I think I am finally there. In the place I am suppose to be at this time. I may have finally found the right combination of drugs for me. Oh don't get me wrong I have been here before, it is just that every time I get here and I feel like a somewhat "normal" human being I start to think I am God and try to cut back on dosages of certain meds thinking I will be okay, only to fall back into a pit of hell, as I call it.
Here I am once again in a good place. The methotrexate has finally built itself back up in my system since I was able to find the injectable form. The medro/steroid is at a level that is just about perfect for me. Yes, there are days I still get inflammation and could take more, but I push through those days and try other therapies to get the inflammation down. Increasing the medro helps but it sure is murder and makes me crazy. I am already pretty outspoken and the higher doses of this drug can make me down right mean, so I stay on my 6mg dose and do the best I can with that. It is just when I feel somewhat "human" as I do now I think hummm I can cut back on the steroids and get off them. This always turns out to be a huge mistake and backfires big time. I am also taking a new pain meds twice a day called tramadol. I don't know what is in it but it has changed my life. I have energy, less pain, and am doing so much better since I started it. I hate the thought of another drug but when you are ill you will do anything to try to feel better, if that means another med then so be it. The worst part of this drug is my memory is just horrible on it, almost scary when I think of how it has affected my memory but there is always a trade off when taking any drug.
At night I take a muscle relaxer for my neck pain and a xanax to help me sleep. You see when you are in pain sleep is one of the biggest luxuries that suffer, and a ill person without sleep just gets more pain. It is all a vicious cycle.
You can see being ill, taking drugs, doing all the little things to help yourself feel okay to get through the day can all be a full time job. It is relentless agony. Should I do this, should I do that? When I feel good like I am now I still have to be very careful, one slip up can send me back into the hell. One good sign for me is that I am good today. We moved Richie and Leah yesterday and I helped unpack, normally I would not be able to do anything the day after working like that, but today I feel good. It is almost scary to think about so I push it out of my head. It is hard living in fear wondering if tomorrow the hell will return. I try to push the bad thoughts of the hell returning out as fast as they come in and just enjoy the good.
My point is, when you find what works for you, you must keep doing what you are doing. Do not think you can stop a med or cut back. Do not think you can be wonder woman or superman just because things are good. Push on do the best you can but don't over do it. Take the good and do good. In starting this post I listed a few of the drugs I take. Those are only a few, there are a few more, but I feel these are the ones that really help me to have a better quality of life. I feel blessed we are able to find these drugs and we have insurance to help us cover some of the expense because without them my life would be much more difficult. I am thankful to have drugs that allow me to enjoy my family and give a little bit of love to others when I am able. I wish I were able to give more but there is a limit when you are ill. I struggle with this the most, but I try my best to show others love in a world that seems to be changing into a place that I don't like. Sad to write for me, but even sadder to witness. I wish I were able to be out there more to show more goodness to the world. This is very painful for me too but I have to believe the little that I can do, do is making a difference in this world.
Here we are again at then end of my babbling. My hopes and wishes for you are that you are able to push on. I hope if you are on drugs for illness you are able or have found what works for you. I hope you do not have the struggle, as I do, of thinking, I am doing good so I will cut this drug out, it is a bad, bad idea. I have done it so many times and I think I have finally learned my lesson. This is what works for me so don't mess with it, I'm not going to anymore. I hope if you struggle you are able to get here too. It is never easy thinking to yourself, I have to do this for the rest of my life? But it is worth it if you are able to enjoy all the beauty that surrounds you in people and in life and you at least feel okay to do so!
God Bless!
Dianne
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