Disability Warriors Unite

So I don't seem to have a lot of things to say lately but one thing I do want to share is how grateful I am for the people in my life and for my faith. I have been so incredibly sick these last 4 months. Please continue to pray for us. The doctors just want me home sitting doing nothing but that won't work with bills coming in and constant copay's. I often have to decide if I can afford medicine or doctor visits that I need. I get help from state Assistance which I appreciate and is only because we live in a state that uses the EAP money to really try and help people. I have spoken to people going through similar things lately and gotten the most amazing support. Misery truly loves company 😹 But some days I am weary and my family really has been through too much the last 4 years. It doesn't seem fair but my faith has grown immensely during this trial and people have shown up for us and it has not gone unnoticed. It has also not gone unnoticed that some people have not shown up. That's ok too. I forgive you. We have all been there and I pray for even those who have tried their best to be a good person and checked in on us and just didn't know all that is going on so they didn't try. Or didn't know what to say. I have been there too. I am at the point physically mentally and emotionally to turn it all over to God and just rest for a day (which I still have a hard time with) but wanted to wish everyone a good holiday (I know it's late but we still have the Jewish and Muslim celebrations) and to let everyone know that we covet your prayers, food, rides, haircuts. We have been showered with love. We are so very grateful. I have an appt with a good doctor tomorrow that I pray helps me. I still have hope but I have no quality of life right now and it's not fun learning how to live as a disabled person. But keep on keeping on 🙏🩷💯🥰🍀

Todays fun...bradycardia. Anyone have experience with that? They wanted me to have a pacemaker for the PoTs about 10 years back. Ugh. I am so over this roller coaster ride. Had good care at Jefferson WT this time though. Had to throw my cardiologists name around and our moms doc evaluated my EKG before I left so that was neat. It is another post viral thing. I was dehydrated again. 3x to the ER in 3 months.

God is still in the miracle business everyone!! Praising Him today on the sabbath. I believe 🙏 as lent continues God continues to take the seeds I've planted and grow them into more miraculous things than I could ever expect or want. I'm so grateful this morning I woke up sobbing happy tears to an email that I didn't think would come but surprised me on a cold damp late winter morning. I have never woken up so relieved.

I have been so sick. I haven't been talking about it but it has been the biggest mountain I have overcome so far. I didn't think I had it in me to keep going some days. But my faith the size of a mustard seed kept me going and I did it!! I am starting to see the journey and not just the destination. This life isn't really about us it's about serving others and finding joy. Thank you to everyone that pushed me through 🙏🩷🩵 Justin and Jake really more than anyone were at the front and center of my mind each second at my worst, along with mom while she was alive. She is an amazing guardian angel 😇

Well..sort of good news, finally got an infectious disease appt for next week. Chasing that for 5 years. Thank God for Cooper Hospital. I am doing a bit better each day. Watching my spoons. Love to all 🙏❤️‍🩹🙌🏼💙😇🫀

The ERs are getting full here in NJ and I just went Thurs. No care from the hospital. No advocate. No phone. No charger. What would you do? How can you manage stress and mindfulness in a place like that? Full hospital all the way down to the hallways and waiting room. We are headed for a rough time. It's time to try and mitigate before we have another pandemic with RSV. It almost ended my amazing life. Flu can do it too. It's not just c19. If you are sick, stay home. It's really that simple. Do self care until you are burnt out on self care. Love yourself. You only have one you. Follow me for more tips 💜💙💚🙏