"Remission-ish"

I returned just now from a 2.5 hour drive home from Providence, where I spent three days at an Executive conference for my company. As many of you know, I am lucky enough to work from home, but a few times a year I travel to conferences, meetings, and once a year on an international incentive trip.

These conferences are jam-packed, intense, and full of information There is very little time off and in the past three years, I have always had to leave mid-presentation to sleep for several hours or to get some quiet due to some kind of horrendous health issue. As a high profile consultant, I have HATED that, because people notice when I am gone and I've always felt pressure (from myself) to "be there" no matter what. But I couldn't. For years. I will say, though, I ALWAYS showed up. 

I once went to conference in Palm Beach 6 days after a c-section to remove a coconut sized endometrioma, against my doctor's orders (until I insisted he give me the ok). I went to an Executive Summit on IVs. I went to Mexico in a wheelchair and relaxed with the owners of the company under a palapa by the pool with my IV bag hanging from a palm tree - no joke. I show up. 

These past couple of years on oral antibiotic treatment have been VERY rough on me. It took almost a year to kick the Babesia enough to move onto Bartonella protocol and once we did that, the switch whacked me on my noggin' but now that I am a couple of rounds in to that, I seem to be evening out a little. Last week, prior to conference, was the first week in over a year and a half that I have spent more than 4 hours downstairs in a row at all, much less three days in the same week. That was a big deal. Now, while I had been downstairs quite a bit last week, I still felt like DEATH and was forcing it on myself. I fully expected that this past weekend would be the end of me.

It's amazing how previous health experiences can put patients into full on PTSD mode - expecting the worst. Guilty as charged. It's good to be realistic, to be honest and prepared, but I am reminded that I am as responsible for setting myself up for success in my day, as I am in my business. Thankfully, even though I uncharacteristically went into this conference with the assumption that things would go badly, I allowed the positive to take over and when I felt like I was just too exhausted to sit another minute, I went outside the room and rather than going to my room for a long nap, like I have done in the past, I took a 5 minute standing breather and went back in. And I made it. 

And I had FUN!

Now, I know that this process will be one of baby steps, but babies become toddlers and.. TODDLERS ARE FAST!!!!  None of this means that  I am in the clear, but Dr. J DID say I was weeks away from the beginning stages of remission and I have to say, this feels... "REMISSION-ISH"

Memory Pie

I have been making extra strides to push myself further than I may feel ready; trying to stretch my energy muscles, my mind in to a state of uphill movement, building stamina, perhaps by seconds, but by seconds no less.

Sometimes I succeed, sometimes I don't. This morning, Mini let me sleep an extra 15 minutes and for some reason that made all of the difference in the world and so once I gt myself up I surprised her by telling her we were going to bake an apple pie. Like RIGHT NOW. Because I knew RIGHT NOW was what I could guarantee.

In the past and in my current mind, I am the kind that makes everything from scratch, makes those perfect little cut out leaves to place on top of the pie crust etc, but today it was basic, we're baking a pie. Here's a memory in a pie for you, Mini. A pie.

I peeled and sliced that apples as quickly as I could and pre-measured all of the ingredients and got a big mixing bowl. Mini jumped into the baking pod, a standing box where she can safely get a boost and cook with me on the kitchen island without fear of falling, and then started mixing the dry ingredients, dumped it into the apples and them refused to get her hands yucky to fold the apples into the mix, so I did it and then dumped them into the unapologetically pre-made frozen pie crusts.

The whole thing took my maximum of 20 minutes standing without discomfort. I have been complete putty ever since, but I am proud of myself of getting that Mommy and Mini project done today.

After all:
You are only as happy as your saddest child.

Expectations

It's been radio silence from this end for quite some time now. And I could get into myriad of things that I have been up to such as the 100+ interviews I have been blessed with to spread the word about Lyme, the collaboration I have been working on with a team of consultants for Dr. Jemsek's ILADS presentations in October, and just plain living my life. There is truth that lies in all of that.

The latter is an important one because weight lies in the time when one can take a step back from a serious prolonged illness and actually begin to identify himself as something other than a sick person or even the illness itself. I have to say, however, that I don't think that I have succeeded at that, much as I may have tried.

I have drastically improved, but I am not completely in remission. Dr. J says it will be a matter of weeks, not months. Right now my biggest hurdle has been my inability to detoxify. At the moment I have dangerously high levels of ammonia and we are trying a new route in lowering those levels and removing the harmful chemical from my body. And I feel like shit.

I cry a lot. I am in bed all of the time. I hurt a lot, especially in my upper spine, which has been unbearably tight, but I feel as if I will go through the roof if someone touches me there so massage is out. As directed, I took Marinol pretty regularly for about a week and finally my muscles released. When they tighten up again, I try to nip it right in the bud. It's been a rough go.

But I think the real reason I haven't written is that I feel almost like I am failing you as readers, followers, and even those of you who refer to yourselves as fans. It saddens me that I am not living up to your expectations, or at least the ones that I have created in my mind that you may have of me.

It's been a year since I submitted my manuscript for editing and I sat in my sauna today trying to detox the ammonia, while reading Twist. When I read the chapter Happy,  I found myself wailing in a puddle of tears, realizing that it has, again, been a very long time since I felt truly happy. I am not sure I would know happy if it hit me in the face. Sometimes I feel content, like I have some direction, like I know which direction to go to find my happiness. I have come to the realization that to find that happiness will involve a move for Mini and me. It's a big step, but if you read my book, you will remember that I moved here unwillingly in a trauma because I was sick and I remain here because I am sick. And I believe that this final component, the one that will drag me out of this hell, will be to start a new life, much like Dr J wrote about in the Foreward of Twist.

I have had some wonderful things happen. While in DC a couple of weeks ago in meetings preparing for ILADS, I was interrupted three different times to meet fans of the book. This was such a high for me, because as soon as I entered the room there were tears, hugs and thank yous that I never expected. With their permission, I am posting these pictures that honestly made my, well, more than my day - it made all of this work worth it to know first hand how deeply I touched these patients. What they don't know is that night I slept from 5pm until 8am the next morning and upon grabbing my coffee at Starbucks on my way to work some more on the presentations the barista said, "You look sad." And I recalled my chapter called Invisible Illness. I had my normal face on. I was just tired. All signs have led to a reread of the book.

Meetings these ladies and spending some time with them truly warmed my heart. I am so glad to have given them hope and something/one to relate to while going through, what I know is, hell. I just don't want to let them down. But as patients and advocates, we must stand in our truth and right now, I am frustrated. I want more. I want to be done. I know I am close. But it's not close enough for me. I want all of us to be done. And I want justice. 

When I get like this it's always a combination of illness, sadness, and anger. At the same time, I look back and realize how far I have come and i am eternally grateful for that and everything Dr. J has done for me because he has truly saved my life and its quality. But I am sick of my bedroom. I am sick of not driving. I am sick to death of this Disease and watching people suffer. 

As usual, I am my real self. I am struggling to stay awake, my eyes heavy and hot. I have a conference coming up and I hold a pretty hefty place in the company. I am terrified of having to leave at some point to pass out, like I have done during previous conferences. It's embarrassing and frustrating for a hard-working, A-Type personality like me. But I have learned to take myself as I am and just hope that those around me will do the same. 

And so I apologize that I haven't written. I have been waiting for the HURRAY! post, but I just don't have it for you yet. I hope I haven't let you down. According to Dr. J I am just weeks away from feeling better than ever. And I can't wait. Maybe thats why i am so impatient. But for now, I write to you at 2p.m. from my bed, having thrown up uncontrollably after a long sauna which probably helped in getting me ammonia detox going. 

What a long, tough road this is. And there you have it. Expectations are tough.