I am sorry that I have not written for the last months. I just couldn't physically do it and then I couldn't mentally. I spent hours thinking of what I was going to write while tossing and turning, unable to sleep, but with the light of morning, absolutely exhausted, all the thoughts were erased in the darkness of my fretful sleep.
That's how it is, my life is so utterly boring and routine with horrible amounts of untold stress and anguish. It's enough to make a person insane, unless you go numb and so that is what I have done for about the last 5 or so months. I decided I didn't care about anything or anybody. I feel like it worked, but I am having a horrible time getting out of that thinking, maybe I never will.
Anyway, I should tell about the next events with my health. When I last wrote I was still in the middle of Iv Antibiotics. I had to get up early and stick to the Iv routine. I also had to stick to the routine of taking care of my feet and then my daily routine of taking my pills, my shots and to try not to scratch the bandage off my chest. Oh, and God forbid if I didn't do it. That was the stress. Even with a kind nurse coming to visit me, if I admitted to not doing something, normally because the pain was indescribable (that's the anguish) I would be threaten with more doctors, more pain and death. I heard the threats so much my ears became deaf to it. I can only do what I can do. It's not much of an excuse, but it is the truth.
The Antibiotics are very harsh on the system and mine was no exception. I had the worst side effects. I wanted to stop the medication, but was afraid. After talking with the nurse I knew it was a matter of enduring the whole 6 weeks. By the end, I was calling the Doctor from the bathroom begging to allow the antibiotics to be stopped. Her nurse said that nothing could be done unless I came in because I wasn't her patient. I spent the whole time at the office in the bathroom. Finally the Dr. comes in asks some basic questions and says I should go to the emergency room. I asked why. I was retaining water, having a hard time breathing and my blood pressure was up. All of those things happen when I am swollen with fluid. With the side effects I was feeling from the antibiotics I was NOT going to spend 4 hours in the ER waiting room only to be told something I already know. She did not seem to know any of my medical history or any of the chronic problems I deal with. I find that to be infuriating, but I am better about asking for more information. Her concerns are everyday life for me. I asked what she needed from me and that I am not going to the ER. She wanted blood and a stool sample. I told her to call if the tests showed I needed treatment and I would, of course, go to the ER. She acted like I didn't want any treatment at all. I just don't want to go to a torture chamber (the emergency room in my mind) unless there is a good reason. She never called. I assumed from her lack of communication that my infection was gone. I still had the nurse coming every week, so I could ask someone for information.
The nurse was coming because of the central line for the liquid medicine going into my chest. I basically had a small hole in my chest that needed to be kept open. I had to flush the lines every day even if I didn't use the central line for medicine because the body wants to heal the hole. The saline would clean the tubes and kept the central line clear. I did not like looking at the strange deice coming out of my chest and was so grateful the nurse would come every week to clean the wound and put a new bandage on. I was very worried that they were going to make me do it and I was already overwhelmed with the amount of stuff I had to do.
I am so, so very grateful that I am able to take care of myself, but it was really difficult. Being sick is a full time job. I have to be given instructions. I need to do it in order and at the proper time. It took all of my concentration and being ill ruins your ability to concentrate and the motivation to care enough.
I ended up with the central line for more than 2 months because the surgeon was too busy. I really wish I knew to make an appointment with her before I was done with the antibiotics. I called the surgeons office right when the infectious Disease Doctor told me to stop the medicine, but I am told there isn't an appointment for more than 2 weeks. That was almost beyond my endurance.
I am awful when the end is near of anything, but especially when it is something that I don't like. I will do what is required of me, but perceived freedom from other peoples demands is my Achilles heel.(weakness) I get really grumpy. In fact, I kicked a nurse out of my home, but she deserved it. I don't understand her version of care. I was in a pain that the hydrocodone wasn't touching. I don't want to take too much of that so I only allow myself one a day. I couldn't get out of bed and I was unable to do the laundry list of things that are required of me. Instead of helping, this nurse proceeded to berate me on not taking care of myself. I flipped and instead of taking the abuse, I fought back. Nothing I said mattered to her. I believed the pain was from pre-menstrual stuff. I had felt the pain before, just not so intensely. She was going on and on about how I should do this and how I should do that. I couldn't stand it. I asked her to finish what she needed and leave. I also told the home care agency I did not want her to come back. I mean, yes, I wouldn't do something or I would forget, but I always tried to tell the truth if I did that. My usual nurse, Dee was so nice about it. She would admonish me, but in a gentle manner. I really needed the kindness.
I got into the surgeons office thinking she was going to pull the central line out. I had asked the nurses and they said that was common. Not me. The surgeon remembered what a horrible experience putting it in was and made me go into surgery to take it out. Thankfully I got an anesthesiologist that knew what he was doing. He put me to sleep before going into the OR and I woke with no side effects and felt well enough to walk out the door some hours later. I am going to ask for him again. I only have a small scar now and I think that will disappear over time.
My life was filled with Doctors appointments. I had one, sometimes two a week. I couldn't handle it, but I knew I had to handle it. I have to do the regiment to get better. The problem is I backlash. I hide inside myself. I have nothing personal against the Doctors and Nurses, I don't know them, but it is what they represent to me. Pain. I am in pain, so I need their help and their help gives me pain.
So how am I doing mentally. Poor. I feel like a bag of rotting meat. I can't do anything. I watch TV and play computer games. I still have the open wound on my foot from last Thanksgiving's surgery and my other foot is developing sores. Thankfully I have medicine to help with both. Life is going on around me. People care about things. They want things for themselves and their children. I don't. I am fighting for food. I am fighting for sleep and I am fighting to live. And honestly I don't know why. I know what for. I made a promise a long time ago that I would not take my own life, but it just seems dumb to do all of this work and not have a clear picture. That is new for me. I have always had a hope of something more or something was going to happen and it has. I have met some amazing people that have given me understanding. I just feel like their is nothing ahead of me. I am not getting better. I am worthless as a working member of society, so what does that mean for me. I worry about my future. I worry my brain is atrophying from disuse.
But at least I can say that I do feel better than I did in the beginning of fall, so maybe the Holidays won't be so bad.
