Lupus and Me

August 2014 my head began to pound, the dizziness took control and in the woods, while hiking with my 8-year-old daughter I passed out. I was down and out alone in the woods, while she ran ahead to get help, we were just in our backyard. I came to, after what we could only assume would have been a seizure. I made it back to my house, though dazed and in severe pain with my heart pounding in my chest. I found my way to the hospital, my heart rate was in the high 100’s and my oxygen sats was low. I spent the night at there to stay under observations that night, they found fluid around my heart, a common condition with Lupus called pleurisy.

With this news sought out a cardiologist, with his help we tested my heart to make sure there was no other issues or permanent damage. My heart did get a clear beat other than the faster heart rate due to the swelling of the lining of my chest. Lupus made breathing hard and a struggle from having to take deeper breaths. These breaths felt like breathing with bruised ribs. It was painful, and even though it is now under control it still has the moments of swelling.

 

I would continue to try and work while all this was going on. One night I was on my way home from work and at this time I worked around 45 minutes North of my home in another town. I had been on my way home, I was running late and then I was found in my driveway covered in urine and blacked out. I had a seizure, yet still had found my way home without having a wreck. I still to this day only have the memory of being told about this timeline event. I was soon tested and was found to have frontal lobe seizures.

Lupus has started it’s attack by targeting my nervous system. This caused me to have frequent seizures, some days I would have as many as six (6) seizures a day. This would also cause neuropathy severe enough it would not regulate the blood flow properly in my body. I was told I was told not to walk long distance and lifting anything above twenty (20)  pounds was a no due to the nerve damage. To this day the nerve damage continues to progress and cause numbness throughout my body. Some areas include my feet, face, hands, and arms are all affected by numbness all due to lupus killing off my nerves.

 

I have had many other issues that have come from lupus, and seizures along with the nerve damage are the annoying one compared to the joint swelling. The joint pain I have gotten from Lupus it is hard to explain. One explanation is to say imagine breaking your bones and having someone beat you with a baseball bat, that would come close to the pain of a joint flair. I am actually writing this post while spending a week in the hospital. I have been in this hospital room for a flair up, my legs down to the tip of each of my toes are swollen.

Joint swelling one of the most common issues with Lupus as it is a rheumatic condition. Lupus is an inflammatory disease caused when the immune system attacks its own tissues. Many times it is called SLE or systemic lupus erythematosus, and there is not one single test that can say if a person has lupus or not. As it came to myself I was having joint swelling as young as the age of fifteen (15) years old. My feet to my shoulders was targeted by the cruel mistress of an illness. The condition has cost me a lot, some even before I knew it was striking me.

 

I have had some bad flare-ups and some not so bad flare ups. I have had times when I have not wanted to get out of bed due to the extreme fatigue and how cold I felt due to the anemia. I have had emotional moments when I have snapped at my wife from the prednisone or just plain mood changes. I have spent nights praying and crying that all this can remove from me. I also then realize how this is a part of me, my testimony and how suffering can be growth. As I lay in the hospital during this flare up, the worst I can say I have had. I reflect on the Rheumatologist who told me that men cannot have lupus and the other one that told me I was nothing more than a weak individual. I think about the hospital in the town I live in that wanted to label me a drug seeker due to the pain I was in.

 

When you are dealing with lupus you will feel like you are suffering in silence because no matter what your family says they do not understand. You need to connect with others with lupus, to speak with them about the experience and help lift each other. Lupus can break you just as much emotionally as it can physically. Yes, it is a lifelong struggle through with treatment one can live a normal life. I was given a bad hand of Rheumatologist who was unhelpful. If it was not for my neurologist my life possibly could have been a lot worse.


Please everyone just know that lupus is not a celebrity face, it is not just Selena Gomez and Nick Cannon. Lupus is your friends, Family and the person you just passed. Please throw up your L’s and support Lupus awareness and research.

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