LindsayNote: I am back from the honeymoon now, but actually wrote this post after the wedding, before the honeymoon. In the rush to get off to Hawaii, I forgot to post it. In the interest of not overwhelming you with a really long post, I decided to post this one now, in its original state, and follow it with a post about the honeymoon. – Linds
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Well, I did it. I got married!
If you have been following this blog, you know I was quite concerned about how I was going to make it through a wedding. I would love to tell you that I woke up feeling fantastic that morning, but that would be a lie. The truth is, I felt awful that morning. Very bad headache, dizziness and I constantly felt like I needed to vomit. But, as the day went on, all of that was replaced with tiredness, which is much better (and certainly expected on a busy day!). The day was lovely – we had the perfect weather. And, I didn’t even faint, so I’m counting it as a win!
We opted to sit for part of the ceremony, instead of having to worry about if, and when, I should sit if I started to feel dizzy, and how to do it gracefully. We sat while my sister read a poem, which I think worked out really well because the focus was on her and off of us for that short time. Then we stood for the vows. The ceremony only lasted less than 10 minutes – so it was the perfect wedding for someone with POTS (and with lots of kids in attendance).
Prior to the wedding, I had an appointment with a mast cell activation (MCAD) specialist here (Dr. White, who authored this article on MCAD and POTS). He ordered the 24 hour urine test, and I didn’t want to do it the week of the wedding (because….how romantic), so I saved it for after. I didn’t want to give the BF any last incentives to run before the wedding, and I thought carrying around a big jug of urine for 24 hours might do the trick.
If you’re not familiar, the 24 hour urine test is exactly as it sounds – you collect all urine for a 24 hour period in a large jug. After the 24 hours are up, you return it to the lab for testing. The urine had to be kept cold so for 24 hours I either had to carry a cooler of urine with me, or not stray far from the refrigerator. I opted for the latter, as I haven’t yet figured out a tactful way to ask someone if I can store my gallon of pee in their fridge.
Sometimes being sick is just so….gross.
It should take a few weeks to get the results, which is why I wanted to do it now, because the BF (I know – I need to stop calling him that now) and I leave for Hawaii for our honeymoon tomorrow, and I’d like the lab to be processing the results while I’m gone. I would be excited about the trip, but in the past two weeks since the wedding, I really haven’t been feeling well. I’m so exhausted. I hope I’m not allergic to marriage.
It’s clear that I overdid it the weekend of the wedding, and it’s taking a while to recover. My blood pressure and heart rate are all over the place, and I’m back to not being able to stand for much longer than it takes to walk to the bathroom. I just wish I had more energy.
I’m glad we got married, but still wish we would have skipped the whole “wedding” thing and just went down to the county office. It makes me happy that our families had a great time, but I don’t think they get just how hard that was for me.
I went to the hospital for an IV yesterday, and I’m hoping that will help. It often takes a day or two to kick in, so hopefully that means I will be feeling awesome right as the plane lands. Sure, there are worse things than napping on a beach in Hawaii, but there are better things, too.
“love is a fragile word
in the air on the length we layno hands are half as gentle
or firm as they like to be
thank God you see me the way you do
strange as you are to me”
– Iron & Wine
Aloha.
– Linds
Congratulations Linds, to you and your new hubby! In the years to come, and when you have your photos of your special day, I think you will be glad that you have that nice memory, as hard as it would have been. So happy for you that you made it through without passing out. Also wise that you left it for a few weeks before you honeymoon to recover. I hope the IV served you well (unlike the florinef) and you were able to enjoy your honeymoon to Hawaii!
you’re probably right – if nothing else, we did get some photos of family that we don’t get to see often, so those will be nice to have in the future.
Congrats! You must be wrapped. I’m interested in the mast cell test, please let us know how that goes for you. What do you have in the IV?
the IV is just saline. it helps increase my blood volume.
Congrats on the marriage!!! I hope you were able to enjoy your honeymoon. 😉
thanks!
Happy you are glad to be married. I’m sorry you wish you had skipped the whole marriage thing….well the ceremony thing. I hope the honeymoon is more relaxing.
I’ll tell you, I wasn’t very sick when we got married. I even had like NO symptoms the weeks before, and I was exhausted!!! The night of my wedding…supposed to be so very romantic right? I got dressed for bed, for that lovely tryst…..and after a couple of kisses I promptly fell asleep. I groggely told my Darling Husband (you can now call your BF…DH haha) that he could just have fun is he wanted, I couldn’t stay awake. hahaha
So darling, don’t feel bad about being exhausted. I was too. And I had a very small wedding and very short reception without alcohol. (only a champagne toast)
May your life together be as happy as my life with my wonderful husband….and that is more magnificent than I could ever have imagined.
Can’t wait until the next installment!!
haha! thanks for sharing your wedding night story – it’s nice to know i wasn’t the only exhausted bride 🙂
Congrats on your marriage! I’m glad you figured out a way to manage your POTS well on your big day, and that you could still celebrate 🙂
I commented on this post the day you wrote it Linds but for some reason it’s disappeared into the ether!
Congratulations on getting through your big day without puking or passing out – that’s no mean feat! You looked absolutely *beautiful* 🙂
Hope the honeymoon was/is relaxing and you’re able to recharge your batteries. Planning a wedding is hard work for healthy people, you coped brilliantly with it all.
Be interesting to see what your mast cell tests show!
Jak x
Congratulations! : )
Congratulations on your nuptials and on not passing out at your wedding! You’ve been working so hard to get your body to this point, and you got through it!!! You are truly amazing, and I know your new husband feels the same. Whether your family and friends understand how much preparation and rest that event took doesn’t matter- you fooled them! You looked absolutely stunning, by the way. I hope when you look back, you remember how strong you were on that day despite your body fighting you for the entire year getting to the altar.
My sister’s wedding is in 8 months and I’m still bedbound unable to tolerate most light and sound, so Idk what will happen, but I am working on it every day I am able. It’s an impossible goal, but I just HAVE to be there somehow. If you have any advice for me, I’m all ears!
Congratulations again to you and to your hubbs. Be happy together 🙂
thank you!
i wish i had some great advice, but in the end, what helped me the most was realizing that it didn’t matter if i got sick or passed out. at the end of the day i would still be married, and my family would still love me. once i stopped putting so much pressure on myself, i calmed down quite a bit.
i’m interested in hearing more about your light/sound sensitivity. i am sensitive to lights/sounds/smells, although probably not to the same extent. are there certain lights and sounds you are sensitive to, or is it all? have you found anything that makes a difference?
That is good advice. I’m really determined to see my sister get married though at this point it seems impossible- I will be there if I’m rolled in a hospital bed! lol
I’m keeping you close in my mind as my inspiration 🙂
The light/sound sensitivity is from a brain condition that has caused a 4 yr debilitating migraine and cluster headaches.
After the POTS and brain disorder began, the only thing that has helped my head at all is Diamox. It reduces fluid around the brain and stops the body from hyperventilating. Otherwise, it’s just managing it.
Have you heard of Dynamic Neural Retraining? That might be something to look into for your sound/light sensitivity & it is supposed to help ppl with POTS also…
Aww!!! I love your dress. Congratulations on not throwing up on it!
I agree on the 24 hour urine for mast cells being ridiculous! Having to keep it cold is a pain. At least with the sodium 24 hour collection, it can be room temp.