I hate my life

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I hate my life

Postby mbgc1 » Thu Dec 09, 2010 6:45 pm

My life sucks..

Ever since the CM .. I have gone down hill in every way. They keep finding more things to treat me for and I am in more and more pain. one big bruise with blown out veins from them putting in blood and infusions and then checkink it over and over tests after tests..neverdone together and never an answer that is clear just more tests

I have NEVER been so despondent in my life...Who is the person looking back at me ???????? I don't recognize her. Not her face,norher voice, or the look in her eyes...My eyes are empty...soempty.

This week is always an emotional train wreck for me. My father died on the third, my birthday is on the 7th and that is when we burried him
(
i have no idea why my family picked that day)

Today is my mothers birthday ( she has been dead for 22 years buy I miss her more each year and know how disapointed she would be in me and my lack of fight)

My 16 yr oldis being a little scary in her actions toward me. Even Taylors' TSS worker mentioned being concerned

Oh , at least I did get one laugh.. I got an email from my nl about my mri results.. well they look good.. they have nothing to compare them to according to radiology (umm ok you have done them every 6 months) but my nl says nothing to worry about the mri looks great and attatches the overview. lol part.. Inferior displacement of the Cellebelar Tnsills 9mm :?: Ok my original chiaria was a 5-6 mm the last mri showed I don't know one radiolo said nothing and the other said about 2mm of sagging so :shock: 9mm is everything looking great????

WOW this goes along with the hemo/onco saying well you arre positive for a cancer marker but that doesn't me we cN Say for sure you have cancer and we think you have aplastic anemia which would be caused by a cancer that we can't find but we need to do the nbonr marrow biopsy and even if we do you are a little out of the age range for a bone marrow transplant..But your counts looked good today and we are 99 percent sure it's not leukeimia.JUST WOW witht his whole system...
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Re: I hate my life

Postby chrisw » Thu Dec 09, 2010 10:00 pm

I am so sorry, you have been dealt 4 times more than any one normal person can handle. If I was in your shoes I probably would have committed myself by now. Do you have a support network you can lean on?

Huggs and huggs

Chris
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: I hate my life

Postby wendi » Fri Dec 10, 2010 8:47 am

Mary:

Sounds like you really need to try and make the January meeting. I posted in the other one about it. We moved it to 1/9/11 due to the Holiday. Try and come for some emotional support.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: I hate my life

Postby Cyborg Ninja » Fri Dec 10, 2010 9:33 pm

I'm sorry for your loss. I think you should take a break from reading your medical documentation because that is going to make you more depressed. Let your doctors handle it for now and try not to worry. You can read them later when you feel better.
DX: SM (idiopathic), Crohn's disease, Graves' disease, gallstones, scoliosis, anemia
Meds: tramadol, Asacol, Cymbalta, Synthroid, fish oil supplement, multivitamin
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Re: I hate my life

Postby tennesseewalker » Sat Dec 11, 2010 1:28 pm

Mary,

Dec. 9th is my Mommy's birthday too. She's been gone 6 years and would have been 80. I miss her every day. Hugs to you.

Mary
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: I hate my life

Postby mbgc1 » Sat Dec 11, 2010 2:33 pm

Thanks everyone...


If I had been up to it(i AM HONESTLY one big bruise and bunch of cuts that bleed) or could have afforded the gas I would have come to the
december meeting . I needed to be with people who wouldn't tell me to get over it or to second guess my Dr. LOL GEE when they have the IQ of a stringbean I have to second ]guess them, even in my mental state I can still count mm.


The loss of our house and most of our personal belongings hit hard especialy with Taylor. Hew autism makes any change hard.. So this was just over the top. Then with me either in the hospital or at the infusion center so often she has been in behavior overload !!!

This month has been hard for me since my dads death, actualy since my mothers but now with my dads death, and burial on my burthday, his birthday is on the 17 also along with the move the physical low point in my life, Christmas comming up?? I feel lost . I know everyone says its about who you are with yada yada, but. I only realy talk to my 2 nieces and my kids don't understand no christmas. My 16 year old should, bbut she has given up school and is doing cyber just to stay home and take care of her sister and drive me to the hospital whwn I" have siesures or pass out b/c of blood count and crack parts of my body open...She can be a royal ** but maybe she just had to grow yup too fast... The 4 year old?? Lord everyone tells her about santa comming on christmas. I got her rocks from the dollar store. Of course my24 year old will be ok and hell my d doesn't like ham so who knows what we will have.

I haden't eaten in 6 days wghen I posted the other day.. Great for someone with a compromised immune system.. Mu hemo onco has me on potasium, vit d and 3 others that I can't remember. He asked me if I was bulimic...

I am just grateful that I have internet for now so I can have the support of you guys..New adress diff cable co so until the bill comes I can keep it on lol
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Re: I hate my life

Postby wendi » Mon Dec 13, 2010 8:46 am

Hang in there Mary. You don't need gas to come here (ASAP) and you do have the internet, so I am glad you are reaching out here.

Is there a church nearby that you could seek help. You know I just donated some toys to Toys for tots. Get in contact with them for your 4 yr old. The marines collect tons of gifts and will even have something for your 16yr old. There is no shame in it since you are asking for the kids. Google Toys for tots, E, Stroudsburg, PA. At least the kids will get presents for Christmas.

Wendi
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: I hate my life

Postby jchebert1979 » Fri Dec 17, 2010 10:13 pm

As far as the herniation measurements go, do you have the MRI CD yourself. If an ignorant radiologist (and there are plenty) is drawing the line to measure the foramum magnum after a piece has been taken out then of course the measurement of the tonsils will be larger.

If you do have the CD you can measure it yourself. If you do, PM me and I will explain how.

FYI, my herniation was 8-10mm. After the decompression it measures 12-14mm because the bone that was removed to open the foramun magnum results in the angle of the horizontal line drawn to be higher. In turn, the measurement of the tonsils vertically will be larger however, it did not actually increase. It only looks that way because the starting points have changed. Hope this helps.
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