Looking back on 2015

2015 was the most miserable year since 1995. I was confined to a bed for over 1/4 of the year.  I now look back and am amazed by my strength, passion, and will to get better and continue fighting. I would not have been able to do it without my parents, my family, and all of my friends. I thank each and everyone of you that has text me, called me, facebooked me, and everything in between.  The thought of someone looking over me is very promising, it gives me something to strive for on a daily basis.
2015 was the year I got diagnosed with POTS.  It will be a year that I remember for the remainder of my life. It was one of the most stressful, sickening, and miserable years I have had in my life. Even though it was terrible I would not change it, because POTS is me. By having POTS it has made me become a stronger and better person than I was in 2014.  I have younger girls with POTS that are looking up to me and realizing all of their potential even though they have an invisible illness. I have defeated the odds of this deliberating illness and continued to go to school to get my college degree. I have to work 100 times harder than I had in the past but when I get that piece of paper to prove my diligence and accomplishment it will all become apparent that it was worth it. I did not let POTS define me and take over my life.
One of the biggest lessons I have learned in 2015 is, if you let an illness define you it will take over you.  I know this because I learned the hard way. I let POTS and my bed take over my life. I let it define me, be me, and control me. Until I found out how to overcome the chronic illness in my head I was getting beaten by POTS. For all of you that know me, you know I do not like to lose or get beat.  It took a lot of will power and commitment but I overcame the definition of "Tori is POTS". I now do not let POTS define me, tell me what to do, control me, or take over my life. I push through it, I do what my doctor says and I have been feeling better. (Imagine that.. I listened to my doctor and I now feel better). Once again, I would not have been able to change my thinking of POTS without the help of my mom, dad, and a few of my closest friends. They constantly kept me on my toes and would not let me lay in bed for days at a time when I desperately wanted too. To you guys... I thank you from the bottom of my heart.

Despite beating the definition of "Tori is POTS", 2015 did not end how I had planned.  The day after Christmas, while dancing I landed wrong on my knee.  Immediately after I was in excruciating pain and began to get an internal bleed in it due to the mild hemophilia. The next day my knee was twice the size and I knew I needed to see a doctor. Long story short, I was put on crutches, given a knee brace, and was told to get an MRI as soon as possible.  Luckily the MRI showed I did not need to get surgery and only needed to do Physical Therapy to strengthen the muscle to ensure this doesn't happened again. I started PT today and am beginning the regimen to strengthen the knee and quad muscles to be able to bend my knee again and make sure my knee cap doesn't dislocate again.  To anyone that has knee problems, I am so sorry and I have all they sympathy in the world for you. I did not realize how miserable knee pain is.

As for 2016, I am on the road to recovery from the knee injury. I am still being treated by Dr. Coleby for the POTS and Hypermobility.  I continue to get sick and catch every virus that comes within 20 feet of me but I am happy! This is the year I begin applying to nursing schools and continue my schooling to become a Nurse and help people with POTS just like the amazing people that help me.

Here are two songs that helped me get through 2015 and remind myself that POTS does not define me.

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!