Bear with me please

Bear with me please, this rambling has a purpose.....   Those of you that know me know I have been dealing with ankle issues since July 2016 when I caved in and went to the orthopedic doctor because the pain would just not go away. After xrays and an exam it was determined I had posterior tibial tendinitis and was put in a boot for 4 weeks.  That progressed into a tear and later a tear in the cartilage and turned into a long drawn out ordeal that resulted in 2 surgeries.  The recoveries were hard physically and emotionally.  I thought I was prepared, I was not.  About 2 weeks into recovery on my second surgery I had an inkling something wasn't right in my foot and ankle.  I was having debilitating cramps/spasms in my foot.  They would twist my whole leg causing it to hit the couch/bed, where ever I was sitting at the time, and would last minutes.  I had cramps with the first surgery but not this bad.  When I would try and wiggle my toes, not all of them would move and I had this deep burning pain in my foot.  Over the next few weeks the frequency of the cramps slowed down and that was a huge relief.  At 8 weeks post op when I could shower without covering the boot and could get my leg wet, it was weirdly sensitive and not where my surgery sites were but my whole foot.  I hoped it was just the newness of things touching my foot.  They got me on some compound cream to help with the pain.  It has lidocaine in it along with some other things and the only thing it does is allow me to be numb enough to get in bed.  At 10 weeks I was in more pain than before my surgery and when I showered I cried when water hit my foot, I couldn't get my foot under the covers because the pain kept me awake.  It is a pain that I can't describe other than it feels like tiny razor blades are scraping my foot and then the pain soaks down in my foot so it feels like the bones are splitting.  All I can think is why, why does it hurt so bad when I should have been better a long time ago, the things he fixed are better but why does my whole foot hurt so bad. I started therapy at 10 weeks and talked to the therapist about it and she examined me and said you have the start of reflex sympathetic distrophy and explained it is a nerve disorder and we needed to nip it now or it will get worse so I diligently did what she said to help desensitize my foot and It wasn't getting better.

In the meantime I had a yearly check up with my primary doctor and he asked about my foot and I told him what was happening and he wanted me to see the surgeon asap so I called and they got me in the next day.  He examined my swollen, purple foot that hurt so bad when he touched and said you have complex regional pain syndrome which is the same as reflex sympathetic distrophy and put me on a med my ins didn't want to cover so we had to fight that, steroids and referred me to be evaluated at pain management this was last Thursday.  I got in the next Tuesday.  The doctor confirmed CRPS/RSD.  The surgeries that fixed my tendon and cartilige have caused something even more painful.  It is a chronic pain disease and is lifelong but can go into remission with the right treatment. He was very nice and wants to up my meds and try sympathetic nerve block.  He explained I would have to have them every week or 2 to build up in my system and he said I would have to be sedated and a needle in my spine and they would numb the nerve causing the issues.  I have been thinking about this option for 4 days now and I am still undecided on if I will do it or not.  I have heard more negative things than positive things about them.  However I feel if there is even a slim chance of relief then it is worth a try. I don't know what to do, I just don't.

So I sit here trying trying to figure it all and and trying to tell my story  through tears while being in pain and frustrated and so very tired.  I can't do the things I should be able to do.  My meds make me so tired and feel weird and disoriented at times. Friends don't talk to me much any more and I feel alone, so very very alone.   Putting on socks and shoes is dreaded, pants that brush my foot are a no no, I have to shower on one leg,  I am hyper-aware of my foot and anything that might touch it.   My work is what keeps me grounded.  I NEED to work, not just to pay the bills (but the bills do need paid) but because my photography is my life.  I need to get out and talk to clients and be creative.  I need that time of forgetting for just a little bit.

Anyway I write this because Nov 6 is CRPS awareness day.  I just want people to maybe understand this weird and horrible disease.  You never know what someone is going through so don't give up on them.  This whole things has taught me compassion for others. Just because I can't see it doesn't mean the struggle isn't there.