2 steps forward, 3 steps back

Its hard to keep writing when it feels like everything is just happening the same over and over. We found a new IV pharmacy and talked to them, had Bellas doctor send her orders, and just today we found out that theu wont take Bella. theu determined her care innappropriate for home infusion… all the doctor ordered was IV saline and supplies… We really dont know what to do anymore. We consistently reach out for help, and are consistently told no one knows how to help. We’re even trying to get her normal pharmacist to help call an IV pharmacy or two with us to try and work something else out.

We are at the end of everything, have the diagnosis, have the treatnent plan, and have the meds ordered… We just can’t find a pharmacy to give Bella her orders. Even the new one we found denied her, and we don’t know why. So close, but so far away has never meant more in life than right now.

No one wants to take resposibility for her care, and keep trying to push it off on her specialists, who either don’t agree or can’t help due to policy. Which honestly doesn’t even matter if we can’t get the treatment anyways.

We’re on our own for it all. We have no pull, and don’t know what we’re doing, but that’s more or less what we’ve been doing for most of this. Just now with no support whatso ever. It’s not going well, and we don’t know where to turn or what to do next. So We just keep begging and pleading for help from doctors, begging pharmacies to take her, pleading for help and turned away even at the ER when it’s too much for us to handle at home, and the pain has has been so severe so long that we have to go in… Just to be told again they don’t know, and they can’t help…

Her Lyme doctor thinks Savayah and I may have it too. We’re waiting on results to come back to be sure, but even if the results are positive I don’t know how we’ll move forward. I’m just praying they’re negative, and I’m just tired because of how much is going on and how little I’m able to sleep, and not a slowly growing problem that we won’t survive once i get too bad to keep it all up.

We’re trying hard, every single day. Everything we can think of, anything we’re told to do. Tested for everything under the sun. Tried multiple incorrect treatments that only made things worse, and now with everything finally diagnosed and plans made for treatment, we’re at a standstill.

Every single day, Bella is in a pain thats indescribable. Every day she wishes she could go to the ER because she feels like she’s going to die. Every single day, we’re let down by the medical treatment and entire system.

I promise you we’re doing everything in our power to get her better, but every single day she’s unable to get out of bed. Every single day she’s unable to stop the pain. Every single day she musters up every last ounce of energy she has to research and reach out for help. It’s a miserable life, and we’re trying our damndest to get past it all.

We’re running out of hope. I’m sorry it’s not a great post today, if any of them could be considered as such. But thank you for reading. Please share, hopefully someone can help.



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