What a whirlwind I have been in lately. I honestly don't even know where to start. As I sit and stare at this monitor trying to figure out how to get this all out.......
After the scopes last month and the follow up appointments I had, I still felt like I had nothing tangible to hold onto. My mind compartmentalizes everything and tries to rationalize everything. In reality, that is impossible. Not everything in the world has a rhyme or reason. Not everything is fair, and nothing is black and white. Why, then, does my mind torture me this way? I don't know, but I try to laugh it off and keep a grasp on reality. As you can imagine, this is a challenge.
My most recent visits have left me with a few more answers and a plan of action. I guess that was the hardest to come to grips with, I had no plan of action to follow. So, with no easy way to explain things I will do my best. It is so cathartic being open and honest and laying it all out there. I don't feel like I have to explain or defend myself all the time, even if no one reads the blog. It's out there.
Digestive issues have only progressed in recent weeks. Although I have been through all the testing that would uncover a clear diagnosis, I am usually the exception to that rule. A diagnosis of chronic gastritis and pernicious anemia was clear. The colon, however; has inflammation, but there is no clear source or disease process. At this point it has been declared inflammatory bowel disease. Let me just say, the treatment for these is definitely something that takes getting used to. It is yet another life style change. Plus, I am doing, learning, and speaking of things I never imagined would be part of my life. I guess the thought of invincibility discriminates against no one.
It has almost become a daily torture. Not only is there a new set of pills and treatment I have to work into my day, but the symptoms continue. Not to the same degree, but they are there. It is unimaginable unless you go through it yourself. I actually worked with patients (when I worked) that had similar illnesses of the digestive system. I remember feeling so sorry for them because they looked miserable most of the time. I had the knowledge about the conditions, but never realized the enormity of it all until it hit me.
I have to admit, this has been the most traumatic and devastating disease process I have had to embrace. I imagine it like a stack of blocks my son would build. One block wide, with each disease diagnosis and treatment outline, add a new block. Once the stack gets tall it begins to sway and possibly crumble. My tower has tumbled. I have to pick up the pieces. I have to gather all the new information along with the lack thereof. I need to decide how I am going to stack these blocks in a way that they balance and hold strong as a standing structure. I am working on it.
This week, I finally saw an immunologist. This is supposed to be the doctor that gathers all the clues and puts them altogether to make a big picture. Everyone around me is so hopeful. Everyone around me is convinced that someone will find the source that links all these autoimmune diseases together. I, however; lack that hope. I have been to UNM. I have been to the Mayo Clinic. I have been to doctors and specialists all over. In the beginning they are all bull dogs. After a few tests are run and the doctor is left stumped, I have been tossed to the curb or the doctor has thrown in the towel. I pray this is not the case this time.
The doctor seemed, at first impression, ready to take on the task. He began testing right away. We did find out I am allergic to cats. That is funny because my parents had cats my entire life. I never knew. I am also allergic to several trees and grass as well as mold. My breathing is labored due to the inflammation in my belly. It was good to walk out of the doctor's office with some new information. I would imagine, since I went my entire life not treating these allergies, treating them may relieve some of the general symptoms I feel everyday. The other thing this new doctor did was decide to test my immune system itself. Can you believe that not one doctor has done that before? Many have tested for specific antibodies that are linked to specific diseases, but not one doctor has tested the function and activity of the immune system.
The lab tests were done yesterday. The doctor seemed eager to start this journey so he told me I would get the results once he got them. If need be, we will do more testing thereafter. They drew so much blood, I can't see how nothing would show up, but let's be realistic. We are talking about me here. I am the queen of going against the grain. I am a master at not fitting into the box. I am the outlier.
I make an effort not to get my hopes up. I do not have very much faith in science and medicine at this point. Those who practice this are merely humans. Mistakes are made, things are overlooked, bias is inevitable. I can only pray for the miracle of answers to come our way.
This Christmas season is difficult. My six year old son understands things more and more. We have spent months focusing on my health. Since Thanksgiving it has only become more consuming. We decorated our house. We have bought presents. We plan on spending time with family. I just pray his memories of this season are not tainted by all of this.
Merry Christmas and Happy New Year!
Wednesday, November 30, 2011
Tuesday, November 15, 2011
Step By Step
This is beginning to turn into a theme, much like my life has been for the past several years. Every few months things take a bad turn. Doctors usually are rendered clueless and boggled that something is happening again. They begin to search for answers, each time thinking we are getting closer and closer to the key that unlocks the mystery of me. I am always filled with this false sense of hope that the key will be found. I am starting to learn I need to find my hope elsewhere.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
I saw my rheumatologist yesterday. I really love the doctors I have on my side. They are all bulldogs. They are all compassionate. They are all grounded. I filled him in on the information I got from my GI doc. I always bring paperwork and lab results so that all my doctors are on the same page and have accurate information. As he looked over it all he just kept saying, "hhmm curious........interesting..........hhhmmm curious." I laughed because that is the way I am feeling. But he is the doctor, he should know more. I decided it is time I really start advocating for myself.
I am tired of seeing doctor after doctor. I travel up to 250 miles for these appointments on some occasions. I wait in the waiting room for 20 minutes or more. I sit in the exam room for 15 minutes or so waiting to see the doctor. The doctor comes in (whatever specialty) and does his work. That usually takes only 5 to 7 minutes. They sign a refill prescription and schedule a follow up appointment. Usually somewhere in the appointment the overlapping symptoms and such are discussed. Often times the doctors question each other or say what they'd do differently had that been their specialty. Never do these doctors talk to each other. So, yesterday I requested that my rheumatologist get on a conference call with my primary and gastroenterologist to bounce ideas off each other. I would like them to come to a consensus and work together. He had no qualms about it, so I felt successful. One step at a time.
Rheumatology is a specialty that is difficult. Often times people are seen by a rheumatologist with very vague symptoms that other doctors have ignored or brushed aside. With this knowledge, I asked. I asked all the questions that eat away at me at night. Not one doctor has flat out told me what they are looking for or what their brain tells them when they see my chart. They keep me on a need to know basis, and apparently they do not think I need to know very much until they have certainty on their side. "What could this be? What would the immunologist be looking for? What do you think is going on?" He answered. "I'd look into MEN syndrome which is multiple endocrine and could cause a lot of these autimmunities you have. Possibly Schmidt syndrome. It's hard to say." I was pleased he had a thought. I was pleased to know he was not clueless. The answer was still very vague, but there were words I could take and research. That's what I did.
I will not bother you with the definitions or explanations of these syndromes. You are more than welcome and capable of looking them up yourself. I will educate and speak more on them if a diagnosis is made. Ultimately, what I got from my conversation with the rheumatologist was similar to what I have gotten from several other doctors in recent years. Yes, we are coming up with answers, but we are treating what we can treat. We cannot replace anything or reverse or cure anything. Quality of life is what it is. I have been told to prepare my family that things will get tougher. We are doing everything we can do.
One step at a time. Each flare up gets us closer and closer to the full picture. I believe with each hurdle I am learning. I will come to a place where I can accept and embrace the totality of it all.....someday.
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