April 21, 2010

It’s been a long while since I have updated and there are a gamete of reasons behind that, but the biggest being there seems to be no time at the end of a day to sit down and 1) gather thoughts 2) type them out.

After the recovery from surgery Sadie was doing fairly well. She was not as well as she was last spring, but she was feeling pretty good and was increasing her activity levels. She was doing so well that her rheumatologist felt it was safe to start backing of her humera injections from weekly to bi-weekly. Humera is intended to only be a bi-weekly injection, but often to “start” the process they will do this weekly. Towards the end of March Sadie was happy to have more time between injections.

Very shortly into April she started to have increased pain in her right ankle again in addition to quite a bit of swelling (her entire ankle and foot are huge right now) and in addition was complaining of pain in her neck again. Then a few days later there would be a complaint about her left ankle, but she would brush thinking it was just having to work harder to compensate for the increased pain in the right ankle. Then her wrists started to bother her… each day brought a new ache or pain or several. I made a call to her rheumatologist and they wanted to see her right away.

Off we went to see the doctor again yesterday. It was an emotional appointment. Sadie struggled through all of it, confused on how to describe her pain, if the pain from one point to another was the same or different and just generally exhausted from what seems like continual issues with very minor breaks in between. After exam and discussion it was decided that injections would go back to weekly and two new medications will be added to see if that will help alleviate pain. We go back to rheumatology in June. The rheumatologist did say that she felt we were closer to talking about fusion that before. She attempted to move Sadie’s sub-taylor (left to right) joint in her right ankle and just the smallest movement caused her tear induced pain. Honestly, these appointments seem to get harder… it is heart breaking to watch her struggle.

Between this appointments a few other things have gone one. She was fitted for a custom brace for the pool as the pressure of the water puts too much strain on her right ankle. Today was to be day 1 for testing that out, but we are still having a hard time with the functionality of this… so in time.

She will have adjustments made to her daily brace next week in addition to being fitted for a wheelchair that we can have at home to use when needed. This will be a nice option over the summer for when we want to take walks, etc as right now just going to the grocery store is too much for her. We are also going to get her into see a pain specialist as they may be able to provide some alternatives (massage, acupuncture, etc) to help her cope with the daily pain she is experiencing. That clinic is booked out months in advance so it might take us some time to get in there, but it’s on the list.

That is the update for now… we ask for your continued prayer in many areas:
1)Healing and remission

2)Coping with the injections; this is a hard thing for Sadie as she always says she would prefer to have IV’s every day then to have to do the injections

3)PRAISE: Labs have continued to come back good

4)That the medication changes actually work quickly and avoid the talk of fusion any sooner.

5)General health and well-being. When Sadie was doing the weekly injections before it seems she was battling continual colds, etc.

6) Sleep. She has really, really been struggling in this area and we need prayer that she can start getting some good, solid SLEEP at night.

Thank you for your continued prayers they are so very much appreciated.