here’s a round-up of the last few days. i’m going to write it here because i want to share it with you. i want to remember it. i want to be able to look back on it so i can remember where my head was when i made certain decisions. i don’t want to forget it. i want you to be encouraged if you are ever in this place. and i want to look back and be encouraged too. because i know i’ve been here before. and i always get out. but sometimes that’s hard to remember.
sunday was a nightmare. but i should back up. (make a screeching noise here kind of a cross between a car accident and film being violently rewound. there. now we can start.) two appointments ago, i left my neurologist with a handful of prescriptions, most of them refills of stuff i have already been on, but a few newbies he wanted me to try to help me with some new problems and some exacerbations of old stuff. as i left he said cheerfully, “make me proud!” and winked- very sports coach to star athlete and i ate it up. because i AM that star athlete! i AM that star patient! even though i always fail, even though my body and my brain NEVER respond like they’re supposed to, even though i come in with my own research and my own ideas, which most doctors hate and are threatened by, at my core, i do want to be that star patient- the one who the doctor loves and dotes on and gives extra time to and brags about to the other doctors. i want- oh you have no idea how much i want- to be that star patient. so when i left his office and he said that my eyes were glistening and i was like, “ok. i’ll try!!” and i really did.
i really did.
one of the medications had to be gradually increased. he told me to go up every week (hmmmmmmm- the PDR said to go up only every 2 weeks, but the patient leaflet did say every week, and so did he…) so i did. 100 mg, no biggie. 200 mg liking it but no real results. 300 mg. do the screech noise again, but this time it should sound like the needle scraping across a record really hard. like a car trying to avoid hitting a toddler. like your pain receptors being stretched past their limits of tolerance.
i thought maybe i just had a hard day. so i did 300 mg again. and the next day was worse.
but i was just at the doctor. and he was so nice. and he was really trying to help me. and i really don’t want to be a pain in the neck. what if he drops me and i have to start all over agin to find a new neurologist after all the hassle of finding him? especially when i feel so horrible?
by the weekend i could barely get out of bed. i was too cold to take off any clothes to get into a hot bath, but all the layers of clothes i was wearing made it even harder to move. i sat on the kitchen floor while one of my daughters rubbed my neck and tried not to cry. when i finally made it to bed i decided that i would stay there rather than go to the bathroom, because it hurt too much to move. the only thing that hurt more than my bones were my muscles and the only thing that hurt more than my muscles were my bones. i took a boat load of pain meds.
i couldn’t lift a pot of water to bring it from the sink to the stove because it weighed 8,000 pounds. i tried to take some laundry downstairs but dropped the entire basket in a cascade of dirty laundry down the entire stairs. i just stood there and watched it, wondering how in the world i could grasp that many individual items to get them into the laundry room. i think *h came and saved me. i took more pain meds.
i wanted to spend some time with the chickens, but i couldn’t get outside, so i just sat at my window and watched them. i called a friend to ask if i could borrow some pain meds.
i checked the PDR and it said that one of the side effects of this medicine can be breakdown of muscles. you can get a blood test to verify it, but if you have extreme muscle pain and fatigue, that’s what’s happening. since waking up for half an hour meant that i had to go to bed for another 4-1/2, i thought that might just be accurate. even typing on the computer hurt my wrists and fingers and was so tiring i had to keep taking breaks. more pain meds.
found out that to get my scrip filled for the medical marijuana (which we are calling m&m’s -ugh, the apostrophe!- or medical mashed potatoes) i need to get a washington ID. tried that once but was at the wrong branch, where they only did other state business, and have to go to a different branch, so i still have my michigan ID- so i would take care of that, but oh- i hurt too much to drive right now… *%#@#*$^&%^)^
i have started weaning down from the horrible neuro med, and since it has a half life of 58 hours, most of it should be out of my system by thursday afternoon.
the pain has been gruesome the kind where you lay in bed going over the reason why your family would probably be better off without you. i think that’s it’s so easy to forget how vicious pain really is, and that’s a blessing, because otherwise we’d all be curled up in balls hiding under our covers. i don’t think human beings can withstand that intensity of pain for long periods of time and still maintain their humanity. you just can’t manifest compassion or dignity when you are suffering so acutely and so severely.
i was thinking when i was laying there, and the time does funny things. it distorts, where an hour will go by in minutes, and i think you doze off without even realizing it- the effects of all the pain meds, no doubt- or the time stretches out endlessly, and gives you time to torment yourself in your thoughts too. i was thinking about metaphors for pain. and they are all true. and i couldn’t think of any new ones. and i was thinking about how people who have suffered before me have really been able to encapsulate the experience and i am jealous in a way that i couldn’t think of any new way to express what was happening to me.
it felt like my bones were swelling and pressing outward (still does, but thankfully not as bad). my muscles are heavy and hard and knotted and my joints are stiff and rough and like when you try to screw the wrong size fitting on a screw and it goes on but it won’t tighten and you have some contact but it won’t hold and get the job done so it is just there but it’s wobbly and uneven. but it hurts. like that but not.
and i wish i could be eloquent and poetic in ways that would make people go,”oh wow- so THAT”S what it’s like” and they could see it without being there. because i don’t want any of you ever to be here. but i want you to know. because i want to bear witness for everyone who can’t speak up. because i don’t just want to lay in bed and suffer and then feel better and function and then get sucked into life and then be busy doing so many things that i just forget.
and i want my kids to know when/if they read this blog that mommy isn’t just a big pile of lazy good-for-nothing who lets them down and dumps her work on them. who doesn’t take them places and do stuff with them. who stays in bed and sleeps too much and gives them too many jobs in the house and sucks at homeschooling and sucks at mothering and sucks at being a role model of a wife. and just sits and types her blog and then goes back to bed to rest and takes too much medication and reads too many medical books and why can’t you be normal like other mothers?
right now all i want to do is feel better. i want to take my kids all the places they want to go and i want to have energy and be able to push past the pain and not feel like i just got shot in every part of my body. i want to be able to take my daughter to the dentist at 2 and not have to start getting dressed at 1 because it hurts so much to move. i want to be able to go buy milk at the store that’s 1/4 mile away without having to decide if it’s too much for me to handle (it is. but maybe i can drive there and have my kids run in. did i mention that i suck as a parent?). i want to go on a date with *h and not be so smashed with exhaustion by the time i get home that i am almost crawling into the house (did i mention that i suck as a wife too?).
by the way, i never use the word ‘suck’ in real life. i think it is totally unclassy and uncouth. i tell off my teenagers if they use it. just had to say that here for CYA purposes…
in any case, i should be grateful that the pain is letting up a bit, and i should be looking up to bigger and brighter things. but i don’t want to forget. because i think it’s important to remember.
does any of that make any sense?
Jan 31, 2012 @ 16:00:31
Oh my gosh. I grew up with a mother sick a lot of the time. The doctors could never find what was wrong (finally diagnosed with scleraderma and Reynaud’s disease WAY too late), so we ALL believed she was just making it up to get attention. I come to this blog fairly recently, so I don’t know what is wrong, but I know *h is NOT the father I had, and I know your children love you and understand. Trust your gut. You know your body better than ANYONE. If your doctor cares about you, then he wants to know when you have a question or a side effect. May the Creator fill you with healing energy.
Jan 31, 2012 @ 16:16:59
Good grief! I hope your pouring all that out will also be cathartic. Julie — you are amazing — the most interesting person I know of. You do not deserve all this misery. You deserve some reliable endorphins (mine kick in often, but not on cue, of course. Now THAT’S a terrific proposal for research biochemists!) I’d like to put you on our Cybershul healing list — don’t have your mother’s name.
I will pray in earnest and so will many on your list. Meanwhile, I SEND BUSHELS of LOVE and complete confidence that good times are imminent.
Jan 31, 2012 @ 16:37:53
BUGGER!!!
Hang in there kid. Anybody mentioned MSM? There are lots of references, but the ubiquitous Wikithing puts it thusly
http://en.wikipedia.org/wiki/Methylsulfonylmethane
If it makes you feel any better
:¬))
I don’t think you needed the comma @ “M&Ms”
M&Ms = more than 1 M&M
M&M’s= belonging to M&M
Long live the apostrophe preservation society. There are a lot of pillocks over here who think that you need a ‘ to pluralise an item. I see apple’s, pear’s, cherry’s, etc. My instant reaction is to say …Apple’s WHAT?
Apple’s skins? Apple’s pips? Apple’s stalks?
DUH?!? Do not compute.
Jan 31, 2012 @ 16:39:40
P.S. Doctors do NOT know it all. If they did they wouldn’t need to “Practice medicine” for so long.
:¬))
Jan 31, 2012 @ 17:03:45
julie —- i live with chronic pain …. ever since an accident on 29 november 1999 when someone wasn’t paying attention – slamming into my car when i was stopped at a stop sign. 3 fractured vertebrae in my neck, torn shoulders, spinal problems galore. 10 surgeries later … i still hurt …. all the time. some days? i do well at masking it and the percocet gets me through the rough spots. {oh, i use a pain patch 24/7 as well} some days, percocet doesn’t even touch the pain and i stay curled up in my recliner …. i haven’t been able to work consistently since july of 2000. {i’ve tried several times, and within months, i end up back in surgery. have been on disability now for 11 years}
anyway, years ago i wrote the following, as a means of trying to share, albeit with limitations, what pain is like:
PORTRAIT OF PAIN
No beginning and yet no end,
Back and forth it weaves
It’s sinewy tendrils
Twisted and knotted
Snarled and tangled
radiating out and invading
Every thought, every movement.
It’s presence always made known.
i also drew a picture, of a piece of rope/twine, looping every which way – and there is no beginning/no end of the strand – it is just endlessly weaving in’n’out, back’n’forth ………. i couldn’t transfer the image here.
what more can i say? other than ….. i understand your pain …. about as well as any can, in that i share in living with pain in all things i do.
Jan 31, 2012 @ 17:10:27
I do hope you’ll revisit this when the pain has subsided, when your M&M prescription has been filled and when, after using it, you realize you’re NOT in excruciating pain, nor are you throwing up in every recepticle in the house. I hope you’ll revisit this and re-read it and realize if the M&M works for you – my personal prayer – that you don’t have to feel like the woman that wrote this entry ever again.
Blessings Julie…Thursday is just around the corner. The bad meds/mojo will be out of your system. You’ll find the strength to go to the correct motor vehicle office and get your picture taken for your new WA ID…maybe you’ll even feel good enough to remember to comb your hair and smile that day. Then you’ll go get your prescription filled. Friday I’ll be looking for a report 😀
Jan 31, 2012 @ 18:59:42
((((((hugs))))))) Makes me want to cry to read what you are going through. I wish I lived next door so I could help…and by the way, YOU do not “suck” at anything – your body is having a very difficult time, and you are actively and intelligently seeking resolutions to that, and doing the best you can at any given moment. YOU are not your body. YOU are a wonderful, creative, loving, fabulous being living inside a body that doesn’t function optimally. More ((((((((((hugs)))))))))).
Jan 31, 2012 @ 19:14:23
You don’t “suck at any of those things!” I know when the pain is at its peak…heck even when it’s at is best it is easy feel like giving up but you have to keep on keepin on because you can get thru this. It has been really hard to hear you like this because I know what your going thru and it does “suck!”. As my Dad said when i had kidney stones “this too shall pass!” 🙂
Jan 31, 2012 @ 19:53:00
Oh Sweetie…I love you, and I am so sorry for you pain. You are wonderful! I just got on to your blog after Amber told me about your post (Sunday?) about M&M and my mom. Seriously girl. Reading this today, makes me cry because you are so special and I mean special in a very good way.
Jan 31, 2012 @ 20:38:52
I admire you so much to continue trying to meet life on life’s terms. My own mother had her problems health-wise but she explained to us what was going on and that she wished she could be in our lives more and how much she loved us. Daddy always tried to help her too. We understood they both were doing the best they could.
I wish and pray for you the highest and best good in this life.
And echo Ryan with my most favorite saying in life (other than my glass is half full), “this too shall pass (but not kidney stones!)”. Trust yourself and your judgement and research.
A friend in Texas – age almost 69. Take care and may the Force be with you (and Dr. Who also)…no offense made – just hoped to raise a smile….as they said in Spamalot – “I’m not Dead Yet”….
Jan 31, 2012 @ 20:50:46
You’re amazing in every single way and i wouldn’t be the person i am today if not for all the love and care you shared with me as a teen – i’m so sorry you’re having such an awful few days, hopefully you can look back on this v soon and marvel at how amazing you feel. xoxo
Jan 31, 2012 @ 21:28:40
As the wife of a really GOOD Doctor..one who CARES about his people…I REALLY think you should be placing a call to your Dr’s office and speaking to him about this.You understand what you’re experiencing well enough to be able to tell him and to describe it..as opposed to most people who can only manage “I don’t really feel very well” which…. unless your Doc is also a psychic..leaves you both floundering.You’re very good at putting to words what he needs to hear.If he fluffs you off..stand firm…this is your LIFE.If he doesn’t snap out of it..FIND another Dr…there really are caring ones out there and it’s worth it to find one.YOU are “employing” the Doctor…he “works” for you..most people allow their Doctors to get THAT out of sync..as if they are Gods who have deigned to “help” us.If you’re paying him…he WORKS for you and you’re entitled to him giving you his full attention.
Jan 31, 2012 @ 23:26:32
Oh my. When I read today’s entry, I remembered when I had a bout of dengue (sp?) fever. Hemmy’s poem is descriptive! I remember between throwing up the pain meds and crawling back to bed wondering if I would survive, it hurt so much I thought the pain might kill me. My poor baby(4years old at the time) and hubby- watching and being able to do nothing (other than be present-which was important in itself) to ease the pain.
Feb 01, 2012 @ 00:29:20
אל נא רפא נא לה
Feb 01, 2012 @ 01:39:20
Beautiful, annelark! I’m translating it “Please Hashem heal her.”
Amen אל נא רפא נא לה
Feb 01, 2012 @ 03:26:51
You are very eloquent.
I am sorry for your suffering. May you be healed.
Worrying about being a good wife and mother shows that you are.
Feb 01, 2012 @ 09:30:45
Ouch. ouch and ouch. Hang in there Julie. Remember your body is the same one that planted a garden, took on Oak Park and birthed *six* babies! It and you are very strong although it doesn’t feel like it right now. Bugger to brain injuries/virus’ in the first place.
Feb 01, 2012 @ 12:07:06
Just taken this “אל נא רפא נא לה” across to Google© translator, which appears to have cocked it up good and proper by translating it as “Do not heal her”
Which I SERIOUSLY doubt it said.
Feb 01, 2012 @ 18:06:30
I hate to put this in here since it is off topic..but it might allow you to forget things for a moment..someone else is having problems with Royal Oak..must be all the Detroit area “oaks” have “issues”?Can’t QUITE get their hands on the logic..or…they have all been inhabited by aliens…you decide..
http://www.examiner.com/dogs-in-national/city-orders-dog-to-be-destroyed-for-jumping-urgent?CID=examiner_alerts_article
Feb 04, 2012 @ 16:50:41
LOL! Love this!
Feb 07, 2012 @ 12:32:04
Yes, this totally makes sense to me. I’ve experienced that pain/distorted sense of time thing too. For me (and this may or not work for you), if you really concentrate on the pain and *try* to feel it, it’s interesting and somehow not as painful. Note that I cannot do this if I’m worried the pain is a symptom that something is trying to kill me. It’s only when I know the pain is ultimately harmless that I can concentrate on it and it will hurt less. Not that this lets me do anything other than experience the pain — I can’t for instance, concentrate on the pain AND drive the car (or, for that matter, read a book or watch tv).
Feb 07, 2012 @ 12:37:45
I’m happy to report this no longer the case. I’m a resident of Royal Oak and just called to ask about it (and complain as destruction for an accident is crazy). Information can be found on the SaveHeidi webpage and on the city’s.
Feb 08, 2012 @ 17:50:19
interesting- maybe later after the kids are in bed i could try that… i’ll try to remember to report back… thanks!