LindsayIt has been a rough week.
There were some positives, for sure. I got to dogsit this little cutie:
And, the BF and I booked our honeymoon. More on that later.
But unfortunately, there were some negatives, too. Apparently summer is here already.
I had a wedding dress fitting yesterday. As you might expect, the fitting involved putting on my dress and standing in front of a panel of mirrors while a lady with a thick accent who is kind of sweet, but also kind of reminds you of your stern grandmother, pulls and tugs the dress in all directions while coming dangerously close to copping a feel. I knew I would have to stand for a while but told myself it was good practice for the big day. After all, if I can’t make it through a quick dress fitting, how will I make it through a wedding?
From the moment I stood up on the pedestal in front of the mirrors, I felt the typical dizziness and lightheadedness associated with postural orthostatic tachycardia syndrome (POTS) take hold. I fought it off for as long as I could, determined to make it through. Unfortunately, fighting POTS is a losing battle, and I definitely lost this one. I began to feel sick to my stomach and had an intense warm adrenaline rush – both tell tale signs that I’m about to faint. I told the tailor that I needed to sit down NOW, and fortunately I made it to the chair before I passed out. My face tingled badly and my vision went dark, both from lack of blood to my head. I tried to focus on anything but the feeling that I was about to vomit all over my wedding dress.
We had plans to go out to dinner afterwards – I wanted it to be a special and memorable day for my sister and I. One that just the two of us could share and look back on fondly when we’re older. Instead it ended up being an awful experience, and I felt sick for the rest of the day.
And now, for a possible TMI warning: I’m about to discuss butts.
About a week ago, I had blood in my stool (stool is just a fancy word for poop). It seems that I am bleeding somewhere along my digestive tract, but we don’t know where. It’s alarming anytime you see blood when you aren’t expecting it, but especially after you use the bathroom. I was visibly anxious until I was able to get in to see the doctor. Intestinal bleeding is not something that would be caused by POTS, so it seems I have something else going on.
The cute doctor (of course) performed a physical exam, then examined my “posterior”. For this kind of bleeding, they have to examine the bleeding site, and essentially give you the equivalent of a pelvic exam for the butt. It’s uncomfortable and humiliating. I’m sure you can use your imagination, so that’s all I will say about that.
The bleeding is farther up in my intestines, so the exam wasn’t helpful. The doctor also ordered some blood tests, for which I’m still awaiting results, as well as a stool test. The stool test is absolutely vile and disgusting and makes you do things humans should never do.
And, that’s all I will say about that.
The next step is just to await results, and see where we go from there. Right now I’m not worried that it’s something very bad – I don’t have a history of bowel cancer in my family. I’m just very frustrated that I may have to spend a lot of time, energy, and expense to have tests done to figure out what is wrong. I’m already trying to balance the time, energy, and expense of a wedding, and the time, energy and expense of POTS. I don’t need this right now.
I debated whether to even include this on the blog, as no one wants to discuss butts, unless it’s a discussion about cute butts. However, I receive a lot of emails from readers who have come across a post they can relate to or find helpful. My purpose in starting this blog was to help myself (and others) feel less alone. So, I guess that involves writing about the less glamorous side of illness.
Like butts.
“Scar tissue is stronger than regular tissue. Realize the strength, move on.”
– Henry Rollins
Smell ya later.
– Linds
Hoping that your poop does OK in the tests!
But your post has made me wonder – should I be more glamorous with my CFS?? Of course fainting away is seriously hot stuff, especially if you can manage to gracefully wilt into a conveniently placed romantic interest. He can then lay you on the couch and delicately chafe your wrists as you flutter back into consciousness (without crying, or wanting to vom).
I should really write that romantic novel…
But apart from that I’m failing to see where else I can get some glamour here!!
i would totally read that romantic novel 🙂
I have everything crossed your tests come back with answers and nothing nasty. As hard as it is writing about really personal stuff, such as poop(!) it is really courageous to do so and really helpful for others so thank you for sharing 😊 also wondered about the standing up at the wedding and your PoTS, I’m going to sit down through my ceremony, can you do the same?
i was hoping i wouldn’t have to sit down, but after this weekend, we decided that i will have a chair up front for when i need to. our ceremony will be very short – the BF and i decided not to write our own vows in the interest of keeping it short enough that i can make it through – so it should only be 5-10 minutes. i’ll start off standing, but when i need to sit, there will be a chair waiting for me.
will both you and your fiance be sitting? or just you?
We will be sitting! On tall chairs. We may stand for the vows/rings exchange bit though.
We are both going to sit and just stand for the few minutes where we actually say our vows. Same as you we’ve chosen to use the standard wording to keep it short and sweet. I read somewhere recently that as long as you and your husband are married at the end of your wedding day then nothing else matters. It’s hard to remember that when so many things seem compromised by ill health but it is right I guess, I keep trying to remember that at any rate.
i think that sounds nice – perhaps the BF and i can just stand during the vows and the “i do” part.
i know you’re right that all that matters is that we’re married at the end of the day – it’s just so hard to keep telling myself that. after all, if that was really all that mattered, we probably would have just gone to the city hall. but, i’m lucky to have such a supportive BF who would marry me lying down in the dirt, if that’s what it comes to 🙂
That made me smile so much, I can see you in your gorgeous dress lying down in the dirt! Sometimes I wish we were doing city hall with no frills, but then I think about all our friends and family and know we’re doing the right thing by having a bigger day. It’s hard to fight the perfection / want it all tendencies tho isn’t it?
After dealing with a constant feeling I’m going to faint since last January, I had my tilt table test last month. I was told I have “evidence” of PoTS. Feels like more than just “evidence”. Did you ever go through a period in the beginning where it was difficult to go anywhere by yourself because you always felt like you were going to faint? Or I’m afraid to even drive because I was some symptoms when I’m sitting as well. So I have all this anxiety that I can’t get over, so I may need to go on meds, which is unfortunate. Do you have problems with anxiety? If you have any of these issues, how do you get past it? I also have chronic fatigue, fibromyalgia and celiac disease – ugh. Hope your tests give you answers!
I got married last August and was terrified of the ceremony. I had a signal for my bridesmaids if I needed a chair, and I needed it. My hubby and I both sat while we exchanged rings. Good luck! Love your blog!
Hi Heather! did they tell you what the “evidence” of POTS was? do you know what your pulse or blood pressure did during your tilt table? are you on any medications? (if you don’t want to answer here publicly, you are always welcome to email me at lindsay@dysautonomiac.com)
in the beginning i was constantly afraid to go anywhere by myself! if i was home alone, i was even afraid to walk the 15 feet to the bathroom. i have anxiety now caused by POTS, but never was anxious before i had symptoms. the anxiety is very frustrating because my body behaves like it’s anxious even though my mind knows there is no reason to be!
Hey Linds, don’t be embarrassed! I also happen to be an endoscopy nurse, I look at butts and guts all day…every day. Theres definitely nothing glamorous about it, but we serve an important purpose! We dont sit there why you’re sleeping and assess people’s ass, we just go through and hope there’s nothing worrisome to take out. Glad to see you’re getting this checked out, as many people are either too embarrassed or afraid to! By the way on top of my being diagnosed last year, my daughter just got diagnosed last month. Unfortunately living in Phoenix is not POTS friendly, as soon as the temp hit 80 I started having problems again. Time to move!!
Hi Antonia, I feel for you, living in Phoenix! I grew up there, and when I return to visit family (now that I have POTS) the heat is so difficult! Come to southern California 🙂
I had this same issue. It turned out to be an ulcer. I’m not sure what shade your blood was but mine was dark so I guess that usually means further up the intestinal system.
Thanks for sharing, Jackie – it’s nice to know I’m not alone! My blood was bright red. How did they find out it was an ulcer? How did they treat it?
Bright red means it’s probably in the intestines. If it’s from the stomach, it’s usually older by the time you see it so is darker is what they told me. They did an endoscopy and colonoscopy.
I spoke too fast when I said ulcer like it was a fact. Is it ever a fact for us?
They did find tiny (for me, painless) internal hemorrhoids and lots of gastric inflammation. The hemorrhoids have bled some recently, but that’s always bright red whereas what I sought attention for 2 years ago was dark dark red. What they didn’t find is an ulcer or healing ulcer.
I’d been put on acid reducers by the time of the scope, and had been blood free for 4 days. She thought perhaps it had been an ulcer causing the blood in stool and that it was healed by the time of the scope. She said she couldn’t blame the hemorrhoids because of how dark the blood had been. If they had found an open and bleeding ulcer during the endo, they could have lanced it. So yeah… At the end of the day, she wasn’t 100% positive if there was an ulcer that had healed or the source of the blood was somewhere in the area of the intestines they cannot get a scope. I had lots of inflammation (lymphocyte aggregates which I now know is a Sjogren’s thing and plasma cells).
We identified one likely issue of the irritation and possible ulcer was I’d been drinking a pint of tomato juice first thing every morning on an empty stomach and also frequently took NSAIDs for my fevers, so I changed to Tylenol most of the time and broth instead of tomato juice first thing. Also, I now know Sjogren’s attacks the mucus lining of my GI system which can’t help matters!
I haven’t had the dark red stool issue since, so it seems it’s likely it was an ulcer…. but like always, we can’t be certain. 😊
good luck my dear.
you are brave to talk about poop. and I think it’s a good thing. You never know who you might be helping. If nothing else you might be showing someone exactly what they need to do when you find blood in your stool. and don’t hesitate.
I’ve had blood in mine, turned out to be internal hemorrhoids. But think the cute doctor would have found that. There’s a lot of things it could be that could be very minor, so as you said, no worries. Can’t change it anyway, so why worry about it. It’s just gonna happen, then you deal with it.
Shame it has to happen….if nothing else it is an inconvenience.
I’m sorry your special day with your sister didn’t turn out as you planned….but you can think back and laugh at how you got that crotchety old lady on her toes that day. Bet she hasn’t had to worry about a bride throwing up on her before. haha A new bond between you and your sister…she was your kick stand while you had your dress fitting. 😉 sorry….I try to find humor in most things. found I kind of have to, or I wouldn’t get out of bed.
good luck!!!
ha, you’re so right! the tailor definitely was thrown off her game – she didn’t seem to know what to do or how to respond. i guess sometimes it’s fun freaking people out 🙂
another positive, i suppose, is that my sister got to see that side of my illness, too. since we live in different cities (but still less than 100 miles apart), she doesn’t usually see me on bad days. no matter how supportive our families are, i think it’s still eye opening for them to see us in the midst of a flare.
You are very right Lindsay. first you are lucky your family is supportive….but often if they live away they don’t see us at our worst. I know I put on a face for my father and sister when they come (for their 4 hour visits once or twice a year).
They hear about my illnesses but they don’t really see what it’s like during a flare up. They’ve never seen a vertigo spell, or anything like that. Sometimes I wonder if they believe it is as bad as I’ve told them. (my family is not as supportive, I’ve heard they think….well they aren’t supportive)
But for the supportive ones, I do think it’s good for them to see a flare, especially when they can help and keep things under control. I’m sure your sister feels even closer to you now and will know more about how to help if something happens at the wedding. She will be able to stay calm and help you. That must take a load off your mind too.
🙂