Next month it will be seven years, seven loooonnnggg years, since I began my journey on some very dangerous drugs to treat my inflammatory arthritis.
Years of struggling with pain and symptoms beyond my control I finally saw a Rheumatologist in September of 2006, the 27th to be exact. We decided to start treatments for all the symptoms I was experiencing. When I first started the drugs I began to feel better and the drugs caused some side effects but over time the side effects became worse. Headaches, nausea, weight gain, brain fog, more fatigue, need I go on? I can hardly believe I have made it almost seven years on this toxic concoction, believe me there were many times I wanted and even tried to stop taking them but the symptoms always brought me back to square one, take the drugs to get some relief.
Over the past six months I started to make a decision and wonder about taking all this poison. Poison that I knew helped me but poison that was slowing taking away even more than what I had seven years ago. Over the past year I began getting even worse side effects my headaches increased each time I gave myself the injection of Methotrexate. I would give myself the shot and I would get a migraine the next day and would be nauseas for two to three days after. I began to wonder is it worth this? Yes, this drug helped me in the years past but something has shifted. I almost felt as if I was becoming allergic to it or it wasn't working as well and I needed to take a break. How? I was afraid to stop all the drugs at once because when you are on these types of drugs you stop cold turkey and you could die. I'm not quite ready for that yet so I made the decision to stay on all of them until I saw my doctor, which was yesterday. Since the last appointment I had with her six months ago I had dropped the steroids from 6 mg. to 2mg. Believe me, I sure can tell physically but it is happening, I made the decision. I decided no more hiking it back up every time I felt like crap. I decided it was/is time to deal with it and see if I feel any better over time. Just as when I started the drugs and they took time to work I need to give my body a chance to see what happens without them. Yes, it could be a long time before I feel like I am okay without them or it may be that I need to go back on them, but for now I wait. Wait and see what happens. Limbo.
My doctor agreed that I can try to go off the Methotrexate and see what happens. She agreed if I feel worse and the symptoms become unbearable to go back on them. There is also another drug we can try to see if I don't get so sick from but I think for now I am ready for the slow descend into no drug land. It is exciting for my head to even begin to think of no drugs what so ever but at the same time it is very scary. Who knows what is going to happen? I don't and my doctor doesn't. It is a wait and see game. I know dropping the steroids has made me much more stiff and fatigued then when I was on the full dose. I feel weak and so very fatigued. I have a hard time getting out of bed in the morning. I wonder if that will improve. I hope, pray, and dream of the day it does. I must keep my head on the positive side and not allow the negative to wash out the positive. It isn't easy when you feel sick but I am going to do this. I am strong and I know I can!
My next plan is to clean up my diet even more and begin more of an anti-inflammatory diet. I'm going to walk more even if it is ten minutes a day for now it is okay. I may check into and do some research on more natural things I have heard about and take it one step at a time. Once I am off the steroids totally, hopefully in a month or so, I will see how that goes then I will stop taking the Plaquenil which was the first drug I was put on. It helped somewhat but not enough so that is the reason we added more way back when. It is one of the safer DMARDS to be on so I am not so concerned about stopping this one as I am about the steroids and the Methotrexate.
I am trying not to look at the whole picture because I know I have a long road ahead of me, but if I look back it started six months ago when I started to wean off the steroids so I am already making progress! If I look at it as from the whole picture view I become to overwhelmed and my brain is unable to process it all. I have found when I do take the whole picture approach my brain almost shuts down and yells to me to just stop, so I do.
I am pretty sure most of my friends and family are going to say, "Good for you." I know people don't understand why I take these drugs and I hear comments all the time about doing this or doing that. People who don't understand at all. Rich who lives this with me everyday is not as excited as I am about cutting back on the drugs. He is already seen a big change in me since the drop in the steroids and I know he is not as excited, so to speak, as I am. On the flip side he tells me I need to do what is right for me and he understands that right now I at least need to try this for me, for my own piece of mind, for my own wonder.
One drug at a time, One day at a time, One minute at a time. Breaking it down like that makes it seem like it is possible. We shall see. I will keep you posted. Thank you for always being here and supporting me just by reading my blog, it means the world to me.
God Bless!
Dianne
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