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Living with Chronic Illness(POTS/Dysautonomia & Restricted Lung Disease) & General Life Updates!

It's been a while huh? I just went through the worst couple of years of my life. Gosh, I really think I could write a novel but that's not really my thing. Haven't even done a great job of keeping up on this blog. So I'm not going to make some promise that I'll be posting more but what I can promise is that when inspiration sparks me I'll be here to let you all know. I can also say I finally officially bought my own domains so if you ever want to get right back to this blog just type in totallyjen.com or totallyjen.xyz. I actually found out the hard way Facebook doesn't allow for .xyz domains which is just silly but that's a rant for another day. So first let me tell you where you can find me at:

Facebook
Twitter
Instagram
YouTube - I don't use this one as often. I haven't really gotten much into video blogs but who knows maybe? I guess stay tuned. 

Okay, now that we've got that out of the way. If I had to guess why you've clicked on this blog it's because you're interested in chronic illnesses and stuff or maybe you just want to pass judgment on me. If it's the latter let me just save you some time. This is my story, not anyone else's. I can promise you that anyone in the chronic illness community can tell you countless stories of doctors, friends, family, and enemies who have gaslit them. Sound off in the comment section my friends, let's hear those stories! They don't need be gaslit any more than I do so just STOP. Now if you're part of the first category welcome to my blog, and I'm so glad you found me! So let's dive in...

I've had a lot of ups and downs with my health since I was a kid. I won't go into too much detail but I slept a lot as a teenager. I required lots of naps and fought chronic migraines. So as I grew into an adult these were all normal things to me. If you asked me if I was chronically ill I'd say no way. I've read a lot the last couple of years and one thing stuck out to me in my search for answers. Most people who have chronic illnesses have a high tolerance for pain and discomfort. We're told over and over oh that's just normal get better rest, have a routine, exercise, and all that good stuff.  So I just say that to set the scene for what age 32 had in store for me. 

If you've been following me you know I have 2 kids my last one was born in 2019. I had to go low carb and then I lost a lot of weight, and I felt really good better than I had my whole life. Looking back now to when things started going in the wrong direction I'd say it was when my husband, and I started arguing over how late he was staying at work. I had become a stay home mom, and I do some part-time self-employed work as well. Anyways, I felt like by 2 or 3 in the afternoon that I was just completely and utterly wiped out. Of course, this led to obviously us arguing but also I stopped eating healthier. We turned to fast food just to scrape by. My husband couldn't figure out why I was upset. He was working late and I was already exhausted by 2 or 3 so by the time 7 rolled around, and he would get home I was just done. So health wise the dominoes started to fall. For those of you wondering my marriage is stronger than ever now. I'd be lying if I said it's been easy, but we all have our ups and downs, and we did say in sickness and in health. 

So by the time 2020 rolled around I had gained back all my weight, the migraines were back full force and I was sleeping every chance I got. Again, no major red flags no big deal lived with it before just take my meds, and let's move on. That was until in March, I was driving in my car and was listening to music when I felt like my heart was skipping beats. I turned the music down as I usually do when I felt like that. Yup, again something I've dealt with before. Usually, I can turn the music down and things settle and doctors never cared so you know should shrug it off and move on... I kept driving, and it wouldn't stop I finally pulled over and called my husband and he had to take me to the ER. The chest pain had become unbearable, and I was certain I was having a heart attack. This would be the first of many. 

Each time they couldn't tell me what was wrong. I'm trying to find a doctor who will listen to me for once. I had severe chest pain, heart palpitations, high blood pressure, shortness of breath just to name some of my top complaints. The one that really got in the way the most was the shortness of breath. Saying you are short of breath in 2020 is probably the worst thing you can complain about. It immediately equals a nose swab and quarantine. Yes, I'm avoiding a particular word because I'm not messing up potential rankings over it. 

I don't really want to rehash the whole story on here, so I'm skipping a ton of stuff. I was finally diagnosed with Postural Orthostatic Tachycardia Syndrome(POTS) & Vasovagal Syncope(VVS) in November of 2020 after numerous tests and being gaslit by countless physicians and nurses. I finally had an answer. I also found out that I was low on iron, vitamin D, and zinc. It would be almost another year before I was diagnosed with restricted lung disease. We don't know what caused it for sure, but I do suspect that I got you know what in March 2020 as I did get really sick at the beginning of the pandemic, and they weren't doing testing unless you met the criteria. Plus if you do your research on those who are still fighting symptoms months later they are being diagnosed with POTS/Dysautonomia. I do truly believe I've had POTS since middle school as most of the symptoms are things I have complained about and my medical records certainly align with that assumption. However, I think you know what probably made me worse and caused the restricted lung disease.

POTS & VVS is a form of dysautonomia so a lot of times when I tell people what I have I say, "I have a form of dysautonomia" to avoid confusion. The short version of dysautonomia is that it's an issue with the autonomic nervous system. What does the autonomic nervous system control? Well, I'm glad you asked. It controls all the things you don't have to think about. Just imagine if the one thing that controlled your heart rate, blood pressure, digestion, respiration, and many more functions suddenly stops working like it's supposed to. My body is literally working against me every single day. 

I wake up every morning and of the 4 morning pills I take 2 of them are a matter of whether or not I can get out of bed. If I can't take them you might as well cancel the day. I take other meds throughout the day some are vital and some are just supplements that I've found that have helped me. I have to pace myself through the day and some days I can barely leave my bed. Luckily, those days have become less and less as I've put the puzzle pieces together. It's not easy and I know you disbelievers think we can just exercise or will it away but it's not that simple. When your blood pressure is 170/120 are you going to work out or leave your bed? I think not... On those days I curl up and try to sleep it off and hope for a better day tomorrow. My cardiologist and PCP care but other doctors don't and while they do care POTS isn't that simple. There is no cure and there are no FDA-approved treatments. So it leaves doctors with just trying meds and seeing if they can balance everything. 

I've kind of narrowed my flares down to certain times of the month. For me it seems to be worse during my period and when I ovulate. So when I plan outings I plan around those days. I'm thinking about a trip to Washington this summer, and I already have my week picked out if we decide to go. If I go outside those days I'm really rolling the dice. When I have really good days I do as much as I can and try to live life to the fullest. Gosh, what I wouldn't do to go back to how I previously felt but this is my new normal. All I can do is smile and make the most of the life I got. I'll leave some infographics and links here at the bottom. I may talk more in detail later or maybe do that video blog 😉. 

Top 5 things I learned during the process:

1. Doctors don't listen to females they tend to gaslight them more. How do I know? I started taking my husband to appointments with me. He couldn't believe how I was being treated. He saw it first hand but the moment he pushed back the doctors realized he wasn't one of those guys that was going to go with the my wife is just irrational and anxious. 

2. Doctors overdiagnose anxiety. They really need to look at the whole picture and do testing before they just start shoving pills down your throat. Especially when you have a history of taking meds that NEVER works. 

3. Check your medical records. I found numerous errors on my records including I had a hysterectomy that I never had... But also if they had just looked at my vitals through the years it was pretty clear I had something going on with my heart rate. 

4. Orthastatic vital should be a part of your yearly checkup. If they come out weird and you are having strange symptoms they should investigate further. 

5. Most importantly if you know something is wrong please don't give up! Make them listen and if they won't find someone who will. Finding a doctor should be handled more like finding an employee. You are hiring them as a doctor and if they don't pass the interview see ya later doc. 

I'll leave that extra info down below. Let me know if you have questions or you find yourself with some weird symptoms. There's a huge community of online people who want to help and get you in the right direction. I don't think I would have made it out to the other end without my support groups. So while I will never give medical advice I'm sure I can get you the resources you need or point you in the right direction.

What can you expect from me next? Well, I'm more of a when the inspiration strikes kind of person. I have been making more of an effort to post on FB, Insta, and Twitter. Usually, it's quotes of things that I find inspiring. I'm a really nice person, and I find beauty in the world. I just want to spread that kindness throughout the world. I also started an Insta and TikTok for my animals. You can find them at @emmathesheltieandfriends. I do tend to post more about Emma. She's my pup I got to help me through the rough times. I'm also going to get her into agility and stuff, so I'll be posting more of that kind of content in the future so be sure to give them a follow! 

In the meantime, I hope that you have a wonderful and beautiful life. Remember to always treat people the way you want to be treated even if they don't always reciprocate. Also, don't forget to love yourself because self-love and self-care are so important! 

~Totally Jen

What is Dysautonomia?







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