Friday, September 5, 2014

30 Things About My Invisible Illnesses -Migraine & NDPH- You May Not Know

September 8-14, 2014 is National Invisible Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved.  2014's theme is JUST ONE. "You may be just one, but you are one of over 100 million people who live with a chronic illness, and most of the illnesses are invisible."

The "30 Things You May Not Know About My Invisible Illness" meme has been around for a while. I filled it out here on my blog for II Awareness Week 2009. Five years later I am filling it out again & I haven't yet read the 2009 meme. I'll be focusing solely on Migraine disease & New Daily Persistent Headache (NDPH) as these are the ones I discussed five years ago. Click HERE to learn about Migraine. Click HERE to learn about NDPH. 

30 Things About My Invisible Illness(es) You May Not Know

1. The illnesses I live with are: Migraine; New Daily Persistent Headache; Meniere's Disease; Fibromyalgia; IBS; Anxiety; Depression; PTSD

2. I was diagnosed with them in the years: Migraine disease: February 14, 2006; NDPH: February 17, 2006.

3. But I had symptoms since:
 I’m pretty sure my first Migraine was in October 2005, but I was sick often growing up with chronic sinus headaches which the literature says are often actually Migraines that have been mis-diagnosed. I have had headaches as long as I can remember but they were more severe in high school. 

When I started working as a speech language pathologist for special needs 3-5 year olds in August 2003, I became sick more frequently. I had 8 sinus infections the first year I worked in that building. During the summer of 2005, I would have headaches when I was at work, but they would go away when I was at home. On October 26, 2005, the headache became severe and never left.  I have had that same headache every minute of every day since then. That headache is different from my Migraines and it is called New Daily Persistent Headache. According to this article by Teri Robert, "Many doctors consider NDPH to be the most treatment refractory (not responsive to treatment) of headache disorders."

Unbeknownst to me, the building I started my career in, in 2003, was laced with mold, to which I am severely allergic. On April 12, 2001, "The Daily Herald" reported on the building I worked in saying, "There are a number of structural problems and life-safety issues with the 42-year old building." According to an August 3, 2000 "Chicago Tribune" article, the district's Facility Advisory Committee for Education recommended the building be torn down. On December 12, 2005, as reported, the superintendent of the school district said, "he will recommend that the old deLacey Family Education Center, still used by preschoolers be torn down." Remember-these were special needs preschoolers. At the same time of this statement, I had been sat down by my supervisors saying that the building was perfectly fine. If you read the article link (please do), you will read that many residents in the area had health concerns about the building and justifiably so. The weekend before my life changed and my headache became disabling, I had entered a room that was used for storage and rarely entered. It had a very pungent smell of mold. In January 2006, staff and students moved to a brand new building. Suddenly staff whom had had several miscarriages got pregnant. The older building I worked in was finally torn down in 2010. But, it was all too late for my body. Genetics + environment = Disabling Migraines and NDPH.

The last day I worked, February 8, 2006, I had been laying in on the floor of the new building in the office of 14 (yes 14 of us) speech language pathologists. I had spoken to my neurologist (who lost his medical license a couple years ago) on the phone but he had dismissed me and told me there was nothing to be done. I barely made it through a parent meeting and promptly drove home to the contest of my co-workers. George, who was my fiancĂ© at the time, immediately took me to the ER.

4. The biggest adjustment I’ve had to make is:
 to the silence. Silence of working. Silence of interacting with friends and family in the way I used to. Silence of volunteering/serving others in the way I used to. Silence of doing the things I loved.

5. Most people assume: I am feeling well when I am with them or talking on the phone with them or posting happy things on Facebook when the reality is I have a mask up and actually in pain as my headache is constantly present. The severity may vary, but I'm always hurting. 

6. The hardest part about mornings are: waking up. My NDPH often is worst when I first wake up and takes a while to calm in severity if it calms at all.

7. My favorite medical TV show is:
  I don't have a favorite medical TV show, so I’m going to instead say that my favorite medical documentary is “65_RedRoses” which follows an incredibly resilient young woman with cystic fibrosis. I was inspired.

8. A gadget I couldn’t live without is: my iPhone. I could live without it, but I really appreciate it.

9. The hardest part about nights are:
 Being awake and in pain. Even though I am home alone all day, I feel the most alone when I am suffering and watching George sleep.

10. Each day I take: 16 pills and a patch. I also have 12 as needed pills and IM injection on any given day. (No comments, please)

11.Regarding alternative treatments I:
 have tried many alternative treatments for my Migraines and Headaches including: Biofeedback, Diaphragmatic breathing, Trigger Point Acupuncture, Cold Laser Therapy, SPG block using Spenocath device, MRT Food Sensitivity Testing & LEAP ImmunoCalm Dietary Management Program with a Nutritionist, Physical Therapy, Massage, Psychotherapy, Gentle exercise (Walking, Gentle Tai Chi, Easy Pilates), SootheAway Devce, Ice 

12. If I had to choose between an invisible illness or visible I would choose:
 Neither. Michael J. Fox, who has Parkinson's Disease, once said that if we all gathered in a circle and put our illnesses in the center in order to switch with each other that after we learned the true nature of the other illnesses, instead of switching with someone else, we would probably take our own illnesses back out of the pile.  

13. Regarding working and career:
 I have not worked since February 2006 and miss it terribly. I had been able to keep up with my continuing education. But I am currently in the process of going inactive disability with my creditation. I kept active for a while because I thought I might be able to work again. But, now I can’t even keep up with my continuing education (30 hours every 3 years) so it is time to go inactive. 

14. People would be surprised to know:
 I have spent the better part of the last two years either on the bed or on the couch. I saw barely anyone except George and doctors office staff in that time save when I saw my couple's small group a few times. When I visit with out-of-town family, I usually only see them for a few hours of the visit and am in bed the rest of the time due to one or more of my illnesses. When you see a photo of me on vacation and I "look good", I probably was sharing a small % of the trip. The truth of what the vacations are is that I spend 90% of the time unable to participate.

15. The hardest thing to accept about my new reality has been:
 Limitations. When I was healthy, I could push through anything without consequences. I felt I was like Monica on "Friends" in that she was "freakishly strong."  Not being able to push through my limitations also affects my ability to invest in and develop relationships.

16. Something I never thought I could do with my illness that I did was: handglide.

17. The commercials about my illness:
 misrepresent Migraine disease.

18. Something I really miss doing since I was diagnosed is:
 experiencing life with George without illness.

19. It was really hard to have to give up:
 becoming a parent. We tried through adoption & pregnancy and both times my health got in the way. It became clear that it is not something that I can do.

20. A new hobby I have taken up since my diagnosis is:
 cooking. I love it.

21. If I could have one day of feeling normal again I would:
 Find someone ill who is in need of physical help and serve them. I would invest lots of time in my friendships. I would do something active at church. I would drive six hours to spend time with my parents. I would drive 8 hours to help my father in law and enjoy the company of my mother in law. I would have my sisters in law and brother at my house and do all the fun things I have wanted to do with them. I would go out ballroom dancing with George. I would travel to meet all my chronically ill friends in person and hug them all. I would go to Cincinnati and just "be" with my soul sister.

22. My illness has taught me:
 acceptance; how to let go of expectations of others; a better understanding of others and their limitations; boundaries; how to let go of people whose friendship I was chasing; joy is possible at any time.

23. Want to know a secret? One thing people say that gets under my skin is:
 “I know that you have probably heard lots of suggestions and advice from people and I know you are probably tired of hearing them, but here is my suggestion for you or diagnosis of you." 

24. But I love it when people:
 Say, “How can I be a friend to you? How can I support you?" I also love it when people share their lives with me and trust me and allow me in. I love it when people treat me like I am Kelly, a person, not Kelly, an ill person.

25. My favorite motto, scripture, quote that gets me through tough times is:
 I couldn't have a favorite. But something I read recently and copied into my journal is: "I pray God may open your eyes and let you see what hidden treasures He bestows on us in the trials from which the world thinks only flee." St. John of the Cross.

26. When someone is diagnosed I’d like to tell them:
 Doctors are not gods. They make mistakes. Question them. Don’t blindly trust. Educate yourself on your condition and the treatment your doctor is recommending. Make connections with others who share your diagnosis. Most importantly get a recommended Migraine/Headache specialist.

27. Something that has surprised me about living with an illness is:
 This answer has changed over time. In the beginning I would’ve said I was surprised at how many friends I’d lost. Now, I’m surprised at how much effort I have to put in so that my life is not all about my illnesses.

28. The nicest thing someone did for me when I wasn’t feeling well was:
 listen; empathize; stay; give me grace; make me yummy Kelly-friendly food; not try to fix my "problem(s)," hold my hand and tell me "It is going to be okay."

29. I’m involved with Invisible Illness Week because:
 it is important to me that people understand that myself and many others like me are usually wearing a mask and you usually cannot see our pain. We may "look better" but that does not mean we are better.  

30. The fact that you read this list makes me feel: happy and grateful.

To find out more about Invisible Illness Awareness Week, please click HERE.


  1. First, Lovely One, No matter the distance between us, you are one of my closest friends. It's my turn to ask how may I support you and be a friend to you, my dear? I adore you illnesses and all, Kel! :D <3

  2. A great list.
    i wish I hadn't let invisible illness week pass me by.
    things just seem to sneak up on me and I don't know they are coming.

    I still might post this list again....I've done it before, but my answers have changed.

    I'm glad I know more about you. thank you for being so open and sharing.

  3. Thank you. Thank you for writing something I can so very much relate to - and although I only have "one" of the many, it is no fun dealing with NDPH and especially points 4.5.6 & 28 - but let's me honest, they're all relatable and the silence factor is a big one. Ox from Australia.