Health

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, The Hubs 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 The Hubs 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 been telling family and friends that I can only deal with one thing at a time. Some of it is work-related (because I can't take a lot of time off right now), but most of it is that I hate medical stuff. For someone who has so many things going on, hating medical stuff is probably not a good thing. I haven't seen my PCP in over two years. I have all kinds of annual stuff I need to take care of piling up.

My dental stuff for this year will be finished in two weeks. I'm going to wait to finish up the last of it until I have more insurance benefits at my disposal. I'm going to postpone the jaw surgery until next year (if I decide to do it at all. Maybe I'll just eat soft food the rest of my life.)

Yesterday was a very strong reminder that I need to get back to the cardiologist. I've been meaning to do it for several months now, and even more-so after seeing the feedback from the sports heart monitor I'm wearing when I'm exercising. My heart rate is erratic and it's disconcerting.

I didn't want to go back to my previous cardiologist because he blamed me IN A VERY LOUD AND MEAN WAY for not listening to my body. He made me feel ashamed that I can't feel my body signals. I think that not feeling my body signals has been helpful with the pain issues, but I can't help it that I don't feel the tachycardia coming on (though I sure did yesterday!), and no amount of pointing fingers at me is going to change that. Doctors intimidate me and when I'm intimidated, I avoid.

I'm switching to The Hubs's cardiologist because he's done such a good job in fixing up The Hubs. The Hubs's only beef with him is that he harps on weight loss. That's fine with me since I'm actively working on that.

Anywhocares- my appointment is a week from Friday.

...so far, anyway.

I'm getting toward the end of my mouth repair from the fall of 12/08. I hope so, anyway- though the dentist said we could see problems for up to five years.

Today I was scheduled for six crowns at a time- some new, some replacing old because the teeth were cracked underneath.

This required a lot of Novocaine (or whatever dentists use these days.) Within minutes of having my mouth shot full of Novocaine, my heart started racing and I started shivering uncontrollably. I started crying out of nowhere and worked really hard to stop myself. My whole body felt completely out of my control. It was HORRIBLE. I was trying to maintain my cool, but it was difficult.

The dental assistant called for the dentist and they stayed with me until the worst was over- about 15-20 minutes. He told me that the stuff they use has epinephrine in it and he used a lot of it today and then related it to the scene in Pulp Fiction where they jab a shot of the stuff into someone's heart to get it started. NICE IMAGE, Doc!

My heart kept going through cycles of racing after that. I was laying in the dentist chair the whole time thinking I should probably go to the hospital. I'm glad I kept my cool though because it did eventually become less and less horrible. I'm still having some issues, but it's better than it was.

The dentist said he won't be using that on me again, he'll use something doesn't have epinephrine in it, but is less effective . Right now I don't even care if I have ANY numbing stuff. I never want to go through that ever again.

Not to sound even MORE dramatic, but I think I've just had my first glimpse of what a heart attack might feel like.

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 re-injured the previously healed tendon last night while working out on the treadmill last night. I'm SO angry with myself. I felt a little "ouch", but then kept going. And then I felt a big ouch and stopped.

OK, OK, I get it. Stop when it hurts- ESPECIALLY on the right fankle.

I had to cancel the case study MRI scheduled for tomorrow (obviously), and I'll be calling them back when it's healed again. I called my fankle surgeon and she said to stay off my foot for a couple of weeks and baby it.

::shakes my fists in the air:: WHY????????????????????????????????????????????????????????????????