One of the gifts my best friend, Becky, gave me for my collage graduation was Dr. Seuss' book, Oh, The Places You'll Go! At the time I thought it was funny that she would give me a book written for children. But, after reading it, the book is meant for any person in any stage of life. I read that book when I felt down. I read it when I was unsure or worried about making a big decision. I love it. I read it Tom even while I was pregnant with him. Later, he loved it so much I read it every night at bedtime for literally years. I have it memorized now and the pages of the book are soft and smooth from being touched so much. But I still read it every now and then. One passage is called, "The Waiting Place". The passage goes as follows:
The Waiting Place
The Waiting Place
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
NO!
That's not for you!
From November 2003, through May 2007, I was just waiting. That's not fair because it wasn't just me. My whole family was stuck in the limbo of waiting. I said in my first blog that I was going to share my experiences and what I've learned along the way, including both failures and triumphs. I have a flaw that governs every aspect of my life. It is the need to be in control. I'm a person who needs order, organization, and a plan for the future. I'm a list maker and I often find myself making lists of lists (i.e. Amy's list of things to do: make a grocery list, make a list of what to pack for a trip, make a list of bills to pay, make a list of Christmas gifts...it goes on and on) Being sick and then playing the waiting game took its toll and I found myself completely at the mercy of my body and the whims of doctors. I had no control and no say in this new life of mine. This is maybe the most important tip: Listen to your inner voice, pay attention to your body, and learn all that you can about everything. The smallest detail is important. I googled every possible diagnosis any doctor mentioned. I learned everything I could about every diseases remotely related to my symptoms. I continued to keep a diary that tracked my fevers and I added details about how I felt. Was I sick at my stomach? If so, what had I eaten? What time of day did I feel good or bad? (After a year of tracking it I found that my joints hurt more in the morning and would get better in the evening while the fever seemed to go up every afternoon without fail.) By doing all of this, the research and the diary, I felt like I gained some control. Also, when I would test negative for a disease, I kept up with it. That way, when I was sent to yet another doctor, I knew what I was talking about when we discussed possible diseases. I was proactive instead of reactive. Note: I've named Dr. Barnes and I will name other doctors in the future. Their names will only appear if they have helped me in even, any small way. Unfortunately on my journey to find a diagnosis, I have also come across doctors who have no bedside manner and can be cruel or who are so immersed in their research they can no longer see the patient behind the symptoms. I won't disparage the doctors. Instead, I'll say that I've learned something from them. That is, I am so busy fighting this disease, I have no time for negativity and no place for lofty egos. If I come across a doctor who can't or won't be a member of my team by communicating with other doctors, looking me in the eye, explaining what they do to me, answering the questions we, the family, may have, then I talk to who I consider my main doctor and we find someone else.
If you have an autoimmune disease, and you have yet to be firmly diagnosed, prepare to see a myriad of doctors. At one point, Dr. Barnes was looking for one disease that would answer all of my symptoms. The symptoms included fever, fatigue, joint pain, stomach upset, continual bacterial infections (usually upper respiratory infections and sinus infections). When we failed to connect the symptoms to one disease, I saw doctors that were specialized in one field. I had a pulmonologist for my lungs and an ear, nose, and throat doctor for my sinuses. It felt very much like putting a puzzle together. Each part of my body was a piece but nothing was connected. If this happens to you, request that each doctor communicate with the others. There's no sense in running the same test 4 times. For example, Dr. Barnes tested my blood, specifically components of my hemoglobin, called gamma globulins. There are several, and I'm not an expert, but the ones I know were tested on me was Iga, Igg, and Igm. Each component has sub-components and my IGG3 was non-existent for a while. You can bring those levels up with injections of gamma globulin or even transfusions. Each component of gamma globulin protects specific parts of your body. What made my case difficult was that while I mainly suffered with sinus infections and upper respiratory infections, the component I was missing (Igg3) is believed to be more related to the abdomen. We're still not sure what caused the Igg3 to be low. This is also an example of listening to doctor jargon and then doing your own research!
After exhausting local doctors, what we call "road trips" began. Living in the Montgomery area, I am close to both Atlanta and Birmingham. Those two cities house deep wells of medical knowledge in hospitals and they are both considered cutting edge facilities. I first went to Atlanta. Charlie and I went to Emory University and ended up in part of the Center for Disease Control. The doctor's main focus was autoimmune disorders, specifically AIDS. Fearing another "leukemia" drama, I immediately asked his nurse if I was referred to them because I might have AIDS. She assured me that while the doctor did treat AIDS patients, he was also a doctor for many autoimmune diseases. He ran more than 28 tests on my blood. I was tested for AIDS, West Nile Disease, Malaria... it all came back negative. At that point he told me that he couldn't help me anymore. So, Charlie and I came home and Dr. Barnes began to call doctors in Birmingham at UAB. One grouchy doctor, who saw me for my upper respiratory infections, treated me, put me on heavy antibiotics and then said, "There's something wrong with you and I hear what you say, but you can't prove it by me." That's when the self-doubt began. Self-doubt is something I still grapple with and it very often overwhelms me so I'll save that subject for another day. Until then, carry on and know you're not alone.
If you have an autoimmune disease, and you have yet to be firmly diagnosed, prepare to see a myriad of doctors. At one point, Dr. Barnes was looking for one disease that would answer all of my symptoms. The symptoms included fever, fatigue, joint pain, stomach upset, continual bacterial infections (usually upper respiratory infections and sinus infections). When we failed to connect the symptoms to one disease, I saw doctors that were specialized in one field. I had a pulmonologist for my lungs and an ear, nose, and throat doctor for my sinuses. It felt very much like putting a puzzle together. Each part of my body was a piece but nothing was connected. If this happens to you, request that each doctor communicate with the others. There's no sense in running the same test 4 times. For example, Dr. Barnes tested my blood, specifically components of my hemoglobin, called gamma globulins. There are several, and I'm not an expert, but the ones I know were tested on me was Iga, Igg, and Igm. Each component has sub-components and my IGG3 was non-existent for a while. You can bring those levels up with injections of gamma globulin or even transfusions. Each component of gamma globulin protects specific parts of your body. What made my case difficult was that while I mainly suffered with sinus infections and upper respiratory infections, the component I was missing (Igg3) is believed to be more related to the abdomen. We're still not sure what caused the Igg3 to be low. This is also an example of listening to doctor jargon and then doing your own research!
After exhausting local doctors, what we call "road trips" began. Living in the Montgomery area, I am close to both Atlanta and Birmingham. Those two cities house deep wells of medical knowledge in hospitals and they are both considered cutting edge facilities. I first went to Atlanta. Charlie and I went to Emory University and ended up in part of the Center for Disease Control. The doctor's main focus was autoimmune disorders, specifically AIDS. Fearing another "leukemia" drama, I immediately asked his nurse if I was referred to them because I might have AIDS. She assured me that while the doctor did treat AIDS patients, he was also a doctor for many autoimmune diseases. He ran more than 28 tests on my blood. I was tested for AIDS, West Nile Disease, Malaria... it all came back negative. At that point he told me that he couldn't help me anymore. So, Charlie and I came home and Dr. Barnes began to call doctors in Birmingham at UAB. One grouchy doctor, who saw me for my upper respiratory infections, treated me, put me on heavy antibiotics and then said, "There's something wrong with you and I hear what you say, but you can't prove it by me." That's when the self-doubt began. Self-doubt is something I still grapple with and it very often overwhelms me so I'll save that subject for another day. Until then, carry on and know you're not alone.
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