School and Appointments!

Long time no post!  I have been so busy with school and getting ahead of my school work before I get a POTS flare up and get behind.  Between school and doctor's appointments I am a very busy girl! I usually have 1-2 appointments each week.  

School: It takes me 5 times longer to get studying done than other people.  Brain fog gets the best of me and I really have to focus hard and re-read information multiple times to understand and retain it.

My heart rate is continuing to increase which isn't good.  It is getting too high which means my heart is working too hard which is why I am so tired all the time and sleep for 11 hours each night. Dr. Coleby is switching my beta blocker to a different one to see if it will bring my heart rate down. He could have increased the Propranolol but it will just make me more tired.  So he is switching me to a beta blocker called Nadadol.

I also was put on a medication called Florinef a couple weeks ago, it helps my kidneys retain water better.  A side effect of Florinef is migraine headaches.  In the last 2 weeks I have had a headache everyday.  Not just any headache it is a migraine headache.  These headaches make it 100 times harder to study or pay attention in class.  So Dr. Coleby decided to cut my dosage in half to see if that will help with the side effect of the headaches.

I also will be starting Physical Therapy for my joint pain and hyper mobility.  The barometric pressure with changing weather just kills my neck, shoulders, knees, and ankles.  It makes my symptoms worse! Ugh!  The joint and muscle pain has increased since 6 months ago which is unfortunate. I hope physical therapy helps with the neck and shoulder pain which is very bothersome.

For the most part I am doing so much better than I was 6 months ago.  I am able to actually get out of bed!  I still need to plan ahead for activities and make sure I get a proper amount of rest and fluids in order to still have a college life! I will try to do better about posting! :)

At Least I Tried.

Not many people know this but when I got really sick back in February, I had to quit my job because I simply could not get out of bed.  I was sick, tired, and in pain on a daily basis.  After I got diagnosed and started medications to treat the POTS symptoms, I decided 3 weeks ago to try to go back to work doing home care with the elderly a couple times a week.  The last 2 weeks I have been working again. It was amazing to get my life back and be independent and have something to do everyday. I love my job! 

However, I am not sure if I jumped into it too soon or what happened but since Monday afternoon I have been very sick.  My stomach pain is unbearable, I am exhausted, and dizzy.  I can't drive anywhere because how dizzy and lightheaded I feel. It is miserable to have to let down my boss and myself when I tell him I can not see our patient.  I am not sure if I will be able to continue to work, which is very upsetting.  

Since I am not feeling to well and have time on my hands. I want to know any questions you all have about POTS or anything regarding the illness. I still have questions myself so I will do my best to answer them.  Just place a comment in the comment section below.  

Strong. Healing. Loved.

I have been in a "POTS" crash for the last 4 days. What that means is my symptoms start to flare up, I have been having my excruciating stomach pain and have been sleeping around 10-12 hours each night and still waking up tired. (NO I am not sleeping too much). My body is run down and needs the sleep and relaxation.  When I sleep that much it is so hard to study for finals which I have also been dealing with. Tomorrow is my last day of the summer semester, YAY!

I went to see Dr. Coleby on Tuesday. He's the POTS doctor I have been seeing.  I finally have my heart medications under control so that is good news! No more heart working too hard. However, the medication he put me on for my brain fog stopped working, so we upped the dose of it to see if it will start to help my body again. I hope it does because it was really helping me be able to focus and do homework, and it also helped with the dizziness when standing up.  I also am trying a sleeping medication so hopefully I can finally get a normal night's rest. That would be amazing.  Even though I sleep 8-12 hours each night, I was up around 5-8 times and have restless sleep at least 25 times each night.  (My FitBit gives me this information). It is miserable, if I were able to sleep through the night I most likely wouldn't sleep 8-12 hours.

Today I received a very special package in the mail from my Best Friend, it is a bracelet with a hummingbird on it.

The meaning of this bracelet goes:

With wings that flutter in the pattern of an infinity symbol, hummingbirds are associated with continuity, healing, and persistence. Delicate yet strong, the hummingbird actively seeks out the sweetest nectar representing our desire for the joyous gifts in life.  We wear the hummingbird charm to be tenacious in the pursuit of dreams while keeping an open mind to spiritual awakenings. 

Here's to my best friend that is ALWAYS there for me.

"True friendship isn't about being inseparable, it's being separated and nothing changes."

No fun for having fun

These past 3 days I have been sitting here burning my stomach with a heating pad, keeping me feet up so they do not turn purple, and sitting in a dark room to try to get rid of my migraine. While all this is going on I am studying for finals next week. So happy summer semester is over.

I went to see my POTS doctor, Dr. Coleby last week. He increased my dose on the propananol (heart medication) because my heart rate was continuing to go too high.  He also put me on another medication to help with the dizziness and brain fog. It does wonders! I can actually do my homework without staring off into space and I actually know what I am doing now.  The downside of this medication is it gives me goosebumps all over my body, especially my head; it's like little ants crawling all over me, so uncomfortable! My next appointment is next week, hopefully I will get something to help me sleep, the only thing that helps is benedryl but it makes me feel hungover in the morning! No one wants to feel hungover. 

I had a long weekend at a country music festival for my brother's birthday. I knew it would take me a long time to recover from the weekend, but it was so worth it. I had a blast, sometimes you got to suck it up and have a little fun, however I pay the consequences.

My brother requested to be featured in the blog. So Happy Birthday Big Brother!!

Here's a picture from the weekend!

Neurology and the Nerves!

POTS is a nerve issue, hence the neurology appointment.

I have been very busy the last few days and forgot to tell you all about my neurology appointment last Friday with Dr. Cortez!  Dr. Cortez is a neurologist from the Mayo Clinic who specializes in Dysautonomia.

She gave me a lot of great advise on how to measure out my salt intake. She said put the 10 grams of salt in a baggy in the beginning of the day and sprinkle it on your food throughout the day until it is gone! While doing that, continue to take the Sodium Chloride tablets.  I am drinking at least 4 Liters of fluid a day. You all should try doing that, it is merely impossible!

Anyways, Dr. Cortez is worried about my heart palpitations.  She ordered a 24 hour heart monitor that I have started this afternoon! I am covered in wires while writing this.

She also ordered a 24 hour urine analysis to check for mast cells which is an allergy.  I am also in the middle of doing that.  The heart monitor is one thing but the 24 hour urine collection is miserable. I won't go into details! :)

I go see Dr. Cortez again in 5 weeks to go over the results from the heart monitor and the urine analysis.

The Journey Continues

Working out isn't all that bad when you have a view like this.  Don't get me wrong I still do not like it. But, if it will help me feel better, i'll do it!

Luckily the University of Utah got a new student recreation center this past year with an all new gym. It is spectacular, huge, and gorgeous. Look at this view from where I ride the recumbent bike, can't beat it can you?

Tomorrow is my appointment with Dr. Cortez, the neurologist.  Hopefully she has an answer to my stomach pain.

My heart is having more and more palpitations each day. Last night in the middle of the night my heart rate was in the hundreds. Yikes!

Sleeping is still terrible. Restlessness is the most miserable thing!

Quick update!

I have been working out on the recumbent bike for 3 days straight, let me tell you it is hard work.  I have never been one to go to the gym so this transition is rough! :)

My medications will take a little to get working so I do not have an update on that quite yet.

On a good note though, I finally got an appointment with a neurologist and the University of Utah hospital to see if she has some answers to my stomach pain and what more I can do to help with these POTS symptoms.  This neurologist is named Dr. Cortez, she is from the Mayo Clinic who specializes in dysautonomia so hopefully she is the doctor I have been waiting for!

The weekends are rough because I want to go out and have fun. The next day I pay for having fun by being exhausted and not feeling well. What we like to call a POTS crash. I don't wish it on my worst enemy!

Hope everyone has a great day and a good week!