Sentences

The truth is, I should be sleeping right now.

Big surprise right?

There are so many things going on in my mind and in my heart. I am overwhelmed, and at times I strive for a "normal" life. In the past few years I have had to accept changes to the "normal" I was previously experiencing. First I lost more energy each day, and began experiencing more intense fatigue. Granted, I was never really a very energetic person to begin with. The pain became more and more constant, and intense. Before long, it was as if I would never know life without pain anymore, and so far that has been proven true time and time again. Eating became more of a problem. My tolerance levels for portions declined, and continue to do so to this day. Then came the seizures, the energy crises, and there you have it, the normal I was to accept.

But it has not been easy. I wish I could tell you that I'm happy with my life. For the most part, I am, but there are so many things I want to do in my life. I want to finish school, I want to get married and I want to have the big family I have always wanted. For now I can only trust that God is leading me in what is right. Nothing else can be done.

I continually wonder what more I can do to love others. I wonder at times how much longer I will be able to continue life in this way. Another decline is coming if something isn't done soon. I don't mean to be pessimistic, but it is the way it is. When I am coming close to declining I can always feel it, just as I can feel a seizure coming on. There isn't much I can do at this point except be as careful as possible and make sure that I can keep the decline from coming as long as possible.

The problem is, I don't know how long that will be.

I want to escape from life. I want a vacation from it. For just a few weeks, I want to be able to sleep and enjoy doing nothing besides reading, watching movies, and doing things that I want to do. I would love to be able to forget about life for awhile. That's not living in reality, and I fully realize that. But there is so much of me that wishes to escape from the constant stress, having to organize my life and advocate for myself. Between medical appointments, school, and work I am exhausted. Life does not revolve around my social wellbeing. It relies solely on fulfilling these tasks so I can continue to work toward my goals in life.

But at times, I wonder why I do this to myself. I wonder if I will make it to graduate college, if I will be able to continue working as a nurse's aide. I will be the first to tell you that I love my job. Being a caregiver has come to define me as a person. My deep and powerful connection with the elderly and disabled is a gift from God. It's a gift I know He wants me to use. God blessed me with a capacity to love, and love easily. That is both a blessing and a burden. I know that I was created for a specific purpose. I can feel God leading me.

But I can also feel Him telling me not to get too comfortable with life, to accept things as they come. I'm not claiming to know anything, but I have been trying to prepare myself, and those I am closest to, for the worst. I can't say the worst is going to happen anytime soon. What I can say is that I don't want to put my life on hold any longer. The only way I'm going to fulfill my lifelong dreams is to go for them and dive right in. No one knows how long they have in earthly life, but it is especially touchy and uncertain for a person with a serious illness.

Tomorrow is my appointment with Dr. S, my pain specialist. I don't believe I will actually be seeing Dr. S tomorrow, but I will see his nurse practitioner now that I think of it. I will be learning the results of my spinal MRI. I have been preparing myself, because I know it is not going to be good news. Again, I am not being a pessimist. I am simply stating a fact. My back is not good, I have scoliosis and degenerative discs to boot. Doing my job has not helped either of these problems. Despite the fact that I am very careful when lifting and I know how to lift properly, I also am a very small person. Almost every person I care for is larger than I am. I am not incapable of caring for them, but I do need to be extremely careful during my transfers. What is causing anxiety for me is what the extent of this damage is, what it will mean for interventions (like will I need a back brace, surgery, cortisone shot, etc).

My appointment with Dr. P is not until February 28th. After my birthday (which is in a month now). I have to have a very serious and blunt discussion with him. As I have said before, Dr. P means a lot to me, he has done a lot for me and has been a decent advocate for me (at times). But, I need to be treated for my symptoms. All of the diagnoses I have are incurable. I have dealt with this reality as much as is humanly possible. I have also dealt with the fact that cures for any of these diagnoses are not likely to be found in my lifetime. Because of this, I need my PCP, and all others on my care team to ensure that my comfort and functionality are their top priorities. My nutritional status is becoming poorer as time goes on. I know I am not getting sufficient nutrition, as I have several nutritional deficiencies in addition to food allergies and this diet for Interstitial Cystitis. (Which, in case you're wondering, is incredibly difficult and is not going so hot either) I don't know what to do anymore. I need an advocate. All I ask is that I am having my pain controlled in addition to my nausea and that there is a way I can fill in my nutritional gaps so that I can be as healthy as is humanly possbile.

I realize this is a tall order. But Dr. P, bless his heart, seems to want to cure me. I do not expect this of him. For one, it's completely unrealistic, as a cure has not been found. Secondly, I need to be comfortable. Living in pain day after day takes its toll on a person. At time it makes me incredibly bitter and short with people. I don't want to be like that. Pain has changed me at times. I don't want it to if I can help it. I realize that expecting no pain is unrealistic, but I want my pain controlled.

This is why palliative care seems like a reasonable option. I have to look into it more, but with school, work, and everything else, I'm not sure it's feasible at this point. Furthermore, I really want to get my Advance Directive finished and signed. I think I have decided who my POA will be. There is only one person whom I trust with these decisions. I trust this person to know when I am ready to let go and stop fighting. Now I must reveal this, ask the question, and go through the motions. Asking this of a person is not easy, and I am not taking it lightly. I realize it is a lot to ask and it is a big responsibility. This is why I have taken so long to think things through and make sure I know exactly what I'm getting into.

Basically, I'm trying to survive, which seems to be a popular theme in my life. It has made me stronger, but at times, I wonder how strong I have to be.