Thursday, February 14, 2013

It Is Time To Be Open

Inhale... Exhale... Rinse and repeat. If the title didn't clue you in, I have had some rather major things I have been keeping quiet lately. They aren't really all that good either and that is a large part of why I have not shared yet. I feel it is time to be open now as things continue to progress and my life continues to be impacted in new ways. Before you read any further about what is going on in my "lupie life" I would like to stress I am chronically ill, not dead.

In December I started to see a new rhuemy and she is fabulous. I believe I have already blogged a bit about her so I will not go any further with her bedside manner. Upon a physical and laboratory inspection it was found I am not in remission. As a matter of fact my lupus was found to be "blossoming" and I was prescribed steroids. What I did not add in my blog at that time is I also started weekly chemo treatments. Right now I am on them indefinitely. Methotrexate is not a drug for the faint of stomach. It does a pretty good job at making me sick and tired. The payoff for me has been a great reduction in pain and inflammation from it. However according to my lab work in other parts of my lupus, things have continued to get worse. I got the call about three weeks ago that I am not responding to treatment and as a result I am now on a higher dose. If things continue to get worse my rhuem will also add Cellcept. If you would like to talk nightmare with lupus... This would be one of them.

Methotrexate is a "gold standard" drug for many types of cancer and RA. It was developed in the 1950s time frame and the long term effects are well known. I am fortunate to not require injections of it at this point, though in the future that may change. The main side effects I experience are stomach pain, nausea, fatigue and mild vomiting. Nothing that a teddy bear and a day in bed cannot help make better. But it pretty much destroys my weekends as I take it Friday night and am down all Saturday.

Taking the first dose was a terrifying experience. I am glad I got the guts up to do it because in the ways it is visibly helping, choosing to not take it probably would have made things visibly worse. Yes, I used the word "choose" because a person always has a choice in their treatment. Though the decision they make may cause them to die or live... It is still a choice.

Emotionally I have really struggled with this. For a long time I was just under heavy pain management and the maximum dose of plaquenil I could tolerate. Now I keep on getting more skewed results, more hour long appointments and meeting so many really smart people who are fascinated by my lupus. It really takes a toll. Especially hearing I was not responding as my rhuem had hoped. Playing the game of quality of life is not something any 19 year old person should ever have to go through. Plus chemotherapy and college... It is a challenging combination.

There it is off my chest, finally. Sigh. Yawn. Late night confessions are charged things.

I hope you all have a wonderful Valentines Day and many spoons!

Meds before upping things. Yay steroid sparing life improving drugs!