Life In The Turtles Pond

Out of control….

turtlesbirds — Thu, 16 Jun 2011 14:37:08 +0000

Iam spiraling and whirling out of control. I cant find the way out. My mind is suffering my thoughts are dark and gloomy. I want resolve and I want it now. I cant find the right things to say. My mind focuses on the bad energy and the pain and suffering of my little big one. I want him to be treated fairly and well. i dont want him suffering so. Im jacked up in my mind . Iam consumed by hate and pain. I want t find the man responsible for this pain and rip him apart with my bare hands. I dont like these thoughts but here they are. Ripping at me. Grinding my life to a hault. We are on stand by forever. waiting waiting waiting for how long? I wont know. Pain Pain Pain. Suffering each day goes by i ache, i hate, i feel. Worsening as we go day by day. No way to live. Everything is wrong. Each day is a pain to go thru. My stomach aches with each passing day its eating me alive. Stress filled hatred. My son has lost faith. Iam loosing faith in the medicine world. Why? WHY>? why the hell is this so hard?

Pissed off.. hurt and so many other words.

turtlesbirds — Wed, 15 Jun 2011 18:55:58 +0000

Dear Doctor Gupta,
Why is it ok for my son to go thru so much pain and suffering while you mill about with no care in the world to his pain? Why should we wait months for appts that dont matter? How can you put us thru this? when in the end you know exactly whats wrong with my son and what needs to be figured out. its surgery that needs to be done to fix him and his pain right now. why are we waiting? Why ruin his legs? waiting….. why ruin his back? …waiting….why have him suffer for waiting? Why does he have to sit in a wheelchair on dope waiting for you? When all were doing it passing the buck along too other docs for months with the same diagnosis. You know what it is do the surgery dammit do it now so he doesnt have to suffer in pain, so he can start school on time with his classmates and not loose five six months of school in the first year of high school. god your a dick. i cant wait to speak to you.

New beginings…. sad endings

turtlesbirds — Fri, 27 May 2011 17:33:11 +0000

Iam having a hard time with the passing of my child into high school. Its like wow high school already where did the time go?
We worked hard to get and keep him in school, with all of his needs the school fought hard and i even harder. it got rocky at times where I thought Id have to yank him out and home school him myself. Now hes moving onto the great big fat high school. Our high school is a really big campus for alot of kids in several towns. Weve already had one meeting and hes got a few advanced classes for his grade which is really awesome being how his track record went with the old school. Iam proud as hell. I just hope that this next phase in our lives goes smoothly.
I dont know if surgery will dampen his school year into high school. If they do surgery right away he might not miss any school. We shall see how it goes. I just dont know how UCSF works. How fast they do things.

Stronger no more..

turtlesbirds — Wed, 18 May 2011 13:36:53 +0000

I live by a saying You never know what strong is in till you dont have anything left but strength. Iam suddenly coming to the end of what I can handle.

Ive been struck by the stress monster and Id like to be released please.

For those of you who do not know my son was born with Spina Bifida with a side order of Tethered Cord Syndrome. Google these things if you dont know what Iam talking about.
Recently my son has been doing worse with his walking. More falling down episodes and just bold clumbsy all the way around, with really bad back pain to the point he cannot sit or lay or walk much at all. Hes in so much pain and crys often. Hes taking strong medication from the doctors to try to help with the pain but to no avail. This is something i had first thought of as JRA flare I thought his legs and knees were getting sore and swollen causing him to faulter so often .Then came the extreme back pain just in the spine. I didnt have to go far to think of what it could possibly be. WHy you ask? We’ve been here before.. It was a long time ago and times were different. He was showing signs in different locations like bladder and kidneys which are key points to look for with tethered cord syndrome. Changes in the bladder and bowels and kidneys along with gait issues…

Since his last surgery of the bladder and kidneys we lost the abillity to see changes in them. They made his bladder no longer a working muscle but more a container for urine with slack muscles that dont work like yours and ours do. No pressure to test anymore with Urodynamics. (special machine and tool for doctors to test pressures in the bladder and test for reflux into the kidneys) So we were too look for changes in gait and issues with his pain. I was in LaLa land with his new diagnosis of JRA that i surely thought it was atributed to that fr sure cause he was ding so well with his other issues SOOO well since the last surgery he was a total changed kid.. we forgot often he had any issues at all at times he was doing so well. Some of it could be accounted at my lack of wanting to SEE tethered cord since he was doing so well, if that makes sense.

I didnt want to see it. I never want to see it again. I hate it and everything it does. So yes Iam sure alot of my not seeing this clearly at the time was due to alot of denile. Opening my eyes now i see what i didnt want to see. Tethered Cord syndrome. Third tether. This scares the pants right off me. Its screaming in my face as my son is in so much pain. miserable poor baby. Nothing i can do can make it better. NOTHING!!!!!

Ive called in the big guns the NEUROSURGEON for appt asap and the soonest we can get in is June 6th, the absolute soonest is then at UCSF! Waiting for the diagnosis is almost pointless ive been here ive seen it before but it has to be said by the docs. Once seen by the docs which is going to be hard hard hard to test for. As i mentioned before in this post weve lost a tool (bladder and kidney pressure testing) to check for TCS weve also lost the MRI ability to see as hes had two major spinal cord surgerys and lipoma removal and relases f the tethered cord that is built up too much scar tissue to show anything but yuck on the MRI. The other tool to check for TCS

This is where the tricky part comes in. We need the right Neuro to see us. One who is keen on looking at signs the body shows and not digital imaging to determine TCS. he or she has to make a decision by looking at my son the way i see him now and make a diagnosis. Once the diagnosis is made were looking at only one option
SURGERY!

A tricky 9 , 11 , 13 hour microsurgery on my sons spinal cord and spine. Not only dangerous but we rick so much of what we have of his mobility. Everytime they go into the spinal cord like that you come out with damage they pray its only a little numbness in areas due to nerve dammage. but you als have a higher risk with paralization from the lesion down. His being lumbar region. So we wouldnt know if he can walk till after surgery, or feel in his legs.
We are talking a very long recovery, long and painful. Two weeks in hospital and a long recovery at home. Now Sully does very well , or has in the past, at speedy hospital recovery for the sheer fact he hates hospitals and will do anything to will himself to get out. So he makes himself well much faster. We often have seen him out in 9 t0 12 days in hospital. Which he strives for walking and moving and getting out of bed when he can to show the doctors hes well enough to go home.

Hospitals arent my fav place either. I get to stay with him bedside and sleep in a chair bed the whole time which is nice. Its going to be hard as it will be three hours away from my family. My husband and daughter all my critters. Trying to get everyone situated for a long hospital stay is hard to do. getting the work all dne for him t come home and getting everyone on the same page takes time and carefull consideration. Somedoctors dont give yu much time and some give you too much time to think and worry about surgery. I cant tell you which is better.. to be told asap or t be told we have to wait a month or two.

What stresses me out about this possible surgery is it will be at a hospital i do not know with a doctor i do not know or trust well like my last team i had with Kaiser. I loved and trusted all my specialists at kaiser with my sons life. Thats a hard thing to give up easy. Giving my sons life up to a doctor you dont know well. Being so far from home again for a long time is going to be hard. having everyone going back and forth on the roads to see us. The stress it puts on the family is great. Sister misses and loves her bro. Daddy panics cause he cant be there full time. Mommy panics cause she is there full time with no mental help from the hubby. worrying about everyones state of mind going thru this process. AHHHHH its hell..

All the time knowing my boy will be in dire pain. Iam glad to know that 90 percent of the hospital stay he doesnt remember thanks to good drugs in the iv. He doesnt stress hard about staying cause he knows he will forget it all in the long run which is a hell of a thing to do. What a strong little man he is.

SO anyhow this is just a few of my thoughts and sharing for the day. I cant do much more then be strong. and stay strong right now. and all i want to do is curl up and cry like a mommy can..

We are both down.. this isnt good…

turtlesbirds — Wed, 11 May 2011 13:18:55 +0000

Having both me and my son down at the same time in deep RA flare is just something i never want a repeat of again. Had to take my son into the docs yesterday and trying to get two people who could hardly walk to one place is terrible hard to do. sitting in the doctors chairs for any amount of time was killer. Took three hours to which both of our bodies said OH NO YOU DIDNT!!!!!!! and we were worse for the wear. Crying out in pain in public and stumbling along is just not something we sick folks want anyone to see of us. This is our private hell.

The “You dont look sick” club.

My heart is still breaking in two billion pieces as my son is having such a hard time. He is missing time away from his friends, which is something he needs so much. He wants to be “normal”
His video game is all that keeps him attached to the world when hes down and sick and the playstation network has been down a month. This enables him to play with online friends in real time on the game and tv in our livingroom.. It keeps him still talking with other kids and having a good time despite his pain and issues. I wish i could make the game work for him. Hes so lonely and isolated. He really needs the feel of other people in the world. Not just me and dad and sister and the critters in the house. We think we are great company but for a teenaged boy who doesnt feel good i think hed rather talk like a kid with peers and have fun in his own way.

Dear Playstation HURRY UP i know you have alot to do due to the major hacking you got but my by needs this……

ONline he isnt the sick kid. Online he doesnt have to explain to anybody why hes crying out in pain or not walking.
When he goes back to school the kids will either not ask him were hes been or they will and he has to say oh yeah ive been hella sick. HIS WHOLE life hes had to explain atleast to some degree on how sick he was. I think the kids just dont ask anymore which is sad also they dont call him when hes out they just say oh yeah hes gone must be sick again. Hes sick and gone so often from school its just common place anymore. and no one really gives a crap. His friends hardly knw whats wrong with him its hard to explain alot of his issues and when he tells them he has arthritis they call him an old man. they dont understand a thing about it. How can they i didnt knw hoow it affected peple f young ages specialy myself till i was diagnosed finaly after years of thinking iw as crazy and broken. How can i expect for anyone specially children to understand.

The invisable disease.

WHY GOD WHY!

turtlesbirds — Mon, 09 May 2011 14:16:03 +0000

I dont know what else i can do . My son is in a bad RA flare and in so much pain. His meds dont work hes so like me in that way. medicine doesnt work for us like it does other people. Hes very brave and strong and it just hurts so bad in my heart that i cant breath at all. Every second of his pain is like eternity to me. i wish i could take all his pain and take it deep inside me and away from him. I would gladly take it if for just a while would leave him alone.
Help i dont know what t do i cant take his pain away. My heart breaks. Hes finaly asleep at this moment. I took him to my bed last night and listen to him moan and writh in bed all night. wishing i could just stop his pain.
I will wait to call the doctor to see if there is anything he can do for him. givne him something to knock him out for the time being would be all i could hope for.

walking? not so much today

turtlesbirds — Fri, 29 Apr 2011 21:53:07 +0000

I woke up this morning not able to walk on my right hip and knee. so much pain i dunno whats going on. I dosed up with meds and hoped for the best but ended up in my room sleeping the day away as much as I could. Its the pits thats for sure.
I wish that someone could understand the horrible pain that is associated with RA when i say i hurt they just figure im whining or complaining. If i hear one more person to tell me to keep busy and get excersizing i will shoot them. or take some snake oil to make myself better. Take a walk everyday it will make you feel better. have you tryed yoga its supposed to do wonders. my sisters newphews uncle takes tylenol for his arthritis why cant you take that instead…..you take too many meds.. boy ive heard it all i can go on and on.

SCARED!!!!!

turtlesbirds — Thu, 31 Mar 2011 13:55:14 +0000

Having spoken with alot of others today iam finding iam over medicated for my ra. taking way too much mtx and not enough folic acid . Ive got to talk to my doc about it and fast. i dont want to get lymphoma cause im not taking enough folic acid with my mtx.
I have pain everyday but im having whats known as a giant flare right now. along with pain in every joint i have it seems i have chills, hot flashes swelling and redness in some joints.
Iam a big cry baby today not able to do this today. some days ive got the pain atleast to a controlable factor and today its just too high too bothersome and just plain owey. I feel like crap. i want to barf i have nausea and chills all at once. iim sweating and hot at the same time.. it just doesnt seem to leave me lone today.
No one seems to understand and im going to look forward to alot of eyerolling today from people whoo dont get it. oh shes complaining again. poor pityfull her.
yeah well intill you have a dibilitaing disease that attacks your whole body let me know how you feel MMMKAY

THIS IS HOW I FEEL….

im hurting sad upset and feel like crap.

Lack of understanding?

turtlesbirds — Tue, 29 Mar 2011 15:00:07 +0000

Ive been contemplating the state of my friends this past almost year. It seems Ive lost a few of my dear old time friends, some crashing to the ground with hate and horribleness, some just disappeared. WHY suddenly do people walk away from friends? I never have. I dont understand why ive been left behind. do we all suddenly grow out of friends weve had since we were 12 suddenly?
I realize that i dont have the life i once had and practically as homeward bound as I can be. ive changed only in my body. My mind is still the same. Are they afraid of who ive become? am i suddenly not enough cause i cant walk far? I just dont see what has happened. i dont feel as ive done anything to anyone. I have strong friend morals and alot of people i think of as family to me and they too are disappearing as time goes on. my phone no longer rings. my friends suddenly forget iam alive? well im still here. i havent moved in 11 years. ive got the same phone number and address. same email and now fb. i didnt go anywhere i couldnt have been found. doesnt seem anyone is looking for me tho. i know poor pityful me. but i desire to feel normal atleast with my friends. i want that closeness i once had. family tight as family. since i ave a screwed up family unit ive buillt a family out of long time friends. and they are letting me down. i feel they arent there anymore and what do i do>> cry about it.

I dont know what else i could have done to save these friendships. i call when i can , i write emails and messages that go unanswered. i know people re busy i give weeks before i even worry about an unanswered email. its not like i dont understand everyones real lives and what THEY do. I fully understand others lives. they go on daily with speed and precision. Mine goes painfully slow. I wish mine went faster like theirs. i wish i could pile too much on my plate and work thru it like in the olden days when i worked and had things to do daily.

i dunno what else i can do but whine and complain about it. ive lost some of the best people i knew. sad

Loss of friends

turtlesbirds — Tue, 01 Mar 2011 15:58:44 +0000

I dont know about you guys with RA but it seems that ive lost alot of friends since ive been sicker with RA. Since i can no longer do do do the things i used to my dear friends have passed me by.
No longer do i get calls from my best friends.
No longer am i on any party lists.
No longer do i get to make dinners for my friends.
I live far away from most of my best friends and we always have to plan trips to go to meet up with them. so far thiss\ past year not ONCE have i seen them. hardly spoke to them even. It hurts my feelings bad.

i wonder why ive been left behind. im still me inside this body that hurts. Iam still in need of friendship. even more now then ever. but alas left behind am i. I get really sad that i cant just go over and see them or call them up on the phone all the time.. they just dont seem to have time for me when i do call. or try to email or instant message. so far all my attempts have gone unnoticed. whattever i guess i just have to deal with myself and what friends i have left make that FRIEND, as in UNO. the only one who seems to still get that im a person inside.