30 Things About My Invisible Illness You May Not Know

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Narcolepsy with Cataplexy
2. I was diagnosed with it in the year: 2007
3. But I had symptoms since: 1993
4. The biggest adjustment I’ve had to make is: to let things go. I can't do everything I want to do, and I can't do it perfectly. I have learned I have limitations.
5. Most people assume: I'm lazy or just enjoy sleeping a lot
6. The hardest part about mornings are: getting ready to leave the house is a HUGE undertaking. I have to take a break after every step. Take a shower; take a break. Get dressed; take a break.
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: motorized wheelchair
9. The hardest part about nights is: getting myself ready to go to sleep. I have to take a bunch of medicine, set two alarms so I can wake up in 4 hrs to take my second dose of meds, clean my CPAP mask and put water in the machine, plus all the normal stuff like brushing my teeth, etc. When I'm so tired I can hardly stand up, it's a nightmare.
10. Each day I take 21 pills & vitamins.
11. Regarding alternative treatments I: have found that they cannot be used to the exclusion of traditional treatments and vice versa.
12. If I had to choose between an invisible illness or visible I would choose: visible because then I wouldn't have to explain myself all the time.
13. Regarding working and career: I can NEVER work a normal 9-5 job because I don't have the stamina and can't be depended on to be somewhere at a certain time. I work from home and help with my husband's business as much as I can.
14. People would be surprised to know: how much I struggle with feeling inadequate and unproductive
15. The hardest thing to accept about my new reality has been: having to admit I can't do things and having to depend on others to help
16. Something I never thought I could do with my illness that I did was: graduate college. It took me until I was 29, and I dropped out, dropped classes, and asked for extensions more times that I can count. But I did it!
17. The commercials about my illness: what commercials? Most doctors don't even know what cataplexy is. I carry info sheets with me wherever I go in case I have an attack.
18. Something I really miss doing since I was diagnosed is: DRIVING!!!
19. It was really hard to have to give up: singing in the choir and singing specials at church
20. A new hobby I have taken up since my diagnosis is: bird watching
21. If I could have one day of feeling normal again I would: not know where to begin. It's been 16 years since I've felt "normal," so I don't know if I would recognize it if it actually happened.
22. My illness has taught me: to be compassionate and empathetic toward others
23. Want to know a secret? One thing people say that gets under my skin is: "It must be nice to stay home and relax all day!"
24. But I love it when people: offer to pick things up from the store for me or take me out for an afternoon
25. My favorite motto, scripture, quote that gets me through tough times is: Romans 5:3-5 "Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.
26. When someone is diagnosed I’d like to tell them: it's normal to grieve over the loss of your health and your dreams and goals for your life. Don't worry about putting on a brave front. God sees your pain; don't be afraid to let others see it so they can love you and hurt with you.
27. Something that has surprised me about living with an illness is: no one will ever understand completely what it is like for me to live with my illness, so I cannot expect that from people
28. The nicest thing someone did for me when I wasn’t feeling well was: came over and cleaned my house and didn't make me feel bad about how dirty some things were
29. I’m involved with Invisible Illness Week because: there are so many hurting people that are feeling alone in their illness, but spreading awareness can bring hope to those people like it brought hope to me.
30. The fact that you read this list makes me feel: that you love me enough to learn more about my struggles.

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 www.invisibleillness.com

The Heart of the Matter

Just when I thought I was getting my health on the right track, I suddenly began having problems with my heart. I'll be honest: medical issues involving the heart are pretty scary to me. Both of my grandfathers died of heart attacks and one spent most of his life disabled due to heart disease. Aside from smoking, I have almost every risk factor for heart disease. I should have seen this coming, but I didn't.

It all started a couple weeks ago after my doctor decided to have me try a new narcolepsy medication, Nuvigil, which helps to combat the excessive daytime sleepiness which accompanies narcolepsy. A few days after starting the new medicine, I began having chest pains, my heart was racing, and I was very weak. My doctor did an EKG and made me chew up an extra 50mg of beta blocker, which he prescribed as an addition to my current dose of 100mg. My heart rate went down a bit, but I had the weakness and chest pain on and off for the next several days. My blood pressure, however, really seemed to go down (and it wasn't high to start with). The following Sunday I blacked out and landed face down on the cement front porch, scraping my arm pretty badly. Needless to say, I basically spent the next week lying down.

My doctor said he wanted me to get in to see a heart specialist "right away," which is apparently code for "weeks later" because I just got a call from them on Friday. The suspicion was that I have something called SVT , which apparently is an abnormal firing of the heart's electrical connections. They think the SVT was aggravated by the new stimulant and perhaps has been around awhile and just masked by my severely low thyroid. Who knows? But on Friday when my heart started racing and chest began hurting again, I sensed that something was very wrong this time. I checked my BP and saw that although my heart rate was well over 100, my pressure had dropped to 80/50. I decided it would be a good idea to head to the ER. But then I suddenly got very weak, I had this intense pressure in my chest and was struggling to breathe, and then I heard this loud buzzing in my ears and everything started to go black. I managed to whisper, "Call 911" and "Call my mom" to my husband.

I could barely stay conscious, but I remember thinking that this was it; I was going to die right here on my chaise lounge. I wasn't afraid to die, but I did have an overwhelming sense of regret that I had a lot of things left unsaid or undone. I managed to tell my husband I loved him and that I was sorry our life together had been so hard. By the time I made it into the ambulance my pressure had dropped to 40 diastolic. But the paramedic was very reassuring; he gave me 4 chewable baby aspirin and kept monitoring my vital signs. When the numbers started to go up, I seemed to be able to breathe better and have more strength, but I still had pain and pressure in my chest. He gave me a few sprays of nitro on the trip, and by the time I got to the hospital I was feeling a lot better.

But then on Saturday afternoon, the whole thing happened again. Only this time, my diastolic pressure plummeted to 31. I didn't even know it could get that low while you were still alive and/or conscious. But my doctor had told me that if you lie flat, it will bring up your pressure, so I lay down and tested it again a few minutes later with a reading in the low 50's. I swallowed a few aspirin as a precaution and exhauted beyond reason, fell asleep for several hours. When I woke up and retested my vitals, I noticed that my pressure getting close to normal but my heart rate was again approaching tachycardia. I decided to take 100mg of my beta blocker, but within an hour my blood pressure began to drop and my monitor was showing irregular heartbeats. I took some magnesium supplements and barely crawled into bed.

Today has gone pretty much the same with my pressure beginning to drop and my heart rate climbing up past 100 again. I just pray that I can hold off any major events at least until tomorrow when I hope the cardiologist can squeeze me in for an emergency appointment. I've learned to avoid caffeine and other stimulants and to force myself to cough when I feel light-headed. But mostly I have to stay lying down, which is a difficult feat in a house badly in need of cleaning, laundry in need of washing and folding, and countless other household chores that are beckoning. I know there are a lot of you out there praying for me, thinking about me, and maybe even worrying. I don't know what else is in store for me, but I love and appreciate you all and your outpouring of love and encouragement.

For now, I leave you with some verses from my favorite Scripture passage,
"Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast." -Psalm 139:7-10 Please know that no matter what happens next, I am safe in His care.