I have been sharing the story of the implosion of my life due to health problems as I have now reached the 20 year anniversary of its advent. It’s been a while since I posted so I thought it was time to continue the story. The last I wrote was about the surgery for the 9mm brain aneurysm behind my right eye. The surgery was successful – well as successful as one could hope for anyway – and I was sent home. I had time off before I had to go back to work after surgery but all was not going as smoothly as I hoped.
Happy Holidays?
The surgery was in mid-December and as I noted in the story of the operation I was really out of it for a while afterwards. Christmas was a week post-op so I was still weak but I did manage to make my way out of bed and down the stairs. My main goal was to not scare my nieces and nephews with the line of staples I had running from the middle of my forehead to the middle of my right ear, just along the hairline. I looked a bit like Frankenstein’s monster. What did I do? I hung little Christmas balls from my staples!
There are no pictures. It was before the digital age.
By the time New Year’s Eve rolled around I was feeling well enough to venture out to dinner with the hubby. Little bits of a normal life were starting to factor back into my life. But the surgery had changed me and left me with some issues that needed addressing.
I Did What?
After the surgery I discovered that my memory was not as it once was. Large chunks of my past were gone; I can look at pictures and the event means nothing to me even though I am clearly in the photos. My baby brother’s wedding is one example – I don’t remember it at all. In addition my vocabulary had gone to pot; I couldn’t pull words for anything to form a sentence. Someone told me that crossword puzzles would help. I started with kid’s puzzles and with much work, frustration and time I was doing the New York Times puzzle. That was one of the best pieces of advice I had been given. It was very frustrating for me to not know words.
The Headache That Wouldn’t Stop
It wasn’t too long before the headache started. Once it started it never stopped. I was back to the neurosurgeon who referred me to a neurologist. She was wonderful; she listened, she cared and she really tried to work with me to deal with the headache. I cannot begin to tell you how many different combinations of medications I went through. I tried massage, biofeedback, meditation, acupuncture – anything and everything, but nothing was working. One medication made me gain 80lbs. I went off of it and I lost the weight. But I still had the headache.
Back to Work After Surgery
In the midst of all the search for a solution for the headache it was time to go back to work. My office was a 30 minute drive from home on a lonely back road. On my first days back I had to be constantly reminded as to my staff’s names. I couldn’t remember who they were! Not to mention my customers. I had to be reminded how to do my job. I had also lost my capacity for learning. You could teach me something one day and I would have forgotten it by the next day. (This still plagues me.)
Falling asleep at my desk was a big problem – I didn’t know I was doing it until someone came in and woke me up! I also found myself falling asleep on the drive home from work. This is when the double vision first started popping up as well. Initially it only happened for short periods and it would go away.
Soon my boss took me aside and suggested that perhaps I was not ready to be back at work. She said I should take Family Leave. As I was applying for it the HR department indicated I was really more suited for disability than Family Leave so they put me out that way. My company had a very generous disability benefit so I was fortunate. They also provided an attorney to help us navigate the Social Security system.
Disability
It was not easy to accept. I had been working since I was 10 years old. On the other hand I was spending 4 – 6 days a week in bed because of the damn headache. The search for medications to help was not going well but I was plugging along. My psychologist was a big help in dealing with the emotional issues of not working. One’s identity does tend to get tied up in, “what do you do?” When you sleep all day because your head hurts and you are nauseous what are you?
Finally, Some Relief
It took close to three years and untold numbers of doctors but finally a grouping of medications was found that gave me a semblance of life. Instead of retreating to bed for 4 – 6 days a week now I’m maybe 1 or 2. I ALWAYS have a headache – I’ve named it Harold as I’ve noted before – but I’ve rather gotten used to it. It varies in intensity and I’ve learned to deal. Guided meditation is my friend. I’ve had to make adjustments to the medication through the years but the three I am on are doing the job.
More From Here
The story doesn’t end here. I still have another brain surgery to share plus some angiogram tales to tell. One is a real doozy. I don’t know if my tale is interesting, helpful or what but I feel a bit better for getting it written.
THE STORY OF THE ANEURYSM THAT TURNED MY WORLD UPSIDE DOWN
You Have a Brain Aneurysm
My Chiari Malformation Story
My Angiogram Experience
Brain Surgery, It’s Not for Wimps
