Anyone who follows me on Social Media probably knows that I heavily struggled with whether or not I should go to the Mitochondrial Medicine Symposium last week. At first I had decided I was not going to go because things with the girls were pretty up in the air. Especially considering Nora's recent illness. However, after I made the decision, I was very depressed. Being at the Symposium is one of the only times I get to see any of my Mito brothers and sisters.
Some of you would probably ask why in the world I would call them that. After all, most of these people until two years ago were just people I spoke to online. But they have become my family, and my lifeline during life's biggest trials. They get it. They get it more than anyone else. During Millie's life and death, they were the people who "held space" for me. No, they were not there in person. But they were just there. We could be on the phone and they didn't have any words of comfort but just hearing their voices somehow cushioned the blow a miniscule amount. People with Mito are a rare breed, not just because we have a rare disease. You see, most of us have been to hell and back a number of times. We've had doctors not take our illness seriously, or even play around with our lives. This is a common theme and basically everyone I have talked to with Mito has dealt with this in one form or another. Anyway, my point is I love them and some of them are more family to me than blood relatives.
And somehow, some way, God knew that the Symposium was where I needed to be. I have been burning the candle at both ends for years. And yet I can not just say I don't want to do this anymore. Well, I guess I can but it doesn't do me any good. I have been working toward a major crash for a long time. With the travel, the heat, and everything else the perfect storm was created.
And damn it was bad.
My first strike was going to Day on the Hill. I really wanted to go because I have always had a heart for advocating for rare disease. Last time we went to the Symposium I elected not to go and now I know why. The heat was the killer. And yet there was a silver lining.
After the drama of it all, one of the most well known Mito doctors in the country came to the room I was in. She noticed that I was not feeling well. I was done with Day on the Hill and we were not supposed to leave for another two to three hours. She asked me if I wanted a ride back to the hotel. I almost had to pinch myself, but I had no energy. I accepted her offer. During the 20 minute car ride, I told her my story. How doctor after doctor had denied the existence of my illness, and even tried to say that it was all in my head. I told her about my girls. She told me that I should try to get in to her clinic. It's out of state but I am going to try. After I got back to the hotel, my friends and I had supper together. That's the great part, we can just get supper together like nothing. It means so much. I know it sounds silly but this is why I go.
Friday was by far the most difficult. My body spiraled out of my control. The ambulance needed to be called. But again I was under the care of one of the best Mito doctors in the country (a different doctor than previous but one who has helped me before:. My best friend went with me to the hospital, but while she was calling Justin, he had his own news to share. At the time my body was spiraling, so was Nora's. She was on her way to Sioux Falls for yet another infection. I was very minimally aware but I heard Justin tell Devin the news and I just sobbed. I had no energy but the tears and the sobs came out of me. Whatever energy my body had left was making my mind go crazy. I was scared. Scared for myself, scared for my baby.
The hospital was a nightmare. It was incredibly busy. They had traumas coming in left and right. They had started and IV in the ambulance and then my fluids were turned off on arrival to the hospital. While the staff was tending to other trauma cases, I was left fasting for hours. For those of you who don't understand Mito, I'll clue you in. Mito patients should not fast. It is not safe. It can send our bodies into crisis. Well, my body was already there. The nurse I had was...well...horrible. She was disrespectful toward me and my friend. She told Devin that I was an adult and could speak for myself. While she was not wrong, I was not in any shape to try to speak more than a few word sentences at a time. The fatigue was through the roof. I didn't have the energy to fight. They tried to admit me but I refused. The nurse then turned to me and said "Do you feel capable of making your own medical decisions?"
To some of you that may seem like a harmless question but to those of us who have Mito it's a huge red flag. It often means that they are going to try to appoint a proxy for you to take charge of your medical decision making. Once that is done it is difficult if not impossible to get that back. After the nurse left my room, Devin and I were trying to figure out a way to get me the hell out of there. They finally did turn my fluids back on, and eventually gave me Dextrose fluid (sugar) which allowed my body to recover somewhat. However, the staff tried three different times to bring me upstairs to be admitted. I refused. The nurse came in and said "I hear you don't want to be admitted." with an attitude the size of Texas. I told her that no, I did not want to be admitted. She scoffed and flew out of the room. I am sure she was under a lot of stress but I did not need that. Devin and I finally decided to call in reinforcements. We needed a tiger mom. So we called a close friend of ours. She was prepared to go to bat for me but she also wanted to try to be as quiet and respectful as possible. I do know that had they tried to pull something she would have let them have it. She herself also has Mito. And, like all of us with Mito, she has her limits. She had about an hour where we could try to troubleshoot. We did finally decide that we would discharge Against Medical Advice if they made us. However, that ended up not being necessary.
By the time all was said and done, Devin and I had been there for over six hours. I finally was given the D10 I needed all along, and as a result was feeling better. However, I was not pleased about my experience, and very worried about Nora. I felt so guilty for leaving her. The truth is it probably would have happened anyway, but that doesn't take away the guilt. We then tried to determine if there was a way for me to fly back home a day early. Unfortunately it ended up costing more. I was able to fly from DC to Denver and then to Sioux Falls. The whole thing was absolutely exhausting, and I absolutely hated to cut my time with my Mito family short. There is just something so magical about being together. I am hoping and praying that I will be able to make it to next year's Conference.
As of now, things are still kind of difficult. I definitely have not completely recovered. I am completely desperate and hoping so much that I will be able to get to this clinic with doctors who take my illness seriously. It is out of state so I would appreciate all of the prayers, thoughts, and good vibes y'all could send my way. It is a scary thing to have hope but also a good thing.
Next week will be very busy. Justin has appointments in Sioux Falls and then I have an Endoscopy on Tuesday. This will be a surgical procedure and as difficult as that is we are hoping that this will lead to some much-needed answers where my GI symptoms are concerned. I am so heartbroken at the lack of progress I have seen in the past couple of years. The truth is I have been at a stand-still with progress for several years now.
Nora is largely on the mend but still not back 100%. She continues to be on antibiotics but we are very grateful she is home. Unfortunately Lydia has a very inflamed bug bite which she is now on antibiotics for. Never a dull moment here. Hopefully I will get around to updating sometime next week depending on how things are standing. Thanks for checking in!
No comments:
Post a Comment