#azvalleyfever

Ok so heres what we know. Sammi's CRMO has spread across her mandible and lower legs/feet. The edema that had her in the hospital was caused by a reaction to one of her blood pressure medications. We have changed her to a new one that includes a diuretic. For now she wears compression socks til the swelling is controlled. I will be filing a complaint with the hospital this next week. The hospital failed to consult with a nephrologist and did not perform standard tests to assess her kidney issues. They also refused to address her pain with more than Tylenol and as someone with severe edema on top of chronic pain, this is unacceptable. Unfortunately, there isn't a lot of choices in the valley for pediatric care. Most hospitals only treat pediatric cases in the emergency room and do not have a pediatric ward within the hospital. This is a growing frustration for our family because she isnt 7 she is the size of an adult and we just so not have the financial means to go outside of the state to seek treatment. So for now I have do just ask for help I have a new pile of bills for labs that insurance has deemed "experimental" and will not cover. We spend 4 days a week in various doctor and physical therapy appointments. I have not seen a doctor myself in 2 years (I am diabetic) and I am trying not to lose hope, but it ia hard. Thank you for your continued thoughts and prayers. It is the love shared by all of you that gets me through. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn

There is a specialist in Seattle who deals with CRMO and is the foremost authority on the disease. I am trying to get his email to see if he thinks he can help her. If so I was wondering if anyone in the Seattle area knows if the hospital has any programs to assist in lodging. Boston had hospitality house, where people actually hosted people in their homes. I know not all Ronald McDonald houses are for general medical issues so I want to know my options. Sams Humira isn't working nearly as well as it used to, she's miserable and in pain. Her Rheumy is wonderful but he has only treated 1 other kid with CRMO. I want to know what her options are, if there are trials, if there's something we are missing. We are hoping if I can get him to look at her info we can make a trip this summer, so send positive vibes please. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn

Been struggling to power through lately. Every day has me fighting for things Sam needs. If its not getting her to see the right specialist, it is yelling at PCH and the insurance company about incorrect billing. Lately the hardest is social security, they owe her money and I'm trying to get them pay out. Since November she has been sleeping in my room in a recliner due to apnea. Its been resolved with surgery last month but now she needs a new bed. We got rid of the old mattress, it was about 20 yrs old and had springs popping through. I need some of that for this new bed. I cant get anyone there to talk to me, let alone help me. I am just barely holding on, trying to have faith things will get better soon, https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #ulcerativecolitis #medicalunicorn

I am going to start a list of doctors who can't touch my kid ever again. the pulmonologist who we saw last week, who told Sam she can't start Humira till after they hoover her lungs and grow cultures to check for the Cocci mold again. he emailed Sam's Rheumy yesterday and said she could. the lung hoovering isn't even happening till march so what on the what. Her Rheumy and I talked and concluded this man is an idiot and not to take the humira till we get the ok from infectious disease with the culture. He also said the guy is giving misinformation when he told Sam once the mold is dormant she's cured. molds once in your body live there forever. just meds make them dormant so you do not have active symptoms. I am fed up with stupid doctors who see 80 people a day and cant keep selves straight or arent informed. these are people's lives damnit. Its dangerous to compromise an already immune compromised person more when she still has this active in her as well as active pneumonia. I want to toss a few tables and scream right now. Top it off with still waiting on social security over a year later to get their stuff straight and finalize her claim, which was already approved just need to make sure we are poor enough. I have 2k in hospital bills sitting on my desk right now and no way to pay it. I get life isn't fair but this is insanity. Anyway I'm going to go start my day. I thank you as always for all the love and support you have shown my family these last few years with everything. I can not express how much I appreciate you. https://www.gofundme.com/4jkunj4 #gofundme #medicalhelp #crmowarrior #CRMO #iganephropathy #pneumonia #chronicillness #sickkids #helpme #valley fever #azvalleyfever #Chronsdisease #medicalunicorn