Down Days


I have had a few good days then a lot of bad days recently. Yesterday I spent pretty much in bed or on the couch. I just had no energy, and the pain was hell. I saw the Rheumatologist on Wednesday, she is now checking for Sjogren’s Syndrome. Joyous..Another possibility to add to the list. She was great, and put me at ease. She was very thorough and explained as much as she could to me, and answered all my questions. I even broke down with her.. “Is this my life now?” I asked her. She held my hand and said “Sweetie, it could be, it could get worse, could get better. Just remember your amazing strength and beautiful son. Never give up.” I couldn’t help but cry. How many doctors would help a patient like that? How many would take the time to truly care???? I felt honored to have her as my doctor. The next day was spent with the Electrophysiologist in regards to my pacemaker. He confirmed my biggest fears… That the previous surgeries were not necessary in any way, and I’m not completely dependent on my pacemaker. He referred me to a specialist. One that is an expert in POTS and Dysautonomia. He put me at ease, and helped me to not be so scared. It just means more traveling, for more doctors. 

Yesterday I woke up in an awful mood. I was jittery and just on edge. I just couldn’t shake the feeling. I was so tired, I wanted to just sleep the day away. I pretty much did. Between that and the pain, I didn’t want to do anything. Though I always push myself, i’m learning when to push and when to back down! I’ve still not accepted this. Accepted that I now have limitations, and I can’t do everything I used to. That I am, as a person, changing. I’m scared of losing who I am, the woman I’ve always been. I don’t want to do that. I’m terrified of it. I’m so scared of accepting things that i’m just avoiding, ignoring. I know it’s wrong of me to do. I know in time, I will finally accept things, but right now, I just can’t, I refuse.  I want love, a partner, someone special. What if I never find that?? I’m scared of that. I’m scared of being alone through this.

It’s a learning process. I’m still new to all of this, and I will continue to search for answers and continue to do what I can to keep my independence. I will not let this control me. I will not let it beat me down, I will not let it take the woman I am. I’m learning.. The woman i will become, she will still be me..a stronger me, a fighter. That’s what I am.. That’s what i’ll do. Fight, Remain Strong, and through it all, never lose faith in myself, God and my family.


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