Sick, Iron, & School

My life has been a constant battle of school, fighting a cold, and doing everything the doctor wants me too.  I recently had an iron transfusion for my low iron levels.  I had two different infusions, one week apart.  Each infusion took about 3 hours. After the first infusion I had a lot of stomach pain, still felt tired, headache pain, and got dizziness every once in a while.  After the second infusion I felt a lot better than the first, still a tad bit of stomach pain but not nearly as bad as the first time.  Since the transfusion I have felt much better, not quite an increase in energy but better in general.

The day before the iron infusion I got a lovely cold that threw me for a loop.  Luckily it only lasted for a week but the week I did have it I had 3 MIDTERMS! Yikes.  Just my luck, I needed to study and take my tests not be sick and have a head cold.  Even though I felt like crap, I still managed to do well on all 3 exams.  Good thing I did well because I am applying to nursing school in January.  That's another thing, I have been working on my application for nursing school.  There is only 3 weeks left of the semester and I am looking at finishing strong.

On a lighter note, I was diagnosed with Mast Cell Activation, this means my body like to flare up and pretend I am allergic to th
ings when I really am not.  This requires me to take Benedryl which causes my to go to sleep... it is a vicious cycle.  For this, Dr. Coleby put me on two different medications that are antihistamines that will suppress these cells to not make them go crazy.  This changed just happened on Thursday, but for once I was able to wear compression stockings without breaking out in hives and a rash! Woo!! Also, Dr. Coleby changed my medications around and it has been working. I am finally starting to feel better, I have a bad day here and there, but never weeks on end anymore.

Tomorrow, Wednesday, I am off to Winnemucca to join my family for Thanksgiving and enjoy a weekend away from the city (Don't worry I still have homework to do)!
This year for Thanksgiving, I am thankful for my family and friends that have stuck by me through ever step of this journey and never once gave up on me.
I am thankful for my mom and dad for believing in me and giving me positive encouragement on a daily basis.
I am thankful for my boyfriend and best friend for always being by my side and talking with me while I am wide awake during the night.
Lastly, I am thankful for Dr. Coleby he has given me my life back and has forced my to exercise and only get 8 hours of sleep each night, he hasn't given up on all my complaints and side effects of medications. He always has a different way to approach a certain situation.

Once again, I am thankful for all of you that support me each and everyday.

Happy Thanksgiving!

Make Noise For Turquoise

Hello again!  Dysautonomia Awareness Month is coming to an end which calls for a much needed post.  I have been overly busy with school, life, and homework on a daily basis while juggling doctors appointments and testing.  My latest doctor's appointment with Dr. Coleby was this past Thursday. My heart rate is finally under control again! YAY! However, with the increasing dose of  beta blocker it has caused me to get severe headaches, blood pooling in my legs, and more fatigue.  He is switching around my meds and hopefully this will be the cure for me this time! He also did some blood work which showed my iron levels are particularly low. In that case, I am going to be receiving an Iron infusion within the next few days (waiting on insurance to approve).  The thought of putting artificial iron in my blood is a scary thought for me.  But if it increases my energy level I am more than happy to give it a try.  It will be 4 weeks ago on Friday since I got surgery to get a benign cyst removed.  Here is a picture from before the surgery!

Help raise awareness of POTS, a common form of dysautonomia!  Increased awareness means reduced diagnostic delays, and better healthcare for patients after they are diagnosed. Learn more about POTS: www.dysautonomiainternational.org/POTS    It took me over 7 years to get diagnosed, no one should have to wait that long. 

YOU CAN MAKE A DIFFERENCE!

You can make a different in the lives of POTS patients today, by contributing to the POTS Research Fund:
www.dysautonomiainternational.org/POTS-Fund.

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!

... And The Treatment Begins

Today, I had my first "POTS" appointment with a local doctor who specializes in POTS. So lucky to find a doctor that I do not have to explain Postural Orthostatic Tachycardia too. Aren't they doctors? Shouldn't they be able to figure it out!?

Anyway, the doctor talked to me about POTS and the treatment for over an hour. Not many doctors take that amount of interest in a any topic.  The doctor put me on a beta blocker, told me to get a Fitbit to monitor my heart rate, do recumbent exercises for 30 minutes a day/ 7 days a week, and drink 4 Liters of electrolyte filled fluids a day.  WOW! That is a lot of information. I am starting all of those things tomorrow and see my doctor in 2 weeks for a follow up!

ANOTHER DIAGNOSIS:

On another note, I was diagnosed with Ehlers-Danlos Syndrome (EDS), which is hyper mobility.  They believe hyper mobility and Mono were the cause of my POTS.  Also, many people who have POTS grow out of it by the age of 21. However, people with EDS and POTS more often do not grow out of it.  With medications, exercise, and treatment I do believe my symptoms will get better. The POTS may not ever go away but they will disappear.

Here's some information on EDS:
http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656

The long road to a diagnosis!

Hey everyone!  My first post is going to be about my experience with getting diagnosed with POTS.
http://www.medicinenet.com/pot_syndrome/article.htm

First of all, when I was 11 years old I was diagnosed with Mononucleosis and took 3 weeks off of school! Luckily it was only 6th grade, nothing to drastic.  That diagnosis changed my life forever.  Ever since I got mono I have been fatigued, tired, exhausted, and suffered from headaches.  9 years later I was diagnosed with POTS.

Let's back up a few years though.  After coming to college in 2013 I started getting excruciating stomach pain with headaches and fatigue. I visited a GI doctor and got a full work up. When I say full I mean it. Everything came back normal (POTS patients know what that's like). I then had a laparoscopic surgery and was diagnosed with endometriosis! I was so happy to have a diagnosis that would cure all my stomach pain in just a short 6 months of hormone therapy.

Unfortunately, that was not the full reason for the pain I was having. I then went to a different GI doctor and got a lovely FULL workup again (colonoscopy, endoscopy, etc...). Everything once again came back normal. The GI doctor referred me to the Mayo Clinic in Arizona. It was so nerve racking to be at such a prestigious medical facility.  Quickly after being at the Mayo Clinic I was no longer nervous. Everyone I encountered there was amazing and nice.  I once again did even more GI work up at the mayo clinic. I won't go into details because they aren't very nice words :)  No diagnoses came out of that week long of testing except Gastroparesis (a symptom of POTS) but I had another appointment down there a month later, an autonomic reflex test.

The autonomic reflex test consisted of a sweat test, breathing tests, and a tilt table test.  Like most POTS patients, I lost consciousness during the tilt table test from my blood pressure dropping too low and my heart rate being too high. That was one of the scariest moments of my life, I have never really passed out from standing before. Dizziness when standing was my middle name but never passing out.  5 days after passing out I was diagnosed with POT syndrome which has been the beginning of a very long road. I was then referred to a neurologist and am waiting for the appointment! Here comes a long road of optimistic treatment....