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!!!

Thursday, June 1, 2017

Cotton Row...What Do YOU Want? What Do I Want?

Race morning...(written race morning before I left)

Well, let me back up (pun intended, that will make sense after this paragraph). Last night my gut was FULL. I had not really pooped all day long. I am a fairly regular pooper so I was not feeling the best. When I went to bed I looked about 7 months pregnant. I actually prayed that I would poop well in the morning.

I should have prayed for sleep.

I woke up at 1. I don't know if I actually went back to sleep or not but I looked at the clock again at 2 and then at 3. I got up about 4. My head was pounding and my stomach didn't feel great. But when I went to the bathroom, I had MAJOR success!!!!

I'm sure my non-runner friends are grossed out about right now, but my runner friends know exactly what I'm talking about!

This morning I'm planning on starting the race with at least 2 friends, maybe 3. We are going to have a conversation before we start about expectations, needs and goals. My goal for that conversation is to be honest. I want to run well more than I want to run with friends. I really enjoy running with friends, in training. I don't really enjoy running with friends in a race. To me it's a race. I honestly believe all three of them are running better/faster than I am right now. What I'm really hoping is that they are running just faster than I am and that they can and will spit my words back at me and pull me through rough patches. And maybe I can pull them through rough patches. But some people don't want to be pulled through. I was completely willing to not race if either of them told me they really wanted company on this run, but I wasn't willing to give up my race if they didn't really care one way or another. In order to know, I need to have a conversation, an honest conversation about what I need and want and what each of them needs and wants. So that will be the first order of business.


(Written today, Thursday after the race.) As soon as we got to the race, Dwayne left to do his own thing and I went off to say hello to the bathrooms! I swear, I have to pee like 20 times on race morning. I think it's just adrenaline, but it never fails!

About 15 minutes before race start I connected with my friends. Two of the three were there, and one extra, I found out later the original number three had overslept.

Let me back up and tell you how this running with friends thing all started...

Remember Bilbo? She was one of the friends. She had been running with a man she has adopted as her dad in several races leading up to this one. He ended up being hurt so she told me a few weeks ago she was probably not even going to do it. He runs much slower and she had not really trained to do this race. I told her she should just run with me. She in turn encouraged another friend who said she wasn't going to do the race to do the race after all. Then that friend talked to another friend on race morning. The night before the race yet another friend (the original number 3) posted her goal. I "KNEW" I couldn't make that goal but I told her she was welcome to at least start with us.

Back to race morning. I found out Bilbo and Number 2 had been training with run 1/walk 1. (Number 3 had no intention of staying with us, she was going to take off pretty much right after the start.). I have been playing this little game when I run. It's a little too complicated to explain, but basically it means I am running by feel. I might run several minutes before I walk, or I might run 1 and walk 3. It's erratic and not really the best thing for someone who has trained her body to walk/run to a set time. I asked them how important it was to them that we stay together. Friend 2 said she did not expect to stay with us. Although she had been running about the same pace as I had been running, it's stressful to try to stay with other people. She said not to worry about her at all.

Bilbo told me it was her NUMBER ONE priority that she not hold me back. Second to that she didn't want to cross the finish line alone. I pushed and pushed her because I really thought that deep down she really wanted me to stay with her the whole time and she was just unwilling to say that. I even told her that's exactly what I would do if she said that's what she wanted most. But she kept telling me that wasn't the case. What she wanted most was to not hold me back. I finally decided to listen to her. We played leap frog until about mile 2. I played my little game, running a couple of minutes and then walking a little. She stayed true to her training-1/1.

Fairly early on we met up with my brother. He's not my real brother, but I've adopted him as my brother. He's a race walker, and darn fast. The three of us leap frogged around each other. I think it was about mile 2 brother and I pulled a little in front of Bilbo. Brother was just ahead of me, until we got to Mountainwood. AKA "the hill". Brother said he was going to run up it, and I was NOT. So he pulled way ahead of me at that point.

Because of my little game I ended up running the foot of the hill to the Mile 3 sign and then walked the rest of the way. When I made the right turn I just kept walking, running maybe 1 minute until the turn onto Bankhead. I started running and saw Brother waiting.

He has had issues with his knees and should NOT run but he does every now and then. He came out to run the last 3 miles of a 50K I did back on New Year's Eve 2014. And he ran again with me Monday. We chatted going down Bankhead. I was talking about CPR and he was admonishing me that CPR wasn't an appropriate topic in the middle of a race. When we got to the bottom of Bankhead I remembered that I really wanted to run my best race so I told him I wasn't going to talk anymore so I could focus on running a little faster. He picked up the conversational slack and started talking more. About bacon and steak and pulled pork and bologna (yuck). He is a meat lover in case you couldn't tell. My mouth was watering and I started planning what I might want to eat after the race. Then he said "PIE". He makes the best pecan pie every year. One year he gave me one to give to Daisy. I wouldn't have given it to her except he TOLD HER it was coming!! PIE. That made me pick up the pace just a bit more. I started thinking "run faster and you can have a piece of PIE"!!

Of course I wasn't saying any of what I was thinking because I really couldn't talk at that point. I wasn't completely spent. But I was struggling and I really couldn't/didn't want to talk.

We turned the corner onto Clinton and I was sad not to see Daisy out there shaking her tambourine like she did last year. (I found out later that she overslept.) I started expecting to see Dwayne any second coming back to find me. We were getting close to mile 5 and he still wasn't there. I began to worry just a bit. But then I looked at the time. It was right at 54 minutes.

My A goal was 1:20. I realized I had right at a mile and a half to go. 16 minutes. My average pace at the moment was right at 11 minutes/mile. I thought I was going to be darn close to that A goal if I could keep running at this pace, or maybe speed it up just a hair. But I wasn't sure I could hold it. I was very fatigued and I was really struggling.

About that time we saw Brother's daughter. We passed her and Brother held back, but then I had to take a walk break at an aid station. They passed me and he told me to stay with them. I said I needed to walk a little more (my game requires me to change only on the top of a's silly, but it's helpful in a strange way). When I started running again, I caught up with Brother but his daughter was just ahead of us. She wanted to stay in front of us. And at that point all I wanted to do was catch her.

But I was on the STRUGGLE BUS.

We turned at the square and then back onto Clinton and I really worried about Dwayne but I pushed that out of my mind and focused in on my target who was still JUST ahead. I started planning my move and shared my goal with Brother who started planning with me. 

And then she did the unthinkable. She started pulling ahead. Like it was easy. Like it was effortless. Like it was nothing. Like she was out for a Sunday jog. 

I knew right then I wouldn't catch her. I was giving all I really had to give. I mean, I could give a little kick-let at the finish (maybe) but she was really pulling ahead and we had not gotten to the mile 6 flag yet. Brother told me if I wanted her I needed to pull the trigger and go for it. I told him I just didn't have it but told him he should go after her, which he did. 

Seeing them running together almost took my mind off the effort I was pouring out. And then I saw the row of flags and pictures of fallen soldiers. About that time I heard someone cheer for me. When I saw who it was, I threw the water bottle I had been carrying over to her and tried in vain to catch Brother and daughter. It was no used. They had pulled too far ahead, and I was running on fumes. 

I felt like I did that very first year coming in to that final stretch. I thought I just might pass out. I'm sure my finish line picture shows my eyes as slits. But I gave it all I had and crossed the line completely empty.

I was so thankful to see a good friend at the finish line. She congratulated me but I couldn't talk for a little bit. THAT is such a great way to finish a race!!!!! I grabbed a bottle of water and turned to go back out on the course to find Bilbo. Although I was really worried about Dwayne I had not gotten a text so I was sure he was okay. I ran down Clinton until I saw Bilbo running toward me. She didn't seem very happy to see me, but she told me she was on the same bus I had been on. She walks SO DANG FAST I had to job beside her to keep up. When we got to the finish chute, I ran to the outside of the fencing and ran in "beside" her. 

I was so very proud of her. As I said, she has been running races with her "dad" and hasn't done one by herself in a very long time. She finished STRONG and she looked really good. She didn't feel good and she wasn't happy with her time, but she had just finished a 10K, that she ran mostly alone. I was so very proud. 

I almost went back out to find friend 3 but I figured she wasn't far behind Bilbo, and at that point I really wanted to find out what happened to Dwayne. And, I had a swim lesson to get to. I found out that Dwayne had finished and went back out to find me but he made a mistake. He thought he could take a shortcut and get to me quicker. I was running a bit faster than he expected. By the time he realized it, I was way too far ahead for him to catch me. 

I'm pretty sure this was my slowest Cotton Row ever. I JUST missed my A goal (by a handful of seconds), but I never expected to make even that so I was THRILLED. I had an honest conversation with a friend about wants and needs and I listed to what she said instead of trying to figure out what might make her happy. I was honest about what I wanted and I didn't sacrifice what I wanted just to try to make someone else happy. It was a VERY GOOD RACE DAY!!!!

This is truly one of my favorite races. I am already looking forward to next year!! I'm hoping to be back in better running shape, but even if I'm not, I know I will learn another life lesson. :D

Thanks for stopping in and sticking around.