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Ok Folks----i Thought I Was Going To Be Ok


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Tonight I have been so sick. I had my son and his girlfriend, and her daughter Kaela over tonight---well it was last night now. Anyway, I made lasagna and a nice salad. Meanwhile my husband is trying real hard to cheer me up by putting up christmas lights outside. He knows I've been really depressed and wants to help me feel better.

Considering all the pain and fatigue I was doing pretty well until I did something to my mid back. I was taking Kaela--(my son's girlfriends daughter) to day care. This doesn't happen often, but occasionally when Carlie's mom is out of town---they ask me to pitch in. Kaela dropped her sippy cup and I worried she would have a melt down, so I quickly twisted around and picked it up from the floor of the back seat. When I twisted back around I realized this was an impulsive move that I should have never done. Having EDS I am very flexable----twisting was not a problem, but the consequences are. Something went wrong, and the pain in my mid back is actually making me sick to my stomach. My husband feels something sticking out of my mid spine about the size of a pencil eraser---and it hurts to be touched--evn lightly touched.

I have been waking up in the middle of the night---or very early morning feeling nauseous----not my norm. Now I notice I need to find a more comfortable postition with my new lap top----looking down and holding my head back is bad too----worse then tilting my head back. I can only look straight ahead when posting, or lean my head on a pillow and prop the lap top up to keep me from moving my neck in a bad position. I have realized my neck is becoming more of a train wreck. I'm concerned with the lesions found in my brain, and the one the neurologist recently found in my medulla/brainstem. She also mentioned it could just be the partially blocked cerebral spinal fluid flow.

I say this because the blocked CSF flow would be better then having a lesion in that area. The blocked flow is expected with a small posterir fossa/chiari-0--aka-stenosis of the brain stem, and upper cervical spine. However, I don't want surgery, but my symptoms have gotten so bad that the Docs here in Toledo can't help me. I'm in constant depression, and still see my psychologist, but couldn't make it to my last appt----as I had to go to a funeral for my husband's Aunt. I'm becoming less and less functional. Before I could at least get out a little---------now I'm strggling to go out and walk around a store for more then 10-20 minutes. There were days I could manage to go shopping in short spurts on good days. Friday I went with a friend to Kohls, and was doing pretty good for a while, then I started getting weak, and those sudden feelings of the floor moving . I maintained my composure until we left the store, but I was sure I was going to collapse before I got to the car. You know those black carts they have at Kohl's----Well I had to take mine back---it was cold out---and I truly felt I couldn't make the 25 foot jaunt to the store to return the cart. I wanted to beg someone to take it back for me.

My head is too heavy to hold up. I'm constantly having a buzzing in my spine, and I get over stimulated so easy----I get very jumpy. I have started snapping at my husband because I'm so miserable I can barely be touched at times. Just feel like my spine is electric---------I'm sick of the vibrating. Numbness is getting worse, especially in hands and feet. The pain is to difficult to describe, more or less like a furniture clamp getting tighter and tighter from my lower head/neck, all the way to my mid back---mid back being pretty severe also. My husband and I ventured out to a local large general store---(very cool place that has everything from lawn and garden to fine wines, imported foods/desserts/chocolate, deli/bakery--fresh produce----to building materials. It's called ("The Anderson's").

I tried to enjoy the trip out. We went to "Tony Paco's---made famous by Jamie Farr on Mash) they have one inside Anderson's. Ron got some roast beef---and shared it with me because I wasn't that hungry for more then a couple bites of something. Some nimrod slammed the garbage lit behind me, and I impulsively cursed out loud. I felt so bad for doing that, but I scare easily, and I jumped out of my skin. Some woman skurried off with her little girl. This is just not me----I feel like I'm losing it. My husband and I went back to Kohl's for a short trip to pay our bill, and pick up another hoodie for himself. I did a little better there, but my husband had to carry my purse-----that's how bad my back is---can't even carry my purse. The upper body weakness is incredable. Mostly pulling or pushing or holding any weight in my arms is pretty much impossible. I have been instructed to not pick up more then two pounds. A gallon of milk is too much. My little pomeranian is too much---9 pounds. But she's not dead weight, and she helps.

Tonight I couldn't enjoy dinner---couldn't eat much---I was wiped out and in too much pain. Then after they left I was sick-----on the toilet----Which is a switch for me, as it's usually the other way around. I never knew a person could be so full of gas------------I felt like I swallowed a large balloon---I was belching like a beer drinking slob. I thought I was going to explode----and I had tremors---and of course more pain. As I type this my hands struggle from numbness. I still get the sensation that my breathing is restricted---especially when I look down or to the side. This is so long----but I just needed to get this out.

I am so depressed. I know I have a lot to be thankful for, but right now life has been a huge struggle. If I sit quietly on the couch and do nothing----I might have a fairly decent day. The more I do, the more screwed up I get. When it gets bad I lose my balance and had such pain and fatigue it's an effort to breathe.

Tonight I made lasagna---gee I should have known that I shouldn't have company------I'll pay the consequences for trying to live a little.

Sorry this was so long---just feeling a little sorry for myself.

Maxine----------------feeling lost...

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my eyes are hurting at the moment and i couldn't consentrate on the words but i think i got a gist of your post. i am sorry about your evening. just think of the pretty lights your husband hung. think of the positives of the day. that is what i always do when i am feeling down. i hope you get to feeling a lot better. hug to you.

dionna :)

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hey you!// im sorry that you are feeling so cruddy... want to hop in my suitecase and ride the train with me to TCI...???maybe they can do something to help both of us potsy girls falling apart.. :)

sorry that you feel bad.. wish i could make ya feel better.. or cheer you up somehow!

take care friend

love and hugs


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Dear Maxine,

I'm sorry life is so difficult and painful for you right now. :) Know that we all care about you and we're here for you. Hang in there.

I hope you can find some chiari specialists who can help you and offer some treatment to bring your life back a bit closer to normal.

Lots of hugs,


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hey how are you doing today??? did you get any sleep?? I hope that you are feeling better this evening.. and are in less pain.. let me know how you are doin k?

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Thank you for all your support and words of encouragement.

It means a lot to me---- :)

When I get the CT scan and colonoscopy out of the way-------at least some of the anxiety will be taken care of.

It's the worst when your spine is buzzing like crazy, and your hands are numb----just plain scary--shocked3.gif

Maxine :0)

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Sorry you are having such a rough time...I can relate with you about the nausea...I can't seem to get rid of mine :)

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Morgan, Yes I had a scheduled colonoscopy---but a virtual one-----by high speed CT scan without the scope, but since 99% of my family has polyups the surgeon and I made an appointment to discuss the regular colonoscopy. We have not schueuled it yet, but Dr. Grubb's office has been called to discuss it.

She wants to admt me to the hospial for the prep---mainly because the prep won't allow my medications to be absorbed----which in turn would make me unstable for he test.

I was fortunate enough for her to see a low BP reading when I had my first appointment with her----it was 80 something/50 something. and that was sitting. From then on she was pretty serious about the whole thing, and that is why she wanted to avoid sedation at first by doing the virtual colonoscopy. Dr. Cashen is the surgeon who found the Cancer in my brother's colon, and the surgeon who did the removal of the tumor, and the bowel resection. She is one of the nicest doctors i have ever met. After we talked about it again----we decided to just get it done. I need to follow up to make sure they got in touch with Dr. Grubb. If not, I think we will just schedule it.

My Cardiac CT scan is finally scheduled for the 14th. Theresa from Dr. Grubb's office coordinated it----she was pretty cool about it considering I was persistant. I just needed to get it scheduled before the end of the year for the insurance deductible. Usually my BP is higher then usual when I go to the doctor-----so unfortunately they don't get to see my usual low readings----which makes me wonder if they believe me sometimes.

Thanks again for your support I'm doing a little better, but have a really bad headache, and of course still have the ice pick feeling up and down from my neck to my mid back. This morning I had trouble keeping my balance. I have a partially blocked cerebral spinal fluid flow-----so i'm guessing this is what is causing my recent headache.

Maxine :0)

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