Monday, September 23, 2013

I Need a New Plan

I hope my maple trees are as colorful this year as they were last fall. 

I've only just begun to get my head around the fact that it's September already. And now we're looking at October.

If I hadn't had my weirdo experience with neutropenia after my last cycle of Rituxan in April, I would be due for my next set of infusions right about now. But that's just not going to happen this year. The risk of an overwhelming infection after one of those types of side effects is just not worth it.

Drat.  I have to begin to resign myself to a life without what I thought was my magic bullet. Grumble.

I know. I know. It's not a good thing for me to constantly look back at those post infusion days when I had a marvelous boost of energy that lasted four wonderful months. Last year after my fall dose, I cruised through the holidays enjoying every moment.

 So just get over it, Julia. Move on, already. It is what it is.

Sigh. Easier said than done. So I'm on a mission to find my new normal as my favorite time of the year approaches: a "normal" that will have to include more rest, less holiday activities, but just as much happiness as ever.

Isn't that the way this disease goes, though? It seems that the one constant about living with autoimmune disease is that there IS NO CONSTANT.

6 comments:

Vickie Spires said...

Julia, I think we are entitled to whine a bit. We put up with a lot! All the social kind of things is what I miss the most. I just don't have the energy. It takes all I have to run my household, work part time. My plan is to just scale back on things like holiday decorating, and maybe try to spread holiday preparation out a bit. Would love to hear other "plans."

Julie said...

Julia, I do understand your situation and sympathize with you. I have both RA and secondary sjogrens, and had not responded to any of the 7 bios we tried , as well as the host of other available RA meds, though methotrexate helped for a number of years,.

I currently then , finally have responded partially, to have Rituxan every 4 months, plus weekly mtx. It is far from perfect and still flare alot, with swollen joints, parotids, chronic anemia, fatigue, etc etc etc.

I have a Sjogrens friend who was placed on methotrexate and is doing well with that. I am not sure if you have tried that or not. Chances are, you have.

I hope your coming months are not too hard on you. Chronic disease, for most of my adult life, has taught me that it is all a marathon, and not a sprint. OR the "hurry up and wait" disease. Like hurry up and wait for the correct diagnosis. Hurry up and wait, to find the correct med. Hurry up and wait, to feel any better. Hurry up and wait, when the current drug stops working.

ShEiLa said...

Miss Julia...
You hit the nail on the head. There is no constant with autoimmune disease... No matter how much I want there to be.

My boost of Prdnisone even gave me a false sense of 'I feel so much better'... But it didn't take long for me to realize it wasn't the cure. It helps but...

I love that you have fall colors... Not much of that here in the Southern Nevada desert so I sure enjoy seeing it in other parts of the country.

Kate S said...

I've recently had a conversation with my doctor about the next steps - and they turn out to be not doing much more than what I'm doing now.

Like you, I've had problems with the various meds that I've tried, including recurring infections.

And I'm having a hard time accepting this new normal, especially as my body has recently taken to demanding a 2-3 hour nap every afternoon. Just when you get used to normal, it changes. And frankly I'm angry, though I'm trying to put the anger to one side. But the wha-wha of "it's not fair" hovers in the air for me, and I have to learn to push it away.

On the bright side, you are surround by friends, family and co-conspirators who will help you to have a good holiday season. It may be different, but you have some enthusiastic people around you who will make it fun.

esther hill said...
This comment has been removed by the author.
annie said...

It is difficult when one has been independent all one's life and one is no longer able to do even one thing, to just accept changes and be happy with what we have going on in our lives right now.

Some days it is downright depressing, that even while you're doing all the right things like good nutrition, taking meds, etc. you still fell like you've been flattened by a semi, and this can go on for months, just for no reason. Welcome to the new normal. Even as you tell yourself that you're used to this and it will get better at some point, meanwhile you feel like you should be in a retirement home with the bedridden senior patients.

I dread the upcoming holidays, the extra boost of energy being given to baking (which I love), gift buying and wrapping, and all that goes with the holidays because it leaves me so sick from January and it's not until March before I start to recover. Maybe I should start drinking during the holdays?

Julia, best of wishes for your surgery tomorrow, and hope everything goes well.

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