Why You Haven’t See Me Around Here | June Update

WOW…. June was a month for the books. I know I have been pretty MIA around here for the last month, I have been really struggling. It was a struggle just to get the things done that had to be done; much less doing things like blogging. I had all the best intentions to get all these great blogs up for you and really discuss migraine awareness month. But sadly that was just not in the cards. It was a month where it felt like everything that could go wrong, did. 

 I haven’t had a month like that in a LONG time. I feel like if it was possible, it happened. I had bronchitis, and had to postpone my monthly Benlysta treatment due to being sick and being in antibiotics. Then within four days of finishing antibiotics for bronchitis, I developed a sinus infection. Causing me to further prolong my much needed Benlysta treatment. I dealt with multiple migraines, some of which left me in bed for a couple of days each. I also got word following my routine follow up with my Rheumatologist that I had a UTI, and that my kidneys didn’t look great according to the routine UA we did. So I had to start a two-week prednisone course and ANOTHER ANTIBIOTIC!  So now I am almost a month late for my Benlysta and I am feeling it. 

 Due to the fact that I was off my Benlysta and also missed my methotrexate for a few week, due to being on antibiotics and the physician not refilling, I am in a GIANT flare. I’m not talking a small one where I have a little pain and a little fatigue. No! I have had more pain in the last month than I’ve had in a LONG, LONG time. Pain to the point of tears. Pain to the point that I am unable to sleep. I have thrown everything in my arsenal at this pain and gotten little to no relief. And the fatigue, oh my the fatigue. I have had trouble doing much besides laying down. Anything that has had to be done has taken real effort. More effort than I would like to admit, if I am being honest. But it is what it is. 

 Why am I telling you all of this? Well, honestly I’m not sure. I guess mostly because I want to be honest, and I want to be transparent. I want everyone to know that I too struggle on a daily basis, even if I may look okay. Just like almost all of you who will be reading this, I struggle. Every day has a new challenge and a new goal. But I struggle. Many days in June I struggled to find the motivation and energy to get out of bed, to wash my face, or brush my teeth. But if you looked at me you would NEVER see any of that. You would never know that anything was going on. That right there is why I do what I do. I blog and advocate for each and everyone of you who has had to fight to get out of bed. For each of you who has struggled with pain, depression, migraines or any other chronic, invisible condition. I fight so each of you might have to fight a little less, and because I hope that one day we won’t have to fight to be heard.

I should say that I am honestly very lucky compared to others in this community and shouldn't complain. But sometimes a person just needs to vent. Remember It's always okay to be not okay, and it's okay to express your frustrations. 

i don’t know if July will be better, I don’t know if I will have more energy, or less pain. What I do know is that I am committed to each of you and to my advocacy work.  I am committed to making sure that I get good blogs up and find a way to support each one of you. I have some really good things planned and I hope each of you will stick around to see what’s coming! I should say that I am honestly very lucky compared to others in this community and shouldn't complain. But sometimes a person just needs to vent. Remember It's always okay to be not okay, and it's okay to express your frustrations.

 

With Love,

 

Amber