"Your illness does not define you. Your strength and courage does."

Hi friends!

First off, can I just say a huge THANK YOU to all the people who visited this blog over the years! We hit over 50,000 reads this month and I am truly thankful that so many people took time out of their busy schedule to learn a little more about this disease. 

When I started writing, I only thought my family and friends would log on to keep up to date with my surgeries and such. Unintentionally; it has grown into a one of the highest read blogs worldwide about Graves Disease. We've even won some awards for this blog along the way! I have met so many amazing friends and I am so grateful to have connected with other patients for support that are battling the same fight as me. 

My charity has been blessed in awareness lately, including being a Celebrity Chef at Delux Burger Bar in Edmonton for the month of January. One dollar from each burger sold went towards The Graves Disease Foundation of Edmonton. We were also featured in Edmonton Woman Magazine!

                

   

I  had the opportunity to speak to 200 up and coming medical students and teach them about Graves Disease. My endocrinologist gave me a call and asked me to put together a half hour presentation on the illness for her classes. It went great and it felt so good to teach so many soon-to-be-doctors more about this little known disease so they can better diagnose their future patients.
 (I even tricked them into giving me a standing ovation!) 

                                 

I recently took a big leap of faith and made the decision to leave my 3^rd job as a columnist at The Edmonton Examiner so that I could devote more time to The Graves Disease Foundation of Edmonton and fully be there for the patients and families who need me. I will have more time to get our pamphlets out into the community, speak to more doctors and pharmacists and plan a fundraiser for 2015.

I am very excited to announce that The High Level Bridge will be lit up pink (like our logo!) on July 28^th to celebrate our one year anniversary of being a registered charity. My family and I will be taking some unique night time family photos as well with the very talented local photographer Darcy Evans.  

We had our first annual general meeting and also our first in person support meeting of the year, where almost 20 people came together to chat about their diagnosis. We now have 45 members in our online support group and we hooked up 2 people with permanent family doctors for their care. We have many other great opportunities waiting, however we still need the government to approve our CRA charitable number so we can give tax receipts to donors. 

                                           

Lastly; I wanted to share that I am humbled and amazed that I was recently nominated for a YWCA Women of Distinction award. One of my board members, Debra Ward, took the time to contact my friends and family members for letters of support. I am so thankful to be included in this incredible group of women. 

                    

While we have had lot of success with the charity lately; on a personal level, I’m still very much struggling. 

After some steady months on track, I have completely relapsed.

Since January 1st 2015, I've had 11 doctors appointments, 8 blood tests, 1 naturopath appointment, 2 X-rays, 3 heart tests and one day in the hospital. 

In December of 2014, I noticed that I was becoming sicker and really feeling more symptoms of this illness so I booked myself a doctor’s appointment. He sent me for a blood test and it of course came back abnormal. 

Because of the wonky blood test, he adjusted my synthroid dose (daily thyroid pill) and gave me another blood requisition to check the level the next month. 

Of course, the following test to check my hormone and thyroid levels both came back abnormal again. 

From December to this month (April), I have been floating in between completely hyperthyroid and extremely hypothyroid. I have not had a normal or healthy blood level for months.

Needless to say, I am struggling with a racing heart, shakiness, weakness, frequent bathroom breaks, feeling very hot or cold, dry hair + skin +nails, weight gain and extreme fatigue. I am a walking zombie. Sleep doesn't refresh me, if I get any at all. 

I want to work out to combat the weight gain but I simply just cannot muster the energy at the end of the day to do so.  I am beat. 

For those not familiar with the whole plethora of symptoms associated with thyroid disorders, just take a peek at the chart below.  (Click to enlarge)

                                     

I was referred to an endocrinologist in January but it is a three month wait to get seen, so I continue to sit in agony day after day. I've become really good at keeping a positive attitude and trying to assure everyone that “I’m fine” but it just simply isn't the case lately. 

Here is just some of my levels over the years...
(Check out all those 'highs' (H) and 'lows' (L) that shouldn't be on there!)

                                   

I received a call back this week that my newest blood test came back abnormal again and I am not even sure I will attend the appointment to learn the numbers its sitting at currently because the doctor simply cannot find a solution for me anyways regardless.  He cannot change or adjust my medication anymore and no dose seems to be the correct one; so even why go? 

                               

I am sad. I am frustrated.

I have tried every synthroid dose from 100mg to 175mg and all are either too high or too low. 

                                                

My doctor has tried every possible dose to try and get me at a safe level and it just isn't happening. He doesn't know how to help me anymore. So month after month, I sit and wait. 

I am exhausted and I’m trying to carry on with nothing left to give.

It is so scary when things don't work properly in your body anymore. It is dangerous to sit at such extreme levels for this length of time. I do not want to be sitting in hospital beds again. 

A few weeks ago I went for a barium test to try and figure out why my stomach isn't absorbing the medication properly anymore. It was incredibly stressful and took three hours longer than it should have because my body just wasn't working properly. I had to drink four more glasses than the average person to try and get a proper reading. You have to walk up and down the hallways throughout the whole test. I had 12,000 steps on my counter by the time I got to leave!

                                 

What I’m struggling with is... What do you do when the medication that is supposed to help you stops working? Where do you turn? I am clinging onto hope that my endocrinologist will be able to give me some relief when I see her next week, finally. 

Until then, I wait. 

                              

I wish I had a better update for those who have followed along with my journey. I like to provide hope to other patients, rather than remind them about all the potential  up's and down's this disease puts a person through.

 Sadly, this is the reality of the illness though.

But as they say, it always gets worse before it gets better..right? 

As always, I will continue to fight and hold out hope that one day I will find inner peace living
with Graves Disease. 

                                       

The universe has been sending me little signs here and there that I am on the right path and I will continue to trust that I will land exactly where I need to be by the end. 

Thank you to my friends and family for all the love and support I have been receiving lately. It is so very appreciated on the tough days. 

With gratitude from;

Rayanne and my silly pup, Lola!
(Trying out the blonde again for 2015!)