The story so far (Part 1 of… several)

I should have started this blog two years ago. But since I didn’t, here’s how this whole thing started:

2011. What a year. In June I was bitten by a tick, while on a friend’s farm in Brandenburg. I didn’t even notice it at the time and when I developed a rash, I didn’t pay much attention.
In July I went on vacation for two weeks, visiting family, and while I was there one of my family members died. I don’t want to go into too much detail about that because I am not sure how much of this my family would want to share on the Internet. But I can tell you this: the funeral was on Friday, I flew back home on Saturday, arrived on Sunday and went back to work on Monday. Physically and emotionally exhausted. And with a big fat rash from the tick bite on my leg. I finally went to the doctor and was prescribed three weeks of doxycycline. That was crappy, I got a bad flu with a fever while I was taking it and just felt generally shitty. Stupid antibiotics.
In late August/early September I had… well, a nervous breakdown. Or something like that. A lot of crying, not a lot of sleeping, and it took a lot of discipline for me to get up and carry on. I’ve been in therapy ever since. And I don’t really want to go into too much detail about that either but I think it’s important to mention because I believe the ALS symptoms have a strong psychosomatic component. Which on the one hand is encouraging because that’s something I can work on. On the other hand it’s a little scary to think I might be THAT crazy…
Anyhow. Around the same time I noticed weakness in my left triceps (doing Pilates), weakness in my left hand (clipping my fingernails) and muscle fasciculations/twitching on my left upper arm and shoulder. My first thought was: “My osteopath will fix this.” But he didn’t. That’s when I got scared. It’s unusual that my osteopath cannot fix something. He suggested I go see a specialist for Lyme disease and a neurologist. So I did.
The Lyme disease doctor had an LTT test done and the results showed… something, so he gave me another round of antibiotics. Three more weeks of misery, and in the end the LTT test result was better, but the symptoms had not changed at all.
And the neurologist… oh boy. The first neurologist I went to was this awful woman who looked at me with an expression of hopelessness and said: “Oh no, I can only think of a really terrible diagnosis for you.” After examining me for barely 5 minutes! Talk about poor bedside manner. (And the fact that in the end she was right annoys me possibly more than anything else.) She wanted to send me to hospital for four days to get everything checked out. I’m not sure if she really thought that was necessary or if she just wanted to make good use of my private medical insurance… Anyway, I left her office, crashed a friend’s date, scared the guy away and cried and cried.
And the next day I called a different neurologist who I knew from work but had been shy about going to. Well, now I was desperate enough to call him on his private cell phone on a Saturday afternoon. I got an appointment with him the following Monday and he calmed me down and said : “All I see right now is a local problem, so let’s examine this bit by bit.” He did an EMG of several muscle groups in my left arm to confirm that something was indeed wrong. And it was. Then he ordered an MRI of my neck. That didn’t show anything. Then he prescribed physical therapy to get rid of neck and shoulder tension. That was lovely but it didn’t help.
And then… I insisted on having my spinal fluid tested because I was still afraid of Lyme disease. And being told that “that would be very unlikely” wasn’t quite enough. So I went to the hospital from December 21 until December 23, 2011. This was my first stay in a hospital and it was shocking and how on earth people get better in these places is beyond me. They tested my spinal fluid and didn’t find anything. And they did an excessive EMG of muscle groups in my whole body and apparently found several abnormal reactions, which led them to diagnose ALS. And in another shocking exhibition of poor bedside manner the doctor told me the diagnosis and went on to explain: “There is an unusually high incidence of ALS in football players. There was this one guy… Really famous… What was his name? He died from it.” At which point I interrupted and pointed out that I didn’t need to talk about someone who had died from this. Minutes after being diagnosed with it. What’s wrong with people?!
And this was December 23, so Merry Christmas…

When is “then”?

You know how people sometimes say stuff like “When I get this job, then I’ll be happy.”? I do that all the time. In this case: “When I’ve sold my studio, then I’ll have less stress.” Well. Hasn’t quite happened. I knew I wanted to focus on my healing and that means a lot of appointments with therapists, doctors, healers but… it’s gotten a little out of hand. I feel like an old lady who goes to the doctor every day (and don’t even get me started on the amount of pills I’m taking, all supplements, that’ll be another post). And I’m starting to think that that’s counterproductive and it’s keeping me from actually feeling better. If only I had more time to relax, de-stress, meditate, hang out with friends… That’s ridiculous! I don’t work. I do have time. Except… I have all these appointments. Maybe I should cancel them all. Or at least some of them. But here’s what happens when I try to do that:
* Occupational therapy (once a week): No, can’t cancel that, that’s very important to keep my hands going.

* Physical therapy (once a week): No, that’s very important for the rest of my body. Well, as soon as I find good physical therapist…

* Psychotherapy (once a week): Are you kidding? I so need professional help in dealing with this. I should go to her every day.

* Bioresonance (once a week): It’s a weird method and I’m not entirely sure about it but I’m very sure about my bioresonance therapist, she is fabulous and I absolutely trust her knowledge and her intuition. And some days bioresonance is the only thing that can make me feel better.

* Osteopathy (every other week): Forget it. My osteopath is amazing and is helping me so much physically and emotionally.

* Dentistry (twice a week for a little while): I know there’s no guarantee that this will work or that this dental stuff is at all related to ALS but I want to try it. When all this dental work is done, then I will relax and destress!

* Miscellaneous: I’m seeing the doctor about nutrition right now and through her lab tests she discovered a potential autoimmune process going on in my body and potential problems with my thyroid. Interesting and important stuff. And now I need to track that down with more doctors appointments. So when all that is done, then I will relax and destress.

See what I mean?

And it’s difficult because I’m so scared of missing something. Something that could be helpful.

Well. For me for now “then” is going to be in November: I’ve canceled all my appointments and I’m going to visit my cousin in Canada, to spend time with family, do yoga, and meditate. I’ll let you know how it goes.

Doing something feels better than doing nothing

Last week was rough.

I thought a lot about the two conflicting opinions regarding my dental situation.

And had an argument with a “friend” on Facebook about evidence-based medical information. It was upsetting and I don’t want to talk about it… Except apparently I do, so here we go:
This person (I think they work in medical research) pointed out that there was no evidence to suggest a link between dental work and ALS. Well. First of all I think it’s important to be realistic about this so-called scientific evidence: Just because there is no EVIDENCE that something could be helpful doesn’t mean that there is no POSSIBILITY that something could be helpful. It just means there is no evidence: maybe there haven’t been any studies or science just cannot explain a particular  phenomenon yet.
And I knew that there is no known link between dental work and ALS because there is no evidence suggesting anything helpful for ALS. So what am I supposed to do? Wait for evidence-based medical information? Uhm, no. I choose to explore and actively look for things (anything really!) that can help me, make me feel better. And I’m not focused on ALS related stuff only. I’m really on a huge self-improvement trip and that’s why it’s quite interesting (when it’s not shit…)
So. In this case I decided to go with dentist 1. This is a guy, who not only has over 20 years experience in dentistry but also homeopathy. Someone who thinks outside the box and tries things out. His lab tests determined that I was most allergic/sensitive to palladium which gets mixed with gold to be made into gold crowns. I have one tooth with a partial gold crown and that tooth had to be pulled. Extracted. I know that pulling a tooth seems like a pretty drastic thing to do when there’s no guarantee that it will help. But this tooth was all the way in the back and it was dead anyway (root canal and partial crown), so I figured, what the hell and had it pulled on Thursday.
Parting with a tooth is a weird experience, very unpleasant. The tooth came out okay, in one piece and everything went about as well as can be expected. But it’s sore and I’m not feeling that great. But I think this was the right thing to do. We’ll see.
My synthetic fillings are next, they have to be replaced. And then we will get to the mercury fillings. Have I mentioned that I am so terribly scared of the dentist… Sigh.

PS: The dental surgeon who pulled my tooth told me that after an extraction in the upper jaw about 10% of patients develop a hole to the maxillary sinus and then they are not not allowed to blow their nose for about two weeks. So guess what…
Just kidding, I’m part of the other 90%, I can blow my nose as much as I want.

2 dentists – 1 set of lab results – 2 opinions

I hate everybody.

Here’s the story:
In my search for things that might heal or at least help me feel better, I started thinking about my teeth a little while ago. That has always been a weak point for me, I have quite a collection of fillings, root canals etc. in my mouth. So, a few weeks ago I went to a new dentist, who specializes in sensitivities to materials and a holistic approach to dentistry. He ordered a bunch of lab tests (blood, saliva… don’t ask) and the results were quite spectacular: I am apparently allergic/sensitive to absolutely every filling material I have in my mouth. Which, in a way, was good news because there is a lot of potential for me to feel better once we take all the stuff out. One would think.
Well. Today I went to another dentist because I wanted a second opinion before doing something drastic like literally pulling a tooth (root canal, partial crown and everything) and replacing six fillings. And this dentist looked at the same lab results and said he wouldn’t do anything. According to him the lab results only showed potential for an allergic reaction but I didn’t have any of the typical symptoms. So while it was important to consider the lab results for future fillings, there was no reason to believe that any of my existing fillings were giving me any trouble.
Both dentists seemed reasonable and knowledgeable and made perfect sense when they were explaining their points. How can this be? I hate everybody.

This is part of a bigger problem though: There seems to be no objectivity, no clear right or wrong on this path I’m on. Just a bunch of opinions and at the end of the day I have to make a decision and live with it.

I’m leaning towards dentist 1. My feeling is that I have stuff in my mouth that is not good for me and needs to be taken out. The thing is though… I’m not sure if that’s really my gut feeling or just the fact that doing something feels better than doing nothing.

This really sucks.

I will keep you posted.


(originally written Oct 7th 2013)

What’s going on right now

I should start by saying that I am not in pain. And I’m very thankful for that. I used to say that on a scale of 1 to 10 this situation was a perfect 10 but I have downgraded it to a 9. I may get scared, upset and frustrated, but at least I’m not in pain. Phew.

At this point I have symptoms of weakness and paralysis in my hands/arms and legs. It all started in my left hand and arm and then spread to my right hand and arm and then my legs, so the hands and arms are affected the most.
What that means in my everyday life is that I struggle with a lot of little things (buttons and zippers are a nightmare) and everything takes longer. EVERYTHING takes longer. And I’m not the most patient person in the world… This is where it gets interesting though: I used to really rush through life and do as many things as possible at a time and that is just not an option anymore… I mean, right now! (I try not to use the phrase “not anymore”, and replace it with “not right now”. Nothing is final here!) So, doing even two things at once doesn’t work right now. And by two things I mean something basic like getting a Chapstick out of my backpack and putting it on, while walking… Now it’s: stop walking, put the backpack down, get the Chapstick, put it on, put the Chapstick back in the backpack, but the backpack on, continue walking. Which can be frustrating. Or an exercise and mindfulness. (I’ll get into the whole mindfulness thing at some point but right now I want to give you an idea of what’s going on.)
So back to my daily challenges, some things I really can’t do right now:
Eating with a fork and knife like a civilized person… It’s fork or spoon in the right hand and shovel it in. I’m okay with that, it’s more comfortable anyway.
Eating with chopsticks. That one was a little rough. Being lectured in a Japanese restaurant by a waitress who has likely never been to Japan on how Japanese food is eaten with chopsticks, was a little more than I could take. But that moment passed and like I said, I’m okay with fork or spoon.
(By the way, if anybody wants to invite me to a fine dining experience, I’m pretty sure I could still manage without making too much of a fool out of myself. So feel free!)
Typing with 10 fingers. I can only do that theoretically right now. I am dictating this blog and typing shorter things with two fingers. My middle fingers because they still extend the best. Which seems appropriate.

As for my legs, I can’t run right now and my usual form of speedwalking is a somewhat distant memory. And balance is a challenge, which really sucks because if I fall, I fall spectacularly, because my arms and hands can’t support me right now. I have only had one really bad fall though, it’s not like this happens all the time. And I’m working on my balance, good thing I’m a Pilates trainer (though currently unemployed).

So. I was going to write more about my occupational therapy and physical therapy and about life after Studio A Pilates but I’m out of time… As so often happens right now.

Health and happiness!

(originally written Oct 6th 2013)