I Blame POTs

As time goes on the more I notice weird symptoms. I am thinking some may be side effects from all the prescriptions I am taking. For example, I will get these patches of pin and needle pain in random spots on my body that will last awhile. The last one I had was on my right shoulder and it was awful. It is difficult to get things done when you are in constant pain. That pain in my shoulder lasted for about a month. Then in a few more months, I will probably have another patch but it will probably be somewhere else.

I will also get some numbness and tingling all over sometimes. Which then leads to some weakness in my body and then that leads to pain. And all of this just seems like it would be something neurological. I saw a neuro doc over a year ago and he told me to try to work on "getting better" and see if the other symptoms would get better. I didn't completely understand that. But I things got worse and I made an appointment with him a few weeks ago. He wanted to do some more tests, I got an EMG and a few MRIs of my spine and brain. And nothing. 

I feel relief and confusion. 

What the hell is going on with me?

I blame POTs. That is ultimately my conclusion. POTs is still so misunderstood and we don't know everything there is to know about POTs. If it isn't that then it is probably the meds. Which I have to take because of POTs. So, I went through so much testing for no answers. 

Health Update: Some News & More Appointments

I have been extremely overwhelmed with the amount of appointments I have had in the last month. Anyhow, here are a few updates about what has been going on with me and my health.

POTs: back in Feb. 2018, I got a loop heart monitor inserted in my chest. If you read my last post about my health scare you know that I got an MRI on Nov. 12. I have still been experiencing the fluttering, arrhythmia-like feelings in my chest that scare the hell out of me. I messaged my cardiologist and asked if he had found anything from my cardiac MRI and he replied back, "The MRI of your heart looked perfect. That's great news. In other words--that's lit." I am so lucky to have such a great doc that actually cares about me. I will be seeing my cardiologist again on Dec. 3. I am sure he is going to want to do a stress test. I am not looking forward to that. I will keep y'all posted on how the appointments go.

ENT: because the dumb doctors misdiagnosed me with a sinus infection last fall, I was put on three courses of antibiotics which caused a yeast infection (not contagious) in my mouth I have had the infection for almost a year and am starting my third round of medication. The reason it is taking so long to get rid of is that I was also prescribed a nasal spray that I had to use on a daily basis until I was told to stop using it because it made my infection worse. I had no idea what was going on with my mouth and nose until I saw an ENT (Ear, Nose, Throat) Specialist at the U of MN. He is super great and absolutely knows what he is doing. My infection has gotten a little bit better. My tongue is still bleeding a little bit but it did stop for awhile. He also figured out that I have severe allergies instead of a sinus infection. The correct diagnosis can make a big difference. He referred me to an allergist. At the second appointment. I complained of jaw pain, ear pain, and headaches--he referred me to see a TMD specialist.

Allergies: when I saw m allergist, I got the allergy tests done on my back, which was super uncomfortable. Turns out I am allergic to everything; mold, grass, cats, dogs, pollen, trees, etc. I now have to start getting allergy shots. I got my first set of shots on Nov. 13 and I will have to be getting them once a week now until Feb, when my next appointment is. 

TMJ: I have always had problems with my jaw. I have always had locking, pain, crackling, some ear pain, headaches, etc. So, I am finally getting an MRI of my jaw on Nov. 29. I have to start physical therapy for my jaw. Who knew that was a thing?

Yay, more appointments...  

Side Effects of Driving

You may not think that driving would cause so much extra pain or be such a difficult obstacle for someone, it is--it can be. I had about a three-hour drive to my parents last week and during those drives, I have a lot of time to think and sing my heart out. Last week, I was thinking of article ideas for my personal and my more professional blogs that I have been working on. I realized that driving can be stressful for me and my body--so why not write about that.

I live with chronic pain and many other things too that are aggravated by driving.

Pain: in general I have pain all the time, all throughout my body. And because driving for so long can be so tense for me, it just makes my chronic pain worse all throughout my body.

Muscle Spasms and Cramps: my body has very poor circulation and it never has enough hydration--therefore, I am always getting muscle spasms and cramps. It is usually in my legs, feet, hands, and back that get the spasms and cramps when I am driving. When I was first diagnosed with POTs, I could hardly drive five minutes without my hands cramping. But then I got healthier and learned how to help these spasms and cramps so my hands don't cramp as much as they used to. Which is really nice, but I still get them. Last November, I was about five miles from my parents' house and I was caught speeding and got a speeding ticket because my back was so cramped that I was just trying to get home as fast as possible. that really pissed me off.

Temperature: since POTs is underneath the umbrella term Dysautonomia, I struggle with my temperature regulation. I am always too hot or too cold. I am never comfortable. Even when I am sleeping. I am always waking up sweating or trying to get more blankets on top of me. In the car, it has always been difficult for me to find the right temp., especially now that it is winter. It seems like I get super-hot, super-fast. And then when I turn down the temp. I get cold. So, it feels like most of my drive is just messing with the temp. This becomes extremely annoying fast.

Things that help: I have learned a few tricks to help me be more comfortable when I drive. Stretching is something that always helps. I am always stretching. Whenever I think to stretch, I stretch. Having the seat warmer on low helps with my back pain. Using cruise control helps my body be less tense. Switching hands on the steering wheel and then stretching and cracking my hands and wrist. Having the right seat adjustment also helps.

Even though I have found things that help, I do still experience many ups and downs while I am driving. Especially long distance, anything over 20 minutes.

How does driving affect you with your illness?

If you have a loved one with an illness, how does it affect them?

Is there anything you can do to help them?

Current Health Scare

This morning was like any other morning at work. I was just minding my own business. Then I saw that I had a missed phone call and a voicemail. If there was no voicemail, I wouldn't have called back. I listened to the voicemail which said, "this is the nurse from your cardiologist office, I'm calling you about your last transmission and some things that he wanted to discuss with you...he wants to see you within the next week about this...I will send you a message over MyChart..."

So, I checked MyChart...she said, "I left you a voicemail about your transmission last week. Dr. Adkisson reviewed it and would like you to have some blood work done. A basic metabolic panel to check your electrolytes, he would like to see you soon. Also, until he sees you if you have any syncope--or passing out--you should come to the ED. Let me know if there is a good time to discuss."

Isn't that a great message to receive on a Monday morning?

I immediately messaged her back, telling her that I was available to come in today. I needed to know what was going on right away. My anxiety was sky-high. I needed to talk to my doctor. I couldn't wait. After I messaged my nurse, I called my mom and told her what was up. 

To explain the transmission thing...for those of you who do not know, I have a paper-clip size heart monitor in my chest. It has been there since Feb. 2018. It is supposed to automatically record a transmission to my doctor's technician nurses if my heart rate goes above 160 bpm. I can also record transmissions with a button transmitter that I keep on my keychain.

Last week, on my way home from work I felt the weirdest feeling in my chest. It was fluttery, pounding, movement...I don't know if I would describe it has painful. It did take my breath away and made me temporarily dizzy. I was driving on my way back from work and I thought I was going to crash my car. It was terrifying. As soon as I started to contemplate if I should pull-over--this small episode had passed. After it had passed I had to catch my breath. Then I grabbed the tech nurses number and called them to talk to them about it after I recorded it on my transmitter.

Ever since that episode a little over a week ago, I have been feeling episodes like that more frequently than before. I had started feeling them a little over a year ago, but none of them were as powerful as that one I had last week. 

Last night and this morning I was beginning to think that the episode was just in my mind or that it wasn't anything serious. I was wrong.

I got the appointment scheduled for today at 1pm but they wanted me to come early so I could get my blood drawn. I got my blood drawn. My doc wanted to check my electrolytes and my blood work was normal.

When I finally met with my brilliant cardiologist he told me that he wasn't just concerned about the transmission I sent him but that there were more within the last two weeks where my monitor automatically recorded and transmitted to my tech nurses--that he was concerned about.

This is how I understand it...There was one that showed 10 extra beats in the upper part of my heart and my heart rate got over 170 bpm. There was another one where I had 13 extra beats in the upper part of my heart and my heart rate got over 200 bpm. The one that scared me was where I had three extra beats in the bottom part of my heart which my doc said was rare.

MORE TESTING...yay! 

I am scheduled to have a cardiac MRI done on Nov. 12. I will keep you posted. 

My anxiety is still super high with not knowing any definitive answers yet.

My Cane...

In previous posts, I have talked about the decline of my legs and the possibility of getting a cane to help me walk or just stand while I'm in public. I have also explained how this cane would hopefully be temporary and that I would have to only use it as needed.

At the end of August, I ordered a fold-able sparkling turquoise cane from Amazon. I got it before Labor Day weekend because I knew it was going to be a loooong and exhausting weekend. Fortunately, I didn't have to use it over the long holiday weekend.

The days following the long weekend, I did have a few bad leg days in a row. My legs were uber weak, shaky and somewhat numb. So, when I had my ENT appointment, a couple weeks ago, I decided to use my cane because I knew it would help. And I knew that I needed to try it out in front of a bunch of strangers before I could be around family, friends or on my college campus (where I am likely to run into someone I know).

The first time I used it was to my appointment and back. And let me tell you--it is so much fun to be stared at and given looks because I am a young woman with a cane. But I don't know what else I should expect. I actually felt pretty comfortable with it. And canes are easier to use when you actually NEED it, even if I am walking like ten times slower.

The same day, I used my cane for an on-campus event at Hamline. I attended with a friend, who is also disabled, and let me tell the abled-people reading this blog--it is so nice to have friends that understand your ailments. They don't give you funny looks. Also, it was surprising when I had people opening doors and holding the elevator for me. It was surprisingly comfortable--especially when I know I would do the same thing and have done the same thing.

Since then I have just been using it as needed. Which isn't often. But I am also super stubborn as well.

Using a cane feels like something I should have started doing while I was attending Hamline but I was just too scared about what people would say. And now my only concern is when I would have to use it around family or just around people I grew up with. Those people are always the ones that judge the most. But if people ask because they don't know--I will tell them that it is none of their business or I will tell them that my legs are fucking weak. Because they are and that is the bulk of why I need to use a cane. I just dread having to explain myself to people constantly. It is such a waste of time. That is why I write. So, I don't have to keep re-explaining myself to people. Maybe, I can just tell people to read my blog and then they will know why I live the way I do.

I would like to take this moment to thank my friends with disabilities for being there for me. I really appreciate our friendship and our conversations.

What do you think?

No ER Trips in Over a Year!

That is right people--I have not been to the emergency room in over A YEAR!!! 

 

This is a new personal record for me!!

 

I was diagnosed in April 2015--since my diagnosis through a year ago I was in the emergency room about 6-7 times--all related to POTs flare-ups.

 

Not having to go to the emergency room has been one of my personal goals, especially the more I realized I was getting closer to being a year without an ER trip.

 

The reason I think I haven't had to go to the ER is because I have actually been taking better care of myself--mentally and physically. I found another medication that works for me, I quit drinking alcohol, I became better at listening to my body and knowing when I need to rest and sleep for the benefit of  giving my body a break.

 

I honestly never thought I would last a year without going to the emergency room. I proved myself wrong.

It became a somewhat normal thing for me while I was attending to college. I mean that is 6-7 visits within a two year period. It was exhausting. And I am a stubborn person--I know there were MANY other times that I knew I should have gone in to the ER but just didn't. I just tried to push through my symptoms--which even took longer for me to get over the flare-up if I would have gone in.

Let's see how long I can go without going to the emergency room...

 

Sudden Positive Changes

Heyo, everybody--followers, mostly family and some friends. Maybe even some strangers--highly unexpected.

 

I have officially decided to stay in St. Paul for various reasons--here are a few half-assed explained reasons. lol.

 

ANXIETY: My anxiety was really high ever since I had decided that I was going to move two states over. Just all the logistics that were involved, the toughness surrounding finding a job, the move itself (11 hour drive w/ kittens), etc. I am feeling better now. I literally told a co-worker  (who knows me pretty well) that I wasn't moving and she was like "I know." I was like what? It is because she knew my anxiety was way too high for me to move.

 

NO JOB: I had the toughest time finding a job in MI. Yet, since I decided not to move (yesterday), I have already found a potential job in downtown MPLS (we will see how this works out but I only have good vibes). I will keep you updated on the job situation.

 

FAMILY/FRIENDS: I knew I was going to miss most of my family and friends if I decided to leave. Even after a great labor day weekend--I am SO glad that I am not moving farther away from them. I will still have my own space away from them--which is nice.

 

ROOMMATE FIGHT: I got into a HUGE fight with the guy that was supposed to be my roommate in MI. He said something's to me--he hurt me, he insulted me, and I was not comfortable with the idea of living with him anymore. And this is me being nice and an adult about it. The second I got that bad feeling in my gut is when I decided that, NOPE, this is not going to work anymore. It was an emotional day yesterday but so much has come out of it.

 

APARTMENT: I may have even found a cheaper place to live in the cities. Those details won't work themselves out for probably another week since my "future" landlord is going on vacay. I will also keep you up-to-date on that.

A Political Post: Discrimination

WARNING: this is the most political I have ever been on this blog. If you can't handle it. Back off. I will swear a lot. So, if your small minds can't handle it. Back off. This is also an emotional topic for me. If you can't handle it. Back off. 

 

I am looking for support NOT criticism. However, I know I can't control anyone.

At first I was going to talk about ageism, but then I realized that discrimination (against me) clearly doesn't stop there. I also have to acknowledge that I do have a tremendous amount of white privilege. I am also disabled, queer, identify as female, and I just turned 22 about a month ago. And that birthday had me thinking a lot about some of the bullshit discrimination that I face, as well as maaaaaaaany of my friends face.

Apparently, since this body and mind have only been alive for 22 years, I don't know anything and don't have any experience. First of all, age has nothing to do with knowledge and experience. Just because my body and mind are a little over two decades old doesn't mean that I haven't experienced life and all its shittiness--and its greatness. I even experience the good that can come from this stupid thing called life. Yes, life is precious. I call it stupid because there are sooooo many things that can go wrong and people take that shit for granted. People, especially people in America, take a lot of things for granted. I have also met some pretty stupid and uneducated forty-year-olds (or older).

However, I should not have to lay out every single life experience just to prove my worth and knowledge. And I won't. I am educated, I work, I have experienced discrimination because of my looks, age, and people assume  that I am not disabled because I "look fine." Fucking idiots. There are people that say I am too young to be sick. Illness doesn't discriminate, like you do. Children can get sick. Adults can get sick. Anybody can get sick. You dumb fucks.

I have the right to talk about being discriminated against by ageists, ableists, sexists, and homophobes. I can't even come out to certain family members because I fear they won't understand who I truly am and who I am meant to be.

I have been traumatized, over and over again. But there are people who are waaaay worse off than I am. Like, the children who have been ripped from their families and put into cages on American soil. Even though, there isn't much I can do for those innocent children, I have friends that have also been through waaaay worse shit than I have and I try to help them out as much as I can. I have friends that have been discriminated against in worse ways than I have and I try to be there for them because we have all got to be there for each other. 

I don't care what color your skin is, what sexual orientation you are, how gay you are, how disabled you are, what God you do or don't believe in, or if you have been through some serious trauma. As long as you treat me with love and respect--I will be there for you.

You need to get to know a person for who they truly are before you can just judge them or put them into a stereotypical category. Try to erase those categories from your mind. It can be difficult but try. I know I try. 

If you are not disabled--you are only temporarily able-bodied.

Women's rights are human rights.

Age is just a number.

LOVE IS LOVE!

Disability Parking Permit Club

Yes, as of August 6, 2018, I have joined the Disabled Parking Permit Club. This shouldn't change the way I view myself and the way my disability has overall affected me as an individual but it tooootally has.

No one should feel shamed for having to park closer to any building, company, store or Barnes & Noble just because of your disability--but you do feel that way. Not because you are ashamed but because society makes you feel like you should be ashamed. And this shame is a lot worse when you don't look sick and are a young ill person. I usually don't look sick. I am always sick. I am always disabled. I am always feeling some sort of symptom.

On Monday, when I received the permit in the mail, it felt all too surreal. Then I actually used it because my legs were shaky and weak and I had to go to Target to pick up a few groceries. And I told myself that if I couldn't find a somewhat close parking spot that I would have to use it. I went there at about 6:30 p.m., so of course I couldn't find a parking spit that was close enough for my weak ass legs. So, I parked in the handicapped one by the entrance. It felt so odd. It felt like everyone was staring and judging and pointing--but I actually only got a few looks. Maybe...

On my way out of Target, I noticed how there isn't a very close place to put my cart and I really had a terrible time walking. I had to lean on the cart for support--like a walker or something. I ended up leaving the cart right in front of my car on the sidewalk that separates the parking spaces. Which a lot of people do, and I think it is because the cart drop off isn't very accessible.  Part from human laziness--some people, like me on my bad days, aren't going to walk across the the parking lot to the cart drop off. The entire time I was there it felt like my legs were going to give out.

Despite the looks I felt like I was getting--I am glad that I have this parking permit because I know it will help me on my bad days. Even if I am going to be in MN for another month and a half. I can use it when I visit. and I know I will need one when I move to MI. Hopefully, that one won't take as long to get. This one took over a month--stupid sloths at the DMV...

New Medication (POTs Update)

Earlier this week I posted an update about my POTs since I had a cardiologist appointment on Monday, June 25. I realized that I totally forgot to mention a new medication that I have started.

It isn't entirely new because I have taken it in the past but only as needed. Now I am going to be taking it every morning and also as needed. It is a beta blocker--which basically means it helps control my blood pressure and helps with the palpitations that I experience. The med is supposed to be for blood pressure and some people even use it for anxiety. I don't have high blood pressure (I definitely have anxiety) but another one of the medications makes my blood pressure go up. Sometimes it goes up too high. I can usually tell when my blood pressure is too high or too low. So, I know when to take a certain med and when not to take a certain med. I also have a blood pressure cuff--just in case. Thanks mom, it was a great "off to college gift" for such a sick guuuurl like me.

I have taken this med int he past and it has helped. So, it should be interesting to see how it works when I take it on a daily basis. The "new" med that I am on is called Pindolol for those of you that want to do some research--I know you are out there. I understand--people are curious.

I have been taking this drug for almost a week and can already see a small change for the better. Hopefully, it can continue to get better. Otherwise, I don't know what I am going to do.

New Changes (POTs Update)

On Monday, June 25, 2018, I had a cardiologist appointment. I knew I was going to be going to this appointment alone. Sometimes I prefer that, other times I don't. But I was indifferent this time. I do enjoy feeling independent.

First, I met with device nurses who had to make sure the heart monitor in my chest was still working as it should, which it is. The picture of me with that big ass thing over my chest is a device that the nurses use to make sure it is working. So, I have to sit in a chair with that thing on my chest for about 10-20 minutes. It is different every time. I have to pretty much wait for her to print out all the episodes. Episodes, in this context, mean the times I had to press the button on my clicker to make sure my monitor records how I am feeling. So, if I am having a symptom that I want to record on it, I can press a button and it will record my heart rhythm and rate and is sent to the device nurses.

Then I met with my cardiologist. He is a pretty great doctor. Since I was going alone to this appointment an didn't want to forget anything, I made a list of concerns and questions that I needed and wanted to ask. This is a disabled person's guide to seeing their doctor. Seriously, this helps you keep the appointment on track. It helps you feel like the appointment was not only successful but helpful. Those are rare feelings to have after you leave a doctors office.

One of the first things on my agenda was to ask if they had found anything with the recorded episodes. They did find things but nothing to be concerned about. The reason they have this monitor in my chest is to see if my arrhythmia is anything to worry about. So far it isn't. They found a couple of PACs and PVCs also known as a premature contraction (early beat of the heart that disrupts the heart's rhythm) which is apparently a normal thing for someone who has POTs. It only lasts for up to a minute. And then my heart corrects itself. PACs happen in the upper chamber of the heart and PVCs happen in the lower chamber of the heart. This is all from the American Heart Association website. It is quite helpful in understanding some things as well as explaining some things to y'all. In conclusion, nothing to worry about, yet.

It is extremely validating that what I am feeling in my chest, whether that be tachycardia or my arrhythmia, is actually happening when I decide to record an episode. Before when I wore the temporary short-term heart monitors on the outside of my chest for a week to a month at a time, that wasn't as validating. Now it is like I feel something and it is real. That is amazing to a girl that has been told that she "just has anxiety."

Then I asked my cardiologist what my super highs (high heart rate) and super lows (low heart rate) mean. He said not to worry about it unless it goes over 160 bpm. My heart monitor will automatically take a recording if my heart rate goes over 160 bpm. He also said that I can record an episode if it bothers me or if the heart monitor on my iWatch says something different (if it says it is over 160 bpm). But the super highs and lows still concern me. It explains why I am so exhausted all the time. My highest heart rate for a day could be like 140 bpm and the lowest of the same day would be 40 bpm and that wouldn't be when I was sleeping or anything like that.

My face has been super puffy. I am pretty sure I have something else going on or it is a reaction to my medication. So, I asked about that and my cardiologist said it isn't a side effect to any of the medication that he has prescribed me. That just means I have to talk to my primary doctor about that problem.

My physical health, my POTs, has been affecting my work schedule. My average work week is about 30 hours. That is not sustainable for me to live alone in the Twin Cities. So, I have been trying to fight through the shitty symptoms to get more hours in and it is soooo difficult and annoying. Thankfully, I don't have to worry about losing my job because my boss understands and my schedule is super flexible.

If you have been reading my previous posts: "My Legs Have Failed Me" and "Why I Have Been Thinking About Getting a Cane..." you know that my legs have not been very cooperative for me on certain days. Well, most days I have some sort of trouble walking. But I try not to make it noticeable. In recap of those posts, my legs get weak, shaky, painful, and sometimes numb. And this is from the POTs. POTs doesn't just affect my heart, it affects all different parts of my body.

I explained all that because I have also been thinking about getting a Disability Parking Permit. I talked to my cardiologist about it. I explained to him that I would only be using it on my bad days and as needed because I know I am supposed to walk and exercise as much as my body will let me to keep up what little strength I have. Fortunately, I have a great doctor who understands my frustrations and worries. Because not only are my legs weak but sometimes I feel like I am going to pass out by the time I walk from Target to my car and then I also have to deal with groceries. And just to mention, I do live alone (besides my kittens).

Yes, I am getting a Disablity Parking Permit. I never thought I would actually have to but I need to do what is going to help me get better.

Future posts to come about the emotions surrounding this new part of my life.

Why I Have Been Thinking About Getting A Cane...

It wouldn’t be permanent!

I know that is what you are thinking. Because before I even became disabled and met my friends with disabilities, I would have thought the same thing. This cane would be temporary or a “use as needed” type of thing. I have friends with POTs and other debilitating disabilities that have had to use canes, wheelchairs, braces, walkers--only temporarily or as needed. It is apparently a very common thing for people to use. Because people who have disabilities have good days where they don’t need to use anything to help them and they have fucking terrible days where they do need help.

One of my friends (they/them/their) who lives with POTs, has used a wheelchair for the past 11 or so years. They first used it all the time--that was their only mode of transportation because their illness had flared so bad that their legs were too weak and shaky to walk. I didn’t know them at that time because we were both in separate High Schools. But when we met in college after I had started the disability support group, I learned a lot from them. They started having more good days or at least didn’t have the worst of days--enough to use their wheelchair. So, they only needed to use it as needed--which was about twice a year.

It honestly blows my mind how abled people are so blind to things like this. I know I was. I learn from my friends and how they have had to live their lives.

There have been a few times where I was texting my friend and telling them about how I was feeling. I was telling them that I could barely move, was in pain and was feeling so weak. I could barely walk. I was so exhausted that I could barely move. Then my friend was like, “want to borrow my wheelchair? I can bring it to you.” I was like, “Nah, I can make it. I can push through it.”

I just don’t think I was mentally prepared to use a wheelchair to help me move. But I should have taken my friend up on their offer because I barely made it back to my second story dorm room. That is just one example of when I should have taken the help andI should have used the wheelchair. But I just was not mentally prepared to.

Now let me refer you back to an article called, “My Legs Have Failed Me (Health Update),” from September 23, 2016. Read that right now....

And there is another reason I have been thinking of getting a cane. That was one of the scariest moments of me feeling completely helpless, that I wrote and published a blog post on it! That was probably one of the worst times my legs have been so weak, shaky, numb, and in pain.

The reason this issue comes up for me recently is because I have noticed that in the past couple of weeks (and occasionally since I published that post I just talked about) I have had trouble walking. Not that this is a new thing but I thought if a friend of mine can have a “use as needed” wheelchair, why can’t I have a “use as needed” cane?

Especially, since I think it will help. If it doesn’t then I can just bring it back to the store or give it to my dad...

I know people won’t take me seriously or think I am just full of myself. I don’t really fuuucking care. If you are one of those people, don’t expect much communication out of me. I think I know what my body needs more than you. And trust me, I really don’t want the extra help--from a cane or someone like you, who is trying to tell me how to live my life. But sometimes I may not have a choice.

My legs get weak, shaky, painful, numb and tingly, you try walking like that. Fuck. It is so difficult. I have had to walk like that A LOT. Especially, in college when I had a more demanding schedule. I had to walk everywhere on my college campus feeling like that. It was only one part of my hellish college years. And guess what? It has still been hellish. I thought that once I get out of college, everything would get better. Nope. Some-not-very-many-things got slightly better and others got worse, and completely new even worse things have come up...

I digress--

There are even fold-up canes that people can put in their purses or bags. They make them for people to use as needed. I am a part of several online and Facebook support groups and chats for my POTs. Honestly, it is the place I go for my BIG questions about my POTs. Because I know the docs won’t be of much help. These docs haven’t lived with POTs, they haven’t experienced like I do on a daily basis! So, talking to billions of people who live with POTs is quit spectacular and just another reason to have the internet and why it is a positive outlook for people who need help from other people. The support groups that I have been on, all the people have been very kind and friendly. If they weren’t then someone always says something, which rarely happens.

The point of me mentioning the usage of the several online and Facebook support groups and chats for my POTs is because I took my scary feelings and questions to people that live with POTs everyday. This is what I posted on May 14, 2018: “How many of you use a cane or crutch for your POTs symptoms (weak and painful legs)? When did you decide to get one and why?”

Here are some of the responses that helped:

• “I stumble a lot when hot so a cane helps.” yass. me, too...
• “I bought one last week after 2 years of trying to do without.” sound familiar?
• “I use a cane. The one I have folds up so I can have it with me in case I need it. Mostly I use it when standing in lines because standing still is harder than walking. And when I am having what I call a ‘wobbly day’ which often involves intense vertigo, randomly falling over, and running into things.” yass, yass, yass. All the fucking time…
• “This is the unfortunate truth. It’s so much easier to get help without argument or judgement if you’re using a mobility aide.” Then I won’t have to bother anyone...or fall over from being stubborn…

Do you see how these are perfect examples and literally the exact thing I needed to hear??!

All of those comments along with some friends advice made me like super excited to get a temporary cane and they all also validated my opinion and idea to get and use one! These people make me feel like my problems are normal.

There were also a surprisingly LARGE amount of people who live with POTs that commented about their use of rollators/walkers and wheelchairs for full or temporary use. I thought it was only between 12-20% of people with POTs. But know I am thinking it is a LARGER number. Which saddens me but also makes me feel that my feelings and symptoms are super 100% valide. I still have a lot of irrational doubt that nobody thinks I am actually a sick person. That someone, if not everyone thinks I am full of shit and faking it…

So, please let me know what y’all think about this? Yah or nah? Wait or don’t wait? List to them or say fuck them?

I will be talking to my cardiologist about this, within the next couple of weeks.

Memorial Day

A few years ago, I was asked to speak at my hometowns' Memorial Day service. My dad spoke and then I spoke after him. It is one of the things that we have in common, public speaking. Since tomorrow is Memorial Day, I thought I would share the speech I gave. So, here it is:

"We are all here today to remember those who bravely sacrificed themselves for our freedom. They were all loved by someone and some of them were loved by us, in this room. I personally have not lost someone close to me, fortunately my father came back while he was in the Marines. But there are many other children around America who have lost a mother or a father, and they will never forget all of the wonderful moments they have had with them. And they will not get any more of those moments with them. Because that is the price we pay for freedom, and safety. I honestly think that many Americans take that for granted.  They take freedom and safety for granted. Many do not realize how many lives have been affected just so they can safely walk down the streets in America. But this is why we have days like today, a Memorial Day to not only remember the countless Americans who have died for our freedom but to be reminded of those young men and women who fought and died for OUR freedom... To be reminded that they were Americans just like all of us, who fought and died in some foreign land.

A few years ago I spoke at Lakeview’s Veterans Day program, I also talked about how we take things for granted and that instead of one day, Veterans Day, we should thank Veterans every day or whenever we get the chance to. I bring this up because after I was asked to speak for today, I was mind boggled by the vast differences between the two days. Veterans Day is to thank those who came back, those who fought and survived to come back and live the rest of their lives with their loved ones. And Memorial Day is to remember those who didn’t, for me it was hard because I haven’t lost anyone but I have seen it. I have seen it in the eyes of the survivors, and family members. I have seen the loss. And I see it every year when I come here to this Memorial Service.

I want to leave you with a quote from the former President Ronald Reagan said “The price for this freedom at times has been high, but we have never been unwilling to pay that price. Those who say that we are in a time with no heroes…they just don’t know where to look. The sloping hills of Arlington National Cemetery, with its row upon row of simply white markers bearing crosses or stars David, they add up to only a tiny fraction of the price that has been paid for our freedom.”"

Three Year Diaversary

Today, April 6, 2018, is my three year diaversary--or diagnosis anniversary of POTs. Three years ago, in 2015, I was diagnosed with Postural Orthostatic Tachycardia Syndrome or POTs. It has been a long and stressful journey. I still struggle everyday with multiple symptoms. And just because I have been diagnosed for three years, doesn’t mean I have only been living with it for that long. I have probably been living with POTs since about 2012, or since I was fifteen-years-old. That is around the time I started to notice something was wrong. Ever since I almost passed out at Spring Play practice in the Spring of 2015--I knew something else was going on other than just low blood sugar. But I kept quiet. As a young female, I knew no one would believe me other than my persistent mother. Plus I was in some denial and distracted by the death of my grandfather.

April has never been my month.

I have been on multiple medications and have worn four heart monitors--still currently wearing one--it’s in my chest. (check out my last blog post) I have been to the emergency room about six times--all POTs related--and I have published a few posts on some of those visits.

In fact, a few days after I was diagnosed with POTs is when I started this blog. So, it’s this blogs three year anniversary! I can’t believe that either. That I have been publishing about POTs and other illnesses for the last three years--trying to spread awareness and my story with others.

For me, my diagnosis was pretty freeing for me in many ways. I had finally had a name for everything that I was experiencing. I had a answer, FINALLY! I had ways to make some of my symptoms better. I had ways to treat my symptoms. I had medication to help my symptoms. I had all these methods to help me feel better in general. And some help and some don’t. I know what to do if I am really feeling awful, like if I am feeling like I will never get better--I go to the emergency room to get IV fluids and rest.

After I was diagnosed, I learned that I wasn’t the only person that had these symptoms and felt terrible all the time. There were other people--other women--that all understood what I was going through because they had gone through it or were going through it with me. I found this entire new community on social media support groups. It was insanely awesome. Something I never had even thought of before. I had it. If I was ever concerned about something or had questions I would post about it on about five different support groups sites and I would get answers about what had worked for other people and what hadn’t.

I was in my second semester of college when I was diagnosed. I didn’t have a lot of friends at the time and I was feeling super alone. That is when I decided to start a support group on campus for students that lived with disabilities. By the next Fall, we had our group formed and had a hand full of students that had joined. Students come and go as they please. We have a few “regulars,” but the support group has really helped me and I have only heard good things from other students on campus. That group is something I will always cherish and also make sure it continues at Hamline. This means it is also the third year of the group. I ran it for two years and this is the first year it has gone on without me. I know I left it with great student leaders--I know because they are my friends. They are kind and truly care for other students that have disabilities or have any social stigma against them. I was completely fine leaving them in charge. And in fact, I have even gone to an event or two that they have put on for the group.

My advice for those who have been recently diagnosed with any type of illness--whether it be physical, mental or a learning disability--get help, find support, see a therapist that works for you. Finding help and support from a doctor, therapist, counselor, friend or family member and finding support through online or in-person support groups really does help. Talking to people that go through similar things as you really does help. It makes you feel less alone. Also, talking in general helps. If you talk to your family and friends about what’s going on--they can get a better idea about what you have to deal with on a daily basis. And I know that misunderstanding can be difficult. I have great friends and some family that ask me questions about all my illnesses because they want to understand me and my experiences and they want to help me. That is also helpful--for the people who have loved ones who live with illnesses. Just find ways to cope with this new normal that you are trying to maintain. I know it can be extremely difficult at first but it does get better. It may feel like a roller coaster and that’s because it is. That is why you have to line up your support system and support people. So, you always have someone to fall back on and you always have a safe place to be. Everyone needs someone. So find your someone--that person(s) you can really count on. I am lucky to say that I have a few people and places to go that really do help me feel better. 

Sometimes I need to shut myself out from the world and people and places. But I still have to work. I still have to visit family and friends--for their sake. But I can’t always be stuck in my apartment no matter how much I want to sometimes. It is ok to do that every once and awhile but I know that if I keep myself cooped up in my apartment all the time that it will make my depression and anxiety worse. As well as, my POTs. I need fresh air. I need some exercise. I need to be around people sometimes, to feel better. And other times I can’t be around anybody and that’s fine to. Find your balance.

It will be another interesting year living with POTs. I can only wonder what my illness has in store for me. Maybe, I will have more flare-ups, maybe I will visit the ER. Maybe, I won’t. Whatever the case may be, I know that I will be ok because of my support system. Because of my family and friends.

The Thing That's In My Chest

The thing that is in my chest is a paperclip-sized heart monitor. I thought it wasn’t going to be noticeable. I thought it was going to be invisible to me. It isn’t. It is quite annoying. 

When you think of a chest, you don’t think of boobs being in the way--they are. And guess where the monitor is placed? In my fucking boob. Right above the fourth rib. So, if you are a person that has boobs, countdown to the fourth rib and you’ll see where they would have placed yours. It is right under the skin of my left boob--right next to my sternum. 

The best and worst part is that you can feel it sitting right under my skin. I say it is the best because it feels cool as fuck. I say it is the worst because I have accidentally moved it around and can literally hear my breast tissue being stirred--which I am sure it isn’t supposed to do that. Another reason I say that it is the “worst,” is because when I am holding my baby cousins on my chest or feeding them--it hurts. My chest becomes painful when it has contact with anything. But when I am holding my adorable cousins and giving them sustenance--I don’t care about the pain. 

How can I care about the pain when I am holding something as precious as my baby cousin?

The scar on my boob is thicker than I thought it would be too. But that may be because I did pick at it while it was healing. Plus I am sure it will continue to shrink as time goes on--until they have to cut it out of me…

I also said that I was going to talk about my procedure to get it in. It went well. I was awake the entire time. It took like less than five minutes to just put it in. The prep took like two hours--which was a little ridiculous. But I did want fluids. I always want fluids. I had great nurses and hilarious doctors. You know how in Grey’s they talk and crack jokes...yeah, that’s what it is like. My cardiologist was cracking jokes the entire time. It was great! So, in a way, I did enjoy the procedure. Recovery also didn’t take as long as I thought it would. I had pain for a couple of days. And obviously still have some pain every once and awhile, as I said before. 

I am so glad that my mom and youngest brother, Ayden, could come with to keep me company and make me laugh. I was incredibly nervous all week and the morning of--leading up to the procedure. Ask my neighbors and friends, they had to calm my ass down. I was fine as soon as I got to the hospital--which I knew I would be--thankfully. My mom and Ayden even spent the night with me. Which was something I enjoyed. I never really get to see them. Maybe once every month if we’re lucky. Maybe once every other month. It is difficult to visit family with my busy schedule. I will get to see them this upcoming Easter weekend--which will be nice and interesting.

One thing I almost forgot to mention is that the hospital gave me a demo heart monitor to keep. So, I keep that in my purse to show people. I am glad they gave it to me because people are always so interested in health stuff. And people always ask questions that I can’t answer...so, I just show it to them and they sometimes shut up. 

How I Lost Weight at the State Fair

As most of you know by now, I live with an eating disorder (Ed). Right now I guess I could say that I am in recovery. I don’t know exactly how long I have been in recovery but I know that I am. It has been a long road and recovery for me is never constant. I always have Ed in the back of my head telling me that I am not good enough and telling me that I am fat. It also tells me that I shouldn’t eat and that I am not hungry. But that is beside the point.

I am going to be sharing a story of when I was at a true low. I haven’t shared this with really anybody except a few close friends and my therapists.

The Minnesota State Fair is one of the biggest fairs in the United States. As many of you know, it is known for its countless entertainment and deep-fried food options. Most people make jokes about how they gain weight there because of all of the beer and deep-fried food they eat. I, however, lost weight.

Here is my story:

The summer before my senior year of college I worked at the MN State Fair to make some extra cash. I managed to work every single day of the fair in the Moo Booth of the Cattle Barn. I didn’t work with the cattle. I worked with the people that visited the Cattle Barn. I learned numerous facts about cattle and vomited trandom knowledge to people about it. I also cleaned and gave kids and weird adults temporary tattoos. And I can say weird adults because I would be one of those people that would get a temporary tattoo of a cow and other barn animals on me.

To get to the fair grounds I had to take the bus and then walk all the way to the end of the fairground to the Cattle Barn. From the entrance to the Cattle Barn--they are on the complete opposite sides of each other. So, I already had to do a lot of walking before my shifts even started. Which during our shifts sometimes they would ask us to go to different parts of the fair to pick up things for the Cattle Barn--which adds even more walking.

Me working at the State Fair that year was like the first time I had ever really gone there and experienced the fair. A few years before I went to the fair but only to go to a concert with my mom. We didn’t do anything else really. And that is on me--I don’t enjoy fairs. They are crowded, expensive and nasty.

Everyday at the fair I would walk about 7-15 miles. I also wasn’t eating. That’s how I lost the weight. I would eat breakfast in the morning. And during my lunch break I would eat like a granola bar or some sort of cheese/milk product that they were giving out for free outside of the Cattle Barn. And I don’t remember eating much for supper. I think I would just sleep when I got home because I was so exhausted and had no nutrition. I took that opportunity of working at the fair and walking so much to loose the weight. Not because I needed to but Ed told me that I could and that I had to.

At that time in my life, fighting Ed was so difficult that I just continued to give in. That seemed like the easiest thing to do at the time. My depression was terrible and I wanted to start my senior year at Hamline thin.

So, within that 10 day period of working at the State Fair I lost 15-20 pounds. And I was so proud of myself for being able to work that hard. I thought that feeling that terrible to look “good” was worth it. I was wrong. At the beginning of all of my semesters at Hamline. I always got super sick. And that’s because I would always starve myself or “work out.” Which my version of working out is just long walks. Because I can’t really work out with a tachy heart.

I ended up gaining the weight back and more. I gained “a lot” of weight during my senior year and then my Ed got even worse. Then I was diagnosed the summer after graduation.

People that know me, may think that I am thin and always have been. Some probably don’t even notice when and if I have lost or gained weight. But I always notice. And I don’t even have a scale to weigh myself--because if I did...I wouldn’t be in recovery.

My Upcoming Procedure

My next and hopefully my last heart monitor will be placed inside my chest on Friday, February 16, 2018. It will stay in my chest for upward of two-three years depending on multiple factors that I don’t need to get into right now. When I say they are putting it “in my chest,” I mean it is going like right underneath my skin over my heart. It isn’t that serious of a procedure. But it is still somewhat scary and nerve wracking. I will be conscious and have a local anesthetic. I can even drive myself home after the procedure--that’s how not serious it is.

I heard about this heart monitor aka loop recorder about two years ago. My cardiologist mentioned it as a possible option for me. Of course when I found out about it, I wanted this new technology inside of me immediately because I need answers.  There are a few major differences between a loop recorder and the heart monitor I had to actually wear on my chest a few weeks ago. The loop recorder is very small--paper clip size--it lasts longer, it goes inside your body, and it is way better at detecting your heart rhythms and such. Whereas the heart monitor I wore for the third time, a few weeks ago, is larger, goes on the outside of your chest, and isn’t as reliable for detecting rhythms. Plus the heart monitor has to be taken off and irritates the skin on the chest A LOT. That was my least favorite part about that. I am still trying to get my skin on my chest to be smooth as it once was. The loop recorder has a battery that last over two years so I don’t have to worry about charging it or anything. Those are a few differences--not to mention the procedure that is obviously involved with the loop recorder. I think the only similarity between the two is that they are heart monitors. Yup, that’s about it. One is more invasive, last longer and does a better job at detecting errors of my heart. I am finally getting that one.

I found out last Friday, February 2, 2018,  that I was going to receive this loop recorder--finally! I felt so pleased when my cardiologist agreed with my mother and my suggestion after complications and frustration of wearing the other “normal” heart monitor. So, of course, last Friday I felt some relief and also like my doctor actually cared about me. Which is a pretty great feeling. The weekend I barely thought of life outside of my apartment, sleep, Netflix and cleaning. Last weekend was my last two work-free days until February 24--so I thought I should enjoy them--along with getting something done.

By the time this Monday, February 5, 2018, came around I got a phone call from the hospital to schedule the procedure. I was excited to be able to put this on my calendar and let my mother know what it was. I also had to schedule a one week follow-up visit to get my incision checked to make sure my wound is healing well. Which I didn’t even think about prior to the phone call but I scheduled that as well. By the time the phone call had ended I felt relieved that it was “official,” meaning scheduled and on my calendar.

However, my next feeling was anxiety and urgency to talk to my mother. I was at work when all of this was going on--of course. I immediately called my mother to update her on everything. She asked if I wanted her to come with me and I was like “yes, please, if you can.” I need my mother sometimes. I knew that I would need her on the day of the procedure. I don’t know why--I just knew. Other than that I felt all the pressure and anxiety surrounding this simple procedure that I knew I didn’t want to go alone. Which is funny because when I found out last Friday that I was having it put in I knew I wanted to be alone. It is crazy how things like feelings can change so quickly.

I think it is odd that I have had so much anxiety over this simple outpatient procedure when I have literally had oral surgery twice with anesthesia and potent drugs. And of course I was anxious for those but I feel like this is worse somehow. My fear surrounding this is the possibility that I didn’t need this in the first place. I just want this loop recorder to explain why I have been feeling worse and have had this fluttering feeling in my chest. The feeling is actually worse than fluttering--it literally takes my breath away when it happens. It scares the hell out of me--so, yeah--I hope I get answers from this loop recorder. If I don’t then I will feel even more crazy than I already do.

There will be more updates to come on this particular health situation. I will probably post again after I get it implanted. Let me know if you have questions. Thanks for the love and support!

My Third Heart Monitor

Yep, that’s right. This is the third heart monitor that I have had to wear thanks to my cardiologist. I have some anxiety about wearing one again because of the odd looks, stupid questions and unwanted attention I get. This third time around I have decided not to cover it up (as much) because this is what a chronically ill and disabled person looks like. Sometimes...maybe even once a year they have this device strapped to her chest.

Me wearing this is more of a precautionary thing rather than a “bad sign.” I am not even worried about the results because the last two times they found the same “non-threatening” arrhythmia that is normal in patients with my condition, POTs. And yeah, it sucks and is super uncomfortable. But something I have learned over the last couple of years is that life is supposed to be uncomfortable, sometimes.

I had my cardiologist appointment on Monday 1/8/18. I was alone. It was nice. It was freeing almost. Because right after the appointment I had to go back to work like a normal person...so, that was the nice part of my mother not coming. Because if she did come then I would have felt guilty for not being able to spend much time with her. Especially since I can’t afford to miss work. I do really miss her. But this time I felt like I didn’t need her at all. My depression has been the best it has ever been in the last year. It has just been my anxiety that has been getting to me. However, since my depression has been better...my PTSD symptoms have been better. That means I haven’t been dissociating as much as I have been in the last couple of months--thanks to these new antidepressants.

The part that should concern anyone who cares enough to read my blog posts (through and through) is that when my cardiologist was talking about my last appointment that was in September I had no idea what he was talking about. Since my depression, PTSD and dissociation was so bad I didn’t remember anything from that appointment. Dissociating fucks with my memory--a lot! My cardiologist seems to be more concerned about my mental health than he does about my physical health. Which I guess, they do come hand-in-hand. Maybe that is why he is so concerned. But I did tell him that my new antidepressants have been working.

That and because the dumb fucking holidays are over--finally. It always seems like they will never end. And if you were with me over the holidays I am pretty sure you could tell that my mental health was fucked. I was super distant or talking about the ways I could kill myself using the driest sense of humor I have--which also if you know me--that’s about right. I was shutting myself down and not really talking unless I was holding a baby cousin. Those babies made me feel some love and importance. It is something about being the oldest and the role model that makes me want to stick around to help out all my little cousins grow up to be the amazing people I know they will be. I especially want to be around for my brothers, I know they are going to need me. That’s what I have to keep reminding myself to survive.

However, when I was explaining this new odd arrhythmic feeling that scares me and takes my breath away to my cardiologist, I knew that he was going to have me wear another heart monitor. Well, part of me was surprised and part of me wasn’t. I am surprised he hasn’t put the long term heart monitor in me. That one we have discussed before and it sits over my heart right under my skin. But maybe that’s because I told him this uneasy feeling (arrhythmia) can happen a couple of times a week. And it’s funny because the first time it happened I was scared and confused but I thought it was a fluke. It felt like I was overreacting because that is what the medical industry tries to make women feeling like--they make you feel like you are overreacting and making something bigger than it actually is. They make you feel crazy. So, yeah, I didn’t really talk about it to anyone--then it kept happening. So, there is a huge part of me that hopes they find something. But that same part knows that they may not. I just wish he would put that long term monitor in. That makes more sense to me--at this point.

Let me know if you have any questions or comments. Thanks for all your love and support!