Chronic Sucks

The title of this entry is a mantra I share with a friend. Some days it is how I feel about the reality of our life around here. Most moments I stay in the positive and count my blessings and miracles. But there are moments, okay days, where it all just feels overwhelming and unfair. This is when I feel just as the title says and I scream, "CHRONIC SUCKS!". The best part is that God understands, expects and allows me to walk through those feelings. He watches me struggle through and finish my tantrum. Much like I work to do with my kids, he patiently waits as I stomp my feet, scream and cry. Then, when I have exhausted myself, he scoops me up into His arms. He soothes me with His love and tells me all is okay. He reminds He is there and He is my strength. That is the awesomeness of God!

On a side note, we got the results back from Dr. T about Ricks' autoimmune disease testing. Most of the results looked good. There was one, the neutrophils, that was high. I guess these are a marker of inflammation and so this shows that there is some kind of inflammation some where. Dr. T recommends we see a rheumatologist for further testing. He said his tests really look inside the box and with all things considered we need to look inside and outside the box. So we wait to hear from Dr. T about who is the best rheumatologist for Ricks to go to. Then we add another specialist to our list. Ricks is joining Maggie in having his own medical team. The thought of 2 kids and 2 medical teams really exhausts me. As I said, sometimes chronic sucks.

Maggie is so frayed and done feeling sick. She bruised her tummy on the 4th. With all her issues, I thought it best we have the pediatrician check it out. All looked fine but Maggie's anxiety was high. She was scared that they would have to do more medical interventions or IV's. After her appointment, she had a little bit of an emotional breakdown. It was short-lived and we talked our way through it. During the talk, she told me she is sad to feel sick all the time. It makes her worry about what the doctors will do or if they will ever fix it. Talk about breaking a mother's heart! In the end, I calmed her and she moved on.

It seems she is getting worse and there is no resolution in sight. I told her pediatrician today that I feel as if there will never be an answer. That she will just have this head pain for the rest of her life. He looked a bit taken aback but did agree that she may be ill a lot in her life. His recommendation is she has to learn how to be happy and successful in spite of her health. I totally agree but will she still be ill with this infection? He did not seem to think all was hopeless but there are moments when it feels that way. As I said, chronic sucks.

Yes, at this moment, I am feeling a bit more on the half empty side of the table. I just want a moment of health and peace in this family. I want not to have to manage and organize medical appointments, doctors or test results. I want two kids who feel healthy and don't need 5 medicines to help manage the day. I know that my wants are not truly realistic at this time. I hope someday to get there for me, Rick and the kids. I also know that God is waiting for me to finish my tantrum. He is waiting with open arms to remind me of all my blessings and miracles.