We have all experienced pain in one form or another. For most the pain passes quickly. For some of us it does not. Just 10 years ago I knew about pain like most people. Sure my back acted up but it was not anything regular. Eat some ibuprofen or even take a stronger pill and go on with life. Sure I had bouts of intense pain but it eventually left. Then my back decided it was time to break down for good.
My life had changed and I did not know it. The pain never left. Pills did not work. Stronger pills did not work. Meanwhile I struggled on with my life. I went to multiple doctors trying to find pain relief. I met an orthopedic surgeon who was convinced he could cure my pain with a fusion he had perfected using much smaller rods than normal. I went for it, heck by then I would have cut off an arm to be pain free. Surgery was way longer than he expected. My back was more screwed up than MRIs had shown.
The next day I was feeling better. That was probably the effects of all the drugs from surgery and recovery, but I had no pain for the first time in a couple of years. I went home and a couple of days later started PT. I busted my butt in PT. I wanted to be pain free. I wanted this to work. I pushed harder and harder so I could get my life back. I was happy at first. My old pain seemed to be gone. Then came new pain. I went back to work at 12 weeks and started pain management as well. Yeah you have heard my horror stories of that trek.
Pain management ! Even the name sounds confident. Problem is their idea of management and mine differed to a HUGE degree. I wanted my pain level down to a 3 or 4 and my life back. They were happy with a 6 or 7 and treated me like a junkie looking for a fix. The pain got worse and spread to even new areas. Work was pretty accommodating at first but eventually I missed to much and I got canned. 3 months of no work did not help my back any. I got a new job to go with my old pain but no benefits so I gritted my teeth and paid the HUGE COBRA premiums so I could continue to be treated. I dragged my aching butt to work on days I wanted to stay in bed and cry. I was a temp and could not afford to be off and I wanted them to hire me permanently. My boss noticed how bad I was and we talked about it. I was honest and told him I lived in pain daily. He couldn’t understand that but admired my dedication and at the end of the temp time helped me get into a permanent job.
That is something people don’t understand about chronic pain patients. We push past pain daily to get some of our life back. We keep going like the Energizer Bunny. We do not want to lay in bed and live with our pain. Those days when we do feel like failure to us. We deal daily with people who call us lazy, who say we are faking it or who believe we are just doing it to get the medications that let us go about our lives even if it is greatly reduced living. Now we have government agencies calling us drug addicts. People like Dr Kolodny who should know better believe all opioids should be banned and have no medical usage. Politicians with no medical background are scrambling to look like they care about their constituents by passing laws that will hurt others. We have the DEA trying to put good doctors in jail for prescribing opioids to their patients. We have doctors abandoning their pain patients because they are scared. Yet we go on.
There are days I want to just give up. Days when it seems like the pain is worse than normal and I would do anything to end it. I had thought I was going to get my life back in November of 2015. I had a very successful trial for the spinal cord stimulator (also known as a SCS ) and my surgery went very well. Basically zilch in the way of after surgery pain. I went back to work at 3 weeks, a little weaker but feeling great pain wise. I still had some pain in the area above where my stimulator covered but it was not too bad. I was able to cut way back on my medications and convinced my pain management to go to extended release which allowed me to drop down further. ( I won’t go into how they screwed that up and put me through 2 bouts of withdrawal) I got a new pain management doctor. The world seemed to be brighter to me. Oh what fun I was at the top of the roller coaster but we all know what comes next ! The drop, and drop I did. I had started to get shooting pain in both arms and numbness in my hands but it was not often, just once on a while. Then it became more often and wa joined by pain in my neck and shoulders area as well as between my shoulder blades. That was soon joined by intense pain in kidney areas, just above where my SCS covered. I had blood in my urine. I had been through this before and figured it was my kidney stones acting up. I dealt with it until about July last year when I finally ended up in the ER. Finally some blessed pain relief ! But wait that’s not all, there’s plenty more to come ! The CT scan showed not only my 2 kidney stones but also bladder cancer. Yippie I hit the freaking jackpot ! Two surgeries later I was without kidney stones and bladder cancer. The doctor said he had gotten it all. That made the last month bearable. The pain from the stent he put in after the kidney stone surgery and left in until the bladder cancer surgery had hurt a lot but not as much as the one after the bladder cancer surgery. That one was left in for 3 weeks as well and when he went to remove it, it felt like someone was pulling a spiked ball out of Mr. Happy. My kidneys still ached but I figured with all the dang trauma from 2 surgeries this was normal so I sucked it up for 3 months until November. Went back to the doctor and got even better news just before Thanksgiving. More kidney stones plus a bonus of Kidney cancer! My life sucks doesn’t it ?
Just before Christmas I had surgery to remove my kidney stones and then near the end of January I had the surgery to remove part of my kidney. I woke up in the recovery room literally screaming in pain. That was the worst pain I had ever experienced after any surgery. He kept me overnight and the pain went down. I went home Friday and was back at work Monday morning. ( Kind of odd for me since I had gone back to work the day after both the kidney stone surgeries and the bladder cancer surgery. ) I had a couple of blocks done for continuing pain in my flanks over my kidneys and started aqua therapy for my upper back. That went well. I gained back some strength and balance, but the pain wa still there as was the numbness. I had a myelogram done to see what was going on as well as another CT scan and a bunch of X-rays. That was a VERY unpleasant experience. The result was that the Neurosurgeon said no surgery, nothing much he could do. Back to pain management and discussed adding a 2nd SCS for my upper back issues. I was not wanting another surgery to fix any back issues since they seemed to not work. Pain management doctor agreed we should look into the SCS even though it will not fix anything wrong nor prevent future deterioration of my cervical spine. However it will block the pain signals so we will head into getting approval for the trial.
Meanwhile back at the bladder ranch, they had decided I did not have enough BS going on in my life so you guessed it, the bladder cancer came back. Surgery is scheduled for next week and I start chemotherapy as well that same day. BCG which is less invasive than the IV type. They apparently flood your bladder with the chemo drugs and you hold them for an hour then flush them from your system. What FUN ! NOT ! During this oh so fun process I will be trying to work, actually other than the day of surgery I will be trying to not miss any work by having my chemo treatments on Friday afternoons. I don’t have the PTO to get paid for missing work for every treatment and this gives me 2 days to recover before heading back to work. Thanks to FMLA I could miss and not get in trouble but would not get paid once my PTO was used up. During all of this the pain goes on. Life goes on and I truly wish I could have my life back. I wake up tired and by the end of my 9 hour shift I am exhausted. My weekends are spent sleeping, trying to save up energy for the week.
Now of course life has decided I did not have enough crap being thrown at me. I had just gotten a small bonus at work and taken the car to get new tires. They showed me that the ball joints on my 14 year old car were going and needed to be replaced. ( double checked and yep they do. ) This is on top of needing the head gasket replaced, the power steering fluid drained and replaced ( it is all foamy) of course a tune up and a couple of other things. Oh and the best news of all is that we are changing the insurance year at work. So instead of going from July 1 to June 30th we will be going from July 1 to Dec 31st ( with no drop in deductible or Max out of pocket ) and then starting over again in January so double the money from my pocket for medical expenses ! We already live paycheck to paycheck and my medical expenses are killing us with decent insurance ( see my numerous past blogs about that subject ). Getting a new car is way out of the question so fixing ours so I can get to my doctor appointments and work is about the only thing we can do. We just don’t have the cash to do it. My family has already stepped up in a HUGE way and gotten our AC fixed ( 4000 plus and a major necessity here in KY where it gets to be 90 + and high humidity every day during the summer and going 3 summers without was a literal HELL). Our furbabies Buddy a Chow mix who is 11
really is enjoying the cooler air and Amber our newest furbaby seems to think it is too cool as she now sleeps cuddled up with me. So I am hoping some of you could help by either spreading this to your social media or donating if you can afford to. I truly hate asking for help and was taught that you busted your butt and paid your bills but this is beyond us at the moment. Using public transportation is out as well since it would be a 3 hour trip each way just to get to my doctor, with 2 transfers after a 2 mile walk to the closest bus stop. ( Yeah that would be fun, I can’t go down the block without falling ). So if you can help in any way that would be awesome.
Sorry forgot my email address so you can do paypal if you do not like gofundme
Car Repair help
louisvillebuschs@gmail.com