Update for my support system

By Ray Li

2 min read

I have an amazing support system on here and a lot has happened so I thought I would do a quick update.

Last Tuesday, the scope of my salivary ducts went well. There was a bit of narrowing on each side so they were able to naturally stretch it a bit without having to use stints. (Stints would have been the surgery part of things) I had the biopsy done to test for Sjogren's Syndrome, which was done on the inside of my lip on the left side. As a result, I've been on a liquid diet since then. The general anesthesia they gave me has given me liquid BMs but thankfully they are decreasing in frequency. I'm hoping that in a couple more days I will be able to return to solid foods. They forgot to tell me the aftercare for the biopsy site so it ended up getting quite painful. Thankfully, two days ago I came across the information and the pain has already started to decrease. I'm lucky I didn't get an infection as it's in my mouth.

I miss solid foods so much!!!!

A loud pop

2 days after that, after spending 20mins on the throne, both my feet were massively asleep. I stood up and there was a horrible loud painful pop from my left foot. I cried out and sat back down on the toilet seat. I had almost rolled my ankle and something was definitely out of place. Unfortunately, I wasn't able to get in to see my physiotherapist until Monday. My husband was able to massage it really well on Friday night and I was able to get most of it back in place. Then yesterday, the physiotherapist got the rest of it back in. Oh the joys of sitting on a toilet for too long. ?

On the 26th I go up to the hospital to have my heart monitored for 7 days. Most likely will be done via Holter monitor but I don't know for sure. When I had one for 48hrs, I had welts where the sensors were so I am not looking forward to 7 days.

On the 30th I get the biopsy results. That day will also be 17 days until my 35th birthday.

Hoping for a normal return

I saw my GP 2wks ago about the infection going on under my breasts. I had thought it was the sweat causing a yeast infection. Then I had a pimple on the underside of my breast pop while out walking. Within 20mins I was getting the reaction that looked like a yeast infection. My GP thinks it's a bacterial infection so based on the new info so I'm on a round of antibiotics. YAY!? Just kidding about the yay. It's the kind where I need to be careful in the sun so I don't get a nasty sunburn.

Hubby and I attended our first Pride parade at our city's first-ever Pride parade on Saturday. Such an amazing turnout of a couple hundred. We marched up at the front cause it seemed like if there was going to be any trouble, it would happen there and my hubby could help. (He's a big strong guy and can have a very intimidating sounding voice if he wants)

Hoping for a return to my normal IBS stuff very soon.

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CommunityMember2138 Member
Looking forward to getting information
Ray Li Member
Update on my update 😛 Still have a tiny bit of suture left in my lip. Biting it is never fun but at least I'm able to eat solid foods for the most part. I say, for the most part because I have a nasty tooth infection that requires a root canal and crown. Super dreading the root canal cause of my Fibro. The biopsy came back negative, which was devastating and frustrating. I thought for sure I had Sjogren's because I have dry eyes, dry mouth, stones in the salivary glands, problems sweating, and a huge reduction in my vaginal fluids. Now it's back to the drawing board. On my birthday my Gma called, which was very shocking. She has been mad at me for cutting out my mom and 2 sisters from my life and has even said she wants me removed from the family. The last time I tried having a conversation with her, she got mad at me and stopped talking to me. She only called because my mom pestered her to and under the guise of some poem I wrote about high school ending when I was graduating. My gma thought it was perfect for the Queen of England's death and that I just needed to change one part and then have it published. I read the poem and think it's perfect for leaving abusive family/people, one word needs to be changed, and I want to publish it. Not as a "f*** you, Gma" but for the survivors of abuse. Turns out the infection under my breasts was caused by bacteria on my skin so after undergoing 14 days of antibiotics, my skin is clearing up. My sweat is also returning to normal. On the last day of my holter monitor test, after a shower, I noticed my heart having an issue. In my haste to quickly hook myself back up so I could record the event (it records for only 30seconds before you pressed the button and 30 seconds after) I picked up the machine upside down, without realizing it, and hit the send button instead of record. My entire log was deleted, I have to repeat the test this Friday. Not too long ago you used to be able to send the info over the phone but now you can't. They should disconnect the send button so that if accidentally pressed, the info isn't deleted. 
1. Ray Li Member
 <inline-mention username="Karina" user-id="2303467"/> Indeed, it's not your responsibility to have to explain yourself to them. My mom, two sisters and Gma think that I am stupid so they never listened to me about anything. I would tell them something I learned and they would ignore me. Then a couple of days later or a week later the topic would be featured on the news and they would pay attention to that. Never giving me credit or acknowledgment that I had already known about it before being featured on the news. Yes 7 days is a long time to be hooked up to a monitor but I am glad that it just has two sensors and is lightweight so it's not too bad. I have to tuck it away at night in a box cause there are flashing green lights that are super bright at night. Just a couple more days to go. I included a pic of a chart of healthy boundaries, I have it saved in my phone. It helps me remember what healthy boundaries are because of growing up in a co-dependent family with toxic abusive narcissists. It also helps others who don't know what healthy boundaries are. I apologize if you do know. <img src="/content/images/2022/09/27/0fda1e384efed2da79a437c259912d06_medium.jpg" alt="healthy boundaries chart" class="uploaded-image"/>
2. Karina Moderator & Contributor
 <inline-mention username="Ray Li" user-id="4188124"/> Oh I love that, thank you so much for sharing! I have always been terrible at setting boundaries but it's just been inevitable since having children... I'm familiar with the feeling of not being taken seriously - it's awful that it happened within your family, I can only imagine. Will you let us know how the monitor test went once the 7 days are over? Karina (team member)
Ray Li Member
Hello, my beautiful community! This November has been extremely exhausting. Before Halloween I had an emergency root canal. That was quite a painful experience but thankfully the Nitro helped my dental anxiety not be so bad. The first week of November, a different tooth suffered a break to it. Thankfully not as bad as the first tooth that the root canal was for. On Nov.10th I had the crown put on the root canal, I had a migraine that day to boot so that made things more painful. The freezing wasn't working that great and they never hooked me up to the Nitro. Thankfully, the appointment was in the afternoon so after 2hrs I just went to bed. I've been healing since then, still have some pain in my gums and cheekbone. Cardiologist appointment was finally today, the results of my 7 day event holter monitor test were ok. He said my heart is healthy so he has no idea what is causing my symptoms of heart palpitation and chest tightness. At one point he suggest its my RLS but when I reminded him that it's palpitations and chest pains I feel and that it doesn't feel like my RLS symptoms. He agreed it didn't sound like RLS. He asked how if its stress related, I told him how this is the happiest I have been, I have removed the stressors and abusers from my life. Even when I was at my most stressed, I never experienced symptoms like that. I asked him what his thoughts were on my trip to the E.R a couple of days before my 35th bday in September when my heart was racing out of control. He said he disagreed that it was caused by a tooth infection cause that doesn't cause vomiting and diarrhea, it was most likely something I ate. UGH, yea doubtful cause I wasn't feeling gross until 3am, and if it was something I ate, my IBS would have had it be a bother earlier. I also have never ended up in the E.R with a heart rate of 150-170 beats/min that lasted for 2hrs. So tomorrow I am calling my GP (primary doctor) office to book an appointment with her to discuss what the cardiologist said and to figure out where to go from here. This has been going on since Nov 2019. The cardiologist thought it was my heart but after all the tests, he no longer thinks that. Yet, something clearly is going on with my heart, I've had tachycardia issues for 7 or 8yrs now. 
1. Ray Li Member
 <inline-mention username="Karina" user-id="2303467"/> Hugs back. Yes, I will gladly post an update. I am glad my GP is a woman so I know she won't be all "you are just too emotional" like my former GP (male) was. 
2. Karina Moderator & Contributor
 <inline-mention username="Ray Li" user-id="4188124"/> Ugh, that must have been so frustrating. Good luck for your appointment today, I'm looking forward to your update! Karina (team member)
Ray Li Member
Update time again: Alright, this time you folks have to go over to the Endo site to see the update 😝 Brains and fatigue are too much right now to redo the update on here. (scroll to the bottom to see the most recent update) <a href='https://endometriosis.net/forums/updating-my-support-system#reply-149091' target='_blank' rel='noopener noreferrer ugc'>https://endometriosis.net/forums/updating-my-support-system#reply-149091</a> December was hell and I am still recovering.