Sarcoidwhatt??

I'd like to take some time to share my story and what I've been through in hopes to help others understand what can't always be seen.

Over the past few months I've been fighting a personal battle, a war within my body.

In September of 2016 I came down with a typical chest cold, a cough that I couldn't shake.

After a while it became very painful not only to cough but to laugh or yawn my lungs were in pain constantly.

I had no energy. 

After seeing my doctor multiple times between September and December I finally convince her this wasn't just a cough and I needed more tests.  

I was told "oh it's just a cough but fine go for a X-ray." 

Not even 12 hrs after the X-ray I received a call from my doctor saying:

"Your X-ray shows pneumonia in the upper left quadrant of your lung, please start this antibiotic right away and go for a follow up X-ray in February."

Finally an answer and solution, take some meds and I'll feel back to normal soon. 

If only it was that simple.

Course 1 amoxicillin 14 days

Still felt terrible half way through so I got a second opinion at a walk in. This doctor explained that I needed a stronger antibiotic.

Course 2 azithromycin 5 days

I felt a little bit better after this course, had some energy and it was almost Christmas so lots of holiday parties.

Still had pain in my chest but figured it was just irritated from being sick for so long. Tried to take it easy celebrating while listening to my body, slowing down when it told me to.

Started to convince myself that the pain would go away with time and continued on with my daily activities ignoring the pain and exhaustion.

December 23rd I was rushing to work in the morning after a night of freezing rain. One step down the concrete steps outside my door and I hit ice. My feet flew out from under me before I had time to react I landed ribs first on the concrete Icy steps. 

I managed to work the morning sitting at a desk and went straight to urgent care after work. The doctor gave me anti inflammatory meds and sent me for an X-ray.

4 hours after my X-ray the doctor from urgent care called me himself and explained nothing was broken just deep bruises but my pneumonia had worsened since my first X-ray. (After two rounds of antibiotics) 

Course 3 moxifloxacin 10 days.

This was my least favourite of the medications as I had a ton of side effects. (Recently these meds have had new warnings issued by health Canada)

Christmas Day I was having intense pain through my chest, shortness of breath and numbness in my arms. After speaking with a nurse on health care connect I took her advice and went to emerge. 

Another X-ray was taken showing no changes, an ultrasound was done and the doctor was discussing possible perforation of my lung.

The doctors said it's definitely pneumonia, the meds I'm on are the best for me and the sensations in my arms are because my body is exhausted from being sick for so long.

I was told to go home rest and continue taking my meds and I should start feeling better in a few days. 

Oh how I wish that was the truth, at this point I felt hopeless. I feel like a semi truck ran me over, but it's just in my head. 

I finished my 3rd course and still felt unwell. 

I went back to my doctor which said "oh you probably just have a new cold."

She suggested I take another round of amoxicillin just to be sure and told me I'd be fine.

She still wanted me to have a follow up X-ray in February.

I gave up, I told myself I'm obviously crazy this pain isn't real. The antibiotics would have gotten what infection I had by now.

One last try I decided to see a wonderful doctor that I have the honour of working with, I explained my story and hoped that maybe I wasn't crazy.

He became curious and started running some tests.

We sent out some requests for copies of my X-rays to be sent from my family doctor to the doctor I work with.

Finally February came and I could go for that follow up X-ray, I specifically asked the X-ray lab to send a copy to the doctor I work with.

The next day we received the results at work, I had an appointment with the doctor I work with on Wednesday.

He explained that nothing has changed since the first X-ray in December, it's time to investigate further. 

I was scheduled for a urgent CT with contrast the following Thursday.

Friday I received a fax at work from my family doctor with some of my medical records stating that she will no longer be taking my case and that the doctor I work with (a walk in physician) is my new family doctor.

Walk in doctors are not family doctors and are limited to the care they can provide.

I was a mix of emotions at this, my family doctor just dumped me because I got help somewhere else.

Someone else was actually listening to me and now I have no family doctor and something is actually wrong with me.

I was scared because at this point we were pretty sure I didn't have pneumonia.

I was angry because my family doctor didn't even give me a call to tell me the X-ray came back abnormal or that she wasn't going to be taking care of me anymore.

I called her office and asked why, I was told I can only have one family doctor and I am not welcome at her practice.

I explained that the doctor that was helping me was not a family doctor and that I was registered only to her however she wasn't helping when I needed it.

The doctor asked to have a meeting with me to discuss whether she will continue my care.

My fiancé and I came prepared to this meeting with a print out of the laws and regulations she legally has to follow to end a relationship with a patient.

We specifically highlighted the laws she was breaking and had a yelling match.

After a heated argument the conversation ended with her saying "I'll continue to provide you care but only because I have to."

Thanks Doc for absolutely nothing.

I only got sicker at this point, the stress was taking over.

The pain I was experiencing was debilitating.

The lack of energy and the worry.

The thought that something is wrong but I don't know what was exhausting.

 The unknown was tearing me apart mentally while my body was dragging me down physically.

After I had my ct scan we had a clearer picture. Still foggy but we have a better idea of what's been going on.

My CT scan shows enlarged lymph nodes throughout my body. Specifically my lungs, neck, shoulders. Nodules on my spleen and granulomas throughout my lungs. 

The Radiologist who interpreted my CT stated in the report that all findings look like sarcoidosis and further testing was recommended.

Sarcoidosis?!?!

Isn't that the fall back disease that everyone on House MD has? 

This has always be a joke in my house hold, "oh I bet it's sarcoidosis, it's always sarcoidosis!"

The doctor I work with sat down with me and discussed these findings.

He explained everything in detail to me but also explained that we still have a lot of testing to do before we can be sure.

Before I can start treatments we must rule out all other possibilities. 

The doctor told me to go home and research, educate myself and try to connect the dots.

He explained that he needs me to look at the symptoms and see if this makes sense while I wait for the appointment with the specialist.

I was referred to a Respirologost, he is very experienced in treatment and managing sarcoidosis.

He took one look at the CT and said it looks like you have sarcoidosis.

He has to do some further tests and a lymph node biopsy to be sure before starting treatment.

I am currently waiting to have the biopsy, after lots of research I agree with the possible diagnosis. It seems like this is something I've had for a while, its just more active now.

I feel relieved that there is hope, I can be treated and one day I will feel better. 

So for now I manage the pain, the exhaustion and try to keep myself busy while not wearing myself out.

What you don't see is the internal battle, yes I've vented to some about my symptoms but it's so much more than that.

You don't see that I'm constantly in pain not only in my lungs but my entire lymphatic system.

My joints ache, my neck feels like I slept wrong all the time.

I have intermittent pain in my abdomen.

I keep losing my voice because I have lymph nodes pressing on my vocal cords, the simple task of swallowing saliva hurts.

I experience hot and cold flashes.

Every time I laugh I have shooting pains through my chest.

When I cough or yawn I feel like my heart is being squeezed.

I spend all day dragging my feet because I have no energy.

I experience dizzy spells throughout the day because the pain is too intense.

What you don't see is that I'm up at all hours of the night crying because the pain makes it difficult to get comfortable enough to sleep.

But beside the pain this ordeal has taken a huge toll on me mentally.

I spent so long thinking I was crazy, trying to suppress the symptoms.

Trying to convince myself it's all in my head.

I've been through a roller coaster of emotions.

Now I'm at a point where I'm annoyed with myself trying to explain what I'm experiencing.

Depression and anxiety has be a large part of these emotions.

I feel useless most days and feel like I'm just a nuisance to the world.
When trying to explain what I am going through it seems that everyone doubts me or questions my sanity. 
I hear things like "funny that these symptoms just started now that you're being seen!", or "why has it suddenly progressed?".  
The truth is I have no idea how to answer these. The symptoms with this chronic illness can come and go suddenly, they can also stick around until treated. Some of these symptoms I have had for a while and they just seemed to be my normal, some are new. I have good days and bad days. 
When I hear these questions I can't help but take it personally, I don't have a say in when my voice goes horse or when my pain is so bad it makes me dizzy.  
Just because this illness isn't visible, doesn't mean I'm not struggling, a good coat of foundation and a fake smile goes a long way.
Part of suffering with anxiety and depression means that your always worried about what other people think, always feel like when you walk out of a room everyone starts talking about you. 
I've been trying not to take things personally my entire life, and I will continue to fight this anxiety. 

Now I feel liberated that I might have an answer.

I have hope that this can be treated and there is a good chance of my life returning to normal.

I can see the light at the end of this very dark tunnel, it's there but it's still a ways away.

I have been very fortunate with the care that surrounds me. The Family and friends have supported me when I needed it most.

I hope that I can look back at this as a rough patch in the future and use it to motivate me to always put my health first.

Thank you for all your continued support, I am lucky to have all of you in my life.

Thank you for reading.

Deanna