30 Things About My Invisible Illness You May Not Know . . .

... or, almost 30! Invisible Illness Awareness Week is coming up - September 14!

As inspired by Teri Robert, here are my "stats" about my invisible illness, in preparation of the continuation of raising awareness of chronic, invisible illnesses during the important week of 9/14-9/20. Thanks, Teri!

1. The illness I live with is: daily chronic headache (New Daily Persistent Headache, technically).
   
2. I was diagnosed with it in the year: 2004 as a college sophomore, during winter vacation.
   
3. But I had symptoms since: that one random day that I woke up with a bad, strange headache.
   
4. The biggest adjustment I’ve had to make is: accepting that I sometimes have to slow down, not be a perfectionist, change my "life plans" (ie. had to put off grad school) and that my relationships with people may not last/be what I have had planned...
   
5. Most people assume: that I just have a migraine, and since they've had one once, they can just start making suggestions of what could help. While that's great, I don't have migraines... but part of me wishes I did, so I'd have more definite meds that would help/have things more under control...
   
6. The hardest part about mornings is: getting my "stay awake" medicine to kick in so that I can feel safe driving, feel productive working, etc.
   
7. My favorite medical TV show is: House, old ER episodes, Grey's Anatomy
   
8. A gadget I couldn’t live without is: my computer!
   
9. The hardest part about nights is: occasional insomnia, occasional random pain that keeps me from falling asleep.
   
10. Each day I take: 10 pills, and hopefully a vitamin or two. (Agree with Teri... no comments about the # of pills... it frustrates me, too).
11. Regarding alternative treatments I: have tried lots; massage, craniosacral therapy, PT, chiropractic, acupuncture... massage and acupuncture sure relaxes me during the sessions/right after but I can still end up having pain during them.
    
12. If I had to choose between an invisible illness or visible I would choose: This is hard... while a visible illness would help with people accepting/respecting? that I have an illness, having an invisible illness like mine allows me to have random times of feeling great/forgetting that I'm dealing with it and i don't have to tell the people I'm with.
    
13. Regarding working and career: I barely graduated from my undergrad college on time (May '06 - I kept thinking i'd have to take time off), but then put off graduate school until Fall '08. I've worked all along, but have certainly dealt with the pain during work (special education assistant-type positions)...
    
14. People would be surprised to know: that I am in some type of pain every day.
    
15. The hardest thing to accept about my new reality has been: limitations.
    
16. Something I never thought I could do with my illness that I did was: Be so strong lately (emotionally) when I really needed to be.
    
17. The commercials about my illness: don't really address what I'm really dealing with, if they exist already.
    
18. Something I really miss doing since I was diagnosed is: feeling headache-free for one full day without medication doing that for me.
    
19. It was really hard to have to give up: my perfectionist habits and things that I had planned out for my future for so long...
    
20. A new hobby I have taken up since my diagnosis is: blogging.
21. If I could have one day of feeling normal again I would: not know what to do with myself (exactly, Teri).
    
22. My illness has taught me: to realize the strength that I DO have within me and that not everyone is going to be as understanding/supportive as you hope they are.
    
23. One thing people say that gets under my skin is: "Don't you have medicine for that?/Why don't you just take your medicine?"
    
24. But I love it when people: ask me about it and actually listen.
    
25. My favorite motto, scripture, quote that gets me through tough times is: "Be Here Now." -via Jenni Prokopy and ChronicBabe.com
    
26. When someone is diagnosed I’d like to tell them: Don't put all of your eggs in one basket; don't be afraid to get a 2nd opinion no matter if the doctor is pressuring you to have a certain procedure, try a certain med, etc.
    
27. Something that has surprised me about living with an illness is: how many people come up with "cure" scams to make money from us.
    
28. The nicest thing someone did for me when I wasn’t feeling well was: sit and rub my back when I was crying in pain and looked like a mess. I'm thankful for everything anyone's ever done to help me; they're really all the 'nicest things'.
    
29. I’m involved with Invisible Illness Week because: I feel that we need to speak out and get more awareness out into the public view.
    
30. The fact that you read this list makes me feel: that I am being heard and we can ALL be heard.

Oops, Sorry...

Yea, so I'm still alive, but just overwhelmed with lots going on... since the middle/end of April:
-a few sessions of couples counseling
-end of engagement/relationship
-lots of work at work, including progress reports, ABLLS (Assessment of Basic Language and Learning Skills), losing hours due to client's family losing summer funds, etc.
-searching for a new apartment
-starting the process of packing

Soooo... yep. Sorta a lot going on, emotionally, physically, oh, and YES! I STILL have my headache business going on. I haven't really had real time to attend to it as far as trying to start up a relationship with a new headache specialist in the area... I know that I should be taking care of myself, but all of these other aspects present themselves as equally important. I need to be in a new living situation by August 1, and I have now ensured that that will happen. It certainly wasn't easy to set in stone, but I took a lot of time and made it happen.

My sleep has been all sorts of messed up, but I think it's moreso due to stress than my headache business. I have, however, had occasions lately where I've woken up and my head hurts, which is not typical.

In the middle of May, my current headache specialist suggested that I double the dosage of my Verapamil.
"Really? Just actually double it? Not a taper or anything?"
"Nope, just double it."
Oh, I really don't recommend doing that unless you have a stomach of steel. You may not make it all the way home from work without getting sick. Just sayin'. The best part was that it took 2 nights' worth of doses for the doubled med to really hit my system, and then when I called the doctor's office (a day or so later, when I could actually handle talking on the phone for a moment), the nurse I spoke to basically didn't believe me.
"Well, I've NEVER heard of nausea as a side effect!"
"Ma'am, I'm just telling you what happened. If you could just put it in my file and tell the doctor, that would be great."
"Are you SURE you didn't eat anything strange or do anything differently? I've just NEVER heard of that as a side effect!"
"That's fine, I'm just asking for someone to write it into my file and to tell the doctor, please."

Gahhh. Clearly, I did not continue at that doubled level. Anyways, I am going to try to be better about writing, as I have always felt it to be helpful. I've just been so overwhelmed with everything, it's been difficult to find the energy for sitting down to write. I'm hoping that after my move and after I settle in, things will quiet down... and I can deal with all the craziness that's been going on.
I'll also work on catching up on all of you, my headache blog friends, I miss you all.

CureTogether.com - Check It Out!

Through the power of Twitter, I have connected with Alexandra Carmichael ( @accarmichael ) and her team's wonderful website called CureTogether.com . A good description is written about it right on their site:
"Start tracking your health today. If you have a condition, compare your symptoms and treatments to people like you. If you want to optimize your health, see charts and watch your progress. Join now, and invite your friends and family to join too!"

There was already a great deal of symptoms and treatments being tracked about migraines, and I started tracking information about other kinds of headaches (ie. my diagnosis, chronic daily). It's a very helpful way in how it encourages you to keep tabs on both your physical symptoms in addition to how you are dealing with everything emotionally. I definitely would encourage people to check the site out and see what other people are doing to help themselves feel better, what is helping, what isn't, and what other options are out there as far as treatments, etc.

Keep up the great work, Alexandra and team!

An Old Article, But Still Rings True...

New Daily Persistent Headache Pain: Diagnosing a New Condition -

June 18, 2007 by SJD

"For Those Silent but Brave Sufferers...
New Daily Persistent Headache Pain (NDPH) is a relatively new condition, and one in which there is not a lot of solid information on..."

http://www.associatedcontent.comarticle/279915/new_daily_persistent_headache_pain.html

Isn't that the truth?

Busy Bee...

...that's me. I've been so neglectful of my blog lately! I've certainly been doing my share of reading others' blogs, however, especially entries and blogs that have to do with chronic pain and how to deal with it. That's been a big issue for me lately - how to work on dealing day-to-day with the chronic pain that I have, and especially with the bouts of depression that it can bring with it. I've also found some blogs and individual entries that have to do with chronic illness and relationships, since that has been on the forefront of concern around here. Even when a person has experienced a chronic illness alongside the patient from the onset of the illness, that partner can certainly have a hard time dealing with the illness, as well. The couple definitely needs to work together so that both experiences and concerns are shared and addressed appropriately as to not cause added friction. More to come about that later... I think...

My pain hasn't been TOO bad lately - knock on wood - and I have only taken a rescue med about once in the last 3-4 weeks. That's pretty damn good, if I may say so myself. I've been to about 5-6 acupuncture sessions (5-6 weeks in a row), and my acupuncturist also practices Zero Balancing (ZB) which I have had almost every visit. It's hard to tell for certain that I have had actual improvement in my pain since beginnning to work with my acupuncturist, but I know that I definitely feel the movement of the energy when she places the pins in certain places, based on how I explain the pulsing and whatnot... hard to explain, but I love the relaxing atmosphere and the idea of it all. I'm also working with a holistic nutritionist, so I'm looking at ingredient lists and doing my best to eliminate additives and all that jazz.

Anyways, I've been really just trying to keep myself extra busy with work - the kids that I spend my time with are truly amazing, and I'm seeing that more and more these days. For example, one of my 2 six-year olds that I work with at the clinic has become incredibly verbal and opinionated within the last few months, and especially in the last few weeks, has started to incorporate "spontaneous mands", or requests, into his repertoire. An example of this would be if we were in one of the classrooms, and he independently said that he wanted to jump on the trampoline. The trampoline isn't in view, and he's requesting an item that isn't in view as opposed to a typical request that IS in view, whether it's independent or prompted. SO amazing. We even had a progress report meeting with his parents last night, and his father said that it feels like the little guy is "becoming a bigger part of the family" and "coming into his own person."

THAT is one of the many, MANY reasons why I do what I do.
It helps to keep my chronic headache pain on a back burner, if only for a moment. It's worth it.

Just another evening of babysitting...

"So, what do you think of Joanna?" - girl, 8, I have babysat for before
"Yeah, she's a really nice lady." - boy, almost 6, has never had a babysitter before

Unconscious Mutterings

I say ... and you think ... ?

1. Studio :: painting
   
2. Meetup :: sports bar
   
3. Ostrich :: giant egg
   
4. Jokes :: stand-up
   
5. Estranged :: couple
   
6. Random :: words
   
7. Slap :: face
   
8. Hotel room :: giant bed
   
9. Inscribe :: pen
   
10. Polar :: Polar Soda factory