Lacking in posts for good reason...

I suppose that's kind of a cop out in a way. There is no shortage of topics to blog about right now. We are in a very different season of life that neither of us has ever been in. For starters, we are getting ready to be married. We both are not working right now, and we're adjusting to living in the same house. Honestly, that hasn't been that big of a deal. It's an adjustment, but everything in life is. The medical issues are not really being taken care of, and I don't really feel like it's really anyone's fault. I think it's because so much of my testing has not been done and we are not able to use the data from this testing to dictate our actions. Mitochondrial disorders continue to be poorly known and understood. No matter how much I try to educate people on Social Media and just in my every day encounters with people in general, it just really seems like I don't get anywhere.

I realize that I am extremely medically complex and that things can change for me very drastically. One day I can be doing OK and pretend to function in the world, and the next I can be nearly bed bound, barely able to take myself to the bathroom. People have such a difficult time understanding how I can feel so horrible and be so sick when I "look just fine." My pet peeve is when people look at me and say "Well how can you be sick, you don't look sick." Sometimes I realize people think I have a psychological issue of some sort and think that I'm faking being sick. Yesterday I saw something on Facebook that really resonated with me.

One would think that the fact that we are starting to see proof that my disease is indeed a physical and very really disease, rather than just Anxiety and Depression. I am not one to dispute the fact that both anxiety and depression have a part of my life. However, most doctors see those things and wrongly assume it is the whole picture. It definitely is not. The big issue is that very few of the issues are having are clearly being shown in any of the tests I have been through. So many of these tests are invasive, painful, and almost as bad as the disease itself. Lately I have been looking closely at what I want and need to do not only for my own sanity and comfort but so that I can fully live rather than living in and out of specialists' offices, hospital beds, and outpatient infusion. I fought hard to get where I am, to get my doctors to see that my issues are indeed very real and not something to be made light of. It has taken me about 14 years to get there. In that time, at least ten of those years involved me fighting tirelessly for answers, comfort, and relief. However, in those years, so much is left to be done and I find myself wondering how much progress was actually made. Sometimes I meet a doctor that makes me second guess myself. I hear it all the time "you're a nurse, and as medical professionals we often diagnose ourselves and are also the worst at taking care of ourselves." To be fair, none of that is untrue. But, sometimes it makes me feel like my feelings, my thoughts, and my advocacy attempts are seen as invalid. That is not an easy reality to live with, and not something I take to well.

The past few weeks I have really been thinking about where my care has fallen through the cracks and what needs to be changed in order to best fulfill my ongoing needs. My former PCP, who has been my doctor for about a year now, is a very busy doctor. A lot of times when something would come up and I would have an appointment, he was on call in the Emergency Room and my appointments would be cancelled. Unfortunately, with my chronic issues, that can not fly. At first I was trying to make sure that it was more than a one-time thing before I started to get alarmed. Unfortunately, in the past three months it happened quite frequently, at least five times. The other issue I was running into was that this doctor was running out of ideas, and constantly running into opposition from my insurance company. He was doing his best to advocate for me and help me navigate through all of the insurance craziness, but in the end, it seems they won that battle. Case in point, this doctor fought, and actually became angry on my behalf because we had tried for over three months to get me into a Gastroenterologist. Insurance fought that well into March. I was sitting in my hospital bed after having my appendectomy and realized that without my GI appointment, progress was being hindered yet again. To this day, I have no idea how we finally got insurance to approve the visit, but somehow it happened.

Then I actually went to the appointment. The GI doctor was a very compassionate man, aggressive and seemed very much on the same page with where we were at as far as my ongoing issues with eating, swallowing, and digestion. But he also noted that my dysautonomia was playing a profound role in screwing around with my body. Autonomic dysfunction brings with it a whole mess of other issues, often being GI and muscle related. Basically because the nerves are dying or dead, they aren't sending the signals needed to make digestion happen, or elimination. None of this is without a lot of pain and suffering. With the two medications I am on for reflux, I am still needing to take Maalox on a fairly regular basis. My former PCP really wanted to start me on Amitiza to see if we could get my GI motility under better control. It was a good idea, but....that medication brings with it a lot of nasty side affects. The GI doctor wanted me to increase this medication, but I don't think it helped much, in fact it made my bloating and nausea that much worse to the point where I've again lost weight. He also suggested that I see someone at the Mayo Clinic, because they were more likely to be able to put things together from a multi-systemic point of view and that is something that Sanford just isn't equipped to do. Suffice to say, it seemed like he was willing to help me by putting me through some more tests, but strongly felt my needs would be better served from a multi-system perspective rather than the "poke around and let's see what we can find out." perspective. I really appreciated that he was looking at things that way and he really seemed like he had my best interests in mind. But it did not feel like a terribly productive appointment, and I felt like I was back at square one in many respects.

I guess the idea of going to specialists is always kind of troubling to me. It is difficult for me to get used to their perspectives and their diverse personalities. Some specialists I see are very skeptical and look more into the psychological aspect of things rather than looking at my physical symptoms and attempting to understand the impact they're having on my life. My goal is to work with Dr. Kendall and my PCP to coordinate overall care and spend less time traveling to doctor's appointments. I feel that having a couple of doctors that know me well and know my complexities and how my body reacts to things is a better deal than having several doctors, with differing opinions who may not know me that well and may not be like-minded when it comes to my care. For the record, I am in no way throwing in the towel. I am not ready for hospice. But I have had the chance to look very closely at the life I want for myself, my future husband, and my family. And I do not believe that spending all of this time in the doctor's office, letting Mito define my life and avoiding the world and not enjoying life. I want to be back to work, to enjoy the people I love and have as full of a life as possible. Upon contemplating all of this, I made the difficult decision to switch primary care physicians.

No part of this was easy for me. I adore my former PCP. I think he's a fabulous doctor, a good person, and very compassionate. I know he did the best he could for me. There is no doubt in my mind that he really did what he felt was right and that he tried his best. But I saw the heartbreak in his eyes every time he told me that he didn't know what to do for me anymore. It was hinted at that I should possibly seek another doctor. This idea took a long time for me to accept, because I felt so strongly that this doctor was doing his best for me and I felt like we were to a point where we could be honest. However, I also realized that for so many years I have done my best to protect people from the realities of my illness. Somehow, I was doing this to my former PCP as well, and that just wasn't going to work. It took me a while to get to a point where I was accepting of the reality that I needed to change things. Then, when I figured that out it took a long time for me to get to the point where I felt comfortable speaking to my PCP about taking on my care and the complexities that come with it. About two weeks ago, I was finally able to get to that point. From there, I needed to communicate with the insurance company and get that process started. It took some time, but that finally happened.

Yesterday I had my first appointment with my PCP and I think overall it went well. We are working on adjusting some of my medications and trying to eliminate nasty side affects. So far, I am really cautious but optimistic about the potential that this change in care will have on my life and my health. It is going to take a lot of adjustment. None of this is going to be a simple or short process. But, ultimately I think it will be best for myself, my health, and my family.

But the biggest and best news of all- on Saturday I get to marry the love of my life. I want to focus on the beauty of that. The wonder of all of it- that I've found someone to spend the rest of my life with, someone who does the best he can to help take care of me and support me. He does the best to understand the realities of my illness. I don't want to focus on the dysfunctional aspect of things. Let's face it, I've done all I can to overcome that and get away from it. I am so excited to celebrate this day and to get all of the graces that come from God and the Sacrament of marriage. So right now, I'm trying to forget all of the other crap in my life. I want to cherish this time. And I'm doing it. This is a conscious decision that I am making. All of the health stuff can wait. It will still be there after the wedding. I know it's not going away anytime soon. And that's OK. I will deal with it.

This is a new beginning in my life. This is a chance for me to break away from all of the craziness, to make the life that I want for myself and my family a reality. And you better believe, I'm doing just that. I'm thank God every single day that I'm still here and I have this chance. Nothing is more of a blessing than that. And I'm thankful I have a new PCP who looked into my eyes and said "I will help you. You need to trust me and let me do that." And so, our new journey in life begins.