| Amanda |
[Apr. 11th, 2008|08:50 pm] |
| [ | mood |
| |  crushed | ] |
I am sitting here with tears so so sorry to Greg and your loss. Strangely I thought I would be the first of us to die considering the 4 surgeries, 10 PICC line, 2 blood transfusions, yeast infection in my brain and the placement of 4 different types of feeding tubes sugically implanted in my stomach and now a massive blood clot that starts at my arm, up my neck into my brain, lung and heart. The final diagnosis SMA syndrome. My stomach is crushed between my Aorta and Superior mesiteric artery, too dangerous to fix so the surgeons in San Diego tried to undo my gastric bypass surgery (virtually impossible to undo)
No one has does it. The vascular surgeon said I would bleedout if they tried to fix it so they bypassed with another piece of intestine. I miss everyone so much and I am so sad about Amanda, she was a star and everyone loved her....Even when you hated her you loved her.
I miss so many of you and she reminds me that I do not have all the time in the world, none of us do.
Greg, you are in my thoughts |
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| Dying to be pretty |
[Jul. 30th, 2006|06:14 am] |
| [ | mood |
| | crushed | ] |
I am losing hope that this will never end as I have hit the 8 month mark and still no one knows what to do or what is wrong.
I have now gone to UCLA and after extensive testing, from massive amounts of blood work to ANOTHER glucose tolerance test, but this time they tested my blood every 15 minutes. My blood sugar jumped to 350 (normal is about 100- 140) then went down to anywhere from 60-70. After retching over and over for the first 30 minutes, I then actually passed out for about an hour. I remember very little of what was going on at first, only that I felt pain and saw someone leaving the little room I was laying down in. After a couple of hours I finally felt a little better, but then as each hour passed I began to get sicker and sicker till I started sweating, shaking, becoming more and more nauseated. I then started having problems thinking and even walking. Thank god that Douglas went with me because there would be no way I could drive an hour home.
From the results of that test, my own glucose testing at home sticking myself again and again with my little blood sugar monitor, all the other blood work, the endocrinologist said that she has no idea what is wrong. Only that she can not help because my blood sugar did not fall below 40, therefore there is nothing she knows what to do. She was very nice even telling me that "just because no one knows what is wrong, doesn't mean that there isn't anything. It just means that no one is smart enough to figure it out".
So now I have seen 2 endocrinologist, a rhuematologist, 4 dermatologist, a GI doctor, my gastric bypass surgeon, 2 allergist, my own primary care doc.
12 doctors.
12 doctors that have no idea what is wrong. Being told that I might have an ulcer, a stricture, diabetes, pancreatic cancer, Sweet syndrome, a brain tumor, Angry skin syndrome, refractory hypoglycemia, an autoimmune disease, breast cancer, and of course that I am just imagining this.
And still no diagnosis.
Didn't these people go to medical school? All I can think is that you can take the organs of a dead person and put it in someone else and they can live. They can even remove your heart and hook you up to this pump that does the work for it. They can cure cancer, save a 1 pound baby, separate twins that are joined at the head, and remove half your brain...But no one knows what this is?
I am beyond devastated. I am starting to believe I will never get better and after a fight Douglas, he too told me that he thinks that there is no hope. God no hope. I am so tired of doctors, pills, painful tests, all for nothing..... Nothing.
I feel like I am adrift in the ocean, dying from thirst without a drop to drink. As far as the eye can see is water and yet I can not take a drink. All I want to do is dive in and drown, but I know I can't. So I sit and sit and sit staring at water I can not drink.
The worst part of all this is that there are millions of sites on how and where to get your gastric bypass, but almost nothing on how to reverse it. The best doctor I have found is in New York and his site goes on to say how difficult it is to reverse this, almost impossible. Fuck. And the more doctors and medical personal I speak to, the more I am hearing how many people are becoming sick because of this gastric bypass.
God what have I done to myself? What have I let doctors do to me? Yes I am thin, but the cost was my life. Oh what vanity will do to you. And all I am asking at this point is just a diagnosis, just a name to what is wrong. If there is a name then I can know where to go, what medication to take, what operation to have, what doctor to see, but I have none of that. All I have is "I don't know, go somewhere else"
So now I have you, my computer. And even though I can no longer sit here but for a few minutes, I can do and say the things I can not say aloud. Now I can sit here in the dark typing out all the things I want to scream, but can't. Sit here in the dark and cry. Sit here in the dark not having to pretend everything is fine and that "Mommy's just a little sleepy". My life is destroyed by this gastric bypass surgery and like a sinking ship I am taking Douglas, Aedan and my little Zoe all down with me and it's not fair. Not fair to them. Not fair to me.
But then again who ever said life was fair. |
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| A ghost |
[Jul. 16th, 2006|07:34 am] |
| [ | mood |
| |  nostalgic | ] |
I feel like I have become a ghost..... a memory of someone, a memory of someone that people knew; a funny, hyper and yes somewhat spacey girl, willing a daring to make a fool out of myself not to be cool, just to have fun and to be funny as well. Each day I feel that I become less and less of myself. The memory of someone I used to be.
I have cut myself off from society, I have been so tired, sick and depressed. Sinking deper and deeper into a hole that I don't know how to get out. I am lost. And now even my own family has cut me out. Not a single person said a thing on to me on my birthday. No one. Not even Douglas'. Douglas and Aedan and Zoe bought me a cake that I had to pretend to eat because I don't want the kids to know that I am really too sick to eat it. They don't deserve it. Fuck I don't deserve it either.
I have become a ghost, but god I hope a happy one... a happy memory.
I try to tell the kids how wonderful it was when they were born. How Aedan had a funny cone head and Zoe looked like a tiny doll. After almost 12 hours of labor with no meds he was born and the nurse looked at me with glee in her eyes and said "Oh look he was born at 7:26 PM on 7/26." I just looked at her blankly, having not a clue what weird language she was speaking. Which today still cracks me up because it actually helps me remember when his birthday is. My first words to him were "Hi there baby, you look like you had a hard day," and I held him in my arms and said "I had a hard day too." Then they took him away and his father went with him. My last look of him was that he was blue and I thought I would die. For an hour I layed there alone not knowing if he lived or died, then suddenly like a gift he came back looking beautiful and with a little hat to cover his pointy head.
And then Zoe, the epidural actually worked so the agony of "natural childbirth by mistake" didn't happen and just layed there and watched the movie 'French Kiss', which I notice neither Douglas nor I can not seem to change the channel if it suddenly comes on tv, no matter what time of day. We call it Zoe's movie. The doctor came in and said it's baby time and I had no idea (God do I love epidurals) She was 2 pounds smaller at a little over 6 lbs. and my first thought was that she had Douglas' butt chin and I had to laugh. I didn't know, I guess I assumed she would have mine, or babies didn't have cleft chins, like they develope them later. Yes all silly thoughts, but after you have a baby I think you can have silly thoughts. She was born on St. Patrick's day and we joked that she would never have to buy herself a beer when out on St, Patty's day. I used to find that funny, hmmm..... not so much now.
I don't have much stories of when I was a baby. I don't know anything about my childhood, my family, what my great grandfather's name is, or even where my mother was born, where she traveled, basically nothing about her life. I have pictures of relatives that are all strangers. I want them to mean something to me, but I know nothing. I have no family. And what few I have are truly gone; Erin sentenced to 2 years in prison, my brother didn't even call to see if I lived through the surgery that could have left me a quad. My dad has never called me. Not ever.
I don't want that to be me. I don't want my kids not to know what wonderful babies they were, what beautiful kids they are and how much I cherished and loved them.
I think I might need another operation. My 4th in 4 years to possibly reverse my gastric bypass surgery, or to cut out part of my intestine. The doctors at UCLA are guessing that I could have "Late Dumping syndrome" or "Bowel bypass dermatirtis arthris syndrome" or "Angry skin syndrome" or the gastric bypass surgery has "desrtoyed my pancreas" or I have some form of "pancreatic cancer" or a "pituiatry tumor" or something not known since I am the 2nd person at UCLA that has shown up with this problem.
The SECOND person.
I have been nauseous and sick every day for 7 months, I don't know how much longer I can do this. I don't want to disapear. I don't want to be a ghost, not yet
Not yet. |
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| An apple a day..... |
[Mar. 1st, 2006|11:41 am] |
| [ | mood |
| |  anxious | ] |
Well I guess when my doc wants something done 'NOW' everybody jumps. My CT scan has been changed to Thrs and my endoscopy is today in 20 minutes. In Dr. Lee's office he kept asking his secretary if this week was open and she said no, he asked about the following week and she said no, then she reminded him that he has to have the anesthesiologist free to do it too since I need to be fully under and not just sedated. He shrugged said "Ill talk to him" and went back to his office as she starts giving me all the details for the CT.
Got a phone call yesterday and everything has been rearranged. So now at noon I go in for Test #1 endoscopy, nothing to eat or drink past midnight so I shoved my face full of food and water at 11:45 last night. This is the 3rd I have had and even though I know it's not a big deal, I know I can do this and compared to many of the other medical crap I've had to do this is a walk in the park, but I just can't help being nervous. I worry that like the first one that I won't be sedated, gagging on and on, crying for 15 mins with a hose down my throat and him ripping parts of my stomach ulcer out for a biopsy. Needless to say I have never gone back to him. My new doc is this little Asian guy in his early 30's, he's cute, smart, willing to listen to me and actually take this seriously. I want to just put him in my pocket and carry him around town.
This is my third one so I know it won't kill me and everything should go just fine, but regardless of all my bravado, making it not a big deal for the kids and especially Douglas. I am still scared out of my mind for these next 2 days. But I have the best support from WONDERFUL hubby who got grandma to watch Zoe for a couple hours so he can be there with me and hold my hand. I can not think of many men that would stay in a situation like this: Autistic kid, shy little girl, wife constantly ill with a bunch of creepy thing one after another.
It's humiliating to be in my 30's and yet feel like I'm older than my 74 year old dad. Douglas teases me that I am an "Indoor" breed and he will be there with me today. He is a wonderful man and I am grateful for everyday I have him, everything he does for me and both kids and the love he shows as he will stay up with me all night because I am sick or just plain old burned out of all this. I just want to be done and if I NEVER see a doctor again I would be happy.
Maybe I should start investing in apples |
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| Waiting.......for something |
[Feb. 27th, 2006|11:45 pm] |
| [ | mood |
| | scared | ] |
I FINALLY had a gastro doc appointment today (only had to wait a month to find anyone at all that would look at me) and he ordered tons of blood work, then everyone's and my favorite; an endoscopy in the hospital to see what the hell is going on, an ulcer? a stricture? a small toder dwarf? And who doesn't want a garden hose shoved down their throat for 20 minutes as they look and biopsy parts of the stomach. Good times. But now he says I need a CT scan of my abdomen this Wens. to look at the other parts not visible during an endoscopy
I have to drink 3 HUGE bottles of radioactive liquid in an hour. It's about the size of a LARGE Starbucks Mochachino that you get at 7-11. I can't eat all day then I drink one at 2pm another at 2:30pm. Then when I get there for the test at 3pm they will make me drink ANOTHER one. Holy shit, how the hell is my ity bity stomach going to hold all that? It's called SCAN C Barium sulfate suspension (750 ml per bottle) It's radioactive and along with getting an IV where they will give me more radioactive stuff to look through all my stomach, intenstines, kidney's bladder, pancrease, liver and all the other cool stuff that's in there.....
But not the gallbladder, because I had that fucker removed 2 years ago. Woohoo! I am gallbladderless :)
** I honestly have to admit that this is pretty fucking freaky even for me **
But this has been going on 6 weeks. Six weeks of stomach pain, cold, sweaty, and clamy, burping constantly and the worst is the nausea and retching over and over. I get a little better then worse. Pretty sucky. The icing on the cake is the 3 anti nausea meds I have suck.
** Med #1 (Reglan) has made me have a side effect I NEVER thought possible and shocking, just fucking shocking. It turns out that is a medication they give adoptive mothers that want to try and breast feed. ...What?!? NO THANKS!
** Medication # 2 (Compazine) caused a horrible side effect called something like "Extra parietal side effects" where my teeth began to clench so tight I couldn't stop it. I thought I was going nuts because no matter what, I could NOT unclench my teeth. I put a wash cloth in my mouth, paper towel, my finger having no idea why I could no longer open my mouth and my teeth ground together so tight for hours and hours that I broke off 2 teeth. Hmmm... I think I could have used those two.
** Anti nausea medication 3 (Tigan) I am now allergic to and have broken out in a large rash on my chest and arms. Compared to side effect one and now side effect two. I think I'll take the rash.
He is rushing me into all this as soon as he can, calling the ansethiologist himself to work out a time ASAP. And now I have this horrible fear, thinking .... am I really THIS sick? Am I just being a big baby and overly dramatic? Did I do it to myself by eating the wrong foods or could my addiction to crack.... ok M&M's do it? Do I need more water, more fiber, Tums, something I am doing wrong, anything? Should I suck it up and keep going with life and somehow this will blow over or I'll have something else to think about? I have felt like a prisoner of my house for 6 weeks now and I hate it so much, but it's pretty hard going out when your shaking uncontrollably, clamy, and retching for hours at a time.
I am scared. Just so scared. Scared they will find nothing and brush me off like some hypochondriac drama queen, but then there is the other side that thinks what if they do find something? What then? I can't have another operation. In 3 years I've had bypass surgery, 2 endoscopies, 2 steroid spinal epidurals, 5 MRI, 6 X-rays, spinal fusion of my neck, and to add to the long list another endoscopy and biopsy and CT scan. I think it's someone else's turn to get sick for awhile so I can take a break.
Any takers???
I am trying to just brush it off, thinking that maybe it was the coating to some large M&M that didn't come off or an optical alusion..... Or maybe it IS blood. What do I do now?
I am only 34 and I feel like I am 94. I am damned if they don't find anything to stop this...... and damned if they do. And worst yet I'm just so scared. I feel like I am always scared something horrible is going to happen to me and then it does. I'm just so, so, soooooo fucking tired of being sick. Being scared. Waiting to die. |
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| The Bitch Is On (aka baaaarrrrfffff) |
[Feb. 17th, 2006|04:14 am] |
| [ | mood |
| |  bitchy | ] |
Sick....sick....sick.....
This seems to be my lot in life. My 'Legacy'. SICK.
Because of my degenerative disc diesease I take pills on a stomach the size of my thumb, which I think has eaten away the lining AGAIN. My stomach hurts constantly, I am nauseous all the time, I get the chills, then am sweaty and have to change clothes because I start to get so cold and shake once again.
I know I take a ton of pills so I have been stopping them one at a time thinking this time I'll fix it, this time I'll finally be OK, till I am only on my pain patch (yeah for something not by mouth), Nexxium, and an occasional muscle relaxer. Nothing else for pain, nothing else for my mood, nothing else for sleep, and I have added over the counter Pepcid AC, which I take 3 times a day, Tums, which I eat an entire bottle (yes that is 94 pills ) every 2 days and am trying Benadryl as an acid stopper (taking somewhere around 24 every 2 days too). All the while I force feed myself ritz or saltine crackers so my stomach isn't empty and digesting itself and gaging on each disgusting bite.
This is not the life I want to live, this was not the life I planned on living. And now one (or more, who knows) of the three nausea meds is causing lock jaw where my teeth clentch uncontrollably so hard that I have broken 2 because I could not unclentch my mouth. I thought I was going completelty insane till Douglas looked up the side effects of them and all 3 can cause it. While one is now starting to give me a rash (most likely the Tigan, the only not oral medication) So then it comes down to how do you take a pill when your stomach is in knots and I suffer and fight to keep it down.
This past month I thought that maybe this was all a fluke because I get nauseous every now and again since the surgery. Then maybe I was having an allergic reaction to 'something' because I broke out in a REALLY bad rash a couple weeks ago, so I stopped everything, even my pills for pain hoping that would be the magic bullet, and on and on it goes. Then strangely I noticed a pattern, first I would get cold and clammy Thrs. night, then Friday sweaty, shaky, and dry heaves till I could no longer get up off the floor, Sat still weak and shaky, looking for a rock to die under, then Sun I would be able to eat a couple bites of yogurt and then slowly get better. Still feel like shit, but not like I have to go into the ER. Then it happened again and now again and this makes week 4. I can't sleep so I pace and pace and shake and get into bed then out, hot/cold/hot/cold. I kept asking Douglas HOW can this keep happening again and again in a strange pattern till he spent hours on line and looked up what was most likely happening. Since I am allergic to 'something' I would dose myself up with tons of Benadryl, but as the weekend got closer I would slow down because I have games to go, friends to see, children to play with and a fucking life to live. I can't even walk straight on all this Benadryl, which helps blocks acid from a certain type of bacterial ulcer.
Then last Sat, I can't even say how absolutely heartbroken last weekend was. I was showered, packed and all my 'special' item cards (in order of importance first of course) in my jacket pocket ready to go to the game and get out of the house for the first time in a month. A MONTH. Sure I was totally sloshed on Benadryl and Tums and pepcid, but I didn't care because for a couple hours I didn't have to be Lydia anymore, just a couple hours I could be someone not in constant pain, a person that get's to have one night of fun, that's all. Then 5 PM, I started to shake and get sweaty and it was starting all over again. I had Douglas call Frank to cancel my ride because all I could do was just want to cry and couldn't. No game AGAIN, no life AGAIN, NOTHING AGAIN... and why.... because I'm sick.
I hate my life, fuck who am I kidding I have NO life. I lay on the couch waiting to have dry heaves for hours on end. I do nothing, I go no where and I get to eat non fat yogurt, bananas, crckers, and water. At least I FINALLY have an appointment with my GI doc this monday, but it's not like he can do anything then either. I'll have to schedule an endoscopy and reserve an OR in a hospital with a huge team of specialists and anesthiologists because now I have been labeled "Medically fragile". There he will stick a gardenhose down my throat to my stomach and *hope* they find something to fix, biopsy, medicate, or just tell me I am not imagining things and being a big baby.
This was not how this was suppose to end. I was suppose to be fat and miserable have an increadibly painful surgery and starve for a year so much so that my hair fell out and I had to have a second abdominal operation to remove my gallbladder because I had lost so much so fast, then all would be well and happy and I could skip around in my little size 5 pants. A size I didn't even wear in high school, but instead I have turned into this horrible bitter, bitchy monster that would rather die than continue living in this much pain. The surgeon even told me at the begining of all this the surgery is virtually irreverasable and since Aedan saw some "health" movie last year about how some 90 year old man died of an ulcer I can't say anything around him because he's already afraid that someone is going to come into his room at night to stab him and Zoe thinks because my mom died when Erin was only 7 that I will die when she turns 7 so I have to smile as I run into the bathroom trying to hide from her too, which since I passed out last night on the bathroom floor I don't think I did such a good job.
Well I could go on and on bitching FOREVER, but I guess I'll stop for now. Just you all wait, some day I'll write a happy LJ post then maybe I'll even change my picture from my tumbstone too...
Ah fuck who am I kidding. |
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| Beanie Bear |
[Jan. 27th, 2006|01:33 pm] |
| [ | mood |
| |  ecstatic | ] |
My baby was saved!!!!
I can not put it into words the absolute heartache of last week, then the joy of having Lola back. She was diagnosed with pancreantitist, a almost fatal disease because no human or animal can live without one. The pancreas helps in the digestion of sugar and fat and many people whose pancreases hasn't work too well will have diabetes. But when it's not working at all and is inflamed your are screwed. Plus after you lose your pancreases then your liver starts dying as well. You must have BOTH these organs to live no matter what and if not then you die. And that is what happened with her.
We brought her to the vet almost 2 weeks ago because she was walking around and just looked so sad. Her tail between her legs and suddenly shaking off and on. The vet ran a complete blood work and her pancreases enzymes were through the roof and so was her liver enzymes. She was in BIG trouble. We spent 200 dollars for the visit, the blood tests and the some antibiotics. We were told to fast her for 24 hours. No food, no water...Nothing. So her pancreases did not have to work, even a sip of water could kill her.
She started to seem like she was doing better, we slowly introduced a little water and small little meals 3 times a day. We thought we were doing so good, then the next week it was back, BIG TIME. I called the vet asking what we should do and why was she shaking so much. He said it was because she was in SO much pain and the only way to save her was to send her back where they would run all the blood tests again, give her an ultrasound of her pancreases then put her in the hospital where she would be starved for days and have only an IV to keep her hydrated.
The cost....... 2,000 dollars
Oh my fucking god! I tried to explain that we had LITTERALLY spent all our food money that was left for January on that first visit and there was no way in hell we could come up with 2,000 dollars, no way did we have that money. He said she had to fast for 4 to 5 days and when I cried on the phone begging on my hands and knees pleading with him for help and he couldn't care less. How could someone be so cruel and my little puppy was going to die starved in excruciating pain. I asked how long can she live like this, I mean people can only live about 5 days with no water how could a 6 pound dog do it? And he told me she has about another 24-48 hours, we were on 36 hours and so she would die the next day.
She would die because I am too poor to save her. I have not cried like that since my mom killed herself.
We talked about selling our one car that doesn't work, we talked about selling the jewelry that my mom left me, I talked about selling my wedding ring. And what was one of the worst part was I do not have A SINGLE fucking person in my family that would help. I don't have a single one that would give me a glass of water if I was dying in the desert. My baby would die because I am too poor to save her. And my baby was going to die in pain.
I made her a little bed right next to me, all snuggled up on my own pillow and opened the window so she could see outside. I just held her and cried and cried thinking that my puppy was dying and she couldn't stop shaking. I tried to get her to sleep because then she wouldn't hurt so much, but she couldn't. We searched the Internet looking to possibly treating her at home and maybe even being able to use one of my pain patch. I called the vet again and he said if I used it on her that it would kill her and my thoughts were she was going to die anyways and I couldn't let her die alone in pain. I would rather give it to her and she could go to sleep in my arms and pass away.
Then I got up wiped the tears and snot from my face and just started calling around from vet to vet and animal hospital to see how we treat this at home till one vet said that she could go there and have a free visit and maybe they could say something else. At that point I was so desperate I would do anything. We went to Garden Grove vet/hospital with her last lab work and the vet looked at her and said that it does seem to be pancreantitst and that she was already severely dehydrated. He also told us that the first visit is free and also that she could stay the night there for free while we figure something out and they could keep a good eye on her. He told us that yes she has to fast for another 4 day. Then there was the cost of the IVs, hospital stay, cone thingy, medicines and x-ray and more blood work. The total cost 600 dollars.
Fuck
Then like a beacon of light Douglas' mom, Linda let us use her American express card. Yes we would have to pay the total the first of February which suck , but all I could think was would I rather eat or would I rather have my dog. Would I rather have gas money to go to a game, to get out of the house, to do anything at all this month...or would I rather have my Beanie Bear (Aedan made up that nick name) The choice was very easy.
After what felt like forever we finally got to pick her up and I was shocked at how she looked. She went from a little 6 pound dog to a barely 4 pound one. She is literally skin and bones and that first night home she could barely walk. I naively thought it would be like that last time she had this in August, she would be sick, go to the hospital and come home all bright and cheery.
So now she has to be fed tiny amounts of her special I/D diet, a low fat dog diet that would make her pancreases not have to work so hard to digest it. She has an antacid she gets 30 minutes before her morning feeding and antibiotics every 12 hours. She still shakes in pain every time she eats and I know she is so hungry as she follows me to the fridge looking at me like I am going to feed her, but I can't. She can never ever have a single thing, but her low fat dog food. But on the plus side she loves it. It's turkey and rice and I don't think it reeks like wet cat food, which to me is a barf!
The vet said that she would still be very sick for the following week. She would still be in pain and it is still touch and go. She is always at my side even when I don't want her to be. She needs to rest and save her strength, plus she desperately needs to put some meat on her bones. I can not express my gratitude not only to the best vet ever, but also for my mother in law. Yes we will be eating from the 99 cent store and only go places that doesn't take any gas, doing allot of walking and hanging around the house..... but my furry Lolita-chickita-banana-puppy-uppers-Beanie-Bear is here, alive, wagging her tail and sleeping on my pillow every time I get up. I could not be happier.
My baby is alive and that is all that matters!!!!!! |
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| My Lola |
[Jan. 18th, 2006|11:20 am] |
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My dog is going to die. Oh god I want to die too. It never ends, it never ever ever ends. I think I am cursed and everyone around me suffers not to mention myself too. Oh god what am I going to do, I just want to lay down next to her and die too. Oh my god oh my god. |
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| Doing the medication shuffle |
[Jan. 13th, 2006|03:08 am] |
| [ | mood |
| |  hopeful | ] |
So we went to see Aedan's psychiatrist, Dr. Young. Wow I forgot what a great doctor he is.
Now we are going to try weaning him off his Paxil, which has to be done VERY slowly because it could cause withdrawls so he is being very cautious and doing it over a month from 25mg to 12.5mg and slowly starting him on Zoloft. He told us that Zoloft causes less weight gain, which last year him being on both Paxil and Abilify caused him to gain 50 pounds in a year. He was lucky that he was such a skinny boy that it didn't make a huge difference, but there is no way he could gain that much again without him being obese. And Zoloft is suppose to help with OCD compulsions, which he doesn't have very many and it's more like tics, but he is getting to the age where his strange behavior is being noticed by his peers and of course being teased and picked on. Man I forgot how mean little kids can be.
Next we are going to take him off the Abilify, which worked wonders with him and onto a new drug called Geodon. The Abilify helped him sleep, he started coming out of his dark room and the best thing was that he started hugging me. He started wanting to be with people and he finally wanted affection, which to me was a miracle drug. However the weight gain was a HUGE problem. I told Dr. Young that I would much rather have a fat kid that would hug me over a little skinny kid in the dark any day and Dr. Young smiled and said what a wonderful statement.
Geodon is supposed to be the new antipsychotic (although Aedan was never psychotic and the use is more "off label") that causes the least amount of weight gain, but before he can try it he has to have a EKG before and then after he is on it to check for any changes in his heart beats.
Crap, more fucking tests.
But is that's what we have to do then we will. Since he has grown so much the Abilify isn't working like it did in the beginning. He is slowly becoming less affectionate, not playing well with other kids and becoming less cooperative, refusing to do his school work. I am crossing my fingers that this new medication will help, but if not then we'll go back to Abilify and increase the dosage.
Because I would rather have a fat kid that gave me hugs then a little skinny one in the dark. I pray it will work, geez this poor little boy just needs a break. I think we ALL need a little break.
So wish us luck. |
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| Ohhh.... the little Catholic school girl |
[Jan. 10th, 2006|03:45 am] |
| [ | mood |
| |  amused | ] |
I have absolutely NO idea of what this quiz is talking about. I mean sure I think we can all relate to summoning zommbies to follow us. They are after all our minions. Too True. But you know what, it doesn't matter what sort of comic, anime, video game, it comes from, so long as I get to dress like a Chatolic school girl and let my inner evil show.
Which MegaTokyo Character are You?
brought to you by Quizilla |
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| My inner monkey |
[Jan. 9th, 2006|03:39 pm] |
| [ | mood |
| | ecstatic | ] |
Round one: I just got the report from Aedan's neurologist stating that his MRI came back normal
His shaking hands have been diagnoised as a "Essential Tremor", that could be caused by his medication or plain old 'unknown origin'. So tomorrow we are off the his psychiatrist to talk about possibly switching his medication or trying another new med that would stop it. But for now we no longer have to worry about there being anything in his brain that shouldn't be.
*running around the house like a monkey*
Now onto round two: I went to see my surgeon about my numb hand and arm, scared that my spine had gone evil once again. He told me that I had injured my radial nerve and that it would heal in a couple weeks. It's not completly gone, but it is much better.
*doing my happy dance while running around the house like a monkey*
And last, but not least round three: the bones in my neck have fused and I am free at last. Free at last. No more horrible collar, no more staring straight ahead, I can drive, start physical therapy, look down at my feet. Woohoo!!!
*wiggling and jiggling my head, while doing my happy dance and running around the house like a monkey* |
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| The Long Day |
[Dec. 27th, 2005|03:30 am] |
| [ | mood |
| | nervous | ] |
The Day that I have longed feared is here at last and I just don't want it to be.
I don't want to do this, but more importantly I don't want Aedan to have to do this. I feel nauseous, scared, utterly exhausted and yet I can't sleep. It is now past 3 AM and I have to get up by 5 AM and I absolutely don't know what to do with myself. I wander from room to room, checking off my list for things to do and what to bring with us, and making sure everything's in order. Checking the things I have already checked on 10 times before.
This whole thing is so unfair, just so god damn unfair I want to scream, yet I know if I do I will never stop. The worst part is that I honestly have no one to be mad at. If I did I think I would start hitting him and never, ever stop. Aedan is only 11 and his life is already SO hard. Just so god damn fucking hard that unless you have been to the debts of hell, I don't know if you could ever imagine his pain. And now worse yet he too realizes that there is something wrong with himself too and also the possibilty of something far more sinister lurking as well.
How can I smile when all I want to do is cry? How do I act like it's no big deal when this one simple test could shatter our lives forever? How can I send him off with a smile when I just want to curl up in a ball and cry like a baby, wishing to god that it was me. I want it to be me and not him that suffers.
Oh God why can't it be me????? WHY????
But I can't cry, not when he is around. He is terrified and I have to be his rock, "The Mommy" here. I promised that I would hold his hand when he falls asleep and be there holding it when he wakes. I have to be strong for him, not showing him a glimpse of my fear, my own pain. There joking around, bringing his little tiger he likes to sleep with. I know I HAVE to sleep tonight and it's going to be the longest day of my life....but I can't. All I can do is sit holding his tiger crying.
This could very turn out to be the worst day of my life. |
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| Speaking the truth |
[Dec. 20th, 2005|12:07 pm] |
| [ | mood |
| |  apathetic | ] |
The hard and truly painful part is that she is speaking the truth.
I know she is as over worked and frustrated like the rest of us because she is the only person that will watch the kids as I go to 2 to 3 doctor's a week. I can't expose the kids to what is REALLY happening, they are too little and don't deserve the stress. She is also the only one that we can borrow money from again and again and she is barely keeping her own head above water.
It's just that I had so many things planned for this week, shopping, going to see Santa (which of course I had to ask her for the 11 $ to get a picture of them) shopping for all the fun little stocking stuffers and now it's all ruined AGAIN.... because of me.
Yes I can say it's not like I did all this on purpose, but regardless it's still my fault. And to be honest if I were her I would be pretty damn miffed if my son had to play nurse maid for months and months on end.
It hurts because it's the truth and sometimes the truth is a painful thing. |
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| Babysitting |
[Dec. 19th, 2005|03:25 pm] |
| [ | mood |
| | crushed | ] |
I was talking to my mother-in-law and mentioned that in January Douglas will be getting a job and that I will just have to drive Zoe to school then come home and lie down till I had to pick her up. She looked at me like she was going to laugh for a second and said how could that ever work with the way your arm is now? And that won't be possible if he has to BABYSIT you again. No one is going to let him work from home you know. The disdain so apparent in her voice.
Babysit me again.
wow that hurt. |
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| Here we go |
[Dec. 19th, 2005|09:01 am] |
| [ | mood |
| |  depressed | ] |
My entire right arm is numb now. I left a message for my surgeon, bu know that he is in surgery all day so no one will get back to me till tomorrow. This is going to be a very long wait. |
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| Back and to the left |
[Dec. 18th, 2005|09:27 pm] |
| [ | mood |
| | crushed | ] |
My right hand is numb and I am having problems moving it. I am in such shock that I can't even cry. This is how it began last time.
Just shoot me. |
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| My brain tumor is named Medicare |
[Dec. 14th, 2005|12:45 am] |
| [ | mood |
| |  aggravated | ] |
Medicare, what a fucking nightmare! I have to pick some drug plan out of 80 or so out there by Jan 1st or the government will put me on any old one they want. What the hell is that about. The government and all the stupid little commercials on TV all say it will save all us poor old disabled people money, but what a crock of shit! I get all my prescriptions for free and even with the best plan out there including support from SSA it will cost me at least 5 dollars per prescription. You might think that's not much, but when you are on 24, YES that was 24 different medications that is going to add up pretty damn fast.
So how am I saving money?
Good question, I won't be.
And I found out yesterday the government, as benevolent as it is, has already signed me up with Pacificare and only half of my meds will be covered for only a mere 650$ per month. I almost swallowed my tongue. I told them that most of my doctors won't take a HMO, most importantly my Pain Specialist and Surgeon don't and they are the main people I see. Oh shit who am I kidding they are the only people I see. I filled out some thing online and I just hope that it works out, cause I have no idea what to do, who to go to, which one to pick, and actually calling the Medicare line is a joke, because they don't know anything either. If I want to know about a certain type of 'plan' then I have to call each one individually, ALL 80 of them to find out any information.
Oh and the best part of this whole "prescription benefits" is that you can only change ONCE a year. ONCE. Geez I hope I don't fuck up.
*BOOM*
That was the sound of my brain hitting the screen |
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| uh-oh I've been bad |
[Dec. 8th, 2005|08:40 am] |
| [ | mood |
| | amused | ] |
 Dear Santa...
Dear Santa,
This year I've been busy!
Last Monday I put gum in ![[info]](http://l-stat.livejournal.com/img/userinfo.gif) sylntknght's hair (-12 points). In May I ruled Asscrackistan as a cruel and heartless dictator (-700 points). In June I broke alicia327's X-Box (-12 points). In July moonpie082 and I robbed a bank (-50 points). In March I punched kalvelis in the arm (-10 points).
Overall, I've been naughty (-784 points). For Christmas I deserve a moldy sandwich!
Sincerely,
hell_okitty |
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| Another 6 weeks |
[Nov. 21st, 2005|01:07 pm] |
| [ | mood |
| |  numb | ] |
Another 6 weeks.
The surgeon's assistant said another 6 weeks of this, the collar, the pain, the steroid shots because of the collar, no moving my neck, no driving, no lifting, no stretching, the medications; tons and tons of medications, no doing anything as I lay on a wedge staring blankly in a drugged haze, watching another repeat of Law and Order and have I mentioned another 6 weeks of pain.
I know it's not his fault, the bones are not fused and there is nothing he can do about it. The physician's assistant told me he has never had a patient that had severe trigger points or swollen, black and blue spine because of the collar. Never. How is that possible? I am not 72, they only fused 1 level, they all made this sound like I would have to wear this collar and have no life for just 6 weeks, not OVER 3 months and life would go on.
I told him my husband has to go back to work, that we can not live any more, I mean REALLY can't and he got this nasty attitude letting me know that I was the one that had to have the surgery after all and that if I don't wear the collar then it won't fuse and a 2nd surgery will have a worse out come.
All I can think is who the hell has a maid to do everything for 3 1/2 months? Who has a chauffeur to drive them for 3 1/2 months? A nanny for the kids? Who can take this much loneliness, drug induced coma, boredom and pain for 3 1/2 months?
Not me. |
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