Thursday, January 5, 2012
Dear Reader, I must beg your forgiveness. I have not blogged in a very long time. When I started this blog I intended to blog every day. I endeavored to come up with something comical or whimsical to share on a daily basis. At first it was easy. Then it wasn’t so much. I can use the excuse that, as an artisan jeweler, I got overwhelmed with Christmas orders. This is partly true; I was busy filling Christmas orders. I can say that I was concentrating on getting my Etsy store well stocked. Again partly true. Upon much reflection, I realize why I stopped writing.
I think writing requires a bit of honesty on the writer’s part. My blog was happy-go-lucky. It was a nice charade, a nice distraction while I figured out what was going on in my life. So dear reader, in a moment of soul baring I will tell you my story. If you want happy-go-lucky, please stop reading now.
Last March I was at work, which was at a university. We were in the middle of spring break. I was mid-sentence with my student worker when I had to run to the bathroom. I will spare you the gory details. I went home, thinking I had the stomach flu. Oh how I wish that it had been the flu. March 15th (“Beware the Ides of March” they say) was the beginning of my own personal hell.
I didn’t get over “the flu”, and the abdominal pain sharpened and settled into my right side. By the next Tuesday, I was still not feeling well. To my doctor I went. And so the theories began, along with all kinds of tests. When my GP ran out of ideas, I was referred to a gastroenterologist. At this point I also had to medically withdraw from my Master’s program, which was a blow to me. I don’t quit. I stick to it, I grin and bear it, but I don’t quit. But in this case I had no choice. I was still running a fever, and feeling sick, and no one could tell me why. I’ve suffered from kidney stones since I was 16. I know pain, I can handle pain, I get through it (let’s go back to that not quitting thing). There are not words to describe the pain I was in all the time. Pain so bad I couldn’t sleep. I read a LOT of books. What else do you do at 3 AM? The last test my gastroenterologist ran was a scope down my stomach. Turns out I had a hiatal hernia. That would account for the heart burn, but not the fever and abdominal pain. Then my facial drooping and tremors began. My gastroenterologist sent me to see a neurologist. More tests. The only thing this doctor could come up with was my clotting factors were through the roof, my ANA was high, and had a vitamin D deficiency.
I’d been gone from work for a while and as you can imagine, my employer wasn’t happy. So back to work I went. Just getting ready for work killed me. Shortly after I returned to work I had a follow up with my neurologist. During the appointment he had a hard time getting a pulse. Then he listened to my chest and looked up at me said, “I need you to go to the ER right now. You’re in tachycardia.” Across the street to the ER we went (thank goodness my husband was with me). More tests and a few drugs later, I was still in tachycardia and the ER doctor was shrugging his shoulders. No idea why my heart was beating so hard and not responding to pain killers or antianxiety drugs. If I wanted, he could admit me or I could go home. Since you took 16 vials of blood and came up with nothing, I’m going to go home. Thanks for playing. I went to work the next day over my husband’s emphatic protests.
I went back to my gastroenterologist and begged for pain pills. He wrote me a prescription for another antacid. He also referred me to an endocrinologist. I went back to my GP and begged for his help. Due to some family history, he sent me to a hematologist. The endocrinologist was a bust. The hematologist ended up with a 25 page lab report. She confirmed my ANA was high. She performed a lot of other tests that showed I had an autoimmune disease. She also tested for all of the “common” ones. All negative. She did get a positive on something called CREST syndrome. She had no idea what it was. She had to Google it to find out what it was. Long story short, CREST stands for five symptoms: Calcinosis, Raynaud's phenomenon, Esophageal motility disorders, Sclerodactyly, and Telangiectasia. My hematologist sat there and apologized. She had done every test she knew to do. She was at the end of her knowledge. She said it was going to take a very knowledgeable rheumatologist to figure this out. Who did she recommend? She told me a doctor at UTSW. Awesome, a sister university to the one I worked for. For the first time in months I had hope; maybe this guy was the key. At this point in my story we are in mid-July. He had a cancelation and I was able to get right in.
My appointment came. I had to fill out all kinds of family history paperwork. I had stacks of test records. The doctor sat and listened to my complaints. He said he had a couple of theories. Ordered more tests and scheduled a follow up in six weeks. He was a busy and popular doctor. I didn’t want to wait six weeks for answers, but as long as I got answers I could grin and bear it. I had gotten into the habit of having someone at my appointments with me. Someone who could also listen to all the technical jargon. My follow up fell at the end of August. My husband is a school teacher and we didn’t feel comfortable with him taking a day off so early in the school year.
My mother offered to fly down to go to my appointment with me. My follow up appointment came. After going over my test results and telling me what I didn’t have for 20 minutes, he finally concluded there was nothing more he could do for me at that time. I was in shock. I plead with him, begged for help. I was told (and here’s the kicker) “I don’t have a magic potion for you.” I didn’t ask for magic, I asked for help. I cannot tell you the despair I felt in that moment. Five-and-a-half months had elapsed after I first got sick and I was still no closer to an answer (or so I felt).
Since I was going to have to miss work anyway (something I hated to do at that point), I also scheduled an appointment with my GP. I was already on a lot of medications trying to control this or that and one of them required I get a blood test every six weeks to make sure it wasn’t harming my liver. I got to my GP appointment and told him how my rheumatologist appointment went. Bless my GP, he’s a great doctor if you have the flu or the sniffles, but he’s a GP. Sensing my despair, he decided to throw a couple medications “against the wall” if you will and see if they helped. He first put me on a sleeping pill, so I could at least sleep. He also put me on an antidepressant that was known to also help with nerve pain. They may not have been magical potions, but boy did they improve my quality of life.
I cannot tell you how good it felt to one - get a full night’s sleep and two - not be in pain. This helped for a few weeks. However, my tachycardia still wasn’t solved. You know how you feel after you run, or do some kind of hard exercise? When your heart is beating really really fast and you need to catch your breath? Imagine feeling like that, 24 hours a day, 7 days a week. Imagine this going on for months. Any type of physical activity exhausted me. Walking from my car to my office was a daily nightmare. However, my pain was better, so I was going to take what I could get.
I made this work until October. That was when my body said, “That’s it. I’m done.” I couldn’t get out of bed. There was just about nothing that could motivate me to give up lying flat on my back. Hunger and thirst were not motivation enough. My house is not large. The kitchen is about 40 feet from my bedroom. It may as well have been in China. I made one trip to the kitchen a day. That one trip was in the morning to give my diabetic dog her insulin. My husband would get her at night. I would eat when my husband would get home from work and would bring me something. I returned to my GP. I told him how exhausted I was. He took my vitals and said, “Well, with your heart beating as fast as it is, it makes me tired just listening to it.” It was going so fast he actually had to get a finger monitor to get a count. He then put me on a 24 hour halter monitor to check out the rhythm. Not that it did much good. You are supposed to live your normal life while wearing the monitor to get the best picture of what is going on. I couldn’t get out of bed.
My rhythm was normal, just very fast. I was sent to a cardiologist. In case you are keeping track, this is doctor number seven, if you don’t count the ER doctor. I first had the joy of going through tests including a Balke protocol stress test. I wanted to die. Finally I got to see the doctor. Normal rhythm, everything is fine. I asked why it was beating so fast. The doctor had no idea, but come back if I needed to see him again. I think he was late to a golf game or something. He literally did not spend two minutes with me.
Back to the GP I go. He was not a happy camper. He apologized for sending me to that cardiologist. He then put me on a beta blocker to bring my heart rate down. Talk about magic potion! One pill and a good night’s sleep and I felt….I felt like me. The beta blocker prescription was given to me on Halloween. Seven and a half months since I had gotten sick.
The beta blocker didn’t come in time. I lost my job in early November. Who can blame my employer? I went from model employee to an employee who was never there and had wild tales of illness. Who would believe a tale of doctor after doctor blowing you off? I wouldn’t, but I know it to be true; I have experienced it firsthand.
Losing my job was devastating. Anyone who has ever lost a job can tell you how hard it is. For me, it was the last thing I had. Since March, I had given up on my Master’s. I no longer made jewelry, something I LOVED to do. Months went by and my studio went unused. I wasn’t a wife to my husband. Cooking, cleaning, and the care of our home fell completely on my husband’s shoulders. Most of it I simply could not do. I stopped being a sister to my brother who is in college here (the one I use to work for). He has Asperger’s and needs help from time to time. My job was the last thing I was doing (although poorly). It was the last thing I had…or at least it felt that way. Whatever disease I have robbed me of everything.
God bless my husband. He has been a rock through this whole journey. The irony of losing my job when I did was finally having all my symptoms treated. It was also a blow to lose my health insurance. COBRA is about $500 a month. To get on my husband’s was going to be even more.
So now what? I really don’t know. I had a job offer. I was going to take the job. But I’m still not 100%. I have good days and I have days where I’m really tired. I still have nights (even with sleeping drugs) where I can’t sleep. I thinking working a job right now would not be good for me or the employer, and my husband agrees wholeheartedly. So, I do my jewelry. I’ve started to sell it on Etsy. My jewelry business had always been a side thing. Now I’m trying to grow it into a successful small business. It’s a lot of hard work, but the upside is, I can’t fire myself. I can work nights and weekends when I feel like it. I can stay in bed when I don’t.
So, dear reader, why am I telling you this? One, I think confession is good for the soul. It has been very therapeutic for me to write this. I thank you if you have read it this far. But I have ulterior motives for writing this as well. A few nights ago I couldn’t sleep and was surfing the net, looking for information on CREST (the only autoimmune I really have to go on at the moment). While I don’t hold a medical degree, I must say the pieces fit. I ran across a message board for people with CREST. I read it in tears. For the first time, I was reading post after post that could have been written by me. Symptoms I have, not being able to get out of bed, job loss. As heart-breaking as the stories were, I found comfort. One – I had validation that I wasn’t crazy and two – I wasn’t alone. My husband and family can tell me they’re behind me, but they aren’t living it.
My other ulterior motive is I can hope that a doctor or a medical student, or someone else who has CREST can tell me who to see. From what I’ve read, it’s hard to diagnose because it’s not common. For the longest time I’ve wished there was a real Dr. House, someone who can put my puzzle pieces together. Now I just have to hope he or she reads this.
Thank you for reading – I hope to see you tomorrow.