I have been a bad blogger lately… Sorry that I have been MIA… Life has just been a little crazy as of late. I will fill you in…
Losing my Nanny took the wind out of my writing sails so to speak. The internment and graveside service was the beginning of this week, and from what I hear it went well. I wasn’t able to go. 😦 Another thing in my life that has ended up being a difficult decision to make because of my pain… grrr….
The service was 6 hours away from where I live. Because of my honey’s work schedule and my little dude starting school this week, had I gone I would have had to endure 14 hours of car travel in a period of 2 1/2 days…. and for as hard as I tried to convince myself that that would be okay, I had voices of reason (my family) reminding me that I would most likely suffer for a few weeks as a result…. Soooooooo….. After losing some sleep, feeling guilty, and changing my mind a half-dozen times I decided it wasn’t in the best interest of my family to go. Blah… Instead I said my own goodbyes… and I am now knitting a beautiful silk scarf on my Nanny’s old knitting needles. I will think of her every time I pick up my needles…
Life has been CRAZY the past few weeks, trying to cram in as much ‘summer’ as possible and preparing my little dude to go back to school! GRADE 4 ALREADY! Where has the time gone? I clearly remember his first day of kindergarten like it was yesterday… and before I know it he is going to be in Junior High.. 😦 Can someone please slow time down a little?
After 2 1/2 hours of sleep, and a hectic morning – shirt and tie on, hair products in and completely DOUSED in my honey’s cologne 😉 my little dude headed off yesterday to rejoin the masses… Sigh… To tell you the truth, I am a little lost now…
He had an AMAZING first day of school, and I couldn’t have been any happier to see him RUN out of school yesterday with a HUGE smile on his face! He LOVES his new teacher… LOVES his new friends, and he bounded out of bed this morning at 6:55am to do it all over again this morning. Life is good in the eyes of an 8-year-old….
And me… well I have been struggling a bit as of late, hence the lack of blogging.. my apologies again… the nerve pain that I have been experiencing this past year keeps getting worse and worse, and I cannot get it under control… and it is driving me crazy!!! With all the layers of pain I experience every day, the nerve pain is just the icing on the proverbial cake.. I have had enough of this crap, and I get so frustrated that there doesn’t seem to be a solution.
The last appointment I had with my medical ‘team’ didn’t go so well… and I have been angry ever since…. I know it is close to impossible to relate to this journey through pain if you haven’t gone through it yourself. I don’t expect miracles to be performed inside the 4 walls of my Doctor’s office, nor do I expect that any one pill… or a combination of 20 medications will be sufficient enough to take away my pain, but I still have hope that the quality of life for chronic pain patients can and WILL improve… but there are moments in time that I start to lose hope. Call me pragmatic, or a realist… I try to stay positive, but sometimes it is impossible to keep a smile on my face… I left my Doctor’s office in tears, and I have been trying to climb… white-knuckled… out of the hole ever since. This is a small glimpse into how my appointment went…..
Me: I have been taking all of my meds as prescribed guys, but they haven’t been working as well as they should be.. I am STILL taking over-the-counter meds every 4 hours on top of everything else… is there anyway we can look at the dose of certain meds?
Pharm: Absolutely, what are you struggling with?
Me: The nerve pain we have been talking about is ten times as bad as it was, and I am getting more symptoms than I was. there are days that I literally cannot put my feet on the floor because my feet are excruciatingly painful. I am getting ‘electric shock’ type feelings throughout my whole body, without warning. And I don’t know why but I keep getting horribly painful ‘goosebumps’ that WHOOSH through my entire body, and I can’t stop it from happening.
Pharm: Those are all ‘normal’ symptoms of nerve pain, but it is definitely a concern that you aren’t just feeling the burning sensation anymore. Your central nervous system is just hyper-reacting, your sensory system is on overload. We will ‘up’ the medication you have been taking for nerve pain, and see if it improves… what else do you need help with?
Me: I am BEYOND tight… My muscles have been hyper-tonic as of late, and I have been taking over-the-counter muscle relaxants every 4 hours without them I can’t function. I am concerned with all the other crap that is in them though… I know it is hard on your liver to process all that acetaminophen. Is there any way that we can think about adding Flexeril into my program, and that way I am taking a more efficient relaxant, and none of the other stuff?
Pharm: I think that is a good idea. Over-the-counter meds are not made to be used ‘full-time’, and can cause problems in the long run. I think it is a reasonable request to add Flexeril, even just once a day or once every 2 days. It’ll help you manage through this ‘never-ending’ flare.. let me go grab your doctor and we will talk about it. (For those who don’t know, I see a pharmacist who does consultations with my Doctor’s patients. They work together to help me manage. Since I am on so many different meds it is CRUCIAL to have a specialist figure out my drug routine)
(Pharm leaves and is gone for 10 mins.. and comes back with my Doctor in tow)
Doc: So you are still not doing very well Jolene?
Me: Not really.. I am still struggling…
Doc: I don’t like you taking all the over-the-counter meds. You must be really constipated as well?
Me: I am, laxatives are not even working… but I feel like I have no other option, the pain has been so bad Doctor… (she cuts me off)
Doc: Well I don’t like the idea of you taking a muscle relaxant period… Have you tried stretching instead?
Me: Sputter.. cough… what? Um.. (flustered)… I am BEYOND a little tight Doctor…
Doc: Well taking more pills isn’t always the answer – How about massage?
Me: Um.. Hello??!!?? I have been doing ALL of that for 5 years now.. stretching, massage, chiropractor, yoga, meditation… doing the hokey pokey as I turn myself around… WTH?
Doc: Well at this time I am not comfortable prescribing a muscle relaxant, and I want you off the OTC stuff… Try heat and ice, and we will see you in October.. (she leaves the room)
And then I lost my mind, and my Pharm wanted to climb under his desk and hide I am sure…. I yelled (which if you knew me is NOT normal for me). I apologized after as it isn’t his problem, He is the one who suggested I take Flexeril to begin with, and I know my pharmacist is on my side… But the Doc has the final say… and she said NO.
Number 1) Saying that I am STIFF is like saying a monsoon is just a sprinkling of rain… There are days that I cannot WALK because the muscles in my legs are so tight it prevents my joints from moving…. I can’t turn my neck let alone touch my toes… and if YOGA was the answer I wouldn’t be here right now… I’d be working full-time, going to school, living my life, and wouldn’t have ‘time’ to blog…
Number 2) If the plethora of pills I take everyday don’t help my pain… do you think an ice-pack is going to help???
Number 3) Those OTC muscle relaxants I take make me feel sick, take away my appetite, make me groggy, make me constipated, and are killing my liver… I don’t take them for fun… I don’t take them because I feel like I don’t already swallow enough pills everyday… I take them because I am going out of my mind with pain… so obviously the ‘plan’ I am currently on is not working… and that’s not good enough…
Phhttt…. Have I tried massage? WHERE HAVE YOU BEEN? Do you know how many THOUSANDS OF DOLLARS I HAVE SPENT IN THE LAST 5 YEARS ON NON-PHARMACEUTICAL THERAPY?!?!? My son may not have a college-fund, but I however have been to Natur0paths, Chiropractors, Massage therapists, Cranio-Sacral Specialists, Herbologists, Acupuncturists… and a few ‘snake-oil salesmen’ – and I have outlived EVERY ONE OF THEM… they all starts out really HOPEFUL and end up telling me to go somewhere else after I have spent the equivalency of a down-payment on a house…
So NO.. I think we are past the point now that a heating pad and downward-facing dog pose is going to help… THE END.
I have been aggressively fighting this past year, and I feel like I am no further ahead…. this time last year I was on 2 meds… I am now on triple that amount… and my pain is no better…. and I am sorry but it is a HUGE slap in the face to be told to go for a massage and stretch… (slaps palm of hand on forehead)… don’t ya think I have been DOING THAT?!?!?!?
I have been licking my wounds ever since that appointment – lying low and trying to make sense of it all yet again….
So that is my life as of late…
How are all of you doing??
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