5 months post RPAO/scope

I have been meaning to blog for a while now and never got around to it, and I realize it’s been 2 months since I have posted.  I would love to post that things are awesome, but the reality is they are not, but they are slowly (like a snail pace slowly) getting better, so I am trying to stay positive.  I constantly have to ask myself “am I better than before this last surgery” -Yes, “am I better than I was 3 months ago” -Yes, “am I better than I was 3 weeks ago”-I guess so most days, “am I better than last week”-hmmmm that one depends on the day.  If you asked me the past 2 days I would have said definitely, I even went as far to say I turned “the corner” a couple days ago; however today I would say the corner is still in front of me and I’m not really better than last week.  This journey is definitely not a straight line forward for me, it’s constantly one step forward followed by 3 back.  A year ago I gave up my control to the Lord on this whole getting out of chronic pain thing, but I realized as the days went by I can’t just give it to Him once and life moves on all pretty and nice, but I need to give it up to Him every.single.day.  At least almost every single day.  Summer is rapidly approaching and my excitement and hopes of being able to do more with my kids this year is slowly fading as the reality is I can only take a certain number of steps each day (which doesn’t feel like very many, especially compared to my life 4 years ago) and do only a certain amount of activity before I am forced to either stop or flare myself up.  I will say my flares lately have only last 1-2 days at most which I am extremely grateful for.  I know when to stop and I just have to even though my mind is screaming at me to suck it up and push through the pain.

I am getting stronger, I can feel that.  I’ve seen my PT in Columbus 2 times since my last post.  The most recent time was last Monday.  He has progressed me to doing some exercises in single leg standing which means we are getting pretty advanced.  When I walk my pelvis on the right side only drops a little now, but I can’t walk around the block or more than in/out of buildings to get where I need to go because I lack endurance in my muscles even though they are getting stronger.  I’ve been hoping to give up my cane for good, but I’m not just there yet (although most of the time I just choose to not be on my feet longer distances so I don’t’ have to use it).  I have 9 exercises that I am supposed to do daily 3 sets each; however I have only been able to do 2 sets each so far.  I did the 2 sets of all of them the past 2 days and barely rested which was why I was so positive, but it all caught up with me last night when my hip muscles and low back muscles became crazy tight and painful, my fascia was pulling painfully down the sides of my legs to try and stabilize my pelvis (since my muscles were too tired to do it), and my neck was killing me.  If you wonder what the neck has to do with it when my pelvis is off balance from the hip all of my back muscles work incorrectly to stabilize my pelvis and things pull in different directions and fascia tightens and literally my neck vertebrae get pulled out of spinal alignment (I’ve always had this to some extent because I have cervical instability from EDS/hypermobility syndrome but it happens much more often and worse since the hip stuff).  Symptoms I have with this are severe neck pain, dizziness (especially when changing positions), loud ringing in my ears, sometimes nausea, sometimes my vision is off, and sometimes autonomic nervous system stuff like my heart will  start racing or my blood pressure will drop.  There’s a few other things that happen too some of the time.  These things definitely get worse the more “off” my pelvis is.  I’m trying to take it easy and rest today as much as I can.  Sometimes sleep, Epson salt baths, and self myofascial release tools help alieve the hip, back, and neck stuff, and sometimes it doesn’t.  Sometimes it takes several days of rest, other times I have to wait 1-2 weeks until my next myofascial appointment to get relief.

I go back at the end of the May to see Dr. Ellis and get a last set of x-rays and discuss if I want my screws removed.  I’m not sure I will be ready to make that decision at that time.  I want to be strong with decent muscle endurance before getting cut open again.  I’m pretty sure screws are what is poking me in certain spots but I don’t know for sure.  I’m not even sure I care these days.  If I ever get to the point where I am living life with a somewhat normal activity level and no pain in the hip areas except for the screws I will concern myself with it then.  Unless however the screws are what are contributing to my muscular issues that I am having, in which case it would be good to get them out this year.  I’ll see my PT a couple more times in May and get his opinion on this too.  He’s hoping to guide me via distance through email after these next sessions, we’ll see what happens though.

I have a lot of fears right now and I’m trying to give them up to God and trust in His plan still for this, because I know He’s “got this” but it’s still hard some days.  I miss being a productive member of society; I miss working with and helping people as an OT.  My degree and field is so specific that I’m not sure what else I can outside of it.  As of now returning to that career won’t work with my limited physical activity level.  I’ve been praying a lot as to where I am being called (and am physically able) to do for work and/or volunteer my time, where God wants me to be and not just where I myself want to go.  I am investigating into more things, but God isn’t speaking to me about any of them yet, so I feel like He is saying I need to wait patiently a bit longer.  We are also taking a trip to Guatemala to visit our family there this summer for several weeks, and my anxiety (like I had last year before we went then) is starting to come back, the long walks through the airport, the long hours on the planes, all of the activities planned there with family, will my body be able to handle this without putting me in excruciating pain?  The Lord provided me a great trip with minimal pain amazingly.  I keep praying on this, that He will work the same miracle as He did last summer in Guate, that I will be able to handle it with minimal pain and to not flare too badly while away from my myofascial PT (who is the only one who can calm things when I flare too badly).

One last thing I would like to talk about is the amount of guilt that goes along with being a mom in chronic pain.  I’ve met a couple of people, who although their chronic pain circumstances are different, they still struggle with the same mental and emotional issues that go along with trying to deal with what has been dealt to them while being an “active” and “present (physically, mentally, and emotionally present)” mom to our kids.  Our minds are so distracted at trying to keep the pain signals at bay that it’s hard to be fully present with our kids.  It’s hard enough not to be able to physically do active things with our kids that “normal” mom’s do, but it’s also mentally a lot of work to keep focused and present with them during non-physical quality time.  For me, focusing on a game we are playing, a book we are reading, conversations we have ( and if you have elementary aged kids you know these conversations sometimes circle around at times without much point anyways which could leave even a “normal” person confused and having trouble keeping up with it), etc…  take so much effort that I often find myself reading a book to them but having no idea what we read or listening to a story they are telling me but having no idea afterwards what it was even about.  Even when I try to stay focused my pain starts screaming to move positions then to do it again seconds later then again seconds later, then to rub this area which hurts, or see if I can crack this joint so that it gets back into the right position, etc… At night I think about the times I was with my kids physically throughout the day, but not mentally or emotionally and feel guilty, and then try really hard the next day to not fall into that cycle, but it’s hard to block the signals.  It’s not like you can put pain aside like you can a list of things you need to do the next day, the body continuously sends these signals non-stop so it is work to push them out of our conscious brain.  Besides the physical toll, the mental toll is sometimes just as hard if not harder.   If you are thinking what about pain meds, they do little (in my case) for my body so I don’t’ take them, but they too cloud your brain and keep you from being fully present so it doesn’t stop the problem.

I just felt like I needed to write about this topic of being a mom while in chronic pain today because I know there are lots and lots of mom’s struggling with this and I want them to know they are not alone.  I struggled with this so much, and I still do some days, but I know that God knows this guilt and my faults and failures each day, and He also knows what I (we) are all going through/have gone through on our chronic pain journeys and He gives us SO much grace every single day that we ask Him, and we need to allow ourselves to give ourselves grace as well for when we fail, which will happen daily.  It’s ok that we are not who we want to be, that we can’t do what we want to do.  God will still love us, our kids still love us, and we need to work on asking God to help us love ourselves because there is purpose and meaning in our lives and why we are going through many years/a life of chronic pain.  God Bless, thank you for reading.

2 Corinthians 12:9  “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

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