Learning from the past

Recently, I was introduced to an internet forum. I can't log in, but I'm in the queue for review. It will be nice to finally be able to communicate with these individuals. People just like me. The same, but different.

11 years ago I was pregnant with my daughter. I didn't feel right. It was my third pregnancy, so I had a good feel for pregnancy. I was a police dispatcher/911 operator at the time. I loved my job! But I couldn't function. It was difficult to hold my head up and concentrate, even my arms didn't work right.

I called the Dr. to complain about this strange fatigue. His response was that pregnancy is uncomfortable. Tired is a part of the territory. I wasn't dumb. But this was different. So a few weeks later, I complained again. They asked me to come in. He ran my blood work and was shocked to find that I was extremely anemic. He was shocked because I had been prescribed iron and should have been taking them. He was not happy with me. I informed him that I HAD been taking my iron! He looked at me a little sideways and ordered me to take more.

A few weeks later, there was no improvement. They checked my iron levels again. It was WORSE. I was confused, he thought I wasn't being honest, and I shouldn't have been able to stand. The levels were borderline for a transfusion. The office staff continued to repeat how important it was that I take my iron.  Well, I WAS taking it. He sent me to an oncologist to try to find out why my body wasn't doing what it needed to with the iron pills. The nice new doctor wanted to try over the cheap counter iron. I did. I immediately got better.  I learned there was a difference between the over-the-counter iron and the rx. Some people only absorb the over-the-counter without all the fancy hard-to-digest ingredients.

The OB doc is intelligent, and well respected. He saved my life three years prior. I wasn't ready to ditch him but I was mad at him for handling my situation the way he did. I sat down and wrote him a one page letter telling him exactly what I felt. He was the professional, I was not. I trusted him. I needed him to trust me. He took the letter well. He changed the way he treated me, and I get the feeling he also changed the way he treated other patients. We salvaged the relationship. He has since performed three more surgeries on me. I would recommend him to anyone.

I hope that I can do the same with Dr. Bennet. I'm prepared to find another mouth-piece for the new doctor in Utah if needed. But I think Dr. Bennet is a good candidate. He just needs to learn something new. Sometimes a Dr. in practice for 20 years might feel as if he already knows all there is to know. I hope he isn't one of them.

Sprinting

I'm in a race, I feel. A few days ago I began to feel a slight tightness in my chest. I breathed in deep a few times and it seemed as if my  lungs had the ability to fill with air. That was comforting. I tried to put the tightness out of my mind.

Yesterday, the tightness turned into a burning. Not a strong painful burn, but a dull ache. It reminded me of the feeling I got 24hrs after doing push ups. I haven't been doing push ups. I feel extremely tired, and turned out pretty useless yesterday. I also still have the rash on my nose, and the ear pain only peeps a few times a day. Just enough to remind me it's still there.

This morning, I awoke with a terrible pain and burning in the sternum area. And this time, when I took a deep breath, I got a sharp piercing pain under my right rib. I'm not gonna lie, I panicked a little. Mostly because I still want to believe, as frustrating as it is to do nothing, that I don't have the disease. My gut says differently, but I really want to believe I don't have it. So when the sharp pain continued with each deep breath this morning, I got sad, and then put it in gear and started moving around fast. I called both my primary care, and my rheumy.

The rheumy was oh so very disappointing. He's staff repeated the well versed song and dance about how he's not contracted with a hospital and therefore, has no hospital privileges. I don't care about that, that was NOT my question. My question was "at which hospital will I find someone with knowledge and/or experience with this problem?". They repeated the song and dance. I stopped listening to her after a few minutes and went to the x-ray place to have the picture of my lungs taken. I did make sure to tell the x-ray tech about my problem so that they can pass it along. She showed me what she typed: "Patient suspects WG from her own personal research". Nooooo... please don't type that! I clarified that both my primary care and rheumy suspect it. That I have elevated C-ANCA, and then quickly shared my list of symptoms. All that just so she could type a note to the radiologist... sigh... I'll know something in 48hrs.

That all took about 2 1/2hrs. I'm back home and feel better. Was it the movement, was it the Tramadol? I have no idea. I'm so sick of this! So so so sick of this.

I think, it started when....

I don't know if I broke my nose, or if it was genetics or both, but I had a NOSE. It didn't just have a deviated septum and a large hump, the tip was not supported and hung very low. According to the Dr. this would have continued to drop with age, and...well, it was already distorted plenty for my liking.

I'd never really thought of plastic surgery before. I accepted me for who I was. A man approached me on an airplane once and commented on my beautiful Roman nose, not to mention my husband being attracted to me as well. But something cool happens at my age. In addition to having a feeling of absolute contentment, I didn't care what anyone thought of me. I also realized I wanted to fix my nose for ME. With Paul's support, I went under the knife. The Dr. did a decent job reconstructing my nose.

I often think back and wonder about this time in my life. Did opening up my face in the operating room somehow re-wire my immune system or jump start it into overdrive? I suspect this was THE moment. But I have no way of proving it. Geez...I can't even prove I'm sick with a deadly disease right now. I can't prove that if I continue to live this way, without treatment, I will die within five years. I KNOW this... I just can't prove it, yet.

After my nose surgery, about 8 months later, I developed a terrible hip problem. It was a deep pain, sometimes sharp pain, always an ache, and sometimes it burned on top of it all. I used left over surgery medication to help me walk without pain. This lasted for months. I finally went to see a bone Dr. The pain wasn't so present that morning, but it was such an intense pain for months, surely he would see something on the x-rays. Nope, nothing. The Dr. returned to the exam room to tell me how perfect my hip structure was, all the while looking at me a little sideways. I don't know if he thought I was looking for medication or if he just thought I was crazy, but I felt d-u-m-b. Paul and I walked out of there, relieved that I did't have anything wrong with my hips.

When the hip pain left for a few months and then returned for a while I wasn't worried. I had perfect hips! The following year, I developed strep throat for the first time in my life. Forty years old and I had strep throat for the first time! It wasn't just any strep throat, it was an infection that would take 60 days and three rounds of antibiotics to finally get rid of. Ridiculous, absolutely ridiculous.

I was glad to get rid of the throat infection when my ear began to throb, and throb, and HURT. I worked through it for a few weeks, and finally went to the Dr. again. This time, he suggested decongestants. It was cold and flu season, so I had no reason to suspect anything other than I had caught a bug. I had no reason to suspect this might be related to my hip pain. I simply didn't know. Using decongestants to relieve the clogged Eustachian tube did the trick that spring. I popped them every day to avoid the build up.

Fast forward a year and this is where the story really begins in October 2010 with the foot pain. I can pretend the story starts there, but I know deep down that it goes further back. Very likely as far back as my nose surgery. I could be wrong. The truth is, it doesn't really matter when or what started it. I just need to find treatment now. Maybe once I'm on a road to recovery, I can let the cause take up space in my mind. It might help the fight against Wegener's someday. But for today, it's just an interesting thought  that I have.

Catching Up

What prompted the visit to my Primary Care Dr. last October was an odd walking-on-glass feeling in my feet. I had no other symptoms at the time. I was walking barefoot on the tile floor in my home. I felt a sharp pain in my foot that brought me to my knees. Desperate to get that foreign object out of my foot, I inspected my skin for glass or a splinter. There was nothing.

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.

Allow Me to Introduce My Story

Last year when my Dr.'s office called me to say my test results indicated I had Vasculitis, I had no idea what a long road I was headed on. If I did, I would have started a decent journal back then.

It's been 13 months, and I have yet to find a Dr. that will give me the proper diagnosis. This problem is common in patients with Wegener's Granulomatosis. To make things even more confusing, somewhere in the last 13 months, the medical community has changed the name to Granulomatosis with Polyangitis.... or something like that. I'll get it right one day.

It's important that I document my journey because I have a goal. I have a mission. Like many patients going through this, we are shocked to find the lack of knowledge and/or interest in research. We are shocked to learn of so many unnecessary deaths of innocent people. I'm appalled to find that the most common time for a proper diagnosis and start of treatment is when it's almost too late. When life is hanging in the balance. When major surgery for organ transplants are required to save a life. THIS IS NOT OKAY! My goal is to encourage patients to take control of their situations, to take required action, to do whatever they can to save their lives NOW, not tomorrow.

Six years ago, before I became ill, I walked into a Krav Maga training center. I was determined to gain strength, and skills that would save my life from an attacker. What I learned is invaluable, and although I have been unable to continue my training due to illness, I carry the fight skills instilled in me through hundreds of hours of intense training. I learned to stand strong against an attacker. I learned to face them, ground my stance, and guard my body. I learned to pay close attention to each, teeny tiny, movement of my attacker so that I can make my move FIRST. I always knew this fight training would save my life. Today, it is. I will stand against this nasty disease festering within my body. I will face it, I will guard myself from it. I have taken control from my local doctors, and I'm in the process of finding a specialist that will hear me, listen, and respond to my needs. I will not sit in the corner and wait for this to become agressive.

Follow my journey as I learn how to recognize active Wegener's Granulomatosis before it's too late.