Blog, Life Is Good

Life Is Good…When I Want It To Be

The alarm goes off, I spring into action. Shower, brush my teeth, do my hair and makeup and tend to the pets. Wake up honey lets go have coffee I tell my husband.

Can we go see the grandkids today? I ask. Do you want to visit the cabin? It is so nice this time of year. I’m having a good day.

Alarm goes off. I say,”Will you shut that fucking thing off.”. My husband asks, ” Want to go have coffee? “. No. I just want to sleep. I do have things to do today. I want nothing to do with any of it. I am absolutely exhausted. No desire to even get out of bed, and definitely not going in public today. It takes to much energy to pretend to be normal, and I am just not feeling up to it today. These are the days I am most use to. And to tell you the truth I enjoy my days of sollitude as compared to the days I am forced to socialize.

I give 100% when it comes to being a mother and grandmother. I put myself in uncomfortable situations all the time when tending to my loved ones. It really takes a toll on my mental illness at times. It is truly exhausting attempting to be the perfect grandparent and parent, I never fail them. In the process I become manic trying to keep up. Everything that goes up eventually must come down. Eventually, I plummit to the ground. You would think after all these years with these mental illnesses I would be expecting it, NOPE. As always the illness sneaks up and bites me right in the butt.

I start all over again taking extra care to take medications and get the rest I so desperately need. It last a week maybe two and the vicious cycle starts all over again.

Today….It was a good day. Tomorrow……We will see.

Blog, Rituximab saved my life

Rituximab saved my life!

It has been nearly two years since I started the Rituxan infusions, my quality of life increasing with each one. When I first started the infusions my vectra score was a 58. Which meant my disease activity was severe. My most recent blood work shows my vectra score at a 3. Down 55 points. Yes my teeth are paying the price and a bit of hair loss. When I started this journey I was pushing about 360 and on outings sometimes needed a wheelchair or cane. I eventually had gastric bypass, but the weight loss did not help my jont pain. I had tried all sorts of injections, the newest pills. Nothing worked. Then I started the Rituximab infusions. Game changer. I can now play with my grankids unlike with my children, I sat and watched. I am now about 195 and feel better than I have in years. There are side effects, like my teeth. But I will take it any day over the pain and fatigue I felt for almost 18 years. The best advice I can give is, if you think your treatment plans are not working as you would like. Change it, talk to your doctor. If you aren’t happy with your results, look at other options. I hope and pray that you find what works for you and whatever ails you. Life is to short to live in pain.

Blog, I could be worse

I could be so much worse

As I sit here getting my chemo treatment, I watch and listen to those around me. I am blessed. There are so many in pain and sick from their treatments. Over the years I see patients come and go. Some are now cancer free others didn’t beat their disease. I really appreciate the life God has given me. The beautiful friends and family that I’ve been blessed to have in my life. Thankful that these treatments are helping my RA remain under control. I can be more active with my grandkids than I was able to be with my sons. I know there may come a day when this treatment no longer works for me, so until then I will enjoy my family and live my life to it’s fullest.