Today, our housing support ends.
I don’t know what comes next.
Its been sunny, but chilly. It’s that time of year when standing on my foot is painful, as if my foot bones were broken. Sharp shooting pains come out of nowhere. I feel myself become afraid. I tell myself to relax. Hold on to hope, hold on.
I’ve learned that apparently no one can find the MRI done on me two years ago. In fact, it was December 2009, a sudden appointment with neurology, I believed I was finally going to get help.
That was a joke. I got a phone call on a Sunday evening from the lowest doctor on the rung, telling me ‘you’ll get better.’
I don’t want to think back to that moment now that I have, it makes me sad.
Now, they say they can’t find my MRI. Oh, yeah. right.
I go back over the last year since I was told that the first hospital was ‘off-limits’ to me in December 2010.
I remember driving home with my Dad, in shock that my doctor had said that to me. I was crushed.
I was reviewing some old correspondence in my year-end cleaning. I came across emails I had forgotten. Twice, Stanford lost the first referral from my GP.
I was so distraught at the time, it seemed like more of the same from the first hospital.
It took my mom calling to ask that Stanford see me. They finally agreed. When the specialist said he knew exactly what happened to me, and told me about a patient of his in England who had just started Graduate School, I felt so hopeful. The nightmare was over.
Then, my medical files from the first hospital were ‘lost.’
No one could find the file I sent by email even though the file never bounced back.
I kept calling, I sent it over and over by email as they asked me to do. I even sent it by registered mail in time for our meeting. But, they didn’t want to talk about the MRI.
At all. Now, the MRI is lost.
I think back to the last appointment. I was told that I was ‘rude’ because I kept calling, and was anxious, that my medical file was lost.
I was told if I ‘do that again,’ I will be prohibited as a patient. Again.
Now, my MRI is lost, no one knows where it is. You can guess I’m not about to call to try to find out.
Ironically, since my dad is a doctor, I sent him the same medical record, and he reviewed the MRI himself. In fact, we talked with them about the MRI, and what he had seen on the MRI, in the meeting.
I mean, I was asking them if they didn’t want to perform even 1 (one) test at all???
Of course, what am I to do now? I can’t call chasing down my own MRI, otherwise, I might be ‘banned’ from the specialists.
Another symptom that has been spiking recently is the incessant pins and needles and itching. Its awful when it spikes at night, making it hard to sleep.
I’ve talked enough on this blog about how I’ve used the warm water (sometimes, hot) as a method of pain control and management.
Over time, I’ve added and experimented with various herbs. I’ve added ginger for inflammation, honey for soothing skin, lavender for relaxing, Epson Salt, and even various anti-oxidant fruits.
This month – Oatmeal!
I’ve added Oatmeal to see if it helps calm my skin in general, or if its more of a ‘spot’ treatment. Since the itching is often worst at night, I may just have to try a late night Oatmeal soak.
So far, I still had itching last night, but I’ve found relief during the day with the Oatmeal soaks so give it a try if you are so inclined.
Well, it has been a year of little progress on the treatment front. And, as I said, we’ve just lost our housing subsidy. While the delays piled on, lost referrals, lost records, lost MRI’s, a whole year has passed, and I am no closer to knowing what is going on or how to access treatment.
I hear people in my RSD support group talk about the testing and treatments, but none of those things are ever offered to me. I called an expert to find out if he can talk to my GP to find out what is going on.
Through prayer and alternative treatments, this year has been a HUGE gain. Spiritually and emotionally, I am a lot stronger within than last year feeling crushed when I was told in Dec 2010 that treatment access was never going to be offered at the first hospital.
The trauma of the last 3 years, of having a medical system that not only hurt me, but pushed me under the rug, attempted character assassination, gathered intelligence rather than help me, the entire experience was a huge lump that sat within me.
It’s a trauma I’ve never known.
It opened my eyes to the Tragedies in Health Care occurring every single day.
Even today, I hear about another woman with RSD who is losing her housing.
The other night, my son brought me to a bawling mess.
He shouted, ‘if there is a Creator, how did he let something like what happened to you happen?’
Alone, in the dark of night, I looked up to the sky and asked Creator, ‘how can we restore my child’s faith? Please help me because I do not have an answer for why this medical system has been able to get away with what it has.’
This horrendous process, from the moment I got hurt up to lost MRI’s today, has shaken the faith of a woman who was embarking on the job of a lifetime, and a 10-year old who watched mom get stuck in the arm with a needle, heard the bear cries into the night, and saw as the rest of our world came crashing down when soon I was unable even to walk. He saw what the medical and legal fields offered by way of help.
The alternative healers worked on me to remove that trauma so that I can grow strong again. Where every visit with the hospital was soul crushing, the work with the alternative healers offered positive discussion with the illness, and sought to mediate the damage of the trauma on my spirit and emotions. I must be strong so I can prove to my child.
I pray to the Creator to please help me restore my child’s faith in this New Year.
May you have pain-free days and walk a good road towards healing, and arriving at peace.
Happy New Year!