So many people struggle daily with illnesses that alter their lives yet because you cannot SEE them they go right on through life with everyone expecting them to be “normal”. My illness is literally “all in my head” and throughout the Chiari community you will find that the number one sentiment is frustration due to lack of understanding! Our families often don’t understand, our doctors, only other patients truly “get it”. It can be a very isolating thing to have pain that you cannot get rid of and be expected to function like everything is totally fine when its not. What most don’t understand is that just because I am “functioning” does not mean that I am feel good. About two weeks into this whole ordeal I was still feeling awful… I woke up one morning and said to myself “Look… you CANNOT lay in bed the rest of your life. You have a life, kids, a house, a business… you are going to have to learn to deal with this pain and fatigue. So get your BUTT up and DO IT.” So I did and I DO every single day.
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
My Invisible Illness:
Arnold Chiari Malformation : Also known as ACM1. I have a 10 mm herniation of my cerebellum. It is crowding my spinal cord and causing a blockage of flow of spinal fluid which causes me to have headaches that cannot be touched with ANY prescription drugs- even narcotics. It causes a battery of other symptoms like: ringing in the ears- sometimes my ears ring so loudly I cannot even hear, hearing loss- I have significant hearing loss in my left ear, debilitating headaches, body aches, nerve pain all over, balance issues/dizziness (I cannot even count the number of times I have fallen in the shower.. i have a bruise regularly from it), I have a completely ABSENT gag reflex which every nurse who has ever swabbed me for strep has commented on- which is also the reason why I rarely vomit, tension and pain my neck, shoulders and back, FATIGUE (sometimes its all I can do to put one foot in front of the other), visual disturbances (I regularly see white spots all over my field of vision), tingling / numbness in the limbs(mine is especially bad in my lower legs, feet and hands, memory loss, intolerance to loud noise and bright lights (the light over my kitchen table nearly sends me into the fetal position… it literally hurts me.), decreased sensitivity in the extremities (my neuro was poking my right hand with a needle and I HONESTLY couldn’t tell… now he poked the left side and OUCH!!), pain in the ears, jawline, teeth, poor circulation, hand tremors, nausea, sinus / mucous issues…. the list goes on but those are my most prominent issues.
Temporal Lobe Epilepsy - I am having frequent, unprovoked seizure in my temporal lobe occurring every 2-3 minutes and lasting up to a minute in during. These are absence seizures which make me stutter, have memory loss, drop and mix up words, stop talking in the middle of a sentence, loose my train of thought, cause headaches, fatigue, nausea, etc.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chiari 1 Malformation (also known as ACM1) and temporal lobe epilepsy.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: I was in high school. I passed out in English class, nearly fell down the stairs, and passed out while driving and drove through someone’s front yard. I was checked for cardiac stuff but NEVER for Neuro and was declared to have Random Syncope due to dehydration and was told to “drink more water”.
4. The biggest adjustment I’ve had to make is: not being able to push myself like I used to. It used to be that I could stay up all night proofing or getting something done. Now I am MUST pace myself because over doing makes all of my symptoms worse. Also the lack of consistent sleep is really getting to me. I am the person who NEEDS 8 hours to function and I am lucky if I get 2-3 at a time now.
5. Most people assume: one of two things a) there is nothing “wrong” with me other than I need to loose some weight or b) they are surprised to see I am not dead yet… Yes.. this is a major brain issue which will require a MAJOR brain surgery but its not going to kill me. I am determined. I know that it HAS taken many lives but it will NOT take mine.
6. The hardest part about mornings are: waking up. Its hard to get out of bed when you tossed and turned all night. Most mornings before I get my meds in, I am REALLY feeling bad, aching, tired, hurting all over, balance is bad… I fall into the wall most mornings just trying to make it to the bathroom.
7. My favorite medical TV show is: Grey’s Anatomy or House. The new show Mercy also looks very promising!
8. A gadget I couldn’t live without is: my pill sorter. Yes I feel kind of like a grandma but when I have so many pills to take at different times of the day and memory issues… its a life saver!
9. The hardest part about nights are: the tossing and turning. Some nights I wake up choking so hard I see stars.
10. Each day I take: Some form of pain reliever (ranges from narcotic to a simple tylenol 800), Naproxen Sodium (anti-inflammatory), Seizure meds ( I have been through a couple different ones already… the first one- Topamax had AWFUL side effects… the Lamictal I am now is WAY less “side effecty” but messes with my sleep in a MAJOR way, and I am hoping to look into something like Lasix… I am hearing that for some people it helps to relieve the pressure from fluid build up. I am also going to look into some vitamin supplements.. I truly think that those help also! I need to see my cardiologist because my PVC’s are back with a vengeance. I may need to go back on my beta-blocker. I am sure this is just the start of meds because the only choice other than surgery is a whole LOAD of meds.
11. Regarding alternative treatments I: would consider it if it meant that I might be able to forgo surgery but overall I have a LOT of faith in the medical community. I just need to find the RIGHT Neuro.
12. If I had to choose between an invisible illness or visible I would choose: tough to say. This is what I have been given so I deal with it like it is.
13. Regarding working and career: I am trying my best to continue on. I have made the decision to close down my business to nothing but weddings because I truly do enjoy them. I may need to cut back on weddings as they are very strenuous, long days and they put a lot of stress on the body but for now I will take my meds and keep on. A little slower pace than I would like, but still moving nonetheless. I dread ever being labeled “disabled” and pray that my illness never gets to that point.
14. People would be surprised to know: how scared of this I really am. It sucks to think that your brain is being taken from you. I feel so much pressure from being a mother, wife, photographer and I cannot even begin to think of the “what ifs” because it nearly sends me into a panic attack.
15. The hardest thing to accept about my new reality has been: is that most people really don’t understand. Even the compassionate ones. I am always thankful for their kind words and prayers but it is a very lonely feeling.
16. Something I never thought I could do with my illness that I did was: shoot a wedding. I honestly was devastated because I thought that this meant my wedding photography career was over. I found out quickly that I am still just as passionate and creative as always (just at a slower pace now…)
17. The commercials about my illness: there are none. This is an often mis-diagnosed illness and although it effects almost double the number of people that MS does it has very little recognition.
18. Something I really miss doing since I was diagnosed is: sleeping soundly.
19. It was really hard to have to give up: doing it all. I am such a micro-manager it has been hard for me to allow others to step in and help.
20. A new hobby I have taken up since my diagnosis is: hobby? what’s that?
21. If I could have one day of feeling normal again I would: do all the things that are hard for me now. I would enjoy every single last pain free minute with my husband and kids and enjoy KNOWING that I am not a burden to anyone for just one more day.
22. My illness has taught me: its ok to be weak, to trust in God and lean NOT on my own understanding, to be STILL and know, to SLOW down, to continue researching, to find friends who understand, to be patient… with myself and others.
23. Want to know a secret? One thing people say that gets under my skin is: nothing. Its when they get that pained look on their face like I am hurting THEM by telling them my diagnosis… look… if you don’t want to know… don’t ask but seriously don’t act like I am a leppar…
24. But I love it when people: say they are praying for me. I need all the prayers I can get!
25. My [Mommy's] favorite motto, scripture, quote that gets me through tough times is: Job 23:10 10 But he knows the way that I take;
when he has tested me, I will come forth as gold.
26. When someone is diagnosed I’d like to tell them: You are NOT alone.
27. Something that has surprised me about living with an illness is: how amazing PEOPLE are and how many doctors will look at you with an obvious illness and ASK you if you are depressed… SERIOUSLY… yeah… I cannot see straight with a headache because I am DEPRESSED… get real.
28. The nicest thing someone did for me when I wasn’t feeling well was: see the need for our family to get AWAY and worked together with a group of friends to give us the BEST (and only real) family vacation we have ever had! That was truly one of the best weeks of my life! I could have stayed there forever and was very sad to see the week go.
29. I’m involved with Invisible Illness Week because: To bring awareness.
30. The fact that you read this list makes me feel: honored that you would take the time to learn a little more about Chiari….
For more information on Chiari Malformation visit:
http://www.chiariinstitute.com/
http://www.chiariconnectioninternational.com/
WACMA (World Arnold Chiari Malformation Association)
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I am so glad you posted that. When you posted Kyleigh’s I hoped you would post yours as well. I knew from the beginning that I didn’t understand exactly what your neuro issues were, but just to connect with someone else who had them gave me comfort. For the headaches, see if your doctor can prescribe something like atarax. It is an antihistamine, but sometimes it helps my girls’ headaches when nothing else does. Yet, most doctors, even neuro’s, don’t think to use it for that. Sometimes, of course, nothing helps. I pray for you every day and will keep it up. I pray more specifically when you post, but more fervently when you haven’t posted in several days.
I was lurking over here from my sister’s blog and saw where you mentioned maybe trying Lasix. My daughter was on Lasix for a year and had little to no side effects. She needed it to relieve the fluid build-up around her heart and lungs and without it she wouldn’t be here today. It definitely did it’s job well and of course since it is a diuretic her urine output increased dramatically so that is one thing to expect from taking it. So if you’re needing a drug to get rid of excess fluid in your body to take some pressure off, this is a great one with very minimal side effects
Hi, I know you don’t know me, but I have been reading your blog off and on since I met you on scrapjazz and we were pregant close to the same time around 2004-6. You have inspired me in more ways than one. I have been praying for Ky since she was born. I will now add your health to my prayers. You are an amazingly strong woman!
Aww thanks so much! Don’t you just love a baby in jeans? They crack me up!! I miss your posts, how are you??