Well Hello Again...

It's been awhile! I think I've taken the stance of "If you don't have anything nice to say, don't say anything at all." I've definitely not had the miraculous recovery I was hoping for and my improvements have been small and slow. Logically, I knew this was to be expected but it's disappointing nonetheless.

I'll start with the positives. My energy level has improved. I would guess this has to do with the B12 supplement. I'm still taking an oral supplement and I think within the next month or so we'll be re-checking my levels to see if there's been an improvement. As I mentioned in an earlier post, my nausea has also improved. It's no longer 24/7 which is amazing! My "extreme episodes" which usually happen at night are also becoming more rare. Some nights I feel like I'm right on the verge of one of these episodes, but the Allegra/Zantac combination seems to put an end to it. I can feel it the moment those meds kick in and my body instantly relaxes, allowing me to pass out and sleep through the night! Hooray for that!

Logically, I know I've come leaps and bounds since last December. I've had a very active summer so far. Most active days cause me to feel a little like road kill the next day, but it's so worth it for the memories made.  In December, I was so ill that being active wasn't an option. I wasn't able to shop for my girl's Christmas gifts and when they opened them, I watched from the couch. It was the worst form of torture ever, right behind waterboarding! 

So, overall I'm doing much better but I'm still dealing with a ton of daily symptoms that are making me miserable! My everyday symptoms are congestion, ear ringing, tachycardia, shortness of breath, red irritated eyes, sore dry throat, painful joints, burning in my mouth and tongue, burning in my stomach, and palpitations. I've also been having days with extreme weakness and tremors in my arms. It's a lot like having the flu for the past seven months.

After discussing these symptoms with Dr. Goodman, he decided to add a small dose of Zyrtec to my cocktail. Hopefully that will take care of some of these symptoms. For now I'll say positive and push on and I promise to post again soon!

"But the Lord is my defence; and my God is the rock of my refuge." -Psalms 94:22

Amy

A Terrible Night...

Ugh! One step forward, two steps back. And so the dance that is my life continues. Yesterday was not a great day. I woke up with very weak, stiff hands so I could tell my body was upset about something. I sure wish we could figure out what exactly caused my entire system to get its panties in a bunch. I'd be more than happy to do whatever I can to fix it!

I powered through the day and did alright. I had moments where I felt pretty good and moments where I felt like crud! Then I went to bed... My body entered attack mode. I think I've mentioned this before but it seems that all of my really bad episodes happen as I'm trying to fall asleep at night. I don't understand that.

I'm starting to recognize the signs of these episodes and had an idea my night was not going to go well. My arms were very weak and my stomach was burning/hurting and gurgling. I ate a lot of carbs yesterday so I'm sure I brought this on myself. Bread is like a drug to me. I know it's bad, but it's so soooo good!

So, as I'm lying down my heart decides to be crazy. I wasn't having tachycardia but I was having palpitations. It was doing some crazy flip-flops and each beat felt like my heart was going to come out of my chest (even though it wasn't racing). I didn't take my blood pressure because sometimes those numbers can just make me panic but I would guess my pulse pressure was really low. Pulse pressure is the difference between the top number and bottom number on your blood pressure by the way. I was also having some breathing problems. It feels like I have to concentrate to breath. Then, just as I start to drift to sleep my body forgets to breath and I end up jerking awake and gasping for air for a good thirty seconds. Then, the legs started feeling crazy. The muscles got very uncomfortable and they went tense and would not relax. The episode ended with waves of tingles and goosebumps over my entire body and a lot of stomach gurgling. Then, I finally drifted off to sleep! I can't tell you how many times I've chanted "Just go to sleep, you'll be fine in the morning" to myself.

Just for the record, I don't do any form of illegal drugs and this was not a panic attack. Haha! So many of us Potsies (myself included) are misdiagnosed as having anxiety. The biggest relief of my life was my first trip to Mayo when Dr. Fealey looked at me and said, "This is not anxiety. It's not in your head and it's nothing you can control. These are very real reactions caused by dysautonomia." I, of course, broke down in tears because I'm a lady and that's what we do!

Happily, today is a new day! I'm going to avoid carbs and enjoy the beautiful day I have been blessed with. Those episodes are scary and I hate not having control of my body, but they also put everything back into perspective. It was a privilege to wake up this morning (a lot of people didn't) and I will make the most of this day.

"For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God." Ephesians 2:8

Amy

Finding Positives During a Zombie Apocalypse...

Yup, that's how my mind is working today! I don't even believe in the zombie theory, but last night I felt like I was the victim of an apocalypse. A gory, brutal apocalypse.

We had an amazing, long weekend getaway with my hubby's family (see picture below). It was a true reminder of how far I've come since December. I was able to participate (and eat) the entire weekend and even had a few milestone moments. The best moment would have to be my first sip of alcohol in well over a year. I'm not a heavy drinker but I enjoy sitting on the deck with a beer in the summer so I was ecstatic to drink half of a Bud Light Lime! Oh, the simple things in life!

It all caught up to me when we got home yesterday afternoon. Enter, zombie apocalypse and not being able to get off the couch! Of course, my mood followed and I was a grumpy mess until I gave myself a proverbial kick in the pants. Pity party over! I just had an amazing, active weekend and in December I could barely get off the couch. It's frustrating to have a simple family weekend completely wipe me out, but it's not even comparable to how I felt just a few months ago. The best part is that after a good nights sleep, I felt much less like a victim of a zombie apocalypse and much more like a survivor! I've even been able to do some laundry and unpacking today.

As far as the MCAD cocktail, when changes are slow and subtle it's hard to notice them. I feel like my nausea is improving from 24/7 to maybe 5/3! That's pretty incredible! In all honesty, it has not been the miracle regimen I hoped it would be. I'm still dealing with some menacing symptoms, but I'm functioning so much better! I pray that I will someday be back to where I was pre-gallbladder removal but am so happy to be where I am today. If this has to be my new normal, I can live with that.

"The Lord is not slow to fulfill his promise as some count slowness, but is patient toward you, not wishing that any should perish, but that all should reach repentance." 2 Peter 3:9

Amy