Head Bonking

I think that so many doctors got it wrong because I was seeing specialists for each separate issue. They only looked at the issue through their specialist glasses.

The lesson I've learned (and the one you should listen to) is that it's important to tell the doctor EVERYTHING that is wrong, even if it's not in their speciality. There are several things I've been diagnosed with via lab work that I don't mention typically because I'm embarrassed to have so many things wrong with me and thought that the specialist wouldn't take me seriously if they saw the list. I FEEL like a hypochondriac even though everything has been proven via blood work or MRIs, etc.

The last cardiologist was talking to me about something and I said, maybe I should have told you that I have "x" (an adrenal syndrome.) It's so rare that the endocrinologist tested me for it twice because he couldn't believe it. The cardiologist became angry with me that I hadn't disclosed it and accused me of not knowing what I was talking about.

So, before I saw the new cardiologist I sat down and typed out a list of EVERY.SINGLE.THING that I've been diagnosed with, and I think it was easy for him because the puzzle was right there in black and white. 

So, the lesson for me (and anyone reading this) was to not decide for the doctor what he needs to know based on his specialty. I'm still not sure that anyone except a cardiologist or neurologist would have put the pieces together, but I'm glad that now I know.

I'm wondering if growing extra stuff is part of this too. I'll have to ask. It would make sense since the bottom line is that my body doesn't regulate itself. Maybe it doesn't know when to stop generating bone and things like that too. I'm going to make a fine study some day,

I'm not sure how much better things will be even though I'll have treatment. The cardiologist was rather grim. The important thing is that they can do something about the fainting, and that's what matters to me most. It doesn't matter to me that I can't be "cured". I never thought I'd be told why I faint, so this is better than I had a week ago.

So it's OK that this is grim, because at least I know what it is. To quote Lady Gaga, I was born this way, so have learned to work around it for 50 years. But now when I'm tired, I will stop feeling guilty about it. And that is a good thing.

All I can say is, WOW I'm glad I changed cardiologists. You may recall that the last cardiologist told me that I had P.O.T.S (http://www.dinet.org/pots_an_overview.htm), tried some drugs on me (which put me in the ER) and then said to fix my problem I had to wear compression hose, prop up the head of my bed, eat a lot of salt and drink a lot of caffeine. He blamed me for not listening to my body and I never went back because I was embarrassed.

My new cardiologist spent an HOUR + with me today and said that P.O.T.S. is just part of the syndrome. I gave him a full list of all of my medical issues (liver, heart, head, adrenal, etc.) in a nice table with dates of diagnosis. He said that the form of dysautonomia I have is a full on malfunction of the nervous system and is both cardiological and neurological. He said that my previous neurologist needed to be replaced as did the previous cardiologist because they should have figured this out easily if they would have just spent the time asking questions. He said the previous cardiologist was right about eating lots of salt, and drinking lots of caffeine, so keep doing it, but the previous cardiologist was wrong in not investigating further.

He printed out a sheet for me to read about dysautonomia and said he'd give me 10 minutes to read it and that I would agree that it was just like checklist of all of the stuff I have wrong. He was right.

He then told me that he was sorry that I've gone all these years without a true diagnosis because this is an extremely difficult syndrome to live with and its easy to be misunderstood by friends and family. He said that my body doesn't regulate ANYTHING, including sleep cycles, moods, temperature, energy levels, etc.

Maybe now I can be honest with everyone and tell you that there are days that I pretend so hard that I'm feeling normal that it's exhausting and EXTREMELY unhealthy for me. I don't like being a drag, so I keep a lot of it inside until I feel at the end of my rope. I often feel that living alone would be much easier because then I wouldn't have to pretend. HOWEVER, BJ is stuck with me so I push those thoughts right out of my head.

So, moving forward, the cardiologist recommended a new neurologist who will work with him to find medications to help my brain regulate my body and he will work on regulating my heart. He said he wants to put in a little monitor under my skin that will monitor any abnormal heart rhythms that I'll wear for 2-3 years. He said that I'll probably need a pacemaker.

He even told me that losing weight was next to impossible for me because my system is so out of whack. It was nice to hear that because I have been walking at least 15 miles a week and eating next to nothing (coffee, two protein shakes and a banana would be my typical daily intake) and the weight has been stalled for a month. He said to not even worry about my weight. My blood pressure is super low as is my heart rate.

There is so much more to the conversation we had. He said that it's common for people with this syndrome to need to sleep for 14 or more hours at a time, which made me feel better about my sometimes excessive sleep. He said that I've probably been misdiagnosed as depressed, when actually it was just my brain not being able to regulate my emotion as well as my body needing excessive sleep. I'm glad I went off the anti-depressants. They never really did anything for me even though we kept upping the dosage.

I guess long story short is.. My body is just a big old hay wired mess, but at least now I know the reason behind lots of the stuff that my body does (even getting startled so easily.. Which drives BJ nuts...) This is also what happened at the dentist. My adrenal glands went crazy along with my heart.  Several things happened within my nervous system to make it the perfect storm.

He actually offered to call the neurologist from his cellphone in his office to get the appointment set up ASAP. I said I'd call on Monday. He seemed very intent in getting me "fixed", which feels like such a relief to me.

Word of caution to my family. This is hereditary so you might want to read up on it and talk to your doctors about it. There are many sub-syndromes of dysautonomia.

http://www.medicalnewstoday.com/releases/76785.php

I'll let you know how the neurology appointment goes...

I've hesitated to post this because I fear the repercussions (Lori, you should listen to your doctor!) should I screw up my fankle again, but I'm walking again.

I'm back up to 2+ miles a day, but I'm talking it much slower and gentler (is that really a word? More gentle, is weird too.. So I'm sticking with gentler!)

I'm still in pain, but not NEARLY as much as when I re-injured the tendon. It's down to a level 3 or so from a 6-7. I'm stretching before and after and I think that's the trick. No real need to warm up at this point since I'm not walking very fast. For example, Einstein and I walked for almost 90 minutes and only covered 2.5 miles.

I stop walking when the pain level starts to go up (or try to... Sometimes I'm kind of far from my car). When it hits 5 or so, I stop. The pain never goes fully away, which is a drag. I'm learning to live with it, just like my face pain. It is what it is, and I just need to grin and bear it (or become an opioid addict, which I can NOT do AND run a successful business.) Maybe I'll save that for retirement. Ha ha ha ha ha.

Anyway, this was meant to be a happy post! I've lost two pant sizes, and that makes me crazy happy. I went through my closet and rearranged the 20+ pair of jeans into sizes... Smaller in the bottom, larger on top, so I can continue to pack up the jeans as I get smaller and have "new" jeans to wear at my fingertips.

Einstein has lost 2 lbs! I weighed him at the vet on our way home from the White River walk. I've taken him off the low fat food and put him back on regular food. I think he's pretty happy to be off that stuff!

I hope I never ever take walking for granted again.

I mentioned yesterday that I purchased a heart monitor that sends information via bluetooth to my phone when I exercise. The whole setup is pretty neat. When I go for a walk, I get a report showing a map of where I walked (btw, I tend to walk in circles! Ha ha ha), how fast I went, how long I walked, altitude climb, and all kinds of nifty stuff.

I think I’ve mentioned this before, but I have monitors on my treadmill and the elliptical that will tell me what my heart rate is when I touch the heart rate monitor. I thought the elliptical was broken because my heart rate would be 180 then the next time I’d check it’d be at 60, up to 150 down to 50, up and down, up and down all while exercising at the same pace. My treadmill does the same thing. I told BJ about it, but he’s told me it’s just a glitch. I shrugged it off.

My cardiologist told me that I had an arrhythmia after wearing that heart monitor for a week a couple of years ago. I had no idea how much of one I had until I saw the report of my heart activity from the heart monitor I just bought. I didn't do any physical activity when I was wearing the heart monitor from the cardiologist (I couldn't because I had a broken foot), so I suppose I need to report this. My heart goes up and down in huge drops and climbs. It’s so frequent, that it almost looks like a heart beat on a monitor (but it’s not. The report I get shows spans of 5 minutes.) I showed it to BJ and he said, “Wow- that is really happening.” Duh.. I already told him that.

The idea of resuming this cardiologist stuff again makes me a crabby. I've been ignoring their calls for follow-up appointments because I can only mentally handle one physical issue at a time. I know this is probably irresponsible, but I'm going to wait until all my new dental work is done (yes, more backlash from when I fell on my face... the dentist said it could go on for five years after a crash like that.)

It's always something..... bleh.

I hate it that I haven't been writing. I think it's due to a number of things, but I really want to get back into writing again. I love having a record of my life with a search feature, especially with the memory issues that come with getting older.

I'm going to quit worrying about being boring or repetitive. I'm also going to stop writing as if anybody reads this (except me, of course!) I'm not even going to bother catching this thing up. Eventually, I'll get around to the stuff that's happened over the past few months (year, etc.)

So here goes.... Let's hope I stick to it!

My fankle surgeon called me today to see how I was doing. Kinda unusual, right? The last time I saw her was when she told me that the MRI showed a blown tendon and new "stuff" growing back after surgery number 2. I was about four weeks into PRP treatment and still up to a level 5-7 on the pain scale when walking for more than 10 minutes. That was back in June.

Today I was able to tell her that I've been walking an average of 3 miles a day and yesterday walked FOUR miles. Very minimal pain. She was very excited to hear this and wants me to come to her office next Monday so she can document the success of the PRP. I'm her first patient who has had this treatment, and I think she's hoping make a case for using it on other patients. It's still experimental and it was given to me free due to a mix-up at the facility. I've read that the treatment runs between 1200 and 1500, so that was quite a mistake!

I have a lake by the house and I take Einstein with me for laps around the lake. It's a nice walking path and Einstein gets lots of attention and gets to meet new dogs and people. Each trip around the lake is a mile and I started out walking the lake about 3 weeks ago. First one lap, then two and so on. Einstein gives me the stink-eye when it's hot out and I tell him we're going for another lap. Sometimes, he'll lay flat on the ground and refuses to budge. I'll generally give in when he does that because he's typically OK with going a few laps. I'll just go home and finish it on the treadmill, in that case. I'm trying to get in 3 miles a day x 5 days a week. I'll for sure take at least one day off a week.

As you can guess, the weight is starting to fall off rapidly. I haven't changed my diet a bit, because I was not eating much. 1-2 protein shakes a day and Greek yogurt. I think it worked out to under 800 calories a day unless I had something extra, which wasn't often. I'm pretty much on a soft food diet because of my jaw, but that's a story for another day.

I'm so grateful that fanklegate seems to be in my rear-view mirror.