Experiments with broken glass

The irony of a disease like mine and a blog is that on your worst days, when you need to vent and write the most on your blog, your hands are too painful to actually do it. Here I am though and I'll give it my best shot.

In my great wise, pseudo scientific mind I decided to stop my immune suppressant infusions. I have been on these medications for over 3 years so I was questioning whether they were really still helping. I have been feeling awful lately, so honestly rather than my scientific mind it was probably more of my petulant child mind saying "if I'm going to feel like shit anyway why am I putting this poison in my body?".
These medications are no joke. They are extremely dangerous and can create unforgiving situations where people die within days. That's not drama, just reality. So, you can see why I wanted to verify their efficacy.
I have had very good experiences with these medications (known as TNF blockers) all along. My first medication felt like a miracle. I was in absolutely terrible shape at that point having been misdiagnosed for 4 years and simply have a 'back injury'. So, the improvement was remarkable. Sadly, that med stopped working, which is fairly common, so I switched. The second medication was inconclusive in it's effects, but the third was awesome yet again, and that's where we landed until 12 wks ago.

Now 3.5 years later I seem to be suffering from "worsening severe fibromyalgia and myofascial pain syndrome". The flare ups have been getting worse and worse over the last 6 months and were genuinely confusing matters in terms of symptoms and treatment.bit all cane to a head about 12 weeks ago when I had been amidst a, seemingly neverending, flare up and having a lot of trouble dealing with it emotionally this time. I have had a positive attitude all along and generally can handle whatever comes, but for some reason this one was really getting to me. So, finally I told my Dr as I cried in her office that I wanted to stop treatments. "If I'm going to feel like shit anyway, I don't want these medications".

Fast forward 12 weeks later and I am in bed in intense pain and unable to walk much more than you the bathroom. It feels like there's

broken glass in each joint between the vertebrae and like someone is grabbing handfuls of muscles and twisting them as hard and far as they can. The ice picks in my SI joints are getting worse and worse again.
I think the immunosuppressants might have been working.....
I spoke with my Dr today and she is ordering my infusions again. I start next week. Thank goodness.

As miserable as I am at this moment I am glad I did this. When the the risks are discussed with me, which they are every time I go in, I will start least be able to tell myself that it's working and worth it. Once again quality of life vs quantity, but at least I know now that I am choosing correctly.

11 year old lifesaver

No, not the candy kind, the kid kind.
Since my return from Maui my body has not been my friend. I seem to float out of flare ups only to crash back into another one. This time the flare up has been at it's worst for 3 days, which also happened to be when my daughter started school.
I've talked before about the guilt factor and how this effects my family more than me, and this is a shining example of that. My poor almost 4 year old has been relegated to my bed for tv shows, games and movies and occasionally to the backyard while I sit huddled under a blanket on the big cushioned chairs watching him play.
Another thing having him home during bad flare ups does is prevent me from resting. Rest does help the flare up end sooner sometimes, but it always helps my ability to deal with the pain and fatigue while it's happening.
So, as I drove home with my 4 yr old boy, 7 year old daughter, her friend and her friends sister one day discussion began about a playdate. The older sister is 11 years old and my boy B absolutely adore her. He's been in the car carpooling with her for 2 of his 4 years, she is the daughter of a close friend and a helper for our girl scout troop. So, as you can see she's spent some time with him.
As discussion of the playdate escalated B chimed in wanting a playdate with this 11 yr old girl, M. My first response was one of "4yr old boys don't have playdates with 11 yr old girls". But as M stated she'd be happy to come have a playdate a huge lightbulb lit up, albeit dimly, over my head. Would this amazing and responsible 11 yr old who I'd known for 2 years be able and willing to come babysit while I was home so I could rest?
Why yes!! Genius! I told her I'd pay her a little, though her mom told me not to, and it is a bargain for my baby boy to have someone who can physically play with him and keep her eye on him (and the 7 year olds)!
B had a blast, she got to be in charge (heaven for an 11 yr old girl) and make $10 and I got to rest. Win win win!
I feel like the world has opened up with this new possibility of having inexpensive in home help!!
Saved by an 11 year old.

Hope and the land of aloha

 

Vacations are stressful for people with chronic illness. The pressure we put on ourselves is massive. Our constant struggle at home may be Sisyphean, but for some reason we get these crazy ideas that maybe new places, beds, weather, stress levels, food and everything else that goes along with vacation will somehow get that boulder to the top, at least for a little while. In my personal experience this generally creates a situation in which nothing can go right and no one can win. 

A recent vacation with my family showed me these facts in bold clarity. I had gotten my hopes up that I would miraculously feel fantastic the moment we touched down in my favorite place, so when I didn't my heart and mind were bruised and confused. Lucky for me we were on this amazing vacation for 16 days (!) with kind and helpful family and friends so I really did get to enjoy the majority of our time. But, initially my hopes seemed dashed as I felt my [lately awful] normal. 

I'm not here to moan about my first 3-4 days on vacation being miserable for me and how poor me couldn't participate in family fun times. In my view how many people go on vacation and catch a cold or something random and end up in bed the first few days, right? 

What I'm here to explore is why on Earth we continue to build up these expectations of our body's reaction to various situations? Logically, I know that for me when I get my hopes up or my projections out of whack and they don't play out the way I wanted I get frustrated, sad, depressed or devastated, depending on the situation. These emotions do not manifest themselves in happy healthy ways in my (anyone's?) world. I tend to lash out when I'm frustrated or reality doesn't conform to my expectations. I also tend to withdraw when I'm sad or depressed. As you can imagine the worst time to do these things is on vacation, however it happens anywhere I am. Anywhere I set unrealistic expectations of my body and health. Which even after 7 years is still a ridiculous number of times.

I know people talk about hope when it comes to illness, but sometimes I truly wonder how much 

hope is a good thing. You need 

hope in the big picture because without it the 

will to live is severely

damaged, but hope when it spills over into individual circumstances and situations seems to walk a very fine line between expectation and disappointment.
Is this all still intricately intertwined with acceptance? Or can you have acceptance and still experience unrealistic expectations? What do you think?