Its been a couple months now

[DammitJanet]

that I have been home. I AM doing much better but there are still things that arent right. I "look" normal now. I can use my arms and legs. If I dont talk to you for too long I dont sound impaired.

But....something is wrong. No one told me that this would be like this. I didnt understand what a Traumatic Brain Injury (TBI) was. I am having something that is akin to either racing thoughts or voices that argue with each other that never happened to me before. It only happens with movement which makes my therapist think it has to do with brain damage more than a psychiatric component. I dont know what it is but it is driving me crazy! I still have cognitive issues.

People expect me to be "all better" by now and Im not. I dont know that I will ever be all better and it scares me. I am really freaked out because of the way this all happened to me because I dont remember any of it. I think I have a whole lot of the problems associated with Traumatic Brain Injury (TBI). I try to do things and act normal...but I just cant. I am not up to normal.

I dont know what I expect out of posting this but I just wanted to tell you all how I am really doing.

 

[house of cards]

Janet, my sister has a Traumatic Brain Injury (TBI). She got it after having a brain tumor removed. it has been a rough road but she is still improving after 2 years. It will take its own path to recovery and in its own time but I strongly believe you will continue to improve. You already sound so much stronger then when you first came back. Hang in there.

 

[Abbey]

Inform me. What is Traumatic Brain Injury (TBI)? I don't know.

Abbey

 

[Star*]

Traumatic Brain Injury.

Janet -

YOU don't do anything in your life and never have done anything in your life on ANYONE elses' terms. WHY would this be any different?

As far as the arguing...well....you know when I talk about the sock puppets in my head that argue or logically work things out. Well over the years I think due to 7 drunk drivers hitting my vehicle, and an abusive X - I've taken quite a few head shots. Sometimes just yelling SHUT UP....ARGH will you STOP? Helps. No I'm not kidding. The pickles in my jar have been spun a few times - ya know.

When stressful situations arise do you think it's worse? Or is it worse when it's quiet and your brain tries to busy itself? Take that answer and go to your neurologist - asap. Really - it may just be a medications tweek or it may be the brains way of trying to stay fit. No joke.

Hugs
Star
Star
Star
Star
Star......SHUT UP......

(see it works)

 

[DammitJanet]

Abbey...Traumatic Brain Injury (TBI) is a traumatic brain injury. They consider that I have one because I was in the coma for so long because my brain swelled so badly. I am left with some residual brain damage and we dont know if it will ever heal.

 

[rejectedmom]

Janet, I was away form the board when you got sick with mennegitus and put into the coma for healing purposes. I am so sorry that your body had to endure all that on top of all the other stresses you deal with. I have a friend who almost died from what you had when she was a little girl. It took a few years, but she is pretty close to normal now. The only apparent residual is migraines.

I also know many people from when my son was in therapy at the state hospital as a child who suffered tramatic brain injuries (mostly due to stroke and car accidents though)and came badk from them. For some it took months for others it took a couple of years. Don't give up it hasn't been all that long into the recovery period. (I know it is easy for me to say I'm not living your life). Take care of yourself and when you get down in the dumps come here for support. -RM

 

[Steely]

Here are the signs and symptoms I found for a Traumatic Brain Injury - which you could easily have given all that happened to you. Have you talked to the Neuro doctor, as Star suggested, about all of this? If not, I would do it ASAP.

-----------------------

The signs and symptoms of a traumatic brain injury (Traumatic Brain Injury (TBI)) can be subtle. Symptoms of a Traumatic Brain Injury (TBI) may not appear until days or weeks following the injury or may even be missed as people may look fine even though they may act or feel differently. The following are some common signs and symptoms of a Traumatic Brain Injury (TBI):

• Headaches or neck pain that do not go away;
• Difficulty remembering, concentrating, or making decisions;
• Slowness in thinking, speaking, acting, or reading;
• Getting lost or easily confused;
• Feeling tired all of the time, having no energy or motivation;
• Mood changes (feeling sad or angry for no reason);
• Changes in sleep patterns (sleeping a lot more or having a hard time sleeping);
• Light-headedness, dizziness, or loss of balance;
• Urge to vomit (nausea);
• Increased sensitivity to lights, sounds, or distractions;
• Blurred vision or eyes that tire easily;
• Loss of sense of smell or taste; and
• Ringing in the ears.

 

[DammitJanet]

LOL Steely...I have most of them and had them extremely badly when I was in rehab. I couldnt figure out why I felt so badly during the middle of the day EVERY single day at rehab and no one ever suggested to me that it could be because I had a Traumatic Brain Injury (TBI) even though I was on the Traumatic Brain Injury (TBI) unit!!! I have gotten a little better with somethings because I can lay down now when I feel tired or if my eyes go wonky.

 

[susiestar]

bkj

 

[Hound dog]

From one Traumatic Brain Injury (TBI) patient to another...........it's a long process. I think the older you are, the longer the process.

For the first at least 2 yrs following my accident, my kids swear I was not the person who had raised them. I went thru the motions, but the me that made me who I am.......was lost. Even as I regained cognitive ability that I'd lost, which was also slow by the way, my personality was not the same.

easy child says I got lost in la la land. She tells me if she didn't know better, she'd have sworn I'd spent those years stoned outta my gourd. That is how out of it I was. Processing even simple info at times was too much for me. And yeah, racing thoughts, mood swings.........

Well, let's put it this way, after a lifetime managing BiPolar (BP) on my own without medications.....I had to go to a psychiatrist and get medications to cope. It was like as my brain was trying to re-wire itself.....it got sort of screwy as it was making the new connections. So it threw everything outta wack.

And now....I have only very very vague memories of that time period of healing of 2-3 yrs after the accident. I don't recall easy child graduating from the nursing program.....yet I stood on stage and pinned her with sister in law. I don't recall much of Darrins babyhood unless it is thru picture stimulation. I have a very vague memory of Travis' graduation.......sort of.

Yet to the family, other than the personality thing........they thought I was ok. Oh, and the memory thing. easy child used to have to tell me all day long if I was going to watch Darrin, and even then when she'd bring him over I'd be surprised to see him. lol (I can laugh now, wasn't funny then)

It's a longish process. Definately not a short one. You've gained back tons, which is extremely promising, but you still have quite alot to go if you're anything like me. I still am an ongoing process. So try to be patient. If family have issues........give them info and make them read about it. (although it's really hard to "get" unless you've been there done that)

You'll get there with some time. And I know it's scary. Still scares me, though not as much as it used to.

I'll PM you in a little bit. (I'm cooking right now)

(((hugs)))

 

[TerryJ2]

Janet, that's ridiculous that no one told you while you were on the unit, that those symptoms could be caused by your injury. I want to smack them!!!!!

Be good to yourself. This will take a long time.
If I were in your shoes, I would be in much worse shape because I can be very impatient and then I get angry.
You sound like you're doing very well, analyzing everything.

If you wanted support for your post, you've got it!!!!
I wish I could wave a magic wand and make all your horrid symptoms go away.
{{hugs}}

 

[DammitJanet]

Thanks guys.

Yeah....this whole thing just confuses me...lol. Which is mighty easy to do right now. So many of the signs and symptoms overlap my other disorders so I just figured I was going wacky with them but I cant get them to get under control the way I normally do. My medications dont seem to be helping me as much as normal. And ohhhhhh god my head and neck! I have never had pain like this and nothing touches it.

 

[Janna]

I'm so sorry I haven't been around to know what's been going on with you, Janet. I hate to hear you're not well.

I don't have any advice, I'm not in the know, but wanted you to know I care and was thinking about you.

 

[timer lady]

Janet, from one meningitis survivor to another I feel your pain, your confusion, your loss of cognitive abilities, etc, etc, etc.

I'm almost 2 years out & still suffer from swelling in my brain (especially as the prednisone is being titrated).

Give yourself time.....be gentle with yourself. The first thing I learned & still have time accepting is that my life has changed. Not for better or worse - it's just changed. I do my best to limit my frustrations over that.

(((hugs)))

 

[DDD]

I'm sorry you are still in pain, Janet. I didn't realize that was a factor.
The Traumatic Brain Injury (TBI) issues I can sadly relate to. I have a bunch of sites stored and a few message boards if you think it would help. Like you, my grandson was able to survive the brain trauma and in a couple of months regain control of his physical being. The support we received during his hospitalizations was terrific.

on the other hand, there is a lonliness involved in the residual effects. The symptoms are subtle and therefore rarely recognized by those unfamiliar with the Traumatic Brain Injury (TBI) world. The short term memory loss is particularly frustrating for our family. I can only imagine what stress it causes inside the patients.

Sending a caring hug your way. DDD

 

[totoro]

Are you having Therapy at all? I mean Occupational Therapist (OT) or PT?
When I was working at a Hospital for PT, I was doing one of my internships in the Traumatic Brain Injury (TBI) unit and the other in the Spinal Cord unit.
The Traumatic Brain Injury (TBI) unit was intense. But even after the patient was sent home, therapy was an ongoing process. Sometimes months to years.
Even for little things. A good Occupational Therapist (OT) or PT can find ways to work it so Insurance will cover it, wink wink.
An Occupational Therapist (OT) can help with the Cognitive Issues. They should be if they aren't, which will help strengthen your mind and regain and rebuild your ability to control your thoughts. Or at least see how far you can regain control.

 

[1 Day At a Time]

Janet,

The fact that you are getting some frustration over your recovery means that you are really beginning to recover. (Trust me on this). Rehabilitation is a process, and because you were so very ill, this process will take time. However, because you are starting to feel impatient you are indeed moving forward.

It's going to be really important to follow up with different types of therapy. I can't say enough good things about occupational therapists and physical therapists. They can work miracles and have some wonderful tricks up their sleeves. I have seen wonderful results from their work, both professionally and personally. Your treating physician should definitely be able to refer you to some good therapists.

I would also recommend cognitive remediation treatment. This is usually supervised by a neuropsychologist and works toward finding ( and treating) the areas where you may need a little work . Most of my clients with Traumatic Brain Injury (TBI)'s also have coaches who work with them to organize their daily life and come up with strategies to compensate for memory loss. The coaches are usually contract workers who are loosely connected with neuropsychologists.

Whew, I know this sounds like a lot, and it is. Rehabilitation is hard work. I'm not surprised that your family is expecting you to be "ok" and "back to normal". I think that most families respond this way after a loved one recovers from a serious illness. "Denial" helps folks try to get back to some semblance of normality in their lives. With time, they are going to become more aware of the issues you are dealing with. That will allow them to get onboard with your treatment needs. It will take time, though.

Janet, you are one amazing woman, just to be doing as well as you are right now! I'm sending prayers and healing vibes your way. Please give yourself the gift of time so that you can work on the gradual recovery that you WILL have.

Valerie

 

[klmno]

Hey, Janet! Sorry I'm so late to this. I think some others have some good points. I don't have any personal history or knowledge of Traumatic Brain Injury (TBI)'s but it makes sense to me that you are still recovering and that if now you are able to relaize some things that you couldn't even realize before, then that is part of healing. Like if pain numbness is wearing off, so you can tell you feel some pain. The pain is bad, but it's not as bad as being paralyzed.

I wonder, too, about Occupational Therapist (OT) or PT. I would think this would help and you should be getting it- just like they do for stroke patients. Hang in there- I know you have a plan and your a fighter!!

 

[Lothlorien]

I have a friend that had surgery to have a brain tumor removed and she suffers from Traumatic Brain Injury (TBI). She belongs to a good support group, which I think is essential. She also has a great sense of humor, which helps her get through the day. However, she does get very frustrated with herself a lot and sometimes think that her friends are frustrated, which we are not. You may very well have people in your life that won't understand, but most will understand and if you reach out for help, they will be there for you.

 

[Suz]

Janet, I don't know squat about TBIs- I just wanted to tell you that I love you, that you sound more and more like yourself as time goes on, and that I'm so glad you are here.

Suz