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March 8, 2022 Continued.... 2:55pm - nothing could console me.
After our meeting with the Doctor, having not been given any hope for treatment or plan for recovery, I wanted to crawl in a hole and die. Once my husband and I got home and settled, I laid in bed sobbing. And sobbing. And sobbing. Unable to catch my breath, my husband laid next to me, held me and asked "Do you think you should contact your primary?"
It was as if I heard what he was asking me but my brain could not process the question that he was asking. I was still reeling from not getting any answers. After about an hour, I had calmed down and decided that at that point I had nothing to lose by reaching out to my primary. I sent him a message through the patient portal, explaining everything that had transpired from December through today.
Within minutes, I received a message back from Dr. Mark Kim at Buffalo Medical Group, my Primary Doctor that I have been with for years. In that message he said he was going to have the scheduling department call me to get me an appointment the next day.
Wow! I yelled for my husband and told him the good news, tears flowing down my face. Finally, someone if taking an important interest in me and there is no waiting! I could not come up with the words to express the joy I had. I received that phone call and like that I had an early morning appointment scheduled for the next day - March 9, 2022.
I woke up with a smile on my face, masking the physical pain (as seen in photo above) I was in because I was actually looking forward to this appointment. On the drive over, my excitement was turning into uncontrolled fear. This was something I could not control. Throughout every previous doctor appointment or even the smallest of tasks, I would be extremely anxious, scared and nervous. This is what was happening to me on the drive and sitting in the waiting room for my name to be called. FEAR. PAIN. ANXIETY.
My name was finally called and I slowly and gingerly limped over to the nurse. She had a look of sorrow on her face, and she reached out her hand to help me finish my walk to the exam room. Up to this point whenever I would have to be in a sitting position, my left leg would have to stick out. I could not bend my left knee in a sitting position. Finally, I hear a soft knock on the exam room door and Dr. Kim walks in. He took one look at my leg and said, "This is CRPS". I had never heard of this before, so he broke down the signs and symptoms associated with this, and I had exhibited all of them.
Right then and there he knew exactly which doctor I needed to see to help with a treatment plan - Dr. Jafar Siddiqui at UB Neurosurgery. I was torn with all of this information. On one hand I was very happy to receive somewhat of an official diagnosis with a plan and the other part of me thought, what I have is really bad and I was scared. More scared than when I was in the unknown stage. None the less, I sat as Dr. Kim called Dr. Siddiqui to explain my situation and explain that I needed to be seen immediately.
And just like that, I had an appointment the next day with Dr. Siddiqui at UB Neurosurgery. I immediately felt different about this appointment as Dr. Siddiqui entered the room and we began our first conversation. Dr. Siddiqui's compassion and attention to every detail that I was sharing about my pain, my day-to-day agony, inability to move, concentrate, etc. He listened to all of it, asking specific questions about the pain, difference in leg temperature, the inability to touch my skin or having any material touch, as well as about my mental status.
Dr. Kim and Dr. Siddiqui were the only two Physicians that asked about how I was handling this mentally. They were both open with me about how difficult this can be accepting that I will not be able to go about your daily life as I had before. It was very emotional for me to hear and there were a lot of things going through my head. Dr. Siddiqui then said to me that I had treatment options, and he explained all of them to be very clearly. The first option was a Stimulator Cord which would be a 7-day trial period before being permanently embedded on the spine. The second option was a Plexus Lumbar Nerve Block injection, which would be a medicine injection to the left leg nerve given in the spine. The final option was Nerve Pain medication which Dr. Kim had already started me on.
Sitting there, weighing the options in my head, Dr. Siddiqui made me feel very comfortable and he reassured me that whatever course of treatment that I choose, he will be there to help me every step of the way. The more I thought about the Stimulator Cord, the leerier I became of it. I made the choice to go with the Plexus Lumber Nerve Block injection.
Dr. Siddiqui made me feel like I have a fighting chance of beating this rare disease and going into remission. Although he said it will not happen quickly, he was confident in our treatment plan and so was I. I left that appointment with my first injection on March 25, 2022.
I would now wait 16 days until my first treatment. 16 long days, 16 long nights, full of pain, anger but a little glimmer of hope that I could finally find some relief once my treatment begins. March 25, 2022 can't come soon enough.
Thank you all for being interested in my journey! Tune in next week! Stay Safe!
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