What do you do, when no one knows what's wrong? When you try to explain, but no one gets it. When they think... "Maybe its in your head."
For the past year, my husband hasn't felt well. It started with dizziness, feeling nauseous, anxious, tired and many other symptoms. Since I have known my husband for the past 12 years, I know what he has felt like before. What he feels like when he feels good...when he has energy, when he looks rested. We have been to the ER, Urgent Care, to his primary physician, neurologists, GI's and even a holistic doctor- who talks to your muscles and asks the patients body what is wrong {that was VERY hard one for me}..you name it, we've been there. And all we have heard is... "We can't find anything that would cause all of this. We will just have to treat the symptoms." In case you didn't know, "treating the symptoms" means we'll give you several different medications and see if it works, even though we have no idea what is wrong with you.
To say we are frustrated is an understatement. It is amazing to me that doctors today dance around the fact that they might have no idea what is wrong with their patient. But I believe that if you are a doctor, it is your duty to refer your patient to someone who might know. Someone who might think differently. Someone who just might listen to the one symptom {that we have been saying for the past year} and run with it.
We chose to go to Mayo. If you know anything about the medical world- you know that Mayo is where you go if you are looking for answers. It is marketed as "the place" to go, when you have something serious going on. If no one else can tell you anything. You are told to plan for a week so that you can see specialist after specialist. Yes, those who have cancer go to Mayo. And I was so surprised when I told people what we were doing. The looks on their faces said it all..."You are what? Why would you do that?" It's funny how judgy people can be, when its something as serious as your health. Just because you don't "get it" doesn't mean you should cast your judgy eyes my way. Besides the fact that it makes me want to poke one of your judgy eyes out- its just not a nice thing to do.
We waited 3 months for this appointment and both took a week off of work and headed to Mayo in Jacksonville, Florida. I am a Type-A, organization is my game, kind of person. So we showed up that Monday morning prepared with all of our documents. 100+ pages of medical history, a medical timeline I made, MRI & CT results. You name it- I had it, or knew about it.
Fast forward to that Wednesday. I cried all 3 days at one time or another. Out of pure "I can't believe this is happening" frustration. Our first day at Mayo we saw only our Internal Medicine doctor. Why? Because they told us the specialists she was referring us to weren't available until Mid- October. OCTOBER. {this was mid-September}. We do not live in Florida. The blood work she requested was lost in the system. It was only because I marched my sobbing- IknowIlooklikemydogjustdied tail back to the registration desk and asked to speak with the Doctor again, that anything happened. That, and the grace of 2 receptionists that sat behind the desk that Monday. Word to the wise- if you ever, ever need anything- it is best to not be rude to the two who blink back at you with the computer mouse in their hands. These two became our advocates during this week. Because of them, we were worked into the schedule because they happened to know the floor supervisors. At one point we waited a total of 7 hours in a waiting room to see one of the specialists. SEVEN. Only to be told "you can go ahead and leave, they are done for the day."
Needless to say- we left Mayo 4 days later with no more answers then we had going in. We did finally see all of the specialists she recommended- but
only because I pushed and asked. And pushed and asked. I undoubtedly know that most of the people {many of the older generation} show up there with many of the same unanswered questions only to hear "They can't see you until mid-whenever." And with that, they turn around and go home. At some point in my life- I will become an advocate for these couples that I see. Because no one should ever have to wait in a waiting room on stand-by for 7 hours only to rudely be told to go home. I am writing this mainly for others who are trying to decide if they should make the decision to go to Mayo. It was nothing like I thought it would be. I thought it was going to be fast-paced efficiency. Where the doctor had reviewed his medical history- where a timeline would be laid out for us. Where specialists were waiting for us. When instead it was like starting over at a new doctor's office. Where we had to fight to get appointments to see them. Where if we hadn't befriended the two receptionists, we would have gone home without ever seeing another specialist. {We delivered cupcakes to them the morning we left.}
We are still in limbo- waiting for more results and more findings. Which we have accepted will most likely tell us nothing. We are so tired and exhausted mentally and emotionally. My husband works through everything- the Flu, strep...so its hard to know he doesn't feel good everyday. As time goes on we pray to find answers to the questions we have.
Moral of the story? Be your own advocate. Fight for the answers. Don't give up. Repeat.
