Smiling until it becomes real

 I hope most of my readers never half to fight like I have to get a diagnosis. When you don’t have something straight forward the things medical professionals say can be so discouraging and defeating.

Before starting I want to define some medical terms I will be using.

TPN= is total nutrition through a central line that goes right above your heart. This method of feeding does not use the gi tract and can have lots of bad side effects.

PICC= a line that enters in your arm and ends right above your heart. It lasts long than an IV and can be used to infuse in and out of the hospital.

Addison’s Disease= a very rare disease where your Andrea always glands are damaged and stop making the stress hormone called cortisol. You can die without cortisol and if you are hurt your body needs more cortisol so people with this have to take replacement steroids to allow the body to function properly.

Some of the worst phrases I heard were:

• Your test results are normal,

• You look good. 

• Are you sure you are not just sad?  

•  Just try harder

•  We don’t need to test you for that because it’s rare

•  Are you sure you don’t drink?

•  Are you unhappy with your life?

•  That’s very unusual....

•  I know you are allergic, let’s try and see how bad the reaction is....

 

The care I got was vastly different based on which er I ended up in. This past week I was questioned over and over about drinking because tpn raised my liver and pancreas enzymes. The hospital didn’t believe me that I’d only had one drink all year despite what I told them because normally heavy drinking is what raises those values. UCI on the other hand knew right away I was having malabsorption from the tpn and just gave me a feeding tube to see if that will help me with the malabsorption.  

I was diagnosed with Addison’s Disease last month which seems to explain all my symptoms that before I was told don’t make sense. Rapid weight loss ( 25 pounds in 5 weeks) some darkening skin, nauseas, stomach pain, heavy limbs, low blood pressure, low sugar, fainting, headaches, chest pain, tachycardia, orthostatic intolerance, gastroparises, and weakness. I can do into more details on the medical stuff in another post, I want to share what it feels like to go from a health thirty something to not being able to stand in the shower.

At first I was in denial about how sick I truly was. I was convinced I would snap back any minute. I have always been an independent person so it was hard to ask for help. Thankfully I had my husband to help with showering and walking me to the bathroom on super dizzy days. He helped me get dressed and with my IV infusions. Pushed me around in a wheel chair to get to doctors. To go from and music and dance teacher to a wheelchair and not able to shower myself was beyond hard. I felt like a failure and at times I felt like God turned his back on our family. 

Every time I thought it couldn’t get worse something else would happen. I felt and still sometimes feel like a hot mess and failure. Simple things like walking and eating shouldn’t be a struggle for a 34 year old. Yet somehow I would keep making it throughout the day. Those times make me think of the footprints poem.

I told the doctors to do what was needed to get me home however I was caught off guard by the placement of the nj tube and my reaction to my appearance. First it didn’t want to go where it was supposed to so it was painful and took hours before they confirmed placement and could remove the guide wire. Throughout the placement tears just streamed through my eyes from the pain, I am not a cried but I could control the tears. Then looking at myself I felt so embarrassed. Like my body’s failure is on display for all to see in yet another way. My mask wouldn’t fit either so that was a fun puzzle since in the hospital you have to keep the mask on. After some time to reflect I feel like I can share this photo. I am going to smile and try to be positive as long as I can. Most of the time just smiling can help to pull me out of a dark place, kinda like fake it until you make it. That’s all for now, thank you for reading.