illness.

24. But I love it when people: are compassionate and ask me questions about my illness.

25. My favorite motto, scripture, quote that gets me through tough times is: "But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; they will walk and not be faint." Isaiah 40:31

26. When someone is diagnosed I'd like to tell them: Educate yourself. Be an active part of your health care team. See a headache/Migraine specialist.

27. Something that has surprised me about living with an illness is: that it takes patience and time to find a treatment regimen that will work and furthermore that there is no cure for Migraine disease yet.

28. The nicest thing someone did for me when I wasn't feeling well was: to sit in silence for hours at my bedside just 'being' with me. A close second is having someone carry me to and hold me up on the toilet.

29. I'm involved with Invisible Illness Week because: awareness and education are important to me.

30. The fact that you read this list makes me feel: loved.
Even though National Invisible Chronic Illness Awareness Week took place mid September, you can read more about it and the 5-day free virutal conference (which can be downloaded for free on iTunes) on its website.

Wednesday, September 23, 2009

Action Alert: FDA Ban on Prescription Pain Meds

The American Pain Foundation believes that the concerns expressed by the FDA about the associated risks of certain prescription pain medications can be addressed better with education than regulation. At Somebody Heal Me, Diana Lee's recent blog post, FDA Ban on Prescription Pain Meds: Please Take Action Now gives excellent reasons as to why there is concern about the FDA's proposed ban and why education would be a better route. It is imperitive you read her fantastic post and if you agree, sign the petition, Acetaminophen: Educate, Do Not Regulate before Sunday, September 27th.

A Migraineur Interviews Cindy McCain

Teri Robert, our beloved Migraine Advocate, interviewed Cindy McCain who just recently gave the keynote address at the International Headache Congress. Mrs. McCain revealed a couple of weeks ago that she has secretly been struggling with Migraines for 15 years to print and television media such as People Magazine and Matt Lauer on The Today Show. However, being a Migraineuer, Teri Robert had a different and very relevant angle to the story. To find out what Mrs. McCain would say to those of us who suffer with Migraine, check out Interview with Cincy McCain: Migraine Sufferer, Advocate.

Thursday, September 10, 2009

Summer Hiatus?

So, did I mention I was going to take a summer hiatus from blogging? No? Well, I'm back!

This summer has been a time of improvement and set-backs health-wise (Migraines/Asthma/stomach issues). But, overall, I am very encouraged. If my Migraine brain memory will allow me to, I'll attempt to summarize.

In June and July I had marked improvement and very low pain levels. My NDPH (New Daily Persistent Headache) was much more manageable with lower pain levels. My Migraine improvement was phenomenal. For about ten weeks from May to July, I had only three Migraines outside of my typical menstrual Migraines (which typically last 7-9 days)! Happy dances all around! I was able to start volunteering again. It was fantastic to start doing more normal things like cleaning and going to the grocery store and cooking meals for my husband. We were able to take a trip to Outer Banks, North Carolina. And we even decided to get another dog--an 18 month old rescue.

I felt as though I'd found my miracle combination of preventatives and exercising and biofeedback and diet and balancing activity with rest.

And then at the end of July, my head decided to go on a 37 day Migraine streak. Yep, you read that right 37 days! So, what went wrong?

According to my specialist it was a perfect storm of stackable triggers. It took more than one to take me down, which is the good news. But, as Dr. N (my beloved Migraine/headache specialist) said, when I fall, I fall hard. It was a perfect storm and my Migraine became intractable/resistant to treatment. Lucky me.

I was hospitalized for two weeks downtown Chicago at Diamond's Inpatient Headache Unit. In the last 10 months, over three different stays, I've spent a month in the hospital. Deep breath in. Deep breath out.

My Migraine did not break until 7 days after I was discharged. So frustrating. What is wrong with my brain? Since the Migraine broke, I have had good days and bad days. I have a Migraine about every other day and my NDPH pain has been up and down. I'm still spending a lot of time in bed, but I'm also getting out to walk and swim, which Dr. N will be happy about. I see Dr. N at the end of the month and will be glad to converse more with him and see what else we can do.

When I was in the hospital, I remembered the low pain time I had when we were on our vacation in North Carolina. I remembered the freedom of flying in a hang glider 2000ft above the ground. I remembered watching the dolphins swim through the ocean as the sun came up. I remembered walking on the beach through the waves as the sun set on the other side of the island. I remembered that I will get through this bad cycle. I remembered there will be better days. I remembered not to lose hope.

There is always hope.

But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary; tehy will walk and not be faint. Isaiah 40:31