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
Showing posts with label Episode. Show all posts
Showing posts with label Episode. Show all posts
Saturday, June 15, 2013
Tuesday, April 30, 2013
Flare, Flare Go Away...
For those of us in the chronic illness business, a flare is a period of time when our symptoms are markedly worse than usual. Starting last night, I'm having a flare within a flare. Lucky me!
On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.
This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.
This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!
On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Amy
P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)
On December 3, 2012, I woke up from gallbladder surgery and my life was different. I knew it the moment my eyes opened. My body was in full attack mode, the start of Flare #1. I've been doing much better the last month or so. Definitely not my old self, but I'm functioning and caring for my precious babies without assistance and that's a win in my book! Then last night my body decided to give me a little reminder flare. Just in case I forgot how bad it can be.
This episode wasn't as bad as the episodes I experienced last December, but it was bad enough. I felt off all day yesterday. I can't pinpoint exact symptoms, just a general yuck feeling. Tired, nauseous, just off! Then last night, I had an episode after eating supper. It's interesting to me that my bad episodes are either shortly after supper or just as I'm drifting off to sleep. Anyways, I ate and shortly after I got that all too familiar wave of tingles and chills. This is always how these episodes start. Soon after, I got extremely nauseous and my resting heart rate went to 132 beats per minute (it's usually closer to 60). Then, I got the strange burning sensation in my stomach. It's not like an indigestion burning. It's more like the way your muscles or lungs burn after a workout. Like they are starving for oxygen. Luckily, this all passed within an hour, but I was left exhausted.
This morning I'm left with the after effects. Some lingering nausea, very weak arms, and a heart that wants to race every time I lift my finger. So, I'm loading up on Gatorade and forced myself to exercise, which is not easy to do when your heart is racing just sitting down! I'm extremely proud of the fact that I now have my Body Mass Index back into the normal range and I intend to keep it there! There is so much in my body that I can't control, so I am adamant about controlling the things I can. If there's one positive that's come from this flare, it's that I'm now more focused on living a healthy lifestyle (I've got a long ways to go though)!
On a side note, this is the worst episode I've had since my body started making its turn around. Dr. Goodman had me stop taking Zyrtec and Zantac (which I had started when I suspected I might be dealing with a mast cell issue) so we could focus on correcting my deficiencies. I'm not sure if it's coincidence or not that this bad episode comes after I stopped those medications. It's the only change I've made that may have caused this flare within a flare. Not that my body ever needs an excuse to act wacky! Dr. G. really wanted me to give these supplements three or four weeks before adding in the "Mast Cell Cocktail" so I'm going to try my hardest to stick it out. As Dori from Finding Nemo would say, "Just keep swimming!"
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10
Amy
P.S. I hope I'm not being too much of a complainer with my posts lately, but this blog is a great way for me to journal these episodes! I'm very forgetful and by next week I probably won't even remember that I had an episode! :-)
Tuesday, March 26, 2013
Rollercoaster of Emotions...
Apparently my body didn't get the memo about me being a princess. This week has been miserable and it's my birthday week. Yes, I take an entire week for my birthday. I am a princess after all! Some of it is probably my fault. I did clean and scrub cupboards yesterday. As an almost 27 year old, I feel I should be able to do tasks like these. As a POTSie, I should know better. As a result, I was awake most of the night with head pressure, vertigo, tachycardia, and some intense burning in my stomach. These days it seems if my POTS acts up, so does my stomach. On a positive note, my blood pressure was nearly perfect! Hooray for that!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
Enter emotions... I'm excited and terrified for this trip to Mayo. I'm excited at the thought of getting answers and hopefully help. I'm terrified of what the answers might be or worse that I still won't have answers. I'm trying to prepare myself for all of the possibilities. I know there isn't going to be a magic pill that makes me feel like a new person over night. I'm terrified of what diagnoses I might get. I know that's silly, but for some reason putting a label on the issue makes it that much more real. I'm even more terrified that I'll hear those dreaded words, "Everything looks fine." I doubt that will happen, but I've heard those words too many times. I think it's a weird experience for doctors when they give a patient what they view as good news and that patient bursts into tears. How can every test look fine when I feel so close to death?
OK, time to push those nasty thoughts back into the dark hole where they belong. I'm finally getting the help I so desperately need! Plus a little trip with my husband! And, it's my birthday week! Another year older, another year bolder! What a year it was! This time last year, I was announcing to the world that I was having another baby! Life does not get any better than that moment when you first hold your child! It sometimes amazes me when I think of how quickly life can change. I went from that amazing moment when my daughter was born in September, to honestly feeling like my body was shutting down in December. I spent Christmas Day praying and wondering if I would have to get a feeding tube. I hadn't been able to eat any solid food for weeks. I've come so far since that day. I have major setbacks (like this week), but it's still nowhere near where I was Christmas Day. I'm extremely hopeful that with some help, my body will get back to "my normal" in no time! Maybe I'll even feel better than I've felt in years. A girl can dream right?! This next year is going to be a good one. I have so many things to look forward to and I can't wait to see what 27 has in store for me! Hopefully more ups than downs!
"For whosoever shall call upon the name of the Lord shall be saved." Romans 10:13
Amy
Tuesday, March 12, 2013
My Cup Overfloweth...
I've said this before, but I feel the need to repeat it now. One of the greatest things we can do in life, is give of ourselves to help others. Whether chronically ill or perfectly healthy, there is nothing better for the soul than helping to better the life of someone else. I do this by volunteering for a Foundation that helps sick children. On Saturday, we held our local annual fundraiser and it was amazing! The generosity displayed by so many absolutely takes my breath away and seeing the smiles on the faces of the children is so heart-warming. Needless to say, I completely over-did it and boy did I pay...but it was completely worth it and I'd do it again in a heartbeat (no pun intended)!
By the time I left the fundraiser, I literally could barely walk. Every joint in my body was in excruciating pain. This is all something new to me with this flare. I've always dealt with knee and hip pain (on and off) throughout my life. Doctors wrote it off as due to the fact that I grew so fast, but here I am well out of my growing phase and still dealing with the pain. However, with this last flare, every joint in my body is in pain. A kind of pain that is breath-taking and makes it nearly impossible to move. When I got home from the fundraiser, my hubby actually thought I had fallen and injured myself because I could barely move and had tears in my eyes.
The next day, I was getting ready for church and had an episode. Not surprising considering the hectic week before. Anyways, I had a moment of pure genius and decided to take my blood pressure during the episode (flushing face, cold sweats, racing heart, stomach ache, followed by a delightful bowel movement). I was horrified when I saw the reading: 175/124!! What!?!?! My blood pressure is always low (around 105/60)! So, I took it again and got the same reading! Within minutes of the episode ending, my blood pressure returned to normal. How crazy! I can't believe I had never thought to take my blood pressure before. I can be a bit of a worrier so I tend to avoid my numbers. When I was first diagnosed with POTS, I became a bit obsessive about my pulse and blood pressure and would FREAK if my numbers were crazy. Now, I try to leave the BP cuff in the cupboard and focus more on how I'm feeling. One of the crazy things about this chronic illness is that my vitals can look completely normal on days that I feel terrible, and my vitals can be complete crap on days that I feel great. Such a mystery! But, I feel like I'm understanding it more each day!
"Do not withhold good from those to whom it is due, when it is in your power to do it." Proverbs 3:27
Amy
P.S.
I got my new medical bracelet and I love it! I'll do a post about it later! :-)
By the time I left the fundraiser, I literally could barely walk. Every joint in my body was in excruciating pain. This is all something new to me with this flare. I've always dealt with knee and hip pain (on and off) throughout my life. Doctors wrote it off as due to the fact that I grew so fast, but here I am well out of my growing phase and still dealing with the pain. However, with this last flare, every joint in my body is in pain. A kind of pain that is breath-taking and makes it nearly impossible to move. When I got home from the fundraiser, my hubby actually thought I had fallen and injured myself because I could barely move and had tears in my eyes.
The next day, I was getting ready for church and had an episode. Not surprising considering the hectic week before. Anyways, I had a moment of pure genius and decided to take my blood pressure during the episode (flushing face, cold sweats, racing heart, stomach ache, followed by a delightful bowel movement). I was horrified when I saw the reading: 175/124!! What!?!?! My blood pressure is always low (around 105/60)! So, I took it again and got the same reading! Within minutes of the episode ending, my blood pressure returned to normal. How crazy! I can't believe I had never thought to take my blood pressure before. I can be a bit of a worrier so I tend to avoid my numbers. When I was first diagnosed with POTS, I became a bit obsessive about my pulse and blood pressure and would FREAK if my numbers were crazy. Now, I try to leave the BP cuff in the cupboard and focus more on how I'm feeling. One of the crazy things about this chronic illness is that my vitals can look completely normal on days that I feel terrible, and my vitals can be complete crap on days that I feel great. Such a mystery! But, I feel like I'm understanding it more each day!
"Do not withhold good from those to whom it is due, when it is in your power to do it." Proverbs 3:27
Amy
P.S.
I got my new medical bracelet and I love it! I'll do a post about it later! :-)
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