"THERE'S NOT ALWAYS LIGHT at the end of the tunnel. Sometimes just night and another really long tunnel but somehow we get through" AM JOHNSON 2005
And the next I am paraphrasing here:
"We cannot live in the light all of the time. Sometimes we have to take the light into the dark with us."
I cannot think of her name but I feel her truth to my core.
In March I experienced relief from the 4month headache. I was able to do tasks i hadnt in a while. Not all but some. The positivity i had at this time was profound to me and I must admit I miss it now.
I started to realize how far gone id been. My awesome supervise said it hadn't shown how oblivious id been becoming which meant a lot because id worked hardest at making it seem like i was okay; just as id done my whole life in every emotional struggle Id faced.
My partner, who is also a dear longtime friend who knew me in my prime before even the uterine bleeding of 2007-2012 had taken its toll... knew I was not alright. She has the ability to look at me when I walk in the room and within seconds gauge my pain and my coherence.
I started to notice things.. like my cousin Ronda would wear a blouse and Id compliment her, ask if it was new and she'd crinkle her nose and let me know she'd been wearing it all winter. Conversations came and went and it was clearer and clearer for or a while just how
Far gone I had truly been.
This relief of the pain and coming to terms with my illness became a sort of awakening. awakening. An awakening that i wasn't being lazy and that it wasn't about just sucking it up. And getting my head out of my ass. I could stop beating myself up for how far gone id been and learn my way through it.
It was an awakening to my stubborn self that I had a disease and there was hope through the dark.
I wish I could say the effects of the first tap lasted and that the meds made me better and better. They did at first... then... not so much.
TOPOMAX. 25mg. Added with 2aleve and an allergy pill everyday. My daily migraine cocktail. IMITREX as a rescue medicine for the migraines. The imitrex worked for a while... then didnt anymore.
The topomax I took at bedtime and the next day I felt hungover. Sometimes even still drunk. Not the type of swervy drunk but the inability to make a straight line or stay on task. I was in a fog.
Some side effects of the Topomax are the same as id been already encountering like disorientation. Word finding troubles and similar things . I quit taking it mid may when I ran out and didn't have the money to refill the script. I think that was like $60. (In all ibpay around $200. A month after insurance.I just had to take on a car payment in April and increased car premiums. Buying meds is definitely a source for financial struggles.After stopping the Topomax i should have returned to some normal function. But afterward is when my nightmare started slipping deeper and deeper. This is when the alarming incidents started to happen.
Dyslexia. Sometimes acute. Most times minor. Beyond your basic typo or visual error. Legit. Research. Adult onset dyslexia is a result of acute brain damage. In my head I'm shouting.. maybe its just the meds.
Aphasia, word finding and word jumbling issues. Ive been doing that. but its far worse. In almost feel at times like I have tourettes.
Then comes the memory. Inability to remember passwords. Crucial dates. Appointments. Inability to log in to work based programs or know what to do to get to or complete simple tasks . There's more. Much more. But some I just cant share.
My first long term adult job was as the caregiver to an elderly couple and the woman had Alzheimer's. Over the years Ive worked home health with dementia patients and I was having episodes mirroring the observations Id had over the years in that field.
35. At this point.. 35 years old. Again.. a year ago I was on the Deans list. I ACED College PSYCHOLOGY CLASSES! I was not only on top of the game but ahead if it working two peoples jobs plus a part time gig and photography sessions that had been coming up....
From all that and a bag of chips a year ago...
To a crumpled bag of stale crumbs.
I've been humbled, for sure!!!
With these other effects I've also had an increase in the headaches again. As well as the return of nausea and overall fatigue.
My glint of light and ability to sort of focus and be productive again was waning and I was losing myself in this battle. Unrecognizable to myself anymore.
June 4th I returned to my neurologist. DR CAMBIER. she thought some of the effects may have been due to the Topomax... but most all signs of the Pseudotumor in its horrible form.
Another tap to be scheduled to...pull off some pressure...
JUNE 9, 2015. MY SECOND SPINAL TAP...
I went in bravely. Not nervous. Grateful for the chance at relief before it got worse like before.
The Dr was great though I cant recall his name. He didn't seem as effortless with his skill in the procedure as Dr Ryan had but still good. He actually had a hard time getting the needle in. This led to a few days of chronic back pain and overall sense of the flu.
I went in that morning with a level 6 headache. Somewhere amid the procedure as the Dr had me on my side with a syringe hanging off a needle in my spine I felt a pulling, cramping pain in my buttock. Before I could speak of it it went to my right foot and instantly as if a light was being flipped on.. my headache went completely away and the light above me got ten shades brighter. Another glint of light. That waned quickly thereafter.
This past Thursday.. one week and two days post lumbar puncture... I went to my GP with a level 4-6 headache that had been present for days.
We spoke of my overall being and my experiences I watched as the gentle, compassionate health care professional teared up hearing me speak of my struggles, the frustration and the fears in dealing with this disease.
The talk that followed was a serious game changer. One I for one am still floored by two days later... when I'm home, just as each time in his 6years of life that i have been seriously ill or broken hearted, Sammy won't let me out of his sight or more than a few inches away.
HE has become my anchor!!!
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