Several weeks ago my Dr looked at me and said, “I wonder if we should send you to the Mayo Clinic.” My first reaction was, “Isn’t that a bit drastic?” I felt that sudden drop in your gut when your body viscerally reacts to something; you know the feeling like you’re on a roller coaster only it’s an emotional one. He told me that I might benefit from a place where instead of meeting with individual specialists for this condition or that, I would be seen by a team of specialists who would collaboratively look at my whole body. Before making any final recommendations he wanted to see all of my medical records. I laughed at that; he had no idea what he was getting into. He sent me out to his front desk to complete the necessary paperwork for gathering said records and 20 minutes later he was surprised to see me still standing there rattling off names and contact information. Once the nurse and I made it through my address book I made an appointment to return a few weeks later to discuss my options. To be honest I left his office in a bit of a tail spin.
I feel at this point that I need to expound on my experiences with Drs. I have found that surprisingly very few will actually listen to you and hear what is really going on. For years my symptoms have been ignored or dismissed by various medical professionals. I think that oftentimes they forget that, while they have the formal education, YOU are the one that lives, breathes, eats, and sleeps in your body. Sometimes they are almost belligerent about the fact that you might actually know more about what you’re body is going through than they do. I would go see a Dr only to have them brush me off halfway through my explanation and attempt to come to a hasty decision so that they can rush off to the horde of patients piling up in their waiting room. It is so frustrating when you don’t feel validated and you know that there are things going on that just aren’t normal. I suspect that many people who, like me, suffer from autoimmune disease have similar experiences. Autoimmune disease can be very difficult to diagnose because your symptoms are transient and unpredictable. You can go for weeks, months, or even years without a single issue and then without warning things start to fall apart.
The other challenge I’ve had is that my body is not very forthcoming with information in the traditional way. Let me explain. Drs are hooked on tests whether it’s blood tests, diagnostic testing, imaging etc… Most often they will listen to a complaint, order some type of test be done and then rely solely on the information in that test to determine the next steps. That doesn’t always work, especially if you have an autoimmune disease. Sure there are blood tests that check for these diseases but the Rheumatologist I see now is thankfully aware that these tests are not always reliable and they never tell the entire story.
For example, I’ve mentioned in a previous post that they removed my gall bladder. Since I was a teenager I’ve had these painful attacks that would only occasionally happen after eating a big fatty meal. In the Dr’s defense I was also experiencing symptoms of undiagnosed Crohn’s disease and it was difficult to isolate what exactly was going on. However, they sent me for test after test to check the function of my gall bladder. Everything, and I mean everything, came back normal. My gall bladder looked all right on ultrasound, the HIDA scans all came back within normal range. I had stomach emptying studies done that were also within the norms. This went on for a couple of years until finally my GI specialist told me that we’d need to remove my gall bladder. This is what I had been asking for all along. I just knew that therein lay most of my issues at the time. I kept telling them this, but Drs don’t react well when you tell them you have a hunch. They’re trained to look for trends, facts, and numbers that can be verified so “hunches” typically don’t count.
When the GI Dr finally said to me, “I think the only option left is to have gall bladder surgery,” I gave her a look that was meant to say, “Well DUH!” She, however, interpreted this look to mean that I was hesitant. I’ll never forget her patting my knee and saying, “Well sweetie, if it has to come out we just need to get to it and stop your suffering, you’ll be all right!” Talk about biting my tongue until it bled. I thought, “You’ve got to be kidding me, right? After thousands of dollars and grueling tests all while you’ve ignored MY pleas to remove the dang thing and you think you have to convince me it has to be done?” So off I went to surgery at which point upon opening me up they discover that my gall bladder is in fact diseased, very diseased. What do we learn from this? You know your body better than anyone else, don’t ignore the hunches, don’t write off those “gut feelings,” and don’t ever let a Dr make you feel that you don’t know yourself as well as you think you do!
I’ll retreat from my soap box and return to the question of the Mayo Clinic. When this Dr said he’d look over all of my records I was worried that his response would be the same as Drs before him. “Your numbers look fine therefore I’m not sure why you’re here.” As for the idea of the Mayo Clinic I was overwhelmed. I knew that there was no way my insurance company was going to accept this without a fight, not to mention the scheduling conflicts that come with raising two young children and going to school. Then there was the concern of the medical bills which are already astronomical in addition to the funds necessary for travel and time away. I stewed over it for a while but began to warm to the idea. I think that I was looking for that magic phrase, “This is what we’ve found and this is what we will do to solve it.”
I decided not to dwell on it. I decided that as I waited for him to look over my records I was going to continue to take one day at a time, one hour at a time, even a minute at a time and just allow things to be as they would. I figured that if I was meant to go, things would work themselves out. I didn’t want to stress about it until I knew for sure that I was headed in that direction. I’m proud of myself; usually I would have been researching, obsessing, and attempting to answer the unanswerable questions in the mean time. The time for my follow up appointment came and my Dr ended up having emergency gall bladder surgery. Oh the ironies of life! So we postponed the appointment a week. Again I went through the mental exercise of adjusting expectations and putting the churning thoughts on the back burner.
As the weeks passed I had come to the conclusion that I wanted to go. I wanted answers. I wanted someone to look at me and say, “You don’t have to live like this, I can make it better!” For some reason I had latched onto the idea of the Mayo Clinic as my beacon of hope. I was determined to remain positive and upbeat holding onto the thought that somehow they could “fix” me. I’m tired of the continuing stream of diagnoses, the pain, the fatigue, and the constant trips to the bathroom. I’m frankly worn out emotionally as well. It is taking a toll on my husband, children, immediate and extended family and friends. I am tired of being a burden.
So there I was driving to the appointment and I just had this feeling that I wasn’t going to hear what I expected or wanted. Somehow deep inside I knew that I needed to once again wipe my slate clean of all preconceived notions and expectations. Here is what happened. Because of his surgery he hadn’t had the opportunity to read through my files. I walk into the exam room where I wait a very short time and he follows me in with a huge file under his arm. This file contained, by my best estimate, probably over 800 pages. He plunks this down in his lap and proceeds to read. I sat there in silence while he quickly scanned over every page, occasionally making notes, for about an hour. After about 20 min I decided to pick up my book and read in companionable silence with him. Why not? It was the strangest experience I have ever had at the Dr’s office, and I have had some weird things happen at the Dr as you can well imagine. What came next surprised me a bit. He put everything down and said, “Well we know for sure you have the following diseases.” I won’t bore you with the list, you know most of them already from my blog and I plan to write about the rest eventually. He continued, “Your records show that you are living on the ‘edge’ of several other autoimmune diseases as well.” Huh? Seriously? “What this means,” he says, “is that it appears that your tests have been misread or ignored by other Drs because they aren’t necessarily positive for these diseases but the numbers certainly show that you are trending in the wrong direction.” Now I’m feeling angry and yet oddly vindicated when I think of all the Drs who so easily dismissed me. He goes on, “It is as if your body is trying to hold these things at bay and it may yet succeed, but you could also go in the other direction.” Deep breath, another deep breath, I’m feeling the panic rise a little. He keeps talking, “If we can control the complications of these diseases I think we can keep you going, but to be honest, there are going to be many days when you wish were…” He leaves me hanging here with a hand gesture and I finish his statement for him, “…that I wish I were dead.” He nods.
My ears are ringing at this point, who knows if it is the Meniere’s disease or the emotional stress I’m feeling. It doesn’t matter; I’m struggling to readjust my mental state. I ask, “The Mayo Clinic?” I should mention at this point that I have started a medication to help keep my flare ups under control. It is a biologic called Humira, I’m sure you’ve heard of it; more about that later. He tells me that I should continue to take this drug for another 6 months, see how it goes and then we will make a determination in regards to the Mayo Clinic.
Another six months, another exercise in putting those churning, stressful thoughts on the back burner. I can do this; I’ve done it for a few weeks now. In truth it is better because I don’t want to take a hiatus from my schooling right now to make that trek anyway. I’m absorbing this information when it dawns on me to ask another question. “What if I go to the Mayo Clinic and they say the same thing you just did, we know what you have, we know what your body is resisting but there really isn’t much we can do about it?” He looks me dead in the eye and says, “That may very well be their answer.” There is that “stomach flip flop thingy” happening again.
I leave the office with mixed emotions. I’m not quite sure how to feel. I don’t much like the sit and wait approach to life. I am a go getter. I see a problem and I fix it. I “fix” it with a vengeance; I “fix” it so thoroughly that it will never be a problem again. I immerse myself so fully into “fixing” it that it becomes my magnificent obsession until it is thoroughly and properly “fixed!” You get the idea… That is when it dawns on me, I can’t fix this one. No one can, not even the Mayo Clinic. It hits me that I have put all of my hopes of a better life into hearing someone say that they know how to fix this. I realize that this is why the Mayo Clinic has become my beacon of hope and now that hope is just a little tarnished by the fact that they probably can’t make it all go away either.
In the hours afterward I began to recognize that what I really needed to do was adjust my expectations in an entirely new way. The years and months leading up to this moment were spent with the thought that if I just found the right Dr, if they did the right test, I would eventually get a different answer. “Yes, you have these diseases, but we can help, we can make it better, I can make all of your dreams come true and you will be able to function again! Oh and just for fun we’ll send you all on a Disney Cruise vacation for your trouble!” You see how unrealistic I can be at times?!? This time however, I realized that I’m going to need to move through some grief as I accept the fact that life is different now. That it will be different from now until the day I die. Coincidentally I started to remember other Drs expressing the same idea, albeit in different terms, that these physical infirmities weren’t going away and they would make life more challenging. My own Rheumatologist who really understands and listens to me conveyed his sadness at having to deliver the news he was delivering when he said, “I’m so sorry, life just isn’t fair. This is going to be rough.” I think I tuned him out in that moment not wanting to accept that I would have to make the adjustments he was suggesting I make.
This is where I leave you today. I’ve decided that I can wait on the Mayo Clinic; I may even decide that it makes no difference what the Dr recommends, I just don’t want to go. I am really ok with it because I am going to work through a more realistic mind set in the mean time. This won’t be easy for me. Limitations don’t sit well with me, I hate them and I hate being told that I have to live within them. Here is my goal. As I come to accept the confines of these difficult circumstances I am going to attempt to find the positive but I am also going to be more realistic in facing the hard days understanding that they will come. I know that sounds trite. I realize that it won’t always be easy. However, instead of viewing my life as if living in a physical prison I’m going to find things that aren’t limiting and enjoy them. I’m going to change my perspective and learn to accept the hard times and find joy in the good times. When it hurts, and it will, I am going to give myself time to recover. I’ve learned over the years that there will be highs and lows, times of great joy and times of bitter disappointment, you can’t avoid them. I’m going to need time to grieve the loss that accompanies my situation. I’ve done it before and I can do it again. Wish me luck, I’m gonna need it! In the mean time we’ll “Hold the Mayo!”