Hi everyone. I have been online here creeping on people for about a year now, but have just really started to post things. I think alot of me was in denial.
I am a registered nurse and reside in Arizona with my hubby of a long time now. We have no kiddos, but tons of nieces and nephews.
I was diagnosed with Tachycardia and Hypertension 2004, POTS and MCAD in late summer 2017 and gastroparesis April 2018. Prior to the "official diagnoses" I have had all kinds of medical problems since I can remember. But, surprise...alot of my previous issues can be linked to my current issues.
Along with all of this, I also had endometriosis and adenomyosis, which resulted in an early hysterectomy. I have always had periods in life where I get excessively exhausted, had stomach problems, low grade temps and usually once a year an ER visit that ended up with me severely dehydrated and getting fluids.
I went to Mayo in spring of 2017 as symptoms started to occur more often and became more severe. I was frequently stumbling, flushed, nauseated, palpations, extreme blood pressure (high and low), orthostatic blood pressures, exhausted, headaches, and so much more. After months and a couple of different neurologists and cardiologists came the diagnoses. I was already on Lisinopril, Metoprolol, Allegra and Pepcid prior to diagnosis. The doctor changed meds around some and added some more. Now I am on Metoprolol, Pepcid, Allegra, Cromolyn, Multivitamin, Calcium, and attempting Mestinon again scheduled meds and PRN's are Phenergan and Zofran.
I have a cardiologist, neurologist, gastroenterologist and nutritionist at Mayo that I frequent about 2-3 months right now, until things settle down a bit more.
I was doing pretty good and feeling a lot better until this last June and then things have been on a nasty roller coaster then. I earned myself a 5 day hospitalization in end of June/beginning July out of no where. When an "episode" comes on for me, I violently vomit and dry heave. Usually some IV Phenergan and IV fluids and I'm good to go. But, my body had other thoughts. I was three days later that I finally remembered life. Apparently my heart rate was not coming down as I couldn't keep my meds down and I peaked at 170-180 for my pulse and they had to use IV Phenergan and Ativan every 6 hours to keep me from being violently ill. Since then, I have yo-yo'd with eating some weeks and on nothing but clears other. I have been in hospital for 48 hours once again beginning of November for severe dehydration and fever.
Since this time, I have switched jobs from a floor nurse -- per the doctor's recommendation -- and am now a school nurse. I work half the amount of hours a day and have a much more flexible job. I love what I am doing, but miss being a floor nurse.
I've learned the importance of food, mood and daily journaling. I'm learning that these journals have helped us identify some patterns and symptoms. I'm also learning it is ok to accept help and say no to stuff. In September I started physical therapy, since June I deconditioned so much. Prior to June I was going to Yoga/Pilates, running or cycling 3-5 times a week. Physical therapy has been good, but challenging.
I'm hoping that the last five months have just been a bad spell and I will start having more better days than bad....but in the mean time I'm listening to my body, well trying to.