Tag Archives: grief

family. again.

i’ve been working on response to my mother since i told her a couple of weeks ago that i would make other plans for thanksgiving. but how do you tell your mother that you aren’t giving her the silent treatment, that instead you are trialing cutting her completely out of your life? i keep hearing a refrain from the gawler retreat in my head, the one about putting all of the people in your life that are your critics, your naysayers, your negative nancies onto a figurative bus and driving it off a figurative cliff. but how does one do that to thier family without feeling like you are betraying them. like you are breaking a promise? and so i have not put out any sort of response.

the silence so far feels right– its a relief to not have my hopes dashed over and over again. to not be rejected anymore. to not yearn for a relationship i will never have. but that doesn’t mean it isn’t painful. when i was in school i thought that once i got my license and a good job i could help my family. i could pay for the house repairs that my mom needs, hire her a dog walker, take her on trips. i could use my skills to facilitate family discussions to address things like my brother’s drug addiction and my sister’s chronic pain and psych issues. i could help repair some of our broken past so that we could be a family again.

i sit here this holiday weekend thinking to myself “there is still time, i can call her and make plans to see her for the holiday.” but the truth is, i would just be caving in to my guilt, my sadness, my aching desire to have a cohesive loving family. and if i did that it wouldn’t change anything. i would still be disappointed every time she didn’t call when she promised she would, every time she flaked out of milestones a mother should want to share with her daughter, every time it was clear that avoiding me was easier than being honest with me.

i can’t make sense of it and maybe that’s the part that has me turning in circles. i am her only child who is somewhat successful. i am her only child who is gainfully employed. yet, it seems that the better i do the more she rejects me. i have questioned myself over and over in my head when i am quiet. what else can i do? am i sure that there is nothing left? should i call her, she did get sunday off (out of guilt and motivated only by my declaration that i was done waiting for her to call me back and would be making other plans)? am i sure that i am not just angry and giving her the silent treatment?

i am without a doubt angry but more than that i’m at a loss. what is left of this relationship? a long time ago i learned that the only way i could forge a relationship was to let go of expectations of what a mother is “supposed” to be and face the reality of what is. but she does not want or is not capable of what i want.

that’s what this thanksgiving helped me realize. i should be thankful, but i’m devastated instead.

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2 years. alternately titled: “fuck all this shit”

i don’t want to call it an anniversary because those are meant to be celebrated– its been 2 years today since i was diagnosed.

the last week has not been an easy one. i found out that i am full of active inflammation and demyelination. as a result of this constant ongoing stress of my over-active immune system i have felt very fatigued. while the doc i saw was eager to dish out info and options for medications with dangerous and deadly side effects, she wasn’t exactly open to doing anything at ALL about the fact that i don’t want to get off the couch…ever, really. i am now taking a full cabinet’s worth of supplements and green smoothies in an attempt to feel somewhat energetic. its sort of working.

aside from that its been a week of harsh realities. last monday i did a 53 mile ride. i rode in the mid day heat till it was nearly dark and at the end of it i had two thoughts: 1) that triple chain ring was totally worth it; and 2) there is no way i am riding the 100, or even the 75. there just simply isn’t enough time to get the rest of my training in so i will be riding the 40 mile instead. i feel so disappointed in myself. i have never truly believed that i wasn’t physically able to do something because of MS until that moment, 6 miles from the end of my ride when it was getting dark and my legs were screaming in hot burning pain that i came to terms with the fact that i simply didn’t have the energy. i rode those last few miles feeling totally defeated.

if i had felt better i could have trained more. i’m trying to be kind to myself and not furious. i’m trying not to call myself lazy, and weak, and a quitter. but that’s how i feel. i know i can’t compare myself to others and i know that even people without MS would struggle with this ride. i just wanted it so badly. i have been uncharacteristically tearful over it, and in general this week.  i refuse to think that i can’t ever ride a century just because i couldn’t this time. i know i can and that i will. but for now i have to accept that i couldn’t. that having MS limited me. i am finding that incredibly hard.

in the midst of personal failure, i started working full time. i now commute 20 miles (roughly 45 minutes) each way m-f. it’s my first job as an OT and i’m doing ok with it. i feel like i’m winging it a lot at this point. but i know thats just how its going to feel for awhile. i know my stuff, but it’s the first time i’m truly being asked to use it. all of the nuances of treatment the other therapists have down pat are brand new to me. i come home exhausted and starving each day. but it’s one step closer to my goal of traveling so i’ll take it.

i found out that today is the birthday of a good friend. she passed away from colon cancer last march. i hadn’t realized until today that her birthday is the day i was diagnosed with MS. it seems fitting though. she was one of my biggest supporters. we named our waves to wine team and designed our jersey in honor of her. so it feels full-circle to me that we share this day.

Rel and I walking over golden gate bridge

Rel and I walking over golden gate bridge

its been a hard week, but even so i’m doing pretty well. i’ve been relapsing for over 4 months now and my EDSS score is still a 2. i have 3 new lesions which brings my total up to somewhere in the 15 range and i still walk normally. i can still do everything i need to within a day with almost no limitation (except for fatigue!!!!!). i know how lucky i am.  even though i’m feeling sad and angry i still feel grateful that i am doing so well 2 years after diagnosis.

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9/5/11

this is an email i wrote on  9/5/11. one year ago. in a few days i will have been diagnosed for a year. seems like a lifetime. 

so i guess i should begin with how a MS dx was put on the table. i have been having back and shoulder problems for almost a year and i have had tingling in my legs for about 6 months. recently, i reinjured myself at work and because i now have tingling in my hand, the docs ordered a MRI. thats when this all began. the MRI goes on at length about the multiple lesions in my cervical spine and one in my lumbar spine (“confirm MS dx clinically” “further workup advised”). i was referred to a neuro who examined me and then ordered more MRIs that included ones of my brain.

i just finished those on thursday and i am now stuck in a waiting game to find out what the neuro thinks. my uncle is a nurse practitioner in a chronic pain clinic and when he found out about what was going on he called me and wanted to know about the MRI findings. he said he expected them to find brain lesions as well. he apoligized and said he has worked with many patients with MS and given that i have multiple spinal lesions he was fairly sure i would have them in my brain as well.

i am hoping that this will be something else. even when my neuro wouldn’t speculate as to the cause of the lesions, only saying that MS was the most common reason for someone my age to have spinal cord lesions i didn’t lose hope. it was hard to hear it from my uncle, knowing that he does have a lot of experience working with patients who have MS, but i still was not thinking it could be true. however, yesterday i went to visit my mom (a critical care nurse for 30 years) and we were talking about the MRIs and i mentioned that my uncle thought they would find brain lesions. she quietly said, “i do too, honey.” she averted her eyes. at the time we were eating brunch at a restaurant and i instantly lost my appetite. it was SO hard to hear that from my mom.

last week was probably one of the hardest ones of my life. in addition to going through marathons of MRI’s, i was basically ambushed by the drs in the occupational health clinic at work (original MRI was through workers comp). i had two doctors going on at length about how my symptoms were from MS, asking me questions about how i felt, telling me they were going to drop me as a patient because i have MS (even though my neuro has not even confirmed this yet…how do they know? i guess MS patients cannot also have a work-related injury??). i felt completely demoralized after leaving the office. an hour of two doctors interrogating me, teaming up and working off each other to make me feel as awful as they possibly could about my future. i went back up to my unit and cried in the break room…and i am NOT a “crier.” i almost never cry.

if i am really honest with myself then i have to admit that i have had some vague symptoms for quite some time. i just thought that was me. i was seeing a chiropracter and he discovered that i have a positive tandem romberg test (balance issues). at the time, he was trying to convince me that i had this because of a gluten intolerance. but i suppose i can now safely attribute that to the spinal lesions. i have always blamed the chiro for the tingling i feel in my legs. he adjusted me and then later that afternoon i first felt tingling in my legs. now i wonder if the spinal lesions were the culprit and it was just coincidence that it started after the chiro session.

the neuro cautioned me against hot baths, etc. and in direct defiance of what she said, after my appointment i came home and immediately ran a hot bath. when i got out i was shaky and didn’t feel well. same thing happened to me this weekend. i went up to the mountains and had to shut the a/c off when i was driving up a steep incline. by the time i got to the top i was shaky again, and by the end of the day i was completely and totally exhausted. that was yesterday. i slept about 10 hours last night and have done nothing but veg on the couch all day and drink 4 cups of caffienated tea and i am still ready to fall asleep. i also have been having such a hard time with memory. if i answer the phone at work and the caller gives me thier name, by the time they tell me who they would like to talk to i have forgotten it. maybe its just stress from everything going on, but it seems like it gets worse everyday.

i am meeting with the neuro on thursday and i feel like the closer it gets, the harder it is to think about anything else. anytime i am quiet, my mind wanders to MS. the countdown is agonizing. gah! my final year of school…seriously?!

anyways, sorry for going on forever…i’m just trying to manage all of this and get through the week without falling apart.

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just the start

one year ago, k. and i boarded a plane to puerto vallarta. i didn’t know it then, but my life would change on that trip. i came down with shingles, which caused a MS flare, which caused chronic tingling in my legs that took 6 months to go away. eventually, it led to my diagnosis.

i had no idea what i was walking into when i got on that plane. quite literally and figuratively, i was leaving behind my life as i knew it. the cascade of events that would follow changed me.

forever.

this is just the start of an entire year of anniversaries.

since that spring break trip (my first and only in a shamefully L O N G college career) i can feel the difference in the me before diagnosis and the me after. last semester feels like a dream. it is the bridge between the two me’s–the months where i transitioned between them. it’s not that i don’t believe in the same things that i did before, or that i can no longer relate to the hopes and dreams that i had before diagnosis. it’s just that life in general feels different.

last semester was 4 months of sadness and fear and loss. and now i’m past the initial shock and i no longer have tingling legs (although i still do get tingling occasionally when walking). but i haven’t lost that sense that sometime soon the other shoe will drop. i am learning that i will probably always feel that way.

maybe next year i can learn to be ok with that.

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What a Year (give or take)

i never could have imagined that my 30th year would be so challenging. then again, i never really took the time to imagine what 30 would be like at all so how could i have had any idea?!

it all started with a bike wreck in september of 2010. it didn’t seem like a huge deal at the time. i had some shoulder and back pain but my bike, my laptop, and my brain all seemed to be in perfectly good working order. i went about my business and threw in some PT to get my shoulder in good condition again. i began yoga to strengthen my shoulder but after a couple of months i could no longer sit in the chairs at school without back pain. chronic, aching back pain. and so the spiral began.

i had trouble walking after i would stand. i still had shoulder pain. i could no longer ride my bike or work. my doctor put me off on a 6 week medical leave so that i could focus on PT and not aggravate my injuries. spring break came and i took my first ever trip to mexico with a close friend and my partner. shortly after arriving, i had fatigue that i couldn’t shake and an itchy rash on my back that was slowly spreading. a week after i came back i was diagnosed with shingles. i was then prescribed antiviral pills in addition to muscle relaxers and pain meds.

i began to see a chiropracter three times a week plus PT twice a week. i went back to work as soon as the shingles were healed wearing a back brace and with chronic tingling in my legs. nothing seemed to change the tingling and between the chiro, PT, dr’s appts, school, and work, i barely had the energy to celebrate and enjoy graduating college in may of 2011. i spent the rest of the summer shuffling back and forth between dr’s appointments.

somewhere in the midst of that i learned about a friend’s stage IV metastatic colon cancer. i am still trying to process her very serious condition. it is all so unfair.

at the end of july 2011, i reinjured myself at work helping a patient into her car at her discharge. i have never been in pain like that and i hope that i never will again. more pain meds, more steroids, more addictive opiod medications. i now have quite the collection: ativan, valium, flexeril, vicodin…my 82 year old grandpa takes less medications than i do.

workers comp ordered an MRI of my neck and low back in august of 2011 because ever since i hurt myself on the job, in addition to a worsening of my low back problems, i also had tingling in my right hand and pain in my neck and shoulder blade. at my next appointment the workers comp doctor went over the MRI results with me. given all of the symptoms i was having, especially the tingling up to my waist (used to only be in my legs) i was pretty sure that the MRI would show many disc herniations.

it didn’t.

instead it showed that i had multiple demyelinated lesions in my spinal cord. the radiologist’s impression was multiple sclerosis. all i could think about then was the woman who came into my unit who was unable to walk and had such bad tremors in her arms she couldn’t feed herself. she was 37. that could be me.

what. the. fuck.

how could the last year be so fucking bad?? its as if the people i care about were falling apart in front of my eyes and i couldn’t do a thing about it. i felt so betrayed by my own body and so numb from bombshell after bombshell being dropped about my own health and that of my friends and family.

it was an incredibly tough year. i tingled everyday. i couldn’t walk for more than 10 minutes. i had doctors appointments and workers comp nonsense to deal with in addition to a graduate program and the demands of working on the floor in a hospital unit. i saw two neuros who both agreed that i had MS.

i was so fatigued i would cry myself to sleep. i felt like everything in my life was uncertain. i was half in disbelief that i really had MS and half terrified because it was true. i still have those moments, the “i can’t believe this is my life” moments.

after a fair amount of “what the fuck” time, i got myself together and began to think about what i wanted out of this life. being diagnosed was forcing me to consider that i was not infallible. a notion that had not been challenged thus far in my life. i could do anything i wanted at any time! consequently, there were many things that i put off because i felt like i could get to it later, but lately i have been aware that my brain is a time bomb. that i am a time bomb. in that sense, there was a new urgency in my life that i didn’t have before. what if i can’t travel later? what if i lose the dexterity i need to learn to play guitar? what if i am no longer able to walk and therefore unable to hike the trails i have been wanting to hike for so long? any of those things could happen, or they may never happen. i have no way of knowing. i decided that from now on i have to focus on leading my life with purpose and stop thinking i’ll get to it later.

i also discovered that there was a part of me that was in complete awe of what was going on in my body. it was like there was a little kid in my head watching a science experiment exclaiming “cool!” i hope that doesn’t come off sounding really egotistical or anything…

for class one semester, i had to read the memior of a man who was paraplegic from a car accident called “life on wheels.” after his accident, he discusses how others were wondering if he was planning to kill himself, while he was busy being fascinated with how his new body worked. i can relate to that. maybe i’m just a total nerd looking at her own body as the biggest, baddest case study she’ll ever work on, but in a way its how i feel. i am fascinated with knowing more.

since being diagnosed, i finished a whole semester of grad school under unbelievable amounts of stress, worry, and medication side effects. i’m proud of that. my grades were all A’s except for research ( i struggled with this one because of the MS). the tingling one day disappeared and only shows up occasionally and is extremely mild. i found out that i have an incredible support network around me of friends and family that truly care about me, they are my cheerleaders. and if there is one thing that i appreciate the most so far about having a chronic, progressive disease with only marginally successful treatment options its that it helped me realize that fact.

and there you have it: the story up till now complete with a sappy ending.

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