Life, as I Know it, Comes to a Screeching Halt!

In March 2009, I started working as a Technical Writer supporting the State of NC through a contracting position. I was actually hired to do a rush one day job, but these are a bunch of folks that I have worked with in the past, so it's like coming home again. I love working with them!

It wasn't long before I started developing symptoms that let me know I was becoming very sick. First, I noticed that I had four different types of rashes on my body and my skin began to itch beyond belief. From head to toe, I just was so itchy that I just wanted to crawl out of my own skin. One of the types of rashes appeared to be ulcerated and that was the one that worried me the most.

Next, I started getting quarter sized lumps under my arms, in my neck, and in my groin. The first time I saw them I KNEW this couldn't be good. I was fairly sure this is what you would find if had cancer.

Then I starte to lose weight very quickly. In any other senario, I would LOVE this. I was over weight and needed to lose, but in this case I was just sick.

Then the pain under my right rib began. This pain was worse than I could stand. I could feel my liver becoming enlarged and the itching in my skin increased ten fold. I couldn't sleep at night, I couldn't stand, sit, or get into any comfortable position at all.

I was trying to hold my life together all the while knowing I was in trouble. My daughter's graduation was coming up in May, and we were going to go to Florida to have her graduation ceremony. I had leased a vacation condo and we were planning on doing it up big. My daughter is my baby and I wanted to do something special for her.

A couple of weeks before we were to leave I saw my GP about the rash and the rest of the symptoms. I was trying to figure out what was going on with me, but I also wanted to be sure I wasn't contagious. I was going to be around a lot of people, including my grandchildren, and I wanted to be sure I wasn't going to make anyone else sick. The doctor said he didn't know what was wrong, but was certain I wasn't contagious and would be able to go on our trip.

The day before I was to leave, I was let go from my job...ouch...another big stab in the back!!! I had an immediate panic attack right there at my desk. I was sobbing to hard that I actually lost my breath and couldn't catch it back. I was about to pass out and then finally, I was able to take a breath. A friend was sitting with me at the time trying to comfort me. The look on her face was pure panic too. I knew I had to shake this off before I went home. It didn't matter that I was sick, it didn't matter that I had to deal with losing a job that I really loved; I had to hold it together for my daughter. She had one of the biggest moments of her life coming up and I was NOT going to ruin that for her. I told my husband about losing my job, but not her. Things were going to go forward as planned.

We drove the long trip to Florida, all the while I was in so much pain. I couldn't breathe, I couldn't get comfortable. By this time I had lost 25 lbs. in just two months. I knew I had to pull off a graduation and party within the next few days and I really needed to hold it together.

Fortunately, I was able to pull myself together and my daughter's graduation went off without a hitch. It was great fun for her and she smiled all week long. I was overjoyed for her and was glad that we made the trip regardless of what was going on with my defective body.

The first thing I did when we got home was to go to the emergency room. The doctor told me that she thought I probably was having trouble with my gallbladder. I couldn't understand why my liver would be enlarged with gallbladder problems, but I sighed with relief at this suggestion. She ordered xrays and bloodwork and then she let me go.

I hadn't driven more than two blocks when my cell phone rang. It was the ER doctor. I pulled into a parking lot and waited for the bomb to drop. She said, "I'm sorry to tell you, you probably have cancer based on the xrays." I began to shake all over and as tears flowed from my eyes making the world around me a blur, once again trying to catch my breath, I was alone and very scared. She continued, "You need to see a pulmonologist right away, make an appointment TODAY."

The next call was to my husband to tell him what happened. When I was done, I called my GP to ask them for a referral to a pulmonologist. I exlained what happened. I remember Kitty (my doctor's nurse) kept saying how sorry she was. It sounded almost like she was ready to cry too.

Within a few days I saw my pulmonologist for the first time. As we talked I began to calm down a bit. He seemed to think we could do a wait and see. Then he asked, "You haven't lost any weight have you?" Then I got scared again. "Yes, I've lost 25 lbs." He stopped in his tracks, turned around and the look on his face told me everything. I WAS in trouble.

The next thing I knew, I was seeing a thoractic surgeon and the words were falling out of his mouth..."You have lymphoma, and we need to cut into your lung and remove lymph nodes from your lungs and around your aorta."

I was shaking all over again. I went home and cried and cried. I could not be consoled. I figured this was the end of my life. I knew I felt sick enough for it to be just that.

So July 18, 2009, I went in for a VATS. That is a Video Assisted Thoractic Surgery. They cut into my right lung, removed the lymph nodes that they said they would and then made a new diagnosis. I have Sarcoidosis. It was explained to me later that this is the second cousin to cancer and could eventually become cancer. About 3% of all Sarcoid patients develope lymphoma. Some seem to go into remission, and some become chronic.

Since I had been previously diagnosed with Lupus (SLE) the year after my daughter was born, I was now being told that this had been a misdiagnosis and I was clearly a chronic Sarcoid patient. The doctor told me that it was just getting worse and that I might become one of the 3% but there was no way to know for sure.

Then the next bomb dropped. Two months after the VATS, I had to have my gallbladder removed. I was having such severe pain in my chest, I thought for sure I was having a heart attack. I went to the ER again and they did xrays and an ultrasound. They found stones in my gallbladder. I asked them, "Could this be the Sarcoid?" They assured me that it was not and that I needed to have my gallbladder removed.

So I made an appointment with the next surgeon. I asked him the same thing, "Could this be Sarcoid related?" He said, "You have to have your gallbladder out or you will die!" He wouldn't even consider that it might be related to the sarcoidosis. He was cold, matter-of-fact, and discarded my concerns completely. I was not comfortable with him at all but I let him take out my gallbladder. The results after the surgery showed that it was in fact granulomas from the sarcoid that were present in the gallbladder, not gallstones. I suspect that I didn't need that surgery at all and it has made my life impossible ever since the gallbladder was taken out. I can no longer be away from my home and haven't been able to hold a job outside of my home. I have applied for disability but have been denied twice now. I'm scared. We could become homeless because of the rubber stamping process that the government used on disabled persons. This forces people who are already suffering from illness and disability into severe poverty.

But I'm not done yet, two months after the gallbladder surgery I was told that I needed a biopsy on my left breast. This also ended up being sarcoid related. The doctor placed a clip in my breast so they would be able to identify where the biopsy was done in the next mammogram.

Six months later on follow up, the clip had moved. I found out that this was considered a bad sign. So now, the lump needed to be removed to ensure that it wasn't cancer. More surgery followed. Everything ended up being okay, but my body looked like I've been used as a science experiment. I have cuts, bruises, rashes, peeling, etc. all over my body. I am officially a wreck.

The most recent change is that the cartiledge in my left knee is gone. I need surgery for that. I also have degeneration of the spine, neck fusion, and lower back pain that radiates to the left. When the pain hits, I pretty fall to the ground. It could be anything. It could be degeneration of my disk, it could be kidney stones, it could be sarcoid in the kidneys, it could just be a pulled muscle. I'm afraid to see the doctor because I'm afraid to hear what he/she is going to say. I really HATE this.