Saturday, February 11, 2012

Let Me Say that Again…I’m Having BRAIN Surgery

Imported from my other blog...

I know, I have bitched about people for a year and a half now but this is really the final straw.

I told my friends the other day about the Chiari Malformation and the brain (and possibly spinal) surgery that I will be having. I must say, the reaction was pretty supportive. People were surprised (none so much as me!) and some people asked a lot of questions. This was good because some of them were great questions that I wrote down to ask the neurosurgeon.

Then, of course, there were the others.

Let me say, I did NOT complain about this diagnosis. Not to anyone but Pete. I did not do the whole “whoa is me” thing or anything else. I made jokes, I brushed off the severity of it, and I tried to be lighthearted about it.

Yet there were STILL people accusing me of not being positive enough. I was chastised and criticized for not being positive about having a brain malformation. And when someone wrote me and said that I would probably be okay because their dog had spinal surgery and came out fine and I joked about it I was CHASTIZED for my reaction because, after all, that person was just trying to help.

Let me say this again…

I am having BRAIN SURGERY. My brain is malformed. My brain is leaking out of my head. Someone is going to shave off my hair, cut into my scalp, and remove part of my skull-and they’re not going to put it back. The average scar is around 6 inches.

Let’s see, and then when I told Sam that Mommy was just so smart that her head couldn’t hold her brain anymore…I was chastised for THAT.

This is beyond insane.

I have joked, I have laughed, I have hidden my feelings and emotions for the past several months because the attitude that I have gotten from so-called friends about how I need to be positive.

Now, I’m going to say, what the hell is wrong with you people?

I have listened to people complain about their never-ending colds and flus and aches and pains. I never once complained about any of the symptoms that lead up to my MRI. Not once. And then, when I get a diagnosis, I tell people and I get flack for not being positive enough and complaining about it?

For some God knows why reason, there seems to be people in my life that are here to make it a point to criticize me, chastise me, and point out everything that I am doing wrong. I can’t win with these people. They’re not even reading what I write or listening to what I am saying. They are glossing over it and using their preconceived ideas about the situation to form their own conclusions and then they’re going with that.

Well, screw that. It’s not me, it’s them. They might be good people, but they’re terrible friends.

When I say I am having brain surgery and you tell me that I need to be positive and not overreact that is NOT helping me. In fact, that is diminishing my fears and making me feel a lot worse. They did it with Toby’s death, they did it with Dad’s heart attacks, they did it with Iris’ seizures, and now they’re doing it with me. I am done with this nonsense. If I am not entitled to worry or express my concerns or have feelings about anything then I don’t need these people around.

Oh, yeah, and for the person who told me that we should keep it from Sam…well…this is a picture of what my head will look like. Yeah, hide THAT. Moron.

For those who were awesome and are supporting me, much thanks. I appreciate it, I really do. Thank you.

A woman who has gone through this posted the following on her website. I really liked it. I think it applies to a LOT of people and situations, not just the brain stuff.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Chiari I Malformation, Postural Orthostatic Tachycardia Syndrome (Autonomic Dysfunction), Ehlers Danlos Syndrome, Cranio-cervical instability/Functional cranial settling

2. I was diagnosed with it in the year: Chiari in 2002, the rest in 2003

3. But I had symptoms since: 1998-ish

4. The biggest adjustment I’ve had to make is: giving up on the idea of having a career; getting used to a drastic reduction in ALL activity

5. Most people assume: that if I look like everyone else, I must feel like everyone else. That if I put a smile on my face, then I’m doing just fine.

6. The hardest part about mornings is: Facing another day. Knowing it will feel like 10,000 days. Feeling like I weigh 10,000 pounds. Feeling worse than I did the night before. Feeling more tired than I did the night before. Feeling like my life currently holds such little meaning—why should I force my body out of bed just to watch TV all day?

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My laptop…connection to civilization

9. The hardest part about nights are: Being all alone with my pain and my thoughts, and unable to sleep, over and over and over again.

10. Each day I take __34__ pills & vitamins (Plus fish oil and any as needed meds, like pain meds). (No comments, please)

11. Regarding alternative treatments I: generally stick to what a doctor recommends, with a couple recent exceptions. I believe in empirically-supported medicine. I love massage therapy!!!

12. If I had to choose between an invisible illness or visible I would choose: I think I’d prefer a visible illness, because then people would understand immediately that my smile does not come easily. It is a gift for them.

13. Regarding working and career: When I thought I was getting better, around 2007, I had a piano studio of 24 students. But it was really a ruse. I was living off of stimulants and narcotics. I couldn’t keep it up. My body started protesting with narcoleptic episodes. As soon as I slowed down on the meds, my ability to work slowed down, too. I’m now down to about 3 half-hour lessons/week. And even that is a challenge. I don’t even know if this is the career I want to stay with. It’s just the only career I thought I could pull off as I was going through college. I have no idea if or when I’ll be able to work more. And I have no idea what job I would have chosen without limitations, or if I'll ever find a different one.

14. People would be surprised to know: that I never have a moment that is symptom free or pain free. I cannot remember what it feels like to live without pain. Also, the severity of everyday fatigue.

15. The hardest thing to accept about my new reality has been: My lack of independence and loss of social life. They do go together.

16. Something I never thought I could do with my illness that I did was: Graduate from a 4-year college. At one point, I also got into really good physical shape. I hope to do that again when my body allows.

17. The commercials about my illness: n/a

18. Something I really miss doing since I was diagnosed is: Gymnastics, Exercising, Singing, Performing on stage in some way.

19. It was really hard to have to give up: Driving…I need to drive again for my sanity. I feel so confined.

20. A new hobby I have taken up since my diagnosis is: I started a support group, but then became physically incapable of running it. I read a lot of books, but that’s not new. I watch endless hours of tv, but I’m not proud of it. I guess I’ve learned to relax. I always used to be so busy and stressed in high school and younger.

21. If I could have one day of feeling normal again I would: spend it doing all of the things my fiancé has always wanted to do with his partner, but can’t with me. He deserves that day of normalcy even more than I do. So it would be his choice. I think it would involve skipping and jumping and running (for me).

22. My illness has taught me: how to relax. How to listen to my body. How to revise my expectations for myself in life. How to accept myself as I am now.

23. Want to know a secret? One thing people say that gets under my skin is: if you just stay positive 24/7, you’ll be better off. That’s not necessarily true! Okay? We need to live in the real world, and we need to accept our circumstances as they are in order to cope with them. Not just pretend that everything is fine and put on a happy face. No one should have to pretend to be optimistic 100% of the time!

24. But I love it when people: Care, Listen, Learn about my messed up brain. Especially doctors.

25. My favorite motto, scripture, quote that gets me through tough times is: “A journey of a thousand miles begins with a single step.” –Lao Tzu. Because what can we really do, other than persevere.

26. When someone is diagnosed I’d like to tell them: Allow yourself to grieve, time and time again, over everything you lose to this illness. It’s the only way you will learn to accept your new self.

27. Something that has surprised me about living with an illness is: How ignorant the entire medical community is about all of these illnesses. The number of times and ways they have let me down.

28. The nicest thing someone did for me when I wasn’t feeling well was: Lay next to me, without touching me, when my skin was too sensitive to be touched. Just because my skin hurts, doesn’t mean I don’t want to be held, just that I can’t be.

29. I’m involved with Invisible Illness Week because: n/a

30. The fact that you read this list makes me feel: Heard.

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