Wednesday, July 5, 2017

I Am Determined to Be Okay

...even if my health is not what I might want it to be.

A while back a friend told me I needed to get really mad. I need to rage against this thing. I needed to beat a punching bag and scream. But I've done a lot of that in my life. (Okay, I kind of did that very thing this morning...ask Dwayne.) But it doesn't do anything except cause pain. Getting mad doesn't make anything change. Being angry just keeps the hurt in and the change away. Raging against something doesn't make it different.

I really don't have to be mad to be determined.

I have waffled in my determination in this last year and a half. I have had many times that I have just been tired of trying. I have had times when I have just given in.

Those times don't last. They don't last because that is not who I am. I'm not a quitter. I have quit a lot of things in my life, but I am not a quitter. I don't give up. I don't give in. I don't back down. (At least not for long.)

Part of the issue for me is that when I renew my strong will, I can end up taking on too much at one time. I don't just vow to make small changes and build my way into strength. I don't just take small bites of the whale, I try to stuff that whole thing in my mouth at one time!!

That's not a bad thing unless I get choked and spit it all out.

Here's the thing...I can only do so much. I can only "control" so much. I can only work so hard. I realize everything is not up to me, but some things are. Many things are.

I'm at my heaviest weight. I've been here before, a few times actually. This is my "line in the sand", my "wake up call" weight. My "what are you doing" weight. My "things have to change" weight.

I want to be clear. It's not the number that really matters. It's what's behind that number FOR ME. For me this number means I have not been taking care of myself in the best way I know how. This number means I've stopped chewing the whale and spit it out. It means I've stopped trying. It's a symptom. It's a sign.

But it's not over until it's over.

I've been sort of waiting until I was done with steroids to get serious about trying to lose this extra weight. I didn't gain it all from the steroids, but about 15 pounds of the 20 I'm going to blame on steroids. Well, I'm done now. It's time to get back to eating that whale.

Again, the number on the scale is not the critical thing. The most important thing is what I'm doing to take care of myself: eating healthy food that fuels my body, moving my body, feeding my mind and my soul...and doing those things because I am worthy of health not because I'm wanting that number to change. Not even because I think doing those things will change what's happening in my brain/body. It's about doing those things because that's what I KNOW is the best for me. It's certainly NOT best for me to eat the amount of sugar I've eaten in the last week. It's not best for me to be sedentary. It's not best for me to wallow. It's not best for me to quit being determined.

Thanks for stopping in and sticking around.

"Melinda Mae" by Shel Silverstein

Thursday, June 29, 2017

I'm Not Okay I am 34,500 mg of solu-medrol later and I'm really not okay.

I'm better than I was. I have had some exceptional days in the last 15 months. I've had days I thought this whole thing was going to be a bad memory I would never have to remember again. I've had days I thought I was back to my own version of normal. It hasn't all been good, but I have had a general upward trajectory that had me convinced I wouldn't be in the pit again. At least not with this same thing.


I'm not okay.

Something is very wrong.

I am not have the same thought problems that I was before and that's a REALLY GOOD THING. I am not having the same level of word finding problems that I was before and that's a REALLY GOOD THING. You know I LOVE words. Not finding words is torture. :D  But I'm having really strange symptoms that come and go like ocean waves.

Nausea (that seems new, I don't remember feel that before)
Right ear pain
Head bobbing thing
Emotional craziness*
Not being able to "get things done"
Memory issues (but this isn't nearly as bad as it was)
Tingling/numbness in my hands and feet (and down my arms)
Extreme fatigue
Sleep issues (this is in no way correlated to the fatigue)
These weird electrical type pains that shoot down a limb at strange times
Electrical sensation in my tongue (this happened once-SO STRANGE)
Random swelling in my hands, knees, and feet (this doesn't seem related to food at all but who knows)
Pressure in my head (feels like my head is very full but it doesn't seem like sinus stuff)
Low back pain or neck/base of skull pain (not related to physical activity)
Intermittent blurry vision (this might be completely normal from what the eye dr told me but it feels very related and random)
Random I will be walking and all of the sudden a pain shocks me to the point I almost stumble, or I'll be sitting at my desk and a random pain makes me double over or suck in a deep breath.
It hasn't happened in a while (like a month) but there's a strange thing that happens where I feel like things are backward. A couple of examples: I was driving and really felt STRONGLY that I was on the wrong side of the car and the wrong side of the road. Last year it showed up when I would type-I felt like my hands were on the keyboard wrong. In both cases I would sit there and look, trying to figure out how it could possibly be different (there isn't a steering wheel on the other side of the car, there's no other way to have your hands on the keyboard).
My brain feels "hot" or like it's burning sometimes. Not like a fever, but like there's a fire inside of my head. I used to think this was psychosomatic because there's a book called "Brain on Fire" but it's not there all the time and it shocks me when it's there.


Let me be clear....the type of antibody that was attacking Susannah Cahalan's brain is NOT attacking my brain. Her condition progressed very rapidly and was severe. There are numerous types of autoantibodies and they attack in different ways. They didn't identify the autoantibody that is causing my trouble. (My spinal fluid wasn't sent to Mayo Clinic and HH doesn't run the same battery of tests. By the time I got to Mayo I had already had 7500mg of solu-medrol so the doctor said doing another spinal tap wasn't worth it because we already knew steroids were working and it might not even show up.)

My hope is to find out the CAUSE of this thing that is happening to me, not just to find a drug that will slow/stop the symptoms. A lot of doctors say it's impossible to find a cause but not all of them say that.

I have an appointment with a doctor in Chicago a week from Monday. Well, I have an appointment at the clinic and most likely I'll see both doctors! They do EXTENSIVE biochemistry testing. I don't know if this is the answer (or part of the answer) but I feel confident that this is a good direction for me right now. After the appointment I get the labs drawn and then it takes about 5-6 weeks to get results and analysis. So...we shall see.

All I can do right now is keep moving forward. It's like Ironman. It doesn't always feel good, but sometimes it does.

Thanks for stopping in and sticking around.

*So I feel like I should clarify what I mean by "emotional craziness" since if you know me, you know I'm a highly emotional being. I mean that sometimes my emotions don't seem to fit with what's going on. Specifically I am crying a lot. Randomly. Unrelated to what's happening or how I'm really feeling. This is different that my normal "cry at the simplest things" way of life. So far I haven't laughed inappropriately so that's encouraging I guess.

Friday, June 16, 2017


THIRTY FOUR THOUSAND FIVE HUNDRED: the number of milligrams of methylprednisolone sodium succinate (Solu-medrol) I have received over the course of the last 442 days!!

And, today was my LAST TREATMENT!!!!

To say I'm happy about this is an understatement.

The big question of "did it work" is really yet to be determined. All-in-all I'm doing MUCH BETTER than I was. In that regard (symptom treatment) I have responded to the steroids very well. I can't say right now if the put this condition completely in remission. It would be a while before I would know that.

I'm saying "would" because I am being proactive and have made an appointment with a functional medicine doctor for mid-July. I've had some strange "symptoms"* that certainly seem to correlate to steroid dosage tapering. (*Because they aren't as bad as they were I hesitate to really call the things that I've experienced as symptoms, but if I'm being completely honest, I'm pretty sure they are symptoms.)

Sure, it's pretty when it's in bloom...
...Let me tell you a story. The third house I owned had two very large green "bushes", one by the front porch and one out in the backyard. I didn't know what they were but they looked like giant weeds so I set about digging up the one in the front, GIANT root ball and all. My grandmother came to visit me not long after that and asked me about the beautiful hydrangea bush in my back yard! Turns out that weed was a very well established (and hard to grow) hydrangea bush that would have bloomed with beautiful flowers if I had just been patient enough to leave it alone!

...but so is this one!
In that same yard (after this experience) I saw what I thought was a lovely looking, berried, plant growing heartily. I decided to just let it grow so I could see what wonderful flowers would emerge.  ...until I found out it was (poisonous) "Polk Salad" when my neighbor asked why on earth I had not pulled it up.

Here's another story for you.  An athlete of mine a while back was training for a half marathon. One day she texted me to say she had been having some pain in her shin and she was going to the doctor. I asked how long this pain had been going on....weeks!! She just thought it was normal "working out"/"getting fit" pain but found out it was actually a stress reaction/fracture.

We don't know what we don't know. I don't know what I don't know. Functional/integrative doctors take a big step back from the "symptoms" and look at the person as a system of systems.  They strive to answer my all-time favorite question...WHY??!! Why did my immune system decide to attack my brain? Why does it attack my thyroid? If I'm simply treating the end result without knowing why I haven't solved the real problem. I get that sometimes you can't/won't know why things happen, but there really are answers. And if that "upstream" issue isn't solved my immune system might decided to attack something else next.  And...if it is perfectly in line now, having been beating down with the steroid treatments, then the functional doctor won't find anything to treat.

For now, I'm going to take a nap and then I aim to CELEBRATE!!!