Life here continues to change, but then some things do not change. Much of life lately has been more of the same, more fighting with insurance companies, fighting Mito, and lately we are fighting circumstances in life that are ever-changing. Earlier this week, Justin and I were gently pushed in a direction that we had not at first anticipated. Truth be told, we both knew that this was eventually the direction that things were going to go. I guess it is difficult for me to explain with "kind words" why I am upset. For starters, there are issues here that stem from before Justin was even in the picture, and recent events have only made these past hurts more apparent. Sometimes I can push them aside and forget about them, even for a moment. Then, there are days that they come to bite me and I realize that I was not as "over them" as I had originally thought. Tuesday was one of those days. For the sake of maintaining peace I will not divulge full details on all of the hurts involved, or all of what is going on at present. I am comfortable sharing only some of this information with the general public and that which I do not share is solely my choice and was withheld after a lot of thought. So please remember that and do not ask questions that could lead to me sharing more of my life than I or my family is comfortable with.
With that being said, it is no secret that my fiancé has been serving as a full-time youth minister at my former church. I will choose not to say which church he served at, because it really does not matter. What matters is, Justin really enjoys working with youth, and has a very obvious gift with them. People who have not seen him working with the students really can't understand what effect Justin has on them. God works through him, and wonderful things happen. In our society today, church is not seen as something that is as important as it once was. Church used to be a given on Wednesdays and Sundays. Now it seems the emphasis is on sports, money, and school activities. God is no longer at the forefront of people's lives and church is not seen as a priority. With that ongoing cultural change, it is becoming more difficult for churches to grow. The big issue is, the older generations in the church are slowly becoming less and less. Meanwhile, our efforts to encourage youth to have a relationship with God and a good relationship with the church are met with a lot of opposition. Not only from the students, but also from their parents. Parents are the most influential individuals in the students' lives, so if they are not setting the example for the students to attend church and become involved, it is extremely difficult to lead them. Furthermore, it has been increasingly difficult to find dependable, competent and eager adult volunteers to assist with various youth events. Over time this issue is becoming worse, because all of the adult volunteers that have been utilized in the past are getting burnt out, and with good reason. At any rate, the past week has had Justin and I really starting to think about whether this church was the right place for Justin to work and if this was indeed what God had planned for our lives.
Well, we were not given much time to ponder that. On Tuesday afternoon, Justin was brought into a meeting with the pastor and the chair of staff parish relations. He was given the choice to either resign from his position or be terminated. Needless to say, timing really has not been ideal. We are 34 days from our wedding, and with me being on medical leave it really is not a good time for Justin to be unemployed. Things health wise for me have been stabilizing marginally, however I still have a long way to go in order to make the progress that is needed in order for me to return to work full time. So, after thinking deeply about the issue and undoubtedly praying about it as well, Justin made the difficult decision to resign from his position. As of 12 PM Wednesday, he is without a job. To be perfectly honest, we had seen this coming. With that being said, I really did not anticipate it would happen this quickly, and we were really starting to make progress with the administrative and planning aspects of the position. Being Justin's fiancé and future wife, I feel it is very important for me to be involved in his ministry. Similarly, we have also decided that we would like him to be involved in mine as well. Justin has made trips to visit with residents at the nursing home, and I think it has really strengthened our relationship and our appreciation for each other and our different careers and callings that God has for us. To me, marriage is a partnership. And that means that we are involved in each other's lives. Our work is a part of our life, and Justin and I are really connection-oriented people. It only stands to reason we would be involved with each other's careers. There are hurt feelings on both of our parts.
This curveball that life has thrown at us brings with it a lot of unanswered questions and as always, a great deal of stress. Life has not been easy for us lately. Let me remind you, April 1 marks one month since my appendectomy. I have been on medical leave for about 7 weeks. My Mitochondrial disorder is progressing to a point where I am beginning to try to decide whether or not it is smart or feasible for me to return to my full time position as a charge nurse. Not returning to the facility would be extremely difficult for me, and I really am not willing to give up on that part of my life right now. Appointments with my PCP are largely unproductive. It's not to say that my PCP isn't a wonderful doctor, but he is really at a loss of what to do and how to treat all of these medical issues. That does not even take into account the fact that my insurance company is continuing to fight against the care that I desperately need. Every specialist I see needs a referral. My PCP is an extremely busy doctor. He has a huge stack of papers in his office devoted only to me. When he makes referrals, it seems like insurance continues to fight against him, and what he feels is best in my care. I feel extremely powerless and like I have absolutely no control over my life anymore. Having Mito is difficult enough, and because it is poorly understood I have already been accused numerous times of "overmedicalizing" my care. Because of that, insurance is also fighting me on everything, and they have placed me on what they called a "restricted recipient program." The reasons they cited for that is that I was utilizing emergency medicine unnecessarily. Oddly enough, most of those visits were not by my choice. At that point, I was having a lot of seizures and because of that, they were sending me to the ER frequently. It was extremely frustrating because I HATE going to the ER unless I absolutely have to (and I still hate it even then), and even with my seizures, there is really no point in going in unless they are not stopping or I am having more difficulties than usual. Usually after I have a seizure, I need some time to recover and I will be fine again.
Now, you may think that this latest obstacle will change our plans. On the contrary, we are still planning to go forward with our wedding. However, some parts of our plan has changed. Justin will be moving in to my house in Jackson by the end of the month. After the wedding that was our plan either way, but now it has caused us to move things a little faster than we had previously anticipated. Obviously, Justin is going to be looking for a new job. I am still working on getting strong enough to go back to work, but I will explain more about that here in a moment. At any rate, despite the terrible timing of the church forcing Justin to resign, there is a very real sense of peace. Neither of us can really explain how or why. Right now, we are trusting God to lead us in what is right for our life. This can take on many forms, and we are doing our best to be open to what God is trying to do in our lives. At the moment, we are looking at finding Justin some sort of factory job until we are able to locate a youth ministry position in the area. Like I stated earlier, Justin and I really love working with youth, and it is very obvious that Justin has a gift with working with the youth and helping them to see God for who He is and how much He really does love us. I have seen firsthand the effect he has on these kids, and after seeing that, I could not help but want to be part of it. As a couple, we both want to continue youth ministry in some capacity. It is unclear what that will look like, but we are both trusting that God will open the doors we need him to and lead us in the way He feels is right. Perhaps that is the peace we are feeling, knowing that God is allowing some good to come out of this difficult hurdle that has come up.
Then there's Mito. Over the past few months, my health has been taking a downward turn. Having a standing order for IV fluids finally really does help things. I am now able to call and tell the clinic that I need fluids and get them outpatient rather than having to make more unnecessary ER trips. The last time I went in, the nurse argued with me. Apparently the order read that I "needed to be showing clinical signs of dehydration." Her issue with that was that I did not look dehydrated. But, being a nurse, and having lived in my body for 24 years, I am pretty much an expert at figuring out something isn't right. Dehydration happens frequently for me. My body is constantly burning energy it doesn't have, so my electrolytes and the water I need in my body do not stay at the levels they are needed. I ended up getting the fluids, but she wanted me to make the appointment in the same day. To me, that makes very little sense, because if they are too busy they will not be able to do an infusion and if it gets bad enough, I will have to go into the ER anyway. So, when I think of it that way none of their issues with that make any sense.
My last appointment with my PCP, as I stated was not terribly productive. I finally received an order to go to Physical Therapy and see how much I can build up to getting back into work. Over the past few months, I have experienced the significant decline and with it comes everyone's favorite, muscle atrophy. Being a nurse is an extremely physically demanding job, and I have to make sure that physically I am strong enough to return to work. The mental status changes I have been experiencing continue to be very concerning and a struggle that does not appear to be going away. What is really odd is that my less than lucid moments don't really have any rhyme or reason to when they occur or why they occur. Dysautonomia has again been wreaking a lot of havoc in my life. Every time I stand up, my blood pressure continues to drop and my heart rate continues to increase. Those things combined cause standing to be very difficult for me, as well as making me extremely light headed. It has caused blurring in my vision and led to me nearly blacking out. My stamina is quite low and my energy stores have also been plummeting. Tonight, for instance, I was only able to fall asleep for a very short period of time (about an hour). I have been having ongoing issues with autonomic storms, which cause my temperature, heart rate, and blood pressure to be very erratic. Those things do not help with my ongoing issues with digestion. So, I have been up, trying to medicate myself and get to sleep. I am doing everything I can to avoid an Emergency Room visit.
For now, Justin and I are really trying to focus on praying about what God has in store for us next. Please pray that we continue to have a sense of peace, but also that we are able to be open to what God wants. In addition, I would ask you to pray for the youth, and the future of this church. We are very disheartened by the issues we are seeing, and it is something that we are very heartbroken about. The best part of this is we do not have to be alone in this. I thank God for that every day. Justin and I will be married in just 34 days. It is coming fast.
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