With Camp over and my brother back in Seattle, life changed again. I was actually home alone for many days each week.
Even though in the first hallway I wore diapers and couldn’t wipe my own butt and in the second one I was completely treated like a child, the third hallway was the biggest bitch.
Hard to believe but very true. See up to this point I had my ignorance. I had hope that I would recover eventually.
Recover meaning; be “me” again. Walk, think clearly, use my hand, shower standing up, be 100% physically independent.
Not one of the many therapists, nurses and doctors ever told me recovery was a lifelong process and not a destination.
They all led me to believe it was possible. That the light at the end of the tunnel was me moving without thinking. My shoulder subluxation would disappear and my fingers would type again. Maybe not the 120+ Words they typed before but they would type.
Consumed by Pain
I was also led to believe that the increased pain was just my nerves coming back online. The pain was a good sign. (Yeah, right…)
I just realized that although I’ve written thousands of words so far, I haven’t mentioned pain past the initial excruciating head pain.
I find it odd because pain is the stroke effect that has been the most difficult to understand, deal with, and accept. I’m not talking muscular or joint pain. I’m talking about a pain I never imagined ever existed with no outward signs.
The best way I can describe it is as if someone peeled all the skin off my entire left side with a vegetable peeler and placed burning hot coals on the exposed dermis. It’s constant, 24/7.
It began in rehab. It started slowly with itching then moved onto an odd burning pain on the ball of my foot.
At first, the explanations I heard were that the feelings were good. The pains meant my nerves were awakening and feeling was returning. But I never experienced feeling, only pain.
As the pain increased, they increased the meds. As the meds increased, the pain increased and spread to my entire left side. Hmmmmmm.
As the meds increased, my insanity also increased.
Controlled by Meds
Having a stroke does a number on your emotions; I get that. What I don’t get is doctors not listening. Repeatedly I told them my emotional reaction was not me in any sense, stroke or no stroke. It was unnatural.
Instead of paying attention, they decided to add more mind altering meds to my list.
Just because Big Pharma says a side effect is uncommon doesn’t mean it shouldn’t be considered as occurring.
Over and over, I told doctors and nurses it wasn’t me. It’s not how I respond to catastrophes. I’ve had many in my life to base my response on.
No one listened. Meds were increased. Emotional stability decreased.
Still no one listened. They just blamed the stroke, even though my stroke wasn’t near any emotional center.
It’s just easier to blame the stroke than admit that Big Pharma had it wrong. God forbid doctors should actually think for themselves, use common sense, listen to their patient and ignore what the drug manufacturer tells them.
I was living in a black hole. Not because recovery was too hard or the pain too intense.
It wasn’t coming from my brain, not from my thoughts.
It was an unbelievably heavy black emptiness swallowing me whole.
Random Rant: Worthless Doctors
How could a doctor not believe that a drug could cause this? As I type this, a medication commercial just came on the television.
As I listen to the side effects, I hear contact your doctor if you have suicidal thoughts. What’s the point in contacting your doctor? – they don’t listen!
If you pay attention, it’s a common side effect of many drugs. I didn’t know that before but I’ve never had a need for medication before the stroke.
I just knew I wasn’t feeling right even if my life just took a horrendous change for the worse.
Come on lazy ass doctors. Do you really think Big Pharma chooses to mention that their drugs can cause emotional issues?
No, they mention them because they have to. Because it occurred too many times in their clinical testing. Just because you haven’t seen it first hand, doesn’t mean it doesn’t exist.
Taking the easy way out by blaming the stroke instead of the real problem, the drugs, reminds me of an article I read.
It was about stroke being overlooked in well-groomed women. Meaning if they were well dressed, wearing makeup, healthy weight, etc, their symptoms would be minimized and they’d be sent home. The same with young people.
Don’t look like this if you want a doctor to really help you.
How many years and hundreds of thousands of dollars should it take to teach doctors to be open-minded and use their brains. What skills did med school actually give them?
Wait…….. I think I know!
Hundreds of thousands of dollars along with 11-15 years of school & training teaches them to listen to Big Pharma and write prescriptions.
Then when the side effects kick in, they’ll know how to write another prescription to combat them.
They also learn that when they don’t know of a drug for that, send your patient to every specialist available to receive every test known to man.
When that results in nothing new, they write a prescription for a drug that someone somewhere claimed worked even though it hasn’t been tested or approved for that use.
They rarely cure; they just mask symptoms with drugs.
Bottom line – doctors learn how to make us sicker and bankrupt.
It wasn’t until my follow-up appointment with my neurologist that I found out my bleed was in the thalamus, resulting in Thalamic Pain Syndrome. The only reason I found out was because my neuro got pissed at me for signing up for the arm study. The arm study made me ineligible for the Botox he was pushing.
I told him, arm study or not, I wasn’t getting Botox. Yes, my hand was closed and I couldn’t open it but I had very little spasticity. It wasn’t tight, it was just closed. I could open it with my other hand. I was and still am typically more flaccid that spastic.
Having been around so many survivors who had extreme spasticity and had gotten Botox, I had already decided that Botox wasn’t for me.
If you haven’t noticed yet, I’m very anti-Big Pharma. I don’t believe that “there is a pill for that….” like doctors, Big Pharma, and commercials lead you to believe. I was also to the point that I would research medications before saying yes to any suggested.
My reasons for no Botox included:
• It’s not a cure, only a temporary relaxation (paralysis) – shots needed every 3 months
• Long term usage can lead to muscle atrophy (already had that)
• It’s not FDA approved for spasticity (not a biggie cause the FDA has very little credence in my book)
• It’s painful & I already experience intensified pain on my affected side
• It weakens the muscles injected – I had no strength as it was
• It’s a neuro TOXIN (botulinum toxin)
His response was to touch my forearm and arrogantly state that my muscles had already atrophied and I had Dejerine–Roussy syndrome. I would NEVER regain feeling and I would ALWAYS have burning pain.
I was in complete shock when he told me I’d NEVER get feeling back and I’ll ALWAYS have pain.
After 7 months of being surrounded by encouraging and optimistic medical professionals who believed that improvements never end, I didn’t know how to absorb his blunt information.
At first, I was pissed that he used ALWAYS and NEVER. How the hell would he know? How often and how much time did he actually spend with his stroke patients after the hospital? It’d been 7 months and I had seen him twice for a combined total of 10 minutes.
He wanted to push expensive Botox. Of course, he had a friend who provided it.
I rationalized because I wasn’t ready to hear I was going to suffer and struggle for the rest if my life.
His reality check was just the beginning of the worse hallway yet. The nightmare just got worse from there.
Proving Doctors Wrong (at least with one thing)
I knew the doctors were full of shit. From the beginning, I said I was having a bad mental reaction to one of the drugs they were giving me. Instead of listening to me, they said it was the stroke and gave me Zoloft. This caused me to wake up every morning at 4am, hysterically bawling my eyes out.
Like crying during the day wasn’t enough they had to make me cry during the night.
I mean hysterically crying, hyperventilating for a good hour at 4am!
Thankfully, they prescribed the Zoloft shortly before being discharged. I found out what it was for and I just stopped taking it once I was released.
Guess what? No more 4am cry fests. Still insane, but only during normal waking hours.
Shortly after my neuro provided my rude awakening, I went for an ultrasound and met the person who saved my sanity.
The tech and I had to wait for something, I don’t remember what. It gave us quite a bit of time to chat. She asked if I was on Gabapentin since most stroke survivors are prescribed it.
She then began to tell me about her husband who had a TBI from a car accident. It was like she entered my brain and was reviewing my life! The erratic behaviors, suicidal tendencies, excessive crying, and extreme angry outbursts.
She told me that it was for pain. She said her husband decided he would rather have the pain than the insanity so he stopped taking it. Me too.
I went home and researched.
I’m not sure why I never questioned why I was on Gabapentin and Topomax. I thought I had to take them for some important reason. Like……………. to heal my brain.
Not at all.
The Gabapentin was for the CPS, yet at 2200mg, I still had level 8-9 pain 24 hours a day. The Topomax was for migraines. Migraines? I’ve never had a migraine.
Instead of listening to me, the doctors assumed I needed it because of the pain during the first few weeks after my stroke. I didn’t have migraines – I had 4 days worth of blood filling my brain with extreme caffeine & nicotine withdrawal.
Why did they assume they knew more about me than I did?
Why didn’t they listen when I told them for many years I drank at least 6 cans of Red Bull a day = 480 mg of caffeine. That was on a good day! It could be upwards of 10 cans on a stressful day = 800 mg caffeine. Add to that, 33 years of smoking 2 packs of Marlboro Reds a day =48 mg of nicotine.
So on top of large amounts of blood filling my brain for 4 days, I was cold turkey off huge amounts of caffeine & nicotine.
Migraines – NO. Withdrawal & Swelling – YES.
I have talked to hundreds of survivors, and I’ve only found one that bled for days and her bleed only lasted 3 days. Everyone else I’ve found either had surgery or was put into a coma by day 2.
Based on the surprised reactions of those who have reviewed my records, I’m assuming the others like me died.
When I talked to my neuro about my insanity & continuing pain, all he wanted to do was increase the dosage. No way was that going to happen. He settled on prescribing Lyrica. A drug that appears to have worse side effects than gabapentin!!!!!!!
We already know I’m very sensitive to drugs that have the possibility of affecting my mind.
If I’m going to have pain anyways, I at least want my sanity!
Needless to say, I never took the Lyrica. I also never went back to my neurologist.
I went to my GP and created a weaning schedule to remove both drugs from my system. It was hard, to say the least. It took 6 months to wean off plus another 4 before I felt they were completely out of my system. It was more than worth it. I regained my sanity.
With each dose down I saw improvements and not just mentally. My balance and movement improved also. The brain fog blamed on the stroke began to disappear as well.
I can’t help to think that those drugs seriously held me back in rehab & at camp.
The pain was still there but I was able to deal with it much better.
Hungry & Bored
Despite the all around improvements, I was at my worst. I was alone a lot. Typically I enjoy being alone, but since I couldn’t do much of anything for myself, the days were long and I was hungry. Lunch consisted of snack size skinny pop popcorn in bed.
I couldn’t sit at my computer. I spent the majority of my time in bed, watching TV, pinning recipes I couldn’t make, reading about stroke, finding stroke survivor blogs.
It was also during this time that I developed a foot ulcer. It kept me completely off my feet for 4+ months. That led my outpatient Physical Therapist to bail on me. His focus was only on my walking speed so when I was told not to walk, he was out.
I don’t know about you but it seems to me that Physical Therapy would have been even more important. I needed help with every exercise. I could only do so much by myself. By the time someone got home to help me I was too tired to do anything but eat and go to bed.
How would I keep my strength up? Well, I didn’t.
Although each dose down brought improvements, they also brought withdrawal symptoms:
• increased pain
• more intense emotional outbursts
I was officially depressed.
Suicide an hourly thought; How, When, Where.
My Mantra: I can’t do this. I’m not strong enough. Why didn’t I die? This isn’t fair; I should have died. I want – no, I NEED a cigarette.
After 8 months of constantly craving and begging for a cigarette, I started smoking again. It helped, a little.
As crazy as it sounds, creating an exit strategy is what brought me back to life. Definitely a post for another day as I see I have rambled on yet once again.
Next up: Learning to Live Again