Pieces of my life. These are snippets of entries I put on a support group site. You can see some ups and downs. As you call can tell, I have no shame about sharing my life with you all. Maybe you can understand me some more. Do not judge my grammar and spelling. These are all just snippets I am sharing with you from honest to god entries I put on a TBI support group site. None of you ever see this side of me at all....so welcome to a big part of my world. And this is by no means all of it. I will save you some of the suffering of having to read it all. Actually I am just covering my ass, there are some things you all are not allowed to know about me. :) I have second guessed myself if I should post this, but hell. Since the scramble I have been mostly balls to the wall alot! So here goes nothing.............
April(6 months post accident)
I never really did doctors before my TBI and now I see all sorts monthly I am sure most of us feel this way, but I cannot bloody wait to be "normal" again. Well as "normal" as I can be.
I love my neurosurgeon!!! yeah he is easy on the eyes, LOL, but I love how real he treats me. Like a human being and not just a patient. Also love that he calls me super star!! That boosts the ego for sure. And that is needed some days.
perpetual eye twitch is ok since all the nerves are still trying to heal. After all I did have to have 2 different kinds of brain surgeries so of course there is some damage. I have been very patient so far, but I sometimes I catch myself. I am like "It has been 6 months I should be all ok now!!" I know that is silly, but sometimes I have hope that I should be all "normal" by now.
Thursday I have to have an EMG to check for possible nerve damage. I get wicked tingles in my right leg and some numbness. My neurosurgeon reassured me that if I need another surgery he can do it. UGH...the things I do to see a good looking man. LOL. In all honesty, yeah I joke about my situation just to help myself. I gotta joke.
Sometimes I am just overwhelmed and feel like I need to doi too much. I try to be like my old self. I have to stop doing that. I need to learn the new me and love the new me. I just get so frustrated with my downfalls.
And this dis-inhibition, while amusing to some, is going to get me in trouble some day. I laugh about it, but oof! WOW! Thankfully I do have some smarts about myself and what I am doing
Does anyone know where my life went?? I miss it!
I get more and more frustrated with the new me.
I am so sick of being angry, sad, and overwhelmed. I do what I have to do on a daily basis, but it is getting harder and harder to pretend.
I am only 6 month post TBI. And most people don't understand TBI. Yeah, I am mostly normal, but I do have deficits! I wish people would understand!!!! Maybe I should just wear a bandaid on my forhead so that people remember that I did have my brain scrambled and reassembled.
May (7 months post)
Work work work, it feels like that is my life. Well, for the most part it is. I know I am lucky I can work, I just miss my social life! I used to be able to balance it all, and I used to be able to see my friends more. Now that I am too freaked to drive at night, I don't really have a social life. I feel like I am 14 waiting for mom and dad to drive me somewhere instead of a 31 year old! Hell, if I lived with mom and dad it would probably be a bit easier for transportation.
Patience patience patience, I know. I need to embrace that I will not be the same as the old me, but that doesn't mean I can't be pissed about it.
One bright bit, I went to K-Mart today by myself without any anxiety or feeling of being overwhelmed. Though, I do know this Kmart from before TBI and I was kind of able to visualize a path to get to exactly what I needed. Got a little bit of nervous sweaty palms and a bit of sound overstimualtion, but I was able to do it!
I am getting called out a lot on my mood because it apparently is written all over my face. One of the kids I work with says "miss kara, you are angry today, you have angry face." or today i was smiling because it was a bit of a stress free day and the same kid says to me "miss kara, you are smiling so much today, is your half of your brain that was broken healing better?" This crushes me that he can read me like this. I try to explain to him that I am not angry with him, and sometimes he gets it and sometimes he doesn't. I even have one co-worker that comes up to me and whispers in my ear that I need to be nice. He can see it on my face when I am upset and getting ticked off. This all goes with the feeling of being WAAAAAY OVERWHELMED with work and frustration with my "new" self and my deficits. Some of my co workers who knew me before the TBI don't get me now. I explain that I am a bit different and I appologize all of the time for looking angry, but I can't help it. My face seems to be solidly in the angry/frustrated/sad place.
I try to change the look on my face sometimes, but that takes so much energy. Of which I need for work and life in general. I miss the old me.
I never went to doctors before this. And now I feel like I practically live at different doctor offices. Some of them, I am like Norm walking into the bar on Cheers. I walk in and the receptionists are like "KARA!!! how are you????"
June (8 months post)
Yesterday and today! I drove myself and went to K-Mart, the grocery store, Old Navy, and Ulta.
WITH NO ANXIETY!!! The grocery store did not rock my world like it normally does. I split a big trip into 2 days. So yeah, 2 days of the grocery store but making the trips smaller seemed to have helped.
And today I was able to walk/run a mile in under 25 minutes. It is not amazing time, but for me that is great!! I am slowly getting back to my old strength! I would do a happy dance but I think I wore myself out!!
So i was discharged my one doctor, to only gain another possibly 2. I finally switched PCP's to keep my medical records within one hospital system. Basically for my sanity so I don't have to explain everything to new doctors and to make sure there are no mistakes along the way. So I went to my new pcp and had my ear checked out. My left ear has been driving me nuts since the accident. I feel and hear clicking all the time. It feels squishy. My ear was always blocking and popping big time after the accident and the surgeries. It was checked once and everything was Ok. Finally I just could not take it any more and had my new doctor look at it. There is major fluid backup in the ear drum and ear canal. it is bubbling. YUCK!!! That explains the squishy feeling.
The thing that really stinks is that I was born deaf in my right ear. So I only have my left ear to hear out of. The feeling of squishy and clogging has impeded my hearing. And I might have to go to an ENT to get it all checked out too if the meds my doc put me on don't help.
Yet another fun part of TBI, brain surgeries.
I spend so much time and money at doctors, money for parking, and money for meds it is ridiculous. So frustrating. Another part of being 31 going on 99.
July (9 months post)
Yesterday after hours and hours of sitting home alone a friend finally returned one of my calls to come over. That was around 4:00. I was all by myself from about 4:00 friday until then. I do not like alone time at all!!! I am more needy now for companionship, I have told people that, but I still always feel alone and spend lots of alone time.
Now, I was able to smile at some point yesterday because I was able to make beaded bracelets, while chatting with my friend and listening to music. This required eye hand cooridination, concentration, multi tasking, good vision. I was so freaking proud of myself for that accomplishment because months ago i would not have been able to do it at all. Or i would have started, gotten frustrated and quit.
I have already cried a few times today. I am just so upset. I always second guess myself now since the TBI...am I suddenly a bad person?? Why do people not hang out with me??? where did everyone go???? I know this feeling is one of the common ones with TBI people and it sucks!! I can't stand it. So here I am sitting in my apartment on my computer
I finally called my PCP office to get my head checked. I did not know who else to go to since i was discharged by one doc from the rehab hopsital and I don't see my neurosurgeon until october, my one year anniversary of the accident.
But our medical system is sooooo cool here. My neuro's office saw that i was having some concerns with my head and called me.
I saw my PCP and they sent me for a CAT scan STAT. They did not want to wait around. Better safe then sorry. They just want to check me out since my skull has been feeling odd. It feels very very tight and very heavy. I called my neuro office to let them know i got a scan and they have me scheduled now for the 22nd.
Not bad work for a TBI to get done all by herself in one day.
It was just REALLY confusing in the one hospital. They re-did some stuff it is under construction and i thought I was lost. I was getting so confused in the building because things were not the way I remembered them. I walked in lots of circles. Embarassing, but I accomplished my goal. I just hate having to do all this stuff on my own. But oh well. I just need to get used to that.
Today had appt with PCP at 8:45 a.m. to go over my problem with my ear from my accident and my head pain/weirdness Said I needed an MRI to double check the nerves.. Water build up in ear drum, bad clicking and hearing going down hill. Then he sent me to ENT doc at 1045. There is scarring in my ear drum along with water build up and possible Eustacian tube deficiancy or something like that. ENT sent me to Audiology to get my hearing tested. Around 12:00. then at 330 had to go to my MRI.
Oh my goodness for all of this for TBI girl. Talk about overwhelming and a bit confusing. Thank god I take my notebook with me everywhere to write everything down. Again the part i hate about this the most is going through all of this alone and worrying about the "what ifs?" I try to stay positive but there is always the part of me that freaks a bit. What if the docs tell me something I don't want to hear or something I can't handle or if there is some complication? I can't handle that on my own. Oh well, it is what it is.
My parents came out to visit me. They came out for their 34th wedding anniversary too. All of a sudden I was doubled over in pain, could hardly talk or breath. Couldnt sit or stand, just kind of wanted to float. Dad called 911 and off I went. Had to have my galbladder removed. Apparently it was really really really infected and swollen. It was a mess. And in the process I guess my liver got nicked a little. So I had to have another procedure. had to have a stent placed on my liver. I am not wonder woman so much any more.
I am having a hard time seperating that this has nothing to do with the accident and getting TBI. It is too close together. I feel like I a failiing at life. And I feel bad for my parents. They are now going to stay with me for 2 weeks. Basically to help me and to help my mental health since they know I am depressed and always lonely and I depend on work for my life. I am not allowed to work for some time either.
August (10 months post)
I am so sick of saying "I am sorry" all of the time for every little thing I do. Sometimes I feel like a disappointment.
www.zazzle.com a website for tshirts, cups, pins, etc. They have a TBI section with some pretty good stuff. I love all of it and want it all.
Some highlights....pins/shirts with a pic of a brain with a band aid on it and it says, I am still me"
I am a TBI survivor.
Not tonight dear I had a craniotomy.
TBI has touched my life....
anyway, just check out the site, the stuff is amazing and i want it all!!
Yes, I am still me, frustrated, annoyed, jobless, galbladderless (lol), and still brain scrambled.
I may have an infection in my skull/brain. Gotta get more MRI's. Thank god I love my neurosurgeon.
And i also have to go to a neuro opthamolgist. (neuro eye doctor) because I am seeing floaters a lot now.
Doctors doctors doctors doctors doctors.
I love me my doctors. Hey, at least it is air conditioned in all the hopsitals where my appts are. So that is one way to beat the heat. See, I can find some silver linings.
MRI and blood work was inconclusive really. Neuro is confused too. So in hope of alleviating some of my funky feeling in my head I am scheduled for a small head surgery on Tuesday.
They are going to cut some of the scalp and clean some area in my skull and then stitch me back up again. This should be just an overnighter. DOne on tuesday and hopefully discharged on Wednesday if all goes well.
If this doesnt help then down the line i will need to have another craniotomy. This is one where they take a piece of the skull out and then eventually put it back in. This time they might have to use titanium or something. Last time i had this done I had my original bone put back in.
So yeah, on Tuesday I have the little head surgery and I also have a procedure scheduled on Thursday to get the stent removed from my liver.
Honest to god, I am just moving into the hospital! Shit!!!
Was in the hospital for 5 days this time. Went in for my litlle surgery which was to be a clean up and they ended up having to do a bit of a craniotomy again. There was in infection in my skull flap that they replaced in December. So they had to cut a piece out that was infected. I do have a hole in my head again, but I dont have to wear a helmet this time. And I am rocking a super cool haircut. (read with LOTS of sarcasm) Looks like I have a boomerang shaved into my head.
I know have a picc line too so I can shoot myself up with antibiotics for a month to hopefully kill this bug that is in me.
My life just feels like a mess. Everyone tells me I am lucky to be alive. Yes, I know that, but I am not living a life, I am just surviving day to day.
My brain injury and surgeries is a HUGE part of my life now and is basically all I want to talk about because is it the only thing going on in my life. And it helps me deal with it all.
I keep saying I am not "normal enough" for the "normal" world, and yet I dont really fit in the tbi world. I feel lost sometimes.
Even my home nurse, (who helps with my IV meds I need for now) says You are a mess on paper, I didnt know what I was getting into. I cant believe how amazing you are" I know she is saying that to be nice and supportive. I know I am amazing for where I am, but statements like that dont help me. Makes me want to cry sometimes. That just goes with feeling lost
I know this is just another ripple in my life. I know I can get over this all and I am just feeling kind of sorry for myself now. "It is what it is" I can overcome this all and kick it in the ass. I just feel like I can ramble on about nothing and everything right now.
And the sad thing is, is that I feel the most comfortable at hospitals. I dont get weird looks for having my funky hair cut and wearing a picc line. I actually dont mind being in the hospital. Hell, I am around people all day and can talk to everyone and feel like I am not complaining about life. And I feel validated.
Had my appt with my neuro today. I got my stitches out!!! YAYAY...did a happy stitches out dance! I wore my Wonder Woman necklace and he loved it! I think my neuro doesnt know what to think of me sometimes.
The Ugh part is that in october I have to have a special CT scan to measure the size of the hole in my skull so that I can be operated on yet again to get a plate put in. The doc said it will be titanium. I am demanding diamond encrusted platinum. He said he will see what he can do for his super star. LOL. But I am just annoyed that I will need yet another surgery.
These woe is me days are hitting me hard lately. It needs to stop. I think my recent hospital stays and the losing of the job have finally hit me and i am just doe with it. I really am. I get so mad at myself for getting on that motorcycle 10 months ago. I effed up and made a mistake and it needs to stop kickin me in the ass.
September (11 months post)
The past month my parents have been staying with me or they have been dragging me back to my hometown to stay with them. Yesterday they have finally set me free, I am flying solo again. Which may or may not be a good thing. Just so lonely. I have been used to being a social person and being around people and now i am not. I look forward to all my doctors appointments or my home care nurse to work on my Picc line to come. It is something to do and someone to talk to.
And living in the community where I worked in the elementary school kind of hurts. Yesterday I was at CVS getting my meds and some kids from the school were there. They were sooo excited to see me. All ran over and hugged me and then asked why I was not in school. I just said that I did not know why I was not there and that I miss them all terribly. And then they started asking the questions about my picc line. They all know that I am Wonder Woman, so I said it was how I get my Wonder Woman super powers. HAH! But after I left there I went home and started to cry because I miss the kids, I miss my job, and as usual, I miss my mother effin life!
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