Upon meeting her a few years ago, I can remember how she was full of charisma. A person who loved so many, would give the shirt off her back and her pants too if they were needed; she has spent her entire life giving to others. Serving her country in the Navy, as a Firefighter, a Paramedic, she even began to train as a Police Officer before moving here where she now is a Resident Care Director at a full care facility.
After so many years of abusing her body helping aid all those in need, obviously she has gotten older and her body just can not take the constant rattling and lifting. She still does it though, no questions asked…never complaining.
Very little is known of my room mate, my best friend. A few years ago, she started having horrible headaches on the right side of her head and she began to list to the left as she walked. She would work through this; ignore the symptoms just to drudge through the day. But things began to change two years ago; I stopped by her apartment on my lunch to check on her, she hadn’t been feeling right for a few days. I knocked and received no answer. She had recently given me a key to the apartment, so I opened the door and was shocked to see she was posed in what can only be explained as an almost catatonic state, curled into a ball on the computer chair. Horrified, a friend and I rushed her to the hospital. After all it seemed like she was having a seizure, her eyes were rolled back, her face was completely white, lips were blue and her entire body was shaking and jumping.
But it wasn’t a seizure. No one could explain what happened. It just seemed to come and go quickly with no indication as to why and how. Although it never happened again, she began to have benign tremors, the headaches were persistent, and she would stutter horribly. And she couldn’t take care of herself for nearly 3 months, and I moved in with her to help as much as I could. She was alone here with no family. It was hard on both of us; it was demeaning to the caregiver that was now the one who needed the care. She couldn’t dress, feed, bath or even go to the bathroom by herself. And I gave it my all, while still working at my job. Honestly, I know I should have been fired. My boss was more than understanding and I am truly grateful to work for such a compassionate person.
During this time, she still visited her GP and a neurologist, and no one could figure out what was going on. Finally the neurologist ordered a test for B12, and she had abnormal levels. He ordered the shots and the oral supplements, but they didn’t seem to help. After many failed attempts at other medicines, and two near death experiences because of allergies to two of the attempts, suddenly she was fine. When she went back to the GP he told her to see a psychologist, because this was only in her head. Outraged, doesn’t begin to explain how I felt. Abandoned, alone, hurt, and completely crushed for her. He didn’t believe these things were happening. All the tests we re returning as normal, except the B12 blood test. It didn’t make any sense, it isn’t logical for just one deficiency to cause these types of problems.
Or was it? After consulting her neurologist again she soon found out that this type of deficiency was a warning sign for MS…multiple sclerosis. However, the diagnosis can take from 7 to 10 years.
It had been about a year since the last time she had any problems, until Monday. I received a call at work at about 3pm, from her boss informing me she was taking her to the hospital…it was happening again. I left work immediately, over the past two years I began to keep a notebook of all of her symptoms and I had all of her information. We waited for nearly 5 hours before anyone would take her back, insane and completely uncalled for. I, needless to say, was becoming more irate by the moment. I needed sanity, just one moment…to breathe. I was overwhelmed by the time she had gotten seen, it was over and she was just tired. I called Mim; I didn’t know what else to do. I was beginning to have an anxiety attack and I knew better than to let T see me like that. It would upset her and she had been through enough, she needed to rest. After persistently telling her we were fine, and everything was ok not to worry. I nearly burst into tears when I saw her and her hubby walking towards us as we were leaving. I was relieved to not feel alone, and I know T was elated to see someone else cared.
The diagnosis was “Weakness”, seriously. And she was told to make an appointment to see the neurologist again. I do not know how she does it. I would have given up long ago, but she keeps fighting, holding her head high and believing some day someone will be able to help.
I heard a song today on the way to work, that inspired me to actually write her story. And though, she’s going to be angry I shared it…I have the hope perhaps someone will read my modest blog and have some answers. If not, at least I know someone may find this who is going through the same thing…and know they aren’t alone.
The song is “Stand Back Up” by Sugarland, unfortunately I was not able to find a good video for it…but here are a couple of verses.
“Go ahead and take your best shot,
Let ‘er rip, give it all you’ve got,
I’m laid out on the floor, but I’ve been here before,
I may stumble, yeah I might fall,
I’m only human, aren’t we all?
I might lose my way, but hear me when I say,
I will stand back up,
You’ll know just the moment when I’ve had enough,
Sometimes I’m afraid, and I don’t feel that tough,
But I’ll stand back up,
I’ve been beaten up and bruised,
I’ve been kicked right off my shoes,
Been down on my knees more times than you’d believe,
When the darkness tries to get me,
There’s a light that just wont let me,
It might take my pride, and tears may fill my eyes,
But I’ll stand back up,
I’ve weathered all these storms,
But I just turn them into wind, so I can fly,
If what don’t kill you makes you stronger,
When I take my last breath,
That’s when I’ll just give up,”
God Bless.
K