The Chiari Chronicles

2009-05-17T06:54:00.000-07:00

Day after Day

Hopefully someone here will get the song reference.

So my day started today with me flipping off the coffee maker because she ran out of water. I was angry with a coffee system. It does not bode well for the 6 hours of loud music at Aly's dance competition that I am about to sit through. Love the dance but could I just put earplugs in?

Oh, and I found a syrinx on and MRI from 2007 that about 5 "health care professionals" missed. I only found it because MY RIGHT HAND HAS BEEN NUMB FOR 5 DAYS AND I HAVE BEEN SHUFFLING AROUND LIKE AN IDIOT. I looked back through the old films and I know enough now to know a cyst when I see one! I am having an MRI on Tuesday. I was supposed to be seen immediately but my insurance company didn't see how immanent paralysis was something to get all worked up about and didn't get my claim proceeded right away.

Depending on the results of Tuesdays tests, my grand plan might have gone to hell in a handbasket. Fuck. Not very Capricorn I tell ya.

2009-05-12T16:25:00.000-07:00

Denial

I seem to spend much time on this blog avoiding the big ugly zit on my face. AKA my ever failing health. I don't tell my friends and family, I don't go to the doctor until I am in so much pain I can hardly talk and finally, I take it all out on my poor husband. When I tell people about my disease they get the most horrified look on their face-so I stopped telling people. I don't need pity. I don't want anyone to feel sorry for me. But I find that I am just so angry. How do you stop those feelings without a support system? My husband is incredible but he can only take so much and he is just so worried about me at this point. I don't want to talk to him either. I think I have a herniated disc in my back. I go for an MRI on Friday. I haven't been wrong in a while about my back. Dammit. I just don't need this right now. I am pretty sure it is because of the fall I took down the stairs last year. Chiari=Fun.

2009-05-09T17:32:00.000-07:00

Frustrating Conversation With Doctor's Office: Part 2

I got a call back from SP's office. "B" told me that the sharp stabbing pain in my knee every time I took a shit was nothing to be concerned about. Furthermore, I should ignore the numbness in my foot.

I am a stickler for getting information correct so I repeated this to her. She paused and said I was correct. I think what she meant was, don't call us, we'll call you.

I think they just don't understand my droll sense of humor.

In the meantime, not accepting that I was not meant to pee or...you know, I called my family doctor who is SO busy that she can't see me for a month so THEN I called the orthopedist I go to for the degenerative disc disease in my upper back (gee, this couldn't be related to THAT could it???) and left a message for HIM. I am not taking this sitting down people! Six months ago I would have crawled into a hole and cried, felt sorry for myself and not done a thing! Now, I am a militant Chiarian! I am fed up with stupid doctors and even dumber clinicians! What I have realized, what every sick person out there needs to realize, is that no one is going to care more about your health than YOU. Take charge. Be in control. Stop letting others dictate how you are going to feel.

I feel better now.

2009-05-08T05:53:00.000-07:00

Frustrating Conversation With Doctor's Office: Part 1

I placed a called to my neurologist's office yesterday (lover of my shoes, all around nice guy, smarty, smarty pants) to let them know about the troubling new symptoms I have been having. I touched on it last week in a blog posting. I am now having sharp, stabbing pains in my left knee whenever I bear down (you know like in going to the bathroom) or at this point even standing up, sitting down etc...I also have been having more and more frequent periods where my left foot goes completely numb.

When I spoke with smarty pants' nurse and explained the symptoms, the first words out of her mouth were, "well, it doesn't sound like MS!" Well, I should hope not, since I don't have MS, I said. Do people even look at charts??? This started one of the most bizarre interactions I have ever had with a medical professional (I am using that word very lightly here). She then asked me if I had been to see the Rheumatologist that Dr. Smarty pants had recommended. I asked her why. She said that it seemed to her that the problem I was having was rheumatalogical in nature and if I hadn't seen that doctor yet I should do that-basically before bothering them first. I have no patience for people that do not take the time, or energy to care about me. Clearly I was a bother to this woman and she had WRITTEN ME OFF about 30 seconds into our conversation. So this is what I said...(paraphrasing) Well, "B", if you had looked in my chart you would have noticed that Dr. Smarty Pants didn't have a recommendation for a Rheumatologist, he also said IT WAS UP TO ME whether I went or not. Furthermore, since the pain I am having SEEMS to be happening when I do things connected to bearing down, that would lead one to believe it is a SPINAL issue not a Rheumatological issue and since with my disease I have to be worried about things like CYSTS IN MY SPINE and Dr. Smarty Pants told me to let him know if I had any changing symptoms maybe you could just pass along the information to him?

Silence.

What are the chances of him getting the message. My husband thinks I should just call the MRI center and order my own scan. At this point I obviously know what needs to be done and as good as the doctors are that I am dealing with, their staff leaves something to be desired.

Sigh.

2009-05-07T13:07:00.000-07:00

Therapy Thursday #1

My children constantly complain that my antics and general parenting techniques are going to drive them both into future therapy. I figure I will save them both the trouble of compiling a list later on for said therapist and will start it now. Thursdays are from hence forth known as THERAPY THURSDAYS.

For our first addition of TT, I would like to revisit a topic that I touched on last week. Reason number one my children will need therapy when they grow up: I lie to them. Now, in my defense, I do it for there own good. Why do they need to know of my constant body wracking pain? The fact that doctors want to open my head like a cantaloupe? No need I say. Others would argue that they know we are living in denial. Yep, we are. And I like it there just fine. There will come a day when their little walls will come crashing down. But not today.

2009-05-05T13:16:00.000-07:00

Scales of Justice for who?

I just received a letter in the mail stating that the abusive, psychopath, father of my youngest child, ex was yet again filing for bankruptcy. You may wonder WHY I received a copy of the letter from the bankruptcy court in the first place since a) he is my EX and b) I clearly have very strong negative feelings toward him so it is unlikely I have any financial connection to him. But this is where you would be wrong. My psychopath ex is supposed to be providing the COLLEGE fund for our 13 year old which I am assuming from the fact that I am receiving a copy of said letter in the mail indicates that he has raided said college fund. I am listed on the fund as a benefactor if psychopath should happen to say, DIE. The fund had 40K in it two years ago. My password was taken out of the system at that point and I have not had access to the account. PP promised me that the money was all still there but this is from a man that screwed another woman while I was in labor with our child and wouldn't sign the birth certificate. He also kidnapped our son when he was about a year and a half old...real deal. Before the days of Amber Alerts and where every missing kid got a milk carton. But gone. Really gone. It's another story how I got him back and how PP got his visitation back but I digress...My point is that I was starting to save MY money for surgery. Hopefully so I could have it next May or June and now I find myself in the position of a kid with no college money at all. Not a position we wanted him to be in at this point. Sigh. I often wonder who I offended so much to deserve all this?

2009-05-03T14:37:00.000-07:00

I am not a dance mom.

Am I a better person for admitting it in print??? Probably not. Another "not a dance mom" said to me at my daughter's dance competition today, "some of these moms look really happy to be here". Now, dear reader, I want you to understand that I LOVE watching my own child dance. She is graceful, beautiful and immensely talented-she loves to dance. What I don't love is sitting on my ass in a cold, loud, dark auditorium watching the 300 other children that I don't know and care nothing about for 6 to 12 hours. As this is a blog about my Chiari, I don't have to point out to any of you fellow Chiarians that I am sensitive to light, cold, loud music and to sit anywhere for long periods of time makes me a little cranky. On a positive note, my daughter was old enough this year to start rhinestoning her own costumes. And doing her own hair and makeup. I am becoming obsolete. I can live with it.

2009-05-02T08:32:00.000-07:00

Number one. Press send.

I finally pressed the send key on my computer today. This downloaded the forms from the Wisconsin Chiari Institute. My current neurologist (lover of my shoes, all around great guy and very smart doctor) thinks brain surgery is BAAAAAAAD, very BAAAAAAAD and thinks we should use it ONLY as a last resort. Well kids, when you have to go to the bathroom hunched over and twisted sideways because that is the ONLY position you don't get shooting pain down you left leg, it might be time to explore another option. I'm just sayin'.

2009-05-01T07:32:00.000-07:00

Liar, Liar Pants on Fire.

Last night my daughter (she is almost 16) said to me, hey mom, whatever happened with all that testing you did? You know, your brain was big or something? Now, to put it all in context, this past week, I have been feeling particularly bad, tripping over things, walking into walls, having a lot of pain blah blah blah. You all get the picture. So I look at her and say...Everything turned out fine honey, nothing to worry about. And smiled. I fricking smiled! Which is really hard when your head hurts so bad you can't feel the left side of your face! She says, OK. And get this! I know she doesn't believe me for a second and that stupid joke starts going through my head about the longest river in Egypt...denial. But I keep smiling and at this point she is smiling so all is good. I know I am going to hell for a) lying to my daughter about this whole mess and b) not telling her in the first place...for crying out loud it's been 5 years! As a side note-according to my mother and step-father I am also going to hell for having children out of wedlock (as are my children)-but that is another post for another day. So anyway dear reader, when they fillet me like a tuna sometime soon, I am gonna have a lot of 'splanin to do. I hope they understand, but I fear that they will both add this to the ever growing list of "reasons why I need therapy when I grow up" list.

2009-04-30T13:08:00.000-07:00

Know when to Hold 'em.

You know the song, know when to hold 'em, know when to fold 'em know when to walk away, know when to run? Blah blah blah. Well, for the first time in my marriage, I got so mad at my husband that I actually walked out of the house, got in my car and drove away. Now the question that needs to be asked is, am I so angry about not feeling well and pretending to everyone else that everything is fine fine fine that I am not really angry at my husband but INSTEAD am just manifesting my anger in a non-productive and downright hurtful manner projected toward the ONE person in the world I know I can always count on????

NO! I am just really fucking pissed at my husband.

But that said, he puts up with no sex when I have a headache...how often is that-hello??? I have Chiari! He takes care of the kids when I am a complete wreck and he rubs my feet. Double bonus points!

2009-04-29T06:15:00.000-07:00

Golden Goddess.

I have the most amazing gardens. If ever there was someone on the planet that needed a place for respite and quiet...oh hell, a place to hide from my family and play in the dirt, it's me. When things get particularly crappy (and being on Diamox I mean that in every sense of the word) I just go visit my golden goddess. Now I am sure that she has a proper name, but this time of year through about September, if I visit her at the right time of day you can see how she looks almost real. It is tempting to chat with her as I am fertilizing and weeding away. The light is so beautiful around her face. And sometimes, I am sure you will agree, it's nice when they don't talk back.

2009-04-28T19:06:00.000-07:00

My Brain Is Bigger Than Your Brain.

I really don't understand how it took 5 neurologists and neurosurgeons 5 years to figure out that a Chiari Malformation was indeed the cause of my ever-growing list of symptoms (I celebrated last week with a fine glass of wine when the list reached two pages!).

I have been told I am ape-shit crazy, I have been told I have a vestibular imbalance, I have been told I could have a brain tumor, I have been told I could have MS, I have been told I am ape-shit crazy, I have been told to get more sleep, I have been told I AM JUST STRESSED, I have been told that I might have arthritis, colitis any -ritis you can think of. I have been poked, prodded and outright laughed at to my face. I have been told to just give it time, I have been told after passing out at the dentist that, "it will pass and call in a month if it gets worse". Oh yes, and I have been told that I am ape-shit crazy.

The clinical diagnosis sat in a file at my doctor's office for a year and a half but they didn't say anything to me because I happened to have the misfortune of seeing someone other than my primary physician the day I went in for my initial MRI and the films went to him instead of my regular doctor (she is a saint). He didn't think the Chiari was, " a significant finding". Uh, dude. I am not a doctor but I did sleep at a Holiday Inn last night and even I can tell from the MRI that I have so helpfully posted for my fellow Chiarians that I am FUCKED.

I have since been informed by my current neurologist (who digs my shoes and is an all around nice guy besides seeming to have a pretty big CLUE about Chiari) that I have blocked CSF flow and my brain is basically STICKING to my brain stem. I am on Diamox (sucks) and Topamax (sucks) and you, my reader are probably at this point wondering how I am able to even put two words together. Just know that my acerbic wit and charm haven't left me nor my smart ass bent.

This blog will be about WAY more than just Chiari. My life is about more than Chiari. I will it to be.