Things are very frustrating around here. I am continuing to be nauseous much of the time, and my weight continues to go down fairly steadily. Zofran no longer even "takes the edge off" of the nausea. Which is difficult to deal with when you're supposed to be eating.
Last week, when I was working, I was helping a resident get ready for bed, something that is crucial for my job. Because of the heat, I was already feeling pretty awful, but not to the point where I could defend going home. However, when I bent down to do something and raised myself back up, I began feeling dizzy to the point where the room was literally spinning! At that point, I went out to the charge nurse and said that I should probably go home. She didn't understand, but once I talked to her about things and explained that it was probably the heat and dehydration. We did a set of vital signs. My blood pressure was OK, but my heart rate was 115, and that is on my current medication to control my heart rates! This is an extremely frustrating situation. We both decided then that it would be best for me to go home and cool off. Thankfully, after getting some water in me and cooling off in the air conditioning, I finally felt a little better.
The next morning, I called Dr. Green's office. I wanted to make sure that I could see him by the end of the week. That situation was about enough to make me pull my hair out. First, the nurse informed me that he was not in the office that day. OK fine. Whatever. She said she could get me in the next day. In theory, that would have been a great idea. However, it wasn't because I needed to be in an all-day inservice for work the next day! So, I asked about Friday. They said it would be difficult and asked if I would be willing to see another doctor. I was starting to get really annoyed. If I wanted to see another doctor, I would have asked. Dr. Green knows me, knows my history, and knows my diagnoses! So no, I'm not trying to be rude but I don't want to see another doctor. Thankfully, she seemed to get the message pretty quickly and found an opening for me at 3:15 on Friday.
Trying to hold on until Friday was difficult but I made it. And, the best part was that they called me to see if I could come in at 2! So, I got in earlier than expected. One of the first things I said to Dr. Green was "I can't do this anymore." It's not something I ever wanted to say to him. But I had to be honest, because things just weren't getting better. He asked me how my mood was. I looked at him plainly and said, "How would you feel?" That must have made him think. I explained to him about the tachycardia, the nausea, the dizziness. It has been discussed in the past that I very likely have autonomic nervous system dysfunction. Right now it appears as though this may be an exacerbation of these symptoms. We did orthostatic blood pressures and heart rates (done lying down, then sitting, then standing, this assesses how blood pressure and heart rate changes when the body's position changes). Upon assessment, it looks as though when my position changes, my blood pressure tends to drop and my heart rate goes up. This is called orthostatic hypotension (in regard to the blood pressure change) and postural tachycardia (in regard to heart rate). He explained that he could change my medications around again, but was reluctant to do so because he didn't want to experiment that much. A fact for which I was very thankful. Upon explaining that to me, he also said he wants me to see a cardiologist for further evaluation. This isn't something I argued with. So, I see the cardiologist on Wednesday the 31st. I also follow up with Dr. Green on the 29th. In addition, I may start a new medication for my IC spasms at night.
To say that I am grateful for Dr. Green is an understatement! He is wonderful. He told me he appreciates that I am not looking for a cure. I told him that mainly all I want is to be as functional as possible and to have as much quality of life as possible also. Time will tell as to how long it will take to get these things figured out. He asked me to prioritize the problems that I have. It's so difficult to do that! They all significantly affect my life and how I live it. And I am miserable.
Thankfully, I see my shrink on Friday. In light of all of these issues, I am very emotional and crabby lately. I know right, who would have thought? Sigh. I know I shouldn't feel bad for myself. I know that I am so fortunate compared to many other people that have Mito. But I have to take time, sometimes, to grieve the things I lose. I do lose things every day. I live with pain, nausea, and fatigue every day.
With that being said, I love life. I have so many dreams for my life, and I won't be satisfied until most of them can become a reality. The past few years have been about that. Making my dreams come true. Granted, in some ways I have fallen short. But it happens. The point is, I do my best. Every day, I get up and try to make the best of each day that God gives me. Truly, I realize that every day, every moment that I have is a precious gift from God. I find myself, at times, trying to memorize things. Memorize sounds, sights, tastes, the way something feels. Or to memorize a feeling. Too soon, they fade away and we are left with memories. These things are meant to be cherished. I guess you have to be in a position like mine to really understand and grasp what I am saying. But try to imagine for a minute that you have no idea exactly what tomorrow will bring. In reality, none of us does. When you have Mito, life becomes more and more unpredictable. At times, one with Mito must completely forget all of the plans he or she has made for a day. For the energy a task demands simply surpasses then energy they have for that day. Nothing is more frustrating. I have had many days where I have to tell friends or family that I can't do things with them because I don't have the energy. Yes, it's a heartbreaking thing to do, but I have no choice in the matter. It's that, or overdo it and lose what little stability I have left.
The Walk is less than a month away. Leslie and I are preparing for Tip Night at our local Pizza Ranch and hoping it will be yet another rip-roaring success! Slowly I am making progress on recruiting more team members. The walk helps me to focus on something else for a while. It helps me to realize I'm becoming part of the cure. Yes, it may not come in my lifetime, but at least I am working toward something more!
Hopefully more answers and relief will come with these next few appointments. I for one need them desperately.
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