I limped around all day without further thought. I figured it would come out when it was ready. The next morning, I was still limping. The strangest thing had happened. The pain was still present, but moved to the other foot! I felt useless, "I'm sorry kids, I have to sit down because my feet hurt". It seemed so pitiful. I remember the family cleaning the house without me because I couldn't walk because "my feet hurt". Doesn't that sound dumb? I found that Skechers Shape-Ups worked really well to cushion the impact and I began using those ugly shoes every day. After several weeks, I made an appointment with my PCP. I told him I thought it was a B12 deficiency and asked for shots. He's a great guy and has confidence in me, so I knew it would be an easy fix. While in his office, he agreed; but only if we ran blood work.
Several days later, my phone rang. "The doctor wants you to see a rheumatologist, you have Vasculitis". I took down the number and called them. Then I looked up Vasculitis and was exposed to a world of medical terminology, signs, symptoms, prognosis', and fear. I called my PCP back and spoke with the medical assistant. The conversation went like this "The rheumatologist can't see me for 4 months", "That's right." she replied. Confused about what she meant I explained to her that I had questions. "What's your question?" she said flatly. "Well, what should I do, I mean... what makes the Dr. think I have Vasculitis?", She literally giggled and said "He knows because of your blood work". "Please don't laugh at me!" I said, "This is huge, my whole world is affected, I'm just looking for answers. Will B12 shots help me?". "No, B12 shots won't help you. You just need to wait and see the rheumatologist".
A few months went by. I spent a majority of this time in bed. The roaming foot pain continued every day. It was different each day. It was in a new spot, with a varied intensity, each and every day. I had night sweats, fevers, fatigue, and nausea. There was hardly an ounce of energy in me. That appointment with the rheumatologist could not come fast enough!
I saw Dr. wierdo in the morning. The office was dark. The patients looking for narcotics lined up at the reception desk and complained about having to come into the office because of the new policy. They complained, but they continued to line up. When the nurse called me back an hour and a half later, I was a little surprised to be asked to take all my clothes off. I think it was a mistake to decline. "I have feet pain" I said, "why do I need to strip?". The Dr. came in a little irritated with me off the bat. He quickly asked a few questions, ordered tests and sent me on my way. I had NO ANSWERS. My follow up appointment was scheduled three months out. What the hell was I supposed to do until then?
I took all my orders like a good patient. I had all the labs completed as well as lung x-rays and nerve conduction test. Three months later, Dr. wierdo told me I was fine. BUT I'm NOT fine. My life is nowhere near what it's been for forty years. I think my immune system is having problems. He smiled, "your immune system is fine". But if you need to come back and see me, please make an appointment.
I would have been crushed at this point, but I had already made an appointment for a second opinion with Dr. Bennet, a rheumatologist with 20 years experience. I held out hope for answers from him.
He saw me a month later. He told me that my tests are concerning. Especially my C-ANCA being elevated. He wanted to not take action now because biopsies are invasive. "But why is my life so different now?". "You might develop Wegener's" he said. He didn't order any further tests, but wanted to see me every other month for monitoring. I understood. But I didn't understand.
Since then, I have been reading, and researching. I call him with new symptoms. Since then I have had blood in my urine to be dismissed at kidney stones. I didn't have kidney stones. "Well, the test strip must have been defective." TWICE. I have had throat infections and a clogged eustachian tube. "There's no need to see an ENT, just go back to your PCP Dr. for treatment". I questioned the nurse three times about it being related to my C-ANCA and arthrialgias. At one of my follow up appointments I told him about a facial rash that comes and goes. "It sounds like acne", he said. I'm forty years old and have one or two pimples per month, maybe. It's not acne. But thank goodness I thought to take a picture with my cell phone. I showed him. He raised his eyebrows. "That's not acne, but related rashes are on the limbs and STAY". Another follow up appointment I brought my husband so that he can help me decipher what the Dr. was doing or saying. It was at this appointment that Dr. Bennet told me he thinks I'm developing Fibromyalgia. He says "the leg, knee, and hip pain are not related to Wegs", he also said "stress can cause this type of pain" and proceeded to tell me to try not to think about it so much.
I'm stumped. This man has excellent experience. He seems intelligent. He's seen only one Wegs patient and "she got sick really fast". She also had classic symptoms. I don't think Dr. Bennet believes I'm sick. I have asked him multiple times why ones life would change so drastically and why there would be constant pain in my limbs. He has no answers. But wants me to do nothing.
This post is way too long. I'm going to end it here. I'm exhausted reliving it all. I'm also tired from being sick. My hands hurt. In addition to constant eustachian and ear pain, the palms of my hands and soles of my feet are having a pins and needles tingling in them, all day. That same sharp pin pain is manifesting in the only two moles (skin tags) I have. One on the back of my neck, and one on my lower back. Why would the pain go there? For the last 48hrs I've had a rash on my nose. It's quite festive, with Christmas and all.
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