I have tried to live an authentic, transparent life. It has given me nothing but heartache and despair.  Has it been worth it? Sometimes yes, sometimes no.  Keeping with tradition, I had my pre-op appointment today. Zeke accompanied me, and I was naive to think that it would be an in and out visit.  An hour and a half, one abnormal EKG, a few downed computers, 3 lab slips, 2 x-ray orders, a dme order and some PT exercises and an RX later, we left.  Zeke was brilliant, he simply drew, played tic-tac-toe with me and was the cutest quietest kid I’ve ever taken with me for an 1 and a half appointment ever. I told the nurse that he’s the only of the three boys I’d ever consider taking to a doctors appointment with me anymore, simply because he’s the best behaved in general. I guess being third, he just goes with the flow of things.
After I took Zeke to school I went to get bloodwork done, and ironically she was able to get a good vein on the first try but made a mistake and pulled out the needle by accident before attaching the vial and I ended up with blood on my jeans and having to be re-stuck. I told her that lucky for her I am used to being a pin cushion when going for lab work, and she is usually great at getting me the first time and sure enough the second time got the vein on the first try.   I think she must have written down that I have deep veins because she went straight for the small needle w/ the catheter type attachment, I usually have to ask new techs to do that, which I hate to do because it clues them in that they might have trouble which usually ends up in at least 2 sticks before a successful draw!
I ran out of time so I didn’t get my x-rays taken care of, but my pre-op form says, pending lab work I am cleared for surgery on Friday. Now I know that may be normal, but usually my labwork doesn’t say that. Nor, I am sure do many of you have to have attached your abnormal current and past EKG’s along with your heart tests confirming that yes at age 31 you have something going on with your heart but that they don’t think it will kill you so you should be ok for surgery and they think it’s just normal for you, again at the young age of 31, to consistently have abnormal EKGs. now, that may fly for most doctors, but for a young woman who’s father has been facing major heart issues and died several times because of heart attacks and is awaiting open heart surgery, this places a bit of fear in my mind, but sure, lets go ahead with surgery anyway. Because really, when you’ve had over a dozen surgeries, again before the age of 31 and never died or had heart related surgery complications, I guess that’s precedent enough that I’ll be ok. Now the breathing issues post surgery, that’s another issue altogther……
So now we wait.  I suppose if I hear nothing back from the doctor surgery is a go for Friday. Today’s doctor was most concerned with my kidney function as well as my B12 level, as I’m having significant back pain, decreased mobility and strength in my arms and back.   Over time my muscle strength has weakened, and I knew it was getting worse, but until today’s neurological test I didn’t know how badly.  I think today was the first time I really did badly on one of my neuro exams which is actually pretty funny since I get them so frequently due to my history.   I don’t think I’ll be all that disappointed if surgery is canceled for Friday, as long as they find something that is treatable, although I would like to have the surgery done before the first of the year so we don’t have to start all over w/ our out of pocket deductible in order to pay for it!     For years Dean and I have suspected that one day they will finally dx me correctly with MS, but until then, I just battle worsening symptoms of pain and limited mobility.
On top of these things, I battle the day to day.  I am not perfect.   I don’t pretend to be. I know my health affects my family, especially my husband and kids.   I know it makes me a crappy friend who often is too needy.  But I also don’t think it’s fair to not do my best to try to overcome my pain and physical limitations in an attempt to have the best day possible every day, so my kids can have the best day possible every day, so when my husband gets home the house is clean and dinner’s started or at least thought about and I’m available for him, and if I can have at least enough energy to email or text friends to check in throughout the day even on the worst pain days.  We can control how we act.  I admit there are days when my pain and the stress of it all gets too bad and I lash out at the kids, or I let them have their way, which sometimes makes people think they are manipulating me, but if they knew how little strength I had in those moments to even be up and out of bed maybe they’d think twice before thinking that.
I admit that my kids take advantage of my health but I also admit that in the last month we have taken back the home field advantage, or rather I have. I am not allowing the kids free reign.  Caleb is finally helping, and is not only doing so without grudging, but has learned to enjoy cooking snacks or breakfast for his brothers as well as himself. He loves our new vacuum (his words not mine)  His attitude is slowly moving from one of complaining about helping to being more like Bo, who instead of having to be asked to do something, just does something because someone mentions a need or because he sees a need.       That being said, in the last week, the boys all have seemed aware of my decline in health. Caleb and Bo have made attempts, and Bo more successfully, have staged sit ins of sorts. Refusing to go to school, in hindsight , to be near to mom.  Caleb does this out of worry that I need help or that I won’t be OK. Bo does this for many reasons, and I think we finally have figured out how to overcome it at this point by changing several motivating factors as well as transportation issues as the cold was making him have extremely chapped dry skin so Dean is now driving him all the way to school so his skin won’t be so raw.   But Bo also felt the need to be with mom because he felt like no one else cared for him, which was a sad thing to hear.   We’ve since addressed these concerns and he seems to be doing better with the new plans set in place.  He’s also going to sit down with the school counselor to discuss how to better manage his emotions.
So while life is a tangled mess right now, we’re doing our best to make every day the best it can be by focusing on our family.  Listening to and really paying attention to needs of one another to make sure we’re all on the same page.  We’ve had a rough year,and as the year is ending, I’m hoping we can end it on a high note.  We’ve had a lot of negativity in our lives, and we’ve shed a lot of that in the last 6 months, and are still going to have to keep processing a lot of that in the coming months, but doing it as a family instead of not listening to each other is the first step.
I can’t believe it’s almost Christmas, I realized yesterday that if I do have surgery this week that I might not even be up to much for Christmas this year, it seems like that happens to us often.   I’m looking forward to few weeks of R&R but really, I’m only getting one week of R&R as that’s all Dean gets off of work and the boys have off school til January.    But I’m grateful the boys are all big enough and helpful enough to chip in and do their part, so really it won’t be that bad. Caleb can cook eggs and oodles of noodles, as well as make sandwiches. Bo is great at cleaning up toys and Zeke can entertain us all, and is pretty good at cleaning up when the mood strikes him! He’s going to be a great baker one day.   So if things change, I’ll update, but if not I’m not sure I’ll post again this week as I’ve still got a final to finish before Thursday and want to get the house work done before then as well.
