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.

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.

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.

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.

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.

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?

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.