The Seesaw of My Life - One Week Up...One Week Down...Looking Up Again

In the past few weeks I have had my true ride on the Lupus seesaw.  I had an incredible time at my cousin's wedding in Roxbury, NY. The location was beautiful, seeing my family was incredible, and my body cooperated enough for me to have a wonderful time at all of the events.  I was able to do more then I ever thought possible!  I even danced at the wedding (something I NEVER thought I would be able to do again, given my back fractures), but not only was I able to dance, I was able to do it with little pain!!  I was mindful of my limitations and made sure to listen to my body, and because of this, my parents and I had a fantastic trip.

 

The day after we came home I had an appointment to start the bone-building medication, Forteo. I had researched this medication, and my doctors and I all agreed this was the only medication that seemed to "fit". It is a daily injection, given for only two years.  There are no preservatives that would harm me...so we went ahead with the plan to start the medication in the doctor's office, just in case I had a reaction. I am not a huge fan of sticking myself with a needle, but it is a subcutaneous shot, so the needle is very thin and it came in a pen, so it was a premeasured dose and very easy to handle. I was able to complete the injection into my stomach with no real problem. About thirty minutes after the injection I realized that the site burned, so I lifted my shirt to look at the site, and noticed that there was a VERY red, VERY angry looking red circle that came away from the injection site, along with a red line that went from the site to box in the circle.  I knew this was NOT a good sign. I showed the nurse, who promptly went to get the doctor. She was not pleased with this, and made me stay for another hour to make sure I was not going to have any other reaction. After the hour, the redness had receeded a little, and I was feeling fine, so she let me go home...and instructed me to go to the ER if I felt any worse. If the redness had gone completely and nothing else happened, I was to come back the next day for my next injection. If not, I was to wait a week and we would try it again.

 

 

About three hours later, I looked at the site, and noticed that the redness had almost completely faded. I was relieved because I was having no other symptoms. I figured I would go back the next day for another injection. Oh how wrong I was...because forty-five minutes later it felt like I just got off the tea-cup ride from Disney World, I was SO dizzy. Then the vomitting began...and it would not stop long enough for me to take medication that would help the other symptoms I was beginning to experience: muscle spasms, fainting, and throat spasms. I could barely breath. I knew I had to go to the ER because there was NO way I would be able to take my medication that would open my throat with the way I was vomitting. 

 

 

My parents drove me to Cleveland Clinic, which is where I had the injection that morning, so the records were in the computer about what happened.  The ER doctor was very concerned because this reaction started with a skin reaction and then went systemic...so they gave me the cocktail, despite my protests that they just try zofran and valium first. He said that my choice was epinephrin AND solu-medrol or just solu-medrol along with zofran, benedryl, and valium...I relented and took the one without the epinephrin because of how high my heart rate goes on epi, and how difficult it is to bring it back DOWN.  I was afraid of another stroke if they shot my heart rate up that high.  Well, despite NOT getting the epi, I had a neurologic event that resembled a TIA. About thirty minutes after receiving the medications (which were given ALL at the same time...talk about a whammy), my left side went completely weak and I got very confused.  It was difficult to concentrate on what the doctor was saying, although I am not sure if that was from fear, medication, or the event itself.  The doctor said he was going to intubate me (put a breathing tube in), if I did not improve or if my breathing became more labored. I was extremely frightened at that point.

 

They rushed me into CT and that came back normal. My symptoms of left sided weakness completely resolved within fifteen minutes.  The doctors are not sure what happened...maybe the medications hitting me all at once, maybe a slight TIA, we just do not know.  I see my neurologist on Monday to discuss what happened. 

 

My breathing did not improve until three hours after the medications were given...and four afters the symptoms started.  I was exhausted! All the tests came back normal and all I wanted to do was GO HOME! The ER doctors wanted to keep me overnight for "observation", but I signed myself out...I could not stay there any longer and keep my sanity.  My Mom and I were over-tired and the ER was incredibly crowded.  We made it home and in bed just before midnight.

 

It has taken me about a week to start recovering from that horrific event.  I still am suffering from PTSD (Post Traumatic Stress Disorder), and have flashbacks that wake me up at night and make it difficult for me to go back to sleep.  I am trying to remind myself that I am safe...I am home...I am still here...

 

Just writing about what happened shows that I am on the upswing...even as I have tears in my eyes writing this, I know that it is cathartic. I have to get it out and let it go.  That is the only way to move forward.  I made a promise to myself to stop being treated like a chemistry set.  I cannot move forward when the medications given to me blow me up and push me back.  I will stick with the medications I know work, eat the foods that do not make me ill, and do as much as I am physically able to keep myself strong...and that will make me stronger still. 

 

I am tired of the downs that life brings my way...I am ready for more time UP...this is the seesaw of my life. Some things I have control over, and what I put into my body is one of those things. I also control how I FEEL about what happens.  Of course I will have days when I feel sad, that is normal...but I want more days that are HAPPY. I want to enjoy the little things in life. That I can do...that I WILL do! Lupus, autonomic dysfunction, back fractures...they all change things, but I can still be happy with what I can DO. I have to focus on that...the rest will come with time.