Health Update / Tips & Tricks for Illness Management

I Went to a Ceremony/Wedding Reception and Didn’t Pass Out!

So I thought since you have listened to me complain vent about how ill I’ve been since my surgery, I’d share with you a day where my body did what I wanted it to. I felt quite ill, but I looked nice and was present for all the moments. I also got a TON of quality time with Emma which we both have been missing. Thursday night, I tried to sit through a movie with her and Jake, and when I checked how long it had been, it had only been an hour before I had to leave the room. It was nice to have my little shadow back (she is super shy). I managed by using a few tricks I keep in my toolbox. They’re only good for one day then I’m wiped for quite awhile, but at least they give me that day!

  • I loaded up on medicine. This means being extremely strict with my medication times, taking extra beta blocker and blood pressure/hypotension control medicine to accommodate my standing, and taking my full dose of Adderall to help with my energy
  • I know people won’t like this, but I didn’t eat except a tiny bit of fruit and chips all day because I didn’t want:
    1) the blood that digestion requires to be taken away from circulation since that makes me dizzy
    2) nausea/gastroparesis (which I did get when I finally did eat a bit of pork at the reception — 8 hours later the food was STILL in my stomach so I took some Reglan)
    If you had to pick between being a bit hungry (which I wasn’t really because standing makes my POTS act up which in turn makes my stomach upset) or skipping your sister’s ceremony and reception, I bet you’d pick your sister too!
  • I propped up my feet between standing. — I have some family members who watch my feet and when they start to turn red, they alert me! I think it is funny and sweet.
  • I did my breathing that I was taught, especially while my feet were propped up. Several times throughout the day, this relieved my lightheadedness and level of nausea!
  • Kind of like Nike, I kept telling myself “Just do it.” My day started out at the salon. Part way through I was so dizzy and I thought there was a good possibility I’d throw up. Immediately I began wondering if I would be able to push myself through the day like I had been sure I could. I told myself “Too bad, you’ll be so sad if you miss this — ignore it and just do it” and kept on going. I was so hopeful the makeup chair would be a lay back chair, but it wasn’t. There were so many times throughout the day where I thought I couldn’t keep pushing myself. I made it though and I am so happy I did. It was a beautiful day.
  • I tried not to be hard on myself about not be as good at conversation as I would be if I weren’t feeling ill. It is hard to remember things or I will think of what I would have wanted to say too late. Sometimes I get really annoyed with myself over this and think I sound stupid/unintelligent, but I decided to just let it go! Being hard on myself doesn’t make it any easier to enjoy myself.
  • I would think this is obvious, but I didn’t drink any alcohol, and I stayed very hydrated.

Here is my day in pictures:

photography by Emma

In most pictures, my left eye (on your right in photo) looks normal. There are some pictures, especially those taken from an angle, where I can tell, but it is not anything near as bad as I had been imagining it may be.

Example: I'm not blinking, my eye is just doing that.

Example: I’m not blinking, my eye is just doing that.

After Emma and I got our hair done, we met Jake at my Mom's house. Here is us with our gorgeous hairdos.

After Emma and I got our hair done, we met Jake at my Mom’s house. Here is us with our gorgeous hairdos. This is my preferred compression stocking dress. I wore them right up until I put on the bridesmaid dress.

I was surprised to get a present on my sister's special day. It is a really sweet, sentimental sister's frame.

I was surprised to get a present on my sister’s special day. It is a really sweet, sentimental sister’s frame.

I helped lace up my sister's wedding dress. I made sure she couldn't breathe by the time I was done! (This is an Emma cam angle by the way)

I helped lace up my sister’s wedding dress. I made sure she couldn’t breathe by the time I was done! (This is an Emma-cam angle by the way)

I sat with my legs criss-crossed (I really miss calling it Indian Style and it not being politically incorrect) and watched my sister renew her vows to her husband. Isn't she beautiful?

I sat with my legs criss-crossed (I really miss calling it Indian Style and it not being politically incorrect) and watched my sister renew her vows to her husband. Isn’t she beautiful?

I lost a bit of weight from when I bought the dress (I have about an 10 pound range I go up and down depending on my stomach) so I pulled up my dress so many times! I wish I'd remembered my tape I have for such problems. My aunt joked I should have bought some suspenders for my dress. :)

I lost a bit of weight from when I bought the dress (I have about an 10 pound range I go up and down depending on my stomach) so I pulled up my dress so many times! This was fortunate because when I bought it, I thought it needed taken out a bit in the bust area. That is where I usually gain weight weight first. I wish I’d remembered my tape I have for such problems. My aunt joked I should have bought some suspenders for my dress. :)

I posed for pictures.

I posed for pictures.

Between pictures, I sat with my feet propped off to the side so I didn't even have far to walk when I was needed again.

Between pictures, I sat with my feet propped off to the side so I didn’t even have far to walk when I was needed again.

My Mom suggested we pull up a chair for me, but I insisted I stand. I wanted to look "normal" in the pictures and I figured, if I'm making myself sick and wanting to fully enjoy the day as much as my body will allow, we might as well have pretty pictures. Am I right? I am right.

My Mom suggested we pull up a chair for me for pictures. I insisted I stand. I wanted to look “normal” in the pictures and I figured, if I’m making myself sick and wanting to fully enjoy the day as much as my body will allow, we might as well have pretty pictures. Am I right? I am right.

Awhile ago I realized when she is pretending to be me how little kids do with the adults in their lives, it often involves sitting with her feet propped up. At first this broke my heart, now I just think "aww she is playing at being me"

Awhile ago I realized when she is pretending to be me how little kids do with the adults in their lives, it often involves sitting with her feet propped up. At first this broke my heart, now I just think “aww she is playing at being me”

Maybe you won't think these pictures are funny, but I do. After standing a lot, I shake A TON. Yesterday, even my toes were shaking. Emma was quite alarmed when she looked down and saw my toes shaking. I told her I knew they were and not to worry about it -- that having my feet up awhile would help.

Maybe you won’t think these pictures are funny, but I do. After standing a lot, I shake A TON. Yesterday, even my toes were shaking. Emma was quite alarmed when she looked down to her side and saw my toes shaking. Her eyes bulged. I told her I knew they were shaking and not to worry about it/it doesn’t hurt me — that having my feet up awhile would help.

"Are you SURE you see what they're doing? What if you put them on the ground?" (They still shook and I promised her it was okay -- my toes were just confused. She called over to Jake to see this modern marvel of a body I have. :) )

She didn’t quite think I knew what was going on: “Are you SURE you see what they’re doing? What if you put them on the ground?” (They still shook and I promised her it was okay — my toes were just confused since I don’t usually stand much.) She called over to Jake to see this modern marvel of a body I have. :)

So here is me at the reception standing and holding miss Emma. Yep! I'm pretty much a star. I even danced a few times at the reception, usually on through part of a song.

So here is me at the reception standing and holding miss Emma. Yep! I’m pretty much a star. I even danced a few times at the reception, usually only through part of a song, but still.

I also did the photo booth which required standing. It was a lot of fun!

I also did the photo booth a few times which required standing. It was a lot of fun!

The night had to end for me somehow right? Something was going to be "it" for me. So, when my cousin's adorable little daughter who is a dancing queen came up to me and said "dance?" I decided dancing with her was the perfect activity to put me over the top and force me to call it quits. I didn't recall (despite watching her dance all night) how her favorite dance move is holding hands and spinning in circles as quickly as possible! So when we had spun around a few times, I was dizzy on top of my normal "I've been standing a bunch" dizzy. As I thought, it was worth it though. She definitely enjoys herself when she is dancing! We switched over to her teaching me some steps then I had to call it quits because I decided it would be a bit traumatic for her if I passed out or threw up on the dance floor.

The night had to end for me somehow right? Something was going to be “it” for me. So, when my cousin’s adorable little daughter who is a dancing queen came up to me and said “dance?” I decided dancing with her was the perfect activity to put me over the top and force me to call it quits. I didn’t recall (despite watching her dance all night) how her favorite dance move is holding hands and spinning in circles as quickly as possible! After spinning around for what felt like a long time, I was dizzy on top of my normal “I’ve been standing a bunch” dizzy. As I thought, it was worth it though. She definitely enjoys herself when she is dancing! We switched over to her teaching me some steps then I had to call it quits after dancing the last half of one song and the first half another. I wanted to finish one full song, but I decided it would be a bit traumatic for her if I passed out or threw up on the dance floor.

As we were leaving, my song came on. (Old Crow Medicine Show -- Wagon Wheel) You can see what I thought about Jake suggesting we should leave anyway. By this point, my eyes were killing me, pounding headache, I was dizzy, nauseous, joint in pain, pretty sure a fever, throat on fire... but who cares? After all I did yesterday, 3 minutes was not going to be the end of me. I didn't come that far to leave in the middle of my song!

As we were leaving, after I broke it off with my little dance partner, my song came on. (Old Crow Medicine Show — Wagon Wheel) You can see what I thought about Jake suggesting we should leave anyway. By this point, my eyes were killing me, pounding headache, I was dizzy, nauseous, joints in pain, pretty sure a fever, throat on fire… but who cares? After all I did yesterday, 3 minutes was not going to be the end of me. I didn’t come that far to leave in the middle of my song! (Actually, I suppose that is pretty much the lecture he got now that I think of it LOL)

Sorry for any typos. :) My eyes hurt so I don’t want to read through it!

Staci, I love you and your vow ceremony/reception was as fun as the first time around in Mexico. When you read this, know I came and stayed through all of my symptoms because I wanted to, not because I thought you’d mind at all if I said I felt sick and wanted to stay home/not being in pictures/skip part of the festivities/thought I’d feel better if you let me wear your wedding dress instead of you! Everyone else, know I did better than I would have in June of 2012. In June of 2012, it would have been impossible for me to go to this.

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12 thoughts on “I Went to a Ceremony/Wedding Reception and Didn’t Pass Out!

  1. Great description and photos of the reception! Toes shaking? Wow. That’s a new one! I liked your tips at the beginning. I relate to the not eating one. Unless there are certain things available to eat for me, it’s just better to not eat at all. It looked like you had a lot of fun! Everybody looked great!

  2. I just must tell you again, you’re so brave and wonderful. And you and your family are truly beautiful, inside and out. I love when you share pictures!

  3. So absolutely happy that you enjoyed yourself!! I know you totally had to tweak your routine and are probably paying for the aftermath, but you look amazing and happy in all of your pictures (I am amazed at how well your eyes are healing). <3 Also so extremely happy you have such an understanding family that works with you and your "qwerks" to help you through the day.

  4. I can relate to so much of this, Jackie, from the toe shaking to the daughter imitating the POTSie survival pose. I am so glad you got through the day and got so many great photos. I hope the “pay-back” phase is over with quickly and you are back to baseline soon:-)

  5. Jackie, this entire post, from the photos to the descriptions, made my day! I’m so happy for you, that you were able to attend this joyous family event. Your strength, bravery (and stubborness!) are truly inspirational. Thank you for making me smile! :-)

    • The stubbornness bit tacked on made me smile! Thank goodness I have that trait coming down from both grandmas or I don’t know where is be.

  6. Hooray!! Pushing yourself to the limits can be great for morale – even if the consequences are heavy over the next few days, it’s worth it for special occasions and special people! Last month I was at my brother’s wedding. There was a side room with a couch that I could escape to and lie down for a bit which was awesome. Because of this I could dance for a tiny bit, lie down, then dance a bit more, then talk, then lie down etc.
    I glad you could be there for your sister – and you looked gorgeous!!

  7. It really was a great day! You looked beautiful, and I could tell you were having fun! (I love your favorite song, by the way). :)

  8. i am 21 and 5 years ago my friend chrissy and i went to her nieces wedding.at the reception and dance we were drinking champange and a couple of older guys were also giving us mixed drinks.chrissy and i got really hammered and both of us passed out.We both woke up a few hours later in a dark room with a night light on and it was the parish nursery! we were each laying in a baby crib and our clothes were off and all we had on was a disposable diaper and baby plastic pants! we both got out of the cribs and were hung over.we managed to turn on the light in the nursery and there was a note with our clothes saying we were put into the diaper so we wouldnt have an accident and to sleep off the booze.we took the diaper and babypants off,got dressed,and called our parents to come and get us,they were frantic,but relieved that we were safe!

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