Category Archives: stages of grief

It Gets Better

This morning I was sitting here sipping a cup of tea and I realized that I don’t feel MS-y anymore. Like, my morning didn’t consist of my eyes and arms shaking from fatigue or me feeling like I was made out of lead every time I tried to move my body or get out of bed. I also realized how little I actually think about having MS on a day to day basis.

Maybe that is a small thing to someone who has not experienced chronic illness but it’s huge to me. It’s not just about my physical health improving, though it did. Mentally I feel in control of my life again. Emotionally, I feel balanced. I can (cautiously) dream of a future without an overwhelming sense of fear, sadness, or grief.

When I think back on the last 4 years only one word can describe the first year in it’s entirety and most of the second: hell. It was a living hell.

Some of you are living that hell right now and my heart goes out to you because I will never forget how awful it was. But I’m not writing to rehash those painful times or tell you that my life is perfect and symptom-free (it’s not) I’m writing because today is a milestone. A day that I actually feel good and positive about my life with MS and I want you all to know that it does get better.

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a month

folks, this is what rock bottom looks like. truly. even being diagnosed wasn’t as low as this. i know it can only get better, at least that’s what they say, whoever they are. at any rate, i’m still trying to find the words to tell my mother how painful it is to be blown off and rejected by her over and over again. i’m also still trying to find a way to come to terms with the fact that my my family will never act as a family. my heart knows that’s the truth, but it wishes it different anyways. even though i am depressed and hurt and full of impotent pain there is a voice in my head telling me to ride this out. and i’m trying hard to listen.

i vacillate between feeling overwhelmed and incredulous at how bad things truly are. i wonder how things got this way. as a child, i never realized how bad it was until i was older– i thought everyone’s family was like mine. sometimes i think my family can still be like everyone elses. and sometimes i just hurt so deeply i think i might split in two.

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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family

sigh…

here goes.

i have been secretly reading blogs of people living with various chronic illnesses and cancers for probably 10 years now. i never talk about my late-night slice of american pie with anyone, but i have thought long and hard about why i come back to read their stories. aside from the obvious courageous and inspirational messages and the opportunity to support others these sites offer, i think i come back because i have an opportunity to witness family support and love. i get to live vicariously and take mental notes on how to be a “normal” person with a happy, loving family. it’s a little bit of fake it till you make it, i suppose. with a dash of green envy thrown in.

most of my 20’s were a series of arguments with my mother over my brothers drug addiction. she believed that i was making it up to hurt them both.she was at times physically abusive and growing up was neglectful and disinterested in us. even now, i can hear the resentment boiling just under the surface. the dichotomy of parenthood. i think she loves us as much as any other mother but we are her scapegoats for unrealized dreams.

whatever the case, parenting by avoidance, denial, and guilt did not result in happy, well-adjusted adults. my sister has chronic pain, depression (with suicide attempts) and no insurance. she can’t work and filing for disability is difficult for someone her age, so she exists in limbo. my brother is riding the revolving door of the prison system and i think he has given up on life. i suppose in comparison i come up looking like roses.

which makes me desperately sad. the hurt runs so deep, i can’t even describe it. i want so badly for everyone to do better and to rise above their circumstances. it is heartbreaking to watch, but i don’t know how to help them without jeopardizing things for myself. if there was one thing i truly wish for in my life it would be for my family to be healed from their drug addictions, chronic pain, mental illness, and traumatic experiences, so that i can heal too.

exacerbation

the neuro confirmed last wednesday that i have had an exacerbation. i came home, crawled into bed and watched netflix for the rest of the night. K tried to be supportive but i shut her and everything else out. i know it could be worse than a mostly numb left half of my body and a week’s worth of dizziness, but i am still struggling to get right with it. i am thankful its not worse, but i’m also angry, frustrated, scared, and sad. JUST when life was finally feeling good and normal i lose feeling in my left side and i’m dragging my exhausted ass through the week.

AGAIN.

it all feels scary again, and i hate it. i hate that there isn’t a damn thing i can do about it except wait it out and hope that this exacerbation didn’t take too big of a chunk of neurons out with it.

i think that’s what i resent most about this stupid disease– the impotence that comes with it.

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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sugar coating leaves a bad taste in your mouth

whoever says MS doesn’t define them is a liar. MS affects every part of my life! every part. even the private ones, the parts i work very hard to compensate for. it affects how often i see my friends, whether my house is clean, where and how often i shop for groceries, and what job i will take in the future. it is something that i have to consider in every aspect of my life. now tell me, how does that not define me? how does that not shape the decisions i make–the decisions that form patterns and habits and roles? the decisions that become actions which are consciously executed by my body and mind and are visible and observable by those around me.  how is that not then, a definition of what i do and therefore, who i am?

i get really tired of hearing such ridiculous mantras from people. MS does define us! let’s just learn to be ok with that. let’s just learn how to grow in this definition instead of wasting our time trying to convince ourselves that it doesn’t exist.

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anger

feeling frustrated with the american life lately. overwhelmed with grad school. hit my wall 2 weeks ago and since i haven’t fully recovered. when i think about my life all i can think about is how i am failing at it right now. i am failing as a partner, as a friend, as a student, as an employee. failing at all of it! it should NOT have to be this way to get through school!

today i looked into switching over my health insurance to the school plan so that when i cut down my hours to per diem at work i won’t be uninsured and won’t have to pay nearly $1000 for COBRA each month. i was willing to give it a shot, even knowing that i would likely lose my doc’s and have to start all over again with a new neuro…until i inquired about prescription coverage. $500 a YEAR. that’s it. wouldn’t even cover half of one month of medication. useless!! how is this legal?!

if you know someone who thinks that universal healthcare is an infringement on thier rights, you can refer them to me: a gainfully employed, non drug-addicted, intelligent, and hard working person who has had the misfortune of being handed one shitty diagnosis. then that person and i can have a nice chat about whose rights are being infringed upon here.

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me and you vs. us

for me, being diagnosed changed ALL of my future plans.

at the time i was diagnosed, my partner and i had only been together for about a year. things were good but still at a point where we could take it down many different roads–were we partners? were we just lovers? was it growing into more or receding into less? i had no idea if she would want to stay, i mean, its a pretty hefty diagnosis. so i had no expectations. for her it seems there was no question, or least not one she needed to deliberate on for long–she stayed. right now we are struggling. i am not sure how much the diagnosis plays into that. i’m sure she gets tired of feeling like MS dictates what we do and when we do it. i really try for it not to be like that. i really try to continue to be the same person i was before…but the truth is i’m not.

a lot of times she doesn’t understand how i’m feeling and there are times i really wish she could be more supportive and less quick to assume that i am intentionally doing things to upset her. but then there is also a part of me that remembers how hard it must be to love me, someone who faces every day with the knowledge that all bets are off for my future, and by proxy for hers too if she stays. i have to remember that she is adjusting to this too and she, for better or worse can’t feel what is going on in my body.

it must take incredible amounts of empathy to be a partner to someone who has a chronic illness.

and i’m trying to remember that she is doing the best she can too. and that most of the time she is very helpful and understanding. i just wish i knew how to make things more normal.

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