I took a break from writing about my disability. I focused mainly on communities focused about the illness/syndrome. It felt good to answer questions and I still plan on doing that there and both here. If you have a question, ask away. There was one thing missing. My journey wasn't being wrong out. Like, did you know I now have a power port for infusions?
That bad boy is a pain in the butt but it's also a God send because instead of 5 pokes to get my weekly IV infusions I only get one. Here's the thing. It's not really helping. I feel hopeless. I've been on the floor more times in the past week (blacked out) than I have in a year. Something is going wrong and the thing that hurts the worst is the feeling of helplessness. I feel helpless. If I call my doctors that are local they will tell me to call Toledo. Well if I call Toledo then I'm stuck on at least a wait list as to when Dr Grubb is in town and able to help me.
I never hold that against him. Let me just say Dr. Grubb is the hardest working doctor I have ever met. He honestly has done more than enough work on this Earth. He'll always be an angel in my health care. But these constant walls are depressing. If I didn't have children, I'd push for the right to move where I can decide if this life is a life worth suffering through. My husband has seen me fall and not be able to get back up and to see the hurt in his eyes is more than enough. I truly admire the man because not a damn soul has stepped in to help. Not one.
Yes, I have good days and times and as a matter of fact I had one last month where I was able to take not just one but two summer trips. It's like my body knew what was coming. It knew this brick wall was coming.
Where here I stand at the brick wall asking for someone to break it down. Someone to give me a break and say heres a hand let me help you over. The tears are almost dried up. I have a lot of alone time to cry them. I hide them from my husband and kids because this isn't their battle to live. All I ever wanted was a life where my kids could have a normal life and not have a sick mother.
Maybe today I'm just low on spoons but I do promise I will start using this blog more. I also promise that if the day comes and I'm feeling better I'll even use my craft blog again.