Aug 24, 2010
Dropped the kids off at school at 7:15 am. Thought I would get them out for the day before I took the steroids. Kepted thinking the neuro said they were "massive" dosages. Normally I stay away from most any kind of medicine if I can b/c my body is quite sensitive to most everything. Definately didn't want to be driving the kids to school if they were going to effect me negatively. My gf was on call for anything I couldn't do if they effected me badly. Fortunately I didn't have to call her.
Boy, the Pharmacist wasn't kidding, the drug was was bitter. Neuro expld that this drug is usually given via iv but that at the hospital he trained at they gave orally and it is just as effective that way so why come to hospital every day when you can take at home? Yeah, I am down with that. Neuro continues to impress me with knowledge and common sense. I do think his humor can be misunderstood (really dry) and he is almost too objective in his presentation (not a lot of touchy feely stuff out of him) but hey, I found a gem of a doctor here. Competent and confident. I think I will call him Dr. Cocky.
I had trouble getting the medicine open but eventually it submitted to me. Mixed with oj like I was told and drank all in about 5-10 minutes. Only effects from it so far were bitter after taste that lasted about 1-2 hours then cotton mouth. First few hours a little jittery but that leveled off and I actually took a 45 minute nap at one point. Didn't notice increase in appetite (yet) and I think I am alittle behind eating wise from yesterday as my jeans were litterally falling off of me this afternoon. Drank a ton of water which helped take cotton mouth away.
Ran errands at grocery (love grocery shopping) and ordered vball team sandwiches (all 16 of them) for game tonight. Then had back, shoulder and arm massage with my favorite therapist. Eventually back home for lunch, a swim, nap then shower and out again to get sandwiches to school. A couple of walks with the dogs inbeteen.
During my swim I remember thinking, this is my first swim knowing I have MS. All other times my thoughts focused about hoping that swim was helping whatever it is that I have. Now I know swim is really for keeping myself as active as I can now for best shot at keeping myself ready physically for future. It was a great swim and I actually thought that I was almost happy, almost. It's hard to let the future go and just live in the moment, but that is what ultimately helped me find some joy in just enjoying the sun, the water and the diminished temperature outside (it was 107 yesterday!).
Physically the numbness is still growing fainter. Felt good all day. Slight headache here and there but overall very pleased with how I felt. Hoping tomorrow will be even better. Can't imagine I will need pills tonight to sleep that Dr Cocky perscribed. I am going to be on enough drugs, don't want to take ones that I don't really need.
All day dh and I texting back and forth. He is on target to come home late tonight. I imagine I will crumble when he gets here cause everytime I think about seeing him I have to stop myself from cyring. Hugging girl friend is not like hugging dh when you are facing something so serious.
Our families have known each other over 40 years (my dh and I went to elementary school together). There is a tight connection b/w them. My fil just had his bladder removed 2 weeks ago due to cancer. He has been fighting for his life since about the same time this episode started in April for me. There have been other struggles in the his family which have made these last four months really, really stressful for all of us.
I am thinking we should tell the kids tomorrow night, my sister Friday night, then call my parents with my sister here so that she can confirm that at least I appear healthy, then we can talk to my dh's family this weekend. The sooner the better as the more time passes the more I just want to move past the informing close family. Still would like to go out and see my parents in a couple of weeks but perhaps giving them a heads up is better. It was just so hard seeing my parents in law tonight and them asking me about article in newspaper and me having to admit I haven't read paper in days (cause like you know I have been a bit occupied- only they don't know this). Will discuss all with dh tonight.
Don't know why but I seem to be "on" today. I have made it a point to talk, greet people, help with passing out of vball pictures (when I could have easily sat in the stands and not moved), talking with parents about some great thing I saw/heard their kid do or say. It's not coming from me. It is coming from Him. Part of my prayers have been to feel His strength thoughout this. It's so hard knowing He is there but not being able to see Him. So, part of what I realized today is that I see Him all the time in others, and I can be His hands by doing for others so they hopefully will see Him too. Gosh, I remember one night a month or more ago when I was having a really bad night, in a very dark place and I asked God for comfort. Please I begged, you have never failed me. My dh rolled over just at that moment and put his arms around me. See? God answers our prayers in the least expected ways IF only we are still and seeing what He is offering.
For a few minutes tonight I forgot about the dx. Imagine that? I cannot considering yesterday, and what I have, yet there was my gift of joy watching the kids in the gym being so energized by the event of the night. They were all so happy, heathy and full of life, I couldn't help but get lost in all of it. If the worst comes in the future, I can manage. I will still have my family and I can still experience all these emotions. Life is so precious that I have to be grateful that in spite of my dx it is not a death sentence and there is hope for many years of good health.
Are there times when wow, I still just cannot get a grasp on all of this? Absolutely, I feel sad then it passes. Something that is helping me is realizing that I have already probably lived for 20 years with MS. This isn't new to my body, just my head. Why change something that although may not be operting normally, seems to be coping generally. I am trusting for today anyway, that this will follow the same route it has in the past. If it doesn't I may reevaluate but for now it is working. My mind needs to let my body manage this and I just need to stay focused on the postive.
I find so much strength in this forum and in so many of the people in it. There are lots of stories, lots of wisdom, lots of fear, lots of caring, lots of a bit of everything to partake. There is strength in praying for many of these new friends of mine. A community of people pulled together to help one another make it through the most difficult part of their lives and finding purpose for their part in it all. It's really beautiful.
Everyone who knows me, knows how important my kids are to me and through out all of this my kids have been taken care of. I have made sure of it. All school supplies gotten, all school clothes bought, hugs, talks, etc. This makes me happy. Somehow I even imagined to remember to put out the trash this morning. I wouldn't have blamed myself if I had stayed in bed all day but there was that strength to get up and go on with life. Yes, life will go on with or without me. For better or worst. I don't want to waste anytime grieving for what the future might bring, thereby wasting these opportunities to experience it all exactly the way I want to now. One of my kids taught me that just 3 weeks ago. So much courage shown under extreme circumstances that I couldn't help but be inspired.
And now I am thinking that it is all a part of the plan. The plan that most of us have such a hard time seeing. Why do bad things happen? Sometimes it's not for us to know and sometimes if we are carefully paying attention He show us glimpes. It's not all about us, it's about the ripple you leave in everything that you do and the ripple you get back from others. We are all connected to and by the same thing. God's hand is so big, you just gotta trust that it's there.