RA is no joke. I am about a week away from being reminded of just how funny it never has been. It's not the pain that breaks me..it's the quality of my hours, days, sleep, play and brain that does. I have been without an infusion since June 4th. I just got the go ahead to start them again. Except I cannot because I am having surgery soon. I decided to eek it out until after. I have to wait until mid November to have the next infusion. On top of that, for the next 3 weeks, they are taking me off the methotrexate. This rattles me a bit. I missed my weekly dose, once. That is all it took. One time and I never missed it again. It is that bad. I would be lying if I said I wasn't terrified of what most likely is about to happen. A lot of people don't know or understand how bad RA can feel or be. A lot do. I really am not ready to fall that far backwards.
There have been no posts here because my hands and fingers ache. Otherwise, I have been doing well. Our summer went by too quickly, but was packed with a lot of happenings. August was a blur of stressful events. I am thankful for family and friends that were there for us. Checking in, popping by and calling. All at what seemed to be perfect moments where I gladly welcomed the distraction from all that was happening.
September came and it was time for school. The time of year I dread the most because I have to give up my babies for a good part of too many days per week. We decided to take some family time and extend our annual camping trip with my sisters and their families (aka Sister~Fest!). We went a few days ahead and enjoyed some kayaking, beach days and a trip to Gettysburg. It was wonderful. My sisters and their crews showed up for their usual days and we all enjoyed the best Sister~Fest yet!
October is going to be a blur as well. The next couple weeks are filled with doctor appointments, tests and ultimately, the surgery. I don't care if someone minimizes the procedure, but what I can't tolerate is how all this makes me feel being minimized. I just want to get to the other side of October 15th. To know that I made it. Alive (oh yeah... I have had many surgeries in the past. This is the first time I have thought, "what if I don't make it?"). I have reason, above the typical risks, to worry about this. To know that it's done. No more fantasy of my body suddenly being healthy enough for "one more". Remove the option so I can move on. Not only am I looking forward to healing from the actual surgery, but I am looking to heal altogether. Get this done so I can resume treatment for RA, etc. Get this done so I can start to process the end of something I wasn't ready to be ended (last week I went through a flurry of purging the attic and house of baby items. All except the crib and changing table. I couldn't bring myself to let go.). I want to move on. Forward. And for the love of God! I would like to have a shot at a healthy Thanksgiving and Christmas...for the first time in FOUR years!!
This is where I am at. This is where I have been. I have not been ignoring or avoiding anybody. I have just been busy trying to keep up with life. I appreciate the concern and you stopping by here and it means a lot that so many take the time to check in. It truly does.
I am hoping to pick up this blog where it originated (a weight loss journey) when I am recovered. Somehow, despite all the steroids, I have dipped well below the weight that started this journey. I haven't researched it yet, but I wonder how much a uterus weighs? Can I count it as an official loss? I am hoping that it weighs somewhere in the neighborhood of 100 pounds. What do ya think?
Showing posts with label remicade. Show all posts
Showing posts with label remicade. Show all posts
Tuesday, October 1, 2013
Friday, January 6, 2012
A New Hope
It could happen tomorrow, technically today. In a couple days it will be four weeks since my last injection. They are calling this the "wash-out" period. All I know is that I cannot wait for some relief. I could be getting my first infusion today. I've been told that I may feel immediate relief. I cannot imagine.
Yesterday, I used a couple sprays of hairspray, the pump kind. A couple. My joints in my index finger felt as if I had jammed them into a wall. Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then. I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh. These things don't happen with healthy joints.
I am tired, exhausted. Not as much as the week of Christmas and New Years, but more than I would like to be. Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins. None of this stops me from doing all I have to do in a day. There really isn't a choice.
These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could. I just didn't know enough to, know. I wasn't sure how I was supposed to feel. It was doing something, but not enough. I am more in control this time. I have a new rheumatologist with whom, I think, there is already a better rapport with. My second visit, he brought in another rheum from the practise. I was sold. This is where I need to be. And then they said the right words for me: "and if this doesn't work, we are going to try that. If that doesn't then this..." They have a freaking plan! OMG! A plan. In the end, if nothing works, I know I will still be better with the plan. Something to look forward to an be hopeful for. Nobody likes to wander down a path unprepared. As my baby boy would say, "Dis is my spot!". Game on!
This is a new year with new opportunities. I cannot wait to do the simple things in life that most of us take for granted. Who knew tapping my foot to the music could cause so much pain? Regardless, I am very thankful for the small steps forward. A year ago, we were all ecstatic that I could dress to go to the grocery store. Even if I only made it there for 10 minutes. That was progress. Now I am able to drive myself, park, shop and load the car. That is the difference a diagnosis makes. So very thankful.
To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this. Never alone, even though many times, it feel as though we are.
Yesterday, I used a couple sprays of hairspray, the pump kind. A couple. My joints in my index finger felt as if I had jammed them into a wall. Actually, it kinda reminded me of the times I caught a softball wrong and jammed my finger then. I removed a couple of ornaments from our Christmas tree and my neck and shoulders are reminding me of those movements tonigh. These things don't happen with healthy joints.
I am tired, exhausted. Not as much as the week of Christmas and New Years, but more than I would like to be. Thankfully, the weakness hasn't settled in and I am hoping that won't be the case before new treatment begins. None of this stops me from doing all I have to do in a day. There really isn't a choice.
These past few weeks have made it clear that the Humira injections I had been enduring over the past year, weren't doing all they could could. I just didn't know enough to, know. I wasn't sure how I was supposed to feel. It was doing something, but not enough. I am more in control this time. I have a new rheumatologist with whom, I think, there is already a better rapport with. My second visit, he brought in another rheum from the practise. I was sold. This is where I need to be. And then they said the right words for me: "and if this doesn't work, we are going to try that. If that doesn't then this..." They have a freaking plan! OMG! A plan. In the end, if nothing works, I know I will still be better with the plan. Something to look forward to an be hopeful for. Nobody likes to wander down a path unprepared. As my baby boy would say, "Dis is my spot!". Game on!
This is a new year with new opportunities. I cannot wait to do the simple things in life that most of us take for granted. Who knew tapping my foot to the music could cause so much pain? Regardless, I am very thankful for the small steps forward. A year ago, we were all ecstatic that I could dress to go to the grocery store. Even if I only made it there for 10 minutes. That was progress. Now I am able to drive myself, park, shop and load the car. That is the difference a diagnosis makes. So very thankful.
To my friends out there who are also searching for relief and trying to take this one day at a time...and not think about what lies ahead, I cannot stress enough how together we all are in this. Never alone, even though many times, it feel as though we are.
Subscribe to:
Posts (Atom)