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Angela

It is stil very difficult to put thoughts together but I wanted to do an "update" as a way of thanking all who have helped me during these long two years.

I cant continue....suddenly im in the fog...ive hit the wall ...there are miles between the next word and now...this is the dark place.

An hour later and Im a little clearer. I dont know why the "fog" happens and as Ive told my neurologist, I no longer know what is tbi, what is depression and what is exhaustion.

The last 8 months have been the hardest of my life. In July my husband collapsed after a horrific hemorrage and wa s diagnosed with stomach cancer. He had until then been my caregiver and support. In one second the world came to a stop. I became his caregiver and tried as best I could to be friend, wife, caregiver, advocate, nurse - we went thru major surgery, his stomach was removed in early August, weeks in ICU, hospitals, clinics, emergency rooms, chemotherapy and radiation. If he was in the hospital that meant inumerable hours of dealing with drs, nurses, trying to fill in for short staffing, fighting for care, fighting the insurance company which constantly wanted him out, days on end with little or no sleep. Only my daughters devotion saved me from going mad...she had graduated from school in June and without thinking twice postponed her life (lives with her boyfriend in another state) and came to help the two of us. I cannot drive because of tbi and meds side effects, balance problems so she drove back nad forth to the hospital an hour each way and to all the drs appointments and looked after us only going home on weekends. Eventually husband was discharged and sent home with a 15 inch long and 4 inch deep incision. Home care provided a nurse for an hour daily until the incision closed. Chemo and radiation came next and he was unable to eat (severe radiation burns in esophagus - drs just say "it happens")and nearly died because he refused a feeding tube. Finally, he consented when he was utterly depleted. I had to learn to manage the feeding tube and although home care approved 5 day s a week aide they never sent one - where we live there is no public transport and aides wont come.

It is now February 2001 adn he is still trying to learn to eat and on a feeding tube, he has lost 80 pounds and tho his spirit is very strong he is still very weak.

I realize that Ive been writing about him and not me...but my problems and care have had to take second place. For many months I ran on adrenaline, didnt sleep, was emotionally numb and made what efforts I could to get to my therapy and drs appointments. My symptoms got worse. Depression came like a tsunami wave, all my meds were increased. I fought with workers comp to have treatment and meds approved. Went thru hearings before a judge, arguments with my lawyer and did what I could to keep the house running. I started falling and was unable to work anymore after June 2000 - money became a constant worry. Although some things had improved after two years (speech and reading were tolerable) other things became worse as the stres mounted. Pain, spasms and tremors plagued me. In October the workers comp judge finally acknowledged that I was profoundly depressed and agreed to pay for treatment and meds - a great victory since workers comp almost never acknowledges depression directly related to brain trauma. The day after Xmas 2000 I pitched forward down the stairs (my legs gave way) and suffered cuts, bruises, broke a big toe and I believe injured my spine). I felt beaten in more ways that one...just felt I couldnt go on. My neuro was very concerned but this new problem she said was not connected to head trauma and so I had to go thru HMO primary dr. A month later I fell backwards down the entire staircase. Massive bruises, sprained an ankle and my left hand and took an hour at the bottom of the stairs before I could move - husband heard the noise and unplugged from feeding tube to come help but was so weak could only pat me and cover me with blanket til I could move. Xrays were taken and mercifully there were no fractures. An MRI has shown herniated and a massive disc bulge in the low back and a fragment which is pressing on the nerves that work the legs. A blood test shows Im very anemic and have high cholesterol and something going on with renal function. My blood pressure is now very high so Ive had to stop taking pain meds (vioxx may cause high bp) and the bp med they gave me nearly killed me so had to stop that. The last few eeks I sleep as soon as I sit anywhere, Im exchausted beyond description and anything is a mjor decision...and hard to do. I cant take more antidepressant meds the dr says. The sleep problems, pain and confusion of the first few months after tbi have returned and Im very scared. This week I go for an EMG (nerve test) of the legs...drs are talking back surgery but I cant even think of it right now.

The good news is hubby is finaly able to drink an ice cream soda and has gained a few ounces...spring will be here soon and Im still hanging in.

Being TBI and a caregiver for seriously ill family member is not doable...but such is life. Thanks to all of you who are always kind and compassionate. Sorry for whining...I know my problems are small compared to many others.

On January 8, 1999 I was working as interpreter/patient advocate at a chiropractor' office where I worked part-time to gain experience is patient management. A recent office renovation had included the installation of a heavy pull-down shelf in a doorway and in spite of the fact that many patients and staff members had complained about this shelf as a nuisance and a danger - nothing had been done. That day, as I went through the doorway a co-worker with her back turned to the room lowered the shelf with great force and hit me above the right temple.

This freak accident has changed my life, as do all brain injuries.

After the blow I was dazed and confused, staggered into the adjusting room and fell on one of the tables...at first I thought I had not lost consciousness but my memories are very vague and of a dark room. One of the doctors adjusted my neck which hurt terribly (this should not have been done since they had no idea what injuries I had suffered) and brought an ice pack...she kept asking me if my heart was ok. I had great pain in my head and felt nauseous and very shaky. Nobody called an ambulance or my home. After some hours left lying on a table with the ice pack and feeling increasingly sick I asked the receptionist to help me call home...my husband picked me up (no one told him what had happened) and took me home. He wanted to take me to the hospital but apparently I refused and insisted on calling my internist - I have a vague recollection that I was trying to follow my HMO procedure and call the primary physician before going to the Emergency Room...she was unavailable on that Friday night and it took some time before her service found her...as best I could I explained - or thought I did - what had happened and told her I was in a lot of pain and felt incredibly sleepy...she said it was ok to sleep and see her the following day. I slept for 15 hours straight and woke up completely dazed...went to see the dr who said I had a concussion and prescribed some anti-inflamatory and pain medication and told me to see a neurologist...no referral. Three days later and still sleeping most of the day and night I went to the neurologist who immediately sent me to the hospital for a CT scan and an EEG. I had terrible balance problems, felt confused, terrible headache, my speech was slurred and difficult and the world seemed to be somewhere behind a thick fog. I dont remember much of the first six weeks except that I was in pain, confused and frightened. At first the neurologist said Id be fine in 6 weeks. Later she said six months and now its open ended. I developed other symptoms, intense earaches, a tremor in the right hand, I couldnt read or focus on anything, light and noise drove me crazy...I felt angry and irritable but couldnt cry..I still cant. Over these 10 months Ive had to battle the Workers Comp Board and the insurance company in order to get care and tests ...a brain injury victim is in the worst possible position to do this but there seems to be little choice. An ear specialist finally found that I had suffered vestibular damage and loss of hearing in my right ear and referred me to a jaw specialist. This specialist found that the disc on the right side of my jaw joint had been destroyed by the blow and that I had permanent damage - he can only make me more comfortable but cant repair the damage. Only last month and after a hearing before a judge I was allowed to get an MRI of the neck which showed 3 herniated discs and have recently started neck therapy and jaw therapy. In November I shall have to go before the judge again to beg to continue care and therapy. The CT scan and brain MRI are negative, as they almost always are in closed head injuries and the insurance company will not pay for those tests that would show the brain damage. I have suffered from chronic depression since I was a child but after years of treatment it was under control and in remission the blow to the head brought it back in severe form. Unfortunately the insurance company will not pay for treatment and I have no money so I must cope with that too. I am forced to work part-time as interpreter because I have no other income and can only do so at great cost and for a few hours a few days a week. The tbi exhaustion makes everything so hard and I sleep and nap erratically...sometimes not at all sometimes all day...we all know about that.

I hope that if anybody reads my story they will learn to do some things better than I did:

1. seek medical care immediately.
2. if you are a family member of someone with a closed head injury dont wait for them to make decisions...they cant do that. You must take charge.
3. get the best medical care you can as soon as possible.
4. listen to your body and keep fighting until somebody hears what you are saying...drs have their own agenda.
5. seek support as soon s possible...it may save your life.

I am fully aware that my injuries are minimal compared to many others who have been in terrible accidents and that Im very lucky indeed because I can walk and my speech has improved and the terrible headaches are no longer constant but I have found out that there is no such thing as "mild" brain injury...a tbi afects ones entire life and changes one forever. I also discovered that after tbi one goes through a complex series of emotional stages...of denial that anything has changed, of anger, sadness, mourning for the person we were and finally and hopefully of acceptance and rebuilding our lives. I have learned much from my friends at the tbi chat room...they are warm, wise, generous and encouraging.

I have found the tbi chat room invaluable and treasure the friends I have made there...without whom I probably wouldnt be here.

Email Eloisa