5 Months since her "NEW" diagnosis

And things have gotten a bit more complicated. So, when Bella was diagnosed with her newest arthritis (psoriatic), we had to make a change in medication to effectively treat her symptoms. We started on an injection called Humira and we also kept giving her weekly injections of Methotrexate. After a couple months of taking the Humira we saw that her psoriasis was clearing up and she was beginning to see relief in her joints, awesome news! Then, 2017 hit and her body had a new plan for us! Bella's body began to have a reaction to the Humria and it started to created new psoriasis in new locations (far worse than her original rashes). We have spent the last couple of months trying to find the perfect combination of creams to try and clear up the new psoriasis. Some weeks it works and other weeks it doesn't. When she is on strong steroid cream we can get most of it under control BUT you can only use those creams 2-3 days at a time or it will cause a whole new set problems we don't want. Last week for the 1st time it hit her face, let me tell you that is life changing for a teenager! She tried to convince us to allow her to stay home because she was embarrassed. Thankfully, I was able to convince her that it looked like ache and no one would even know it was psoriasis. I reminded her that 3/4 of her classmates had ache on their face too and now she fits in just fine!!! ha ha She didn't find me amusing, I'm sure! So, if they can't get this under control soon, they will have to change her medication again, back to infusions (this one is called Remicade). In the meantime Bella has been having a new pain in body that we just don't quite understand, it's in her tailbone ( aka coccyx )! Yes, our family is enjoying the use of that word because for some reason we find it to be comical sounding! To our surprise there are joints in your tailbone! So anyway, it hurts for Bella to sit and to go from a sitting to standing position. So our initial plan was to work with her physical therapists, use a special pillow to sit on, and avoid long term sitting. Then we tried a round of steroids to hopefully reduce the swelling in her tailbone joints. Still no success, so she had an Xray yesterday that showed no physical break or traumatic damage. So next week we will have an MRI and see if the arthritis has taken over her Coccyx! If it has, we have to switch medicines because it means the Humira is not working for Bella. It has been so hard the last couple of months because I love my kids' little bums and I'm a bum patter and squeezer and it is so hard to resist (or remember to not do it). Bella is happy because she absolutely HATES when I hand out this type of affection. I JUST CAN'T HELP MYSELF, they are so tiny and cute! SO, we hope to have more answers next week and hope to soon have some pain relief for Bella. She has also been having more issues with her POTS condition as well. You know, because Bella isn't a simple child, she goes big with everything in her life! Within the last week or so she has been having increased symptoms that cause her vision to go black and her arm to go numb, as she is getting lightheaded. After speaking with her cardiologist yesterday we found out these are the signs that her body is seconds away from passing out. Not good at all. Her usual symptoms were lightheaded, dizziness, and fatigue. So, we have now moved up to the next level of POTS symptoms that we hoped we would never visit. It becomes much more serious because once you start fainting you put yourself at risk for injuries. The doctor warned us that Bella must be very careful and try to be aware of her body/symptoms. We will need to make sure she follows the doctor's orders very carefully. I plan on spending the next week doing research and looking for ideas to help Bella. We know a few people with POTS, so I have already reached out to them for pointers and maybe fresh ideas that could help us. I just think it is time to put Bella in a bubble! It is a lot for a 13 year old girl to endure. I can only imagine the wonder and confusion she has going through her mind right now. She wants to be just like every other middle school teenager, and she wants to be able to play every sport that strikes her interest. Unfortunately, she can't. There are just some things she will never be able to do again. BUT, thankfully our field hockey and Lacrosse teams have allowed her to play with her restrictions. Her doctors want her to be able to be active and will allow her to play as long as her body allows her to. Bella is nervous that her medical problems will interfere with lacrosse but were going to give it a try and see how it works out. You don't know how much that means to Bella, because she loves sports. She loves competition and the thrill of the game. She loves to be a part of a team. When basketball and gymnastics were taken from her 3 years ago, it broke her heart. We will keep working with the doctors to find the best care and quality of life we can give Bella. We need to keep her joints moving, her skin clear, and her POTS under control. It is my mission to get Bella in to remission one day! There has to be a cure out there somewhere, it just needs to be discovered! Until then, I will teach Bella the power of strength and courage!