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Julia Will Be Fine

~ An unexpected MS Journey

Julia Will Be Fine

Tag Archives: acceptance

Celebrating (?) My MS-iversary

15 Wednesday Oct 2014

Posted by juliawillbefine in Daily Life

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acceptance, anniversary, daily life, ms, multiple sclerosis

On October 15th, 2013 I read my thoracic MRI report: “findings most indicative of multiple sclerosis with an enhancing active demyelinating plaque.”  I still remember sitting in the chair at my parent’s house.  I read it and read it again.  I cried.   This day is seared in my memory as the diagnosis day although I didn’t receive the official call from the neurology office until the 16th.

So much has changed over the last year.  I’ve read a ton.  I’ve absorbed as much information about MS as my brain could seem to take.  I’ve struggled through what this may mean for me in the future.  I’ve come to {mostly} accept the diagnosis.

I wish I were in a place where I could wax poetic about how much meaning the diagnosis has added to my life or how it made me more grateful or more kind and forgiving.  While I’m sure some of that is true, one year in I am still a bit angry and hurt.  I am far from a place of celebration.

Instead, I wanted to come from a place of hope and set some goals for myself for the years ahead:

  • I hope to be able to incorporate my diagnosis into my life without having my life become my diagnosis.  In spite of this blog and the many support groups I am a part of, I hope to retain some sense of non chronic disease normalcy
  • I hope to become settled enough in my diagnosis to understand that there will be good days and bad days and to relish the good days that much more for it
  • I hope to one day feel okay with the fact that parts of my body are not going to behave in quite the way I would like
  • I hope to learn my limitations and then learn how to push them just a little at a time so that I can continue to feel challenged and satisfied with life
  • I hope to be able to serve in some way as a resource/mentor to those who are newly diagnosed.  This kindness has been offered to me by so many wonderful people along the way and paying it forward would be the ultimate reward.

So while I am not celebrating per se, I am doing my best to look back on the past year in as positive of a light as I can currently manage and to look forward with realistic goals for what is to come.

The other leg was jealous?

22 Monday Sep 2014

Posted by juliawillbefine in Daily Life

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acceptance, autoimmune disease, daily life, education, ms, multiple sclerosis, numbness, symptoms

Since the beginning of my MS journey, I’ve always had trouble with my left leg.  I periodically “lose” it (it just goes numb and seems to disappear), or I get pins and needles, or (my favorite!) I get burning pain that can impact my toes, my leg, my hip, and sometimes all of it.

In late July I was in bed one night and realized that I had no feeling on the top of my big toe.  My RIGHT big toe.  I decided to approach it in as zen-like a state as I could and just shrugged and thought maybe it was the new shoes I had bought recently.  The numbness continued and started to move slightly so that it was numb around the nail bed and a bit along the inside of the toe.  I stopped wearing the shoes for four days.  No change.  Still, I refused to panic – typically my go to response.  I decided to monitor it to make sure it didn’t spread and to move on with life.  I mean, it’s just the big toe right?

The following three weeks were pretty stressful.  I had a few crazy days at work and wasn’t sleeping much.  I spent a bit too much time in a very hot building and noticed afterward that both feet were completely numb instead of just the left.

I stood up one day at home shortly afterward and started to fall.  My right foot had basically turned outward somehow without me noticing that it wasn’t holding me up.  This happened a few more times.  I started walking slower and focusing on my gait again and paying attention to the right foot to avoid walking on the side of it.  I tried my best to adjust, but it was challenging.  One of the docs showed me some exercises that would help to strengthen the muscle on the right side of the right foot which seemed inexplicably weaker then my usually troublesome left side.  I even woke up one morning early when my right calf muscle seized (this feeling may go down as one of the worst ways to wake from a deep sleep).

At this point I thought it may be good to get a neurologist involved.  Clearly the problem wasn’t just going away.  I called my local doc who was out of town and his assistant recommended that I call the MS Specialist.  They ordered some lab work and we waited for the result.

So, it turns mild UTI that I’ve had for ages has become significantly worse.  Apparently it is fairly common in MS to have UTIs.  I’ve had no symptoms that would make me think of that possibility.  I also understand the lack of symptoms to be a fairly common occurrence when patients have spinal lesions.

Long story short, I’m on an antibiotic and am anxious to see if the feeling returns in my right big toe once the infection is under control.   As stated in the article linked above: “A person with a UTI may experience a pseudo-exacerbation. Although no underlying disease activity exists, the infection and accompanying elevation in body temperature may cause other MS symptoms to flare up temporarily. Once the UTI is treated, however, these symptoms should subside.”

We’ll chalk this up to yet another learning experience?

How Life Has Changed

21 Saturday Jun 2014

Posted by juliawillbefine in Daily Life

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acceptance, daily life, expectations, ms, multiple sclerosis, spoonie, stages of grief

A disease called Awesome

Back in the day (ie last year), I used to spend time with others talking about a book I’d just read or a movie I watched.  We’d basically talk about meaningless stuff…and at the time it seemed to matter.  W and I used to love to travel to retail shows selling our soap and chat with people spending hours outside.  We would tend the garden or go for walks.

Flash forward to now and I’m amazed at how my life has changed.  I find myself in conversation with folks and I’m not sure what to say.  If they are fellow MS’ers, we chat endlessly about doctor’s appointments, our favorite MRI machines, wait times, new treatments, and infusion centers.  Non MS’ers?  I honestly draw a blank.  I can still chat about whatever TV show I watched recently or book I just read, but my reading list has adjusted to include a few more health-related books then I would like and any TV show discussion tends to morph as health enters the picture as in “well, after my last infusion I was on the couch for two days and watched an entire season of X” (<– insert favorite show here).  I’m afraid to do most retail shows now because I never know when I’m going to hit a certain level of exhaustion that just requires me to stop and I definitely can’t do much outdoors since I have developed the wonderful ability to overheat at a moments notice and tend to have trouble functioning when it happens.

Other-People-in-my-Age-Group

I feel like a person who is losing touch with reality.  Or maybe I feel like those around me have lost touch?  I would like to say that being diagnosed with a chronic illness brought new meaning to my life, and some days I honestly feel that way, but other days I just feel spent and a bit lost.  Like I became old overnight and left all the people my age behind.  I just don’t know how to relate to them in the same way anymore.  It sounds awful (and I promise I am not an awful person), but their complaints about relationships, daily life, and work can make me angry.  They just seem trivial when looked at from a different vantage point.

I know all my anger and frustration has nothing to do with the person doing the talking and everything to do with me and my choice to interpret their words in that way.  I know it is unfair of me and I imagine it is simply my grief once again manifesting itself in my life. I recognize it as something I need to work on and I hope that as I continue to improve illness can take a backseat in my life and I can return to the banter of daily life with a real, legitimate smile on my face.

For others with chronic illnesses who have been through this battle, does it get easier?  Any tricks to that may help to ease me back to the other side?

A New Stage of Denial

03 Saturday May 2014

Posted by juliawillbefine in Daily Life

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acceptance, daily life, future, learning, ms, multiple sclerosis

I’ve hit a funny place mentally with MS.  This is going to sound very weird to anyone who does not have the disease, but I feel pretty good overall and it is strange.  I imagine this means I have officially hit the remission period that is referred to in the name Relapsing Remitting.  That’s great news overall.  It means that I’m exercising, that my pain has diminished enough that I’m only taking meds at night and a lower dose then I was recently.  It means that I don’t feel like I need to sleep through every weekend just to recover from the week before.  I finally find myself forgetting that I have MS.  Although it plays a major role in my life, I’m finally able to focus on other things.

But all this also means that I hear that lovely little voice in my head piping up again and I find myself asking a million questions.  Maybe the disease wasn’t as aggressive as we originally thought?  Maybe I don’t need to continue my Rituxan therapy?  Maybe this will be how I’ll feel from now on?  And, my personal favorite: maybe I don’t really have MS?  Maybe the well-educated, incredibly knowledgeable doctors were all wrong?

I’m quite familiar with the little voice in my head that likes to send me down anxiety-ridden paths.  I am also realistic.  The reality is that I have amazing doctors and the Rituxan is doing its job.  It has halted the disease process.  My body is focused on healing instead of attacked itself.  I am swimming more which helps to continue reducing my pain levels and also helps to minimize the fatigue.  Things are good.  Rather than allowing myself to enter a new stage of denial, I need to enjoy and celebrate this period of remission and recognize it for what it is.

 

Battling the What-Ifs and the Shoulds

16 Sunday Feb 2014

Posted by juliawillbefine in Daily Life

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acceptance, daily life, expectations, future, ms, multiple sclerosis, should, what if

My recent mental craziness centers around two types of problems: the What-Ifs and the Shoulds.  As an explanation, for the last however many weeks since my upsetting MRI, I’ve been playing a not so fun game in my head that goes something like this:

  • What if I wake up and can’t feel my legs or arms?
  • What if I am confined to a wheelchair?
  • What if I start to experience cognitive decline?
  • What if I can’t keep doing my job?
  • What if I get to the point where I can’t work at all?

These panicky questions are often followed by or related to a series of self criticisms:

  • I should have been able to work over 40 hours this week without feeling exhausted
  • I should be able to work during the week and still do fun things on the weekend
  • I should have been able to walk the loop at the park without my ankle locking up
  • I should have been able to swim for more than a half mile before feeling tired

Basically, my brain is running through all my current fears about my disease.  I am a control-oriented person and this disease has removed a large part of that control from my life.  It has also caused me to re-think my definition of myself and my expectations.  I used to be someone who loved to work.  Stressful situations energized me, long hours didn’t faze me, and I always knew I could push myself a little harder.  That is clearly no longer the case.

I could feel myself getting more and more sad as these thoughts ran through my brain and I knew it was counter productive.  So, recently my husband and I sat down and talked through my fears:

  • What if I wake up and can’t feel my legs or arms? – We would go to the hospital.  We talked through which hospital and who would be notified.
  • What if I am confined to a wheelchair? – We live in a single story home, so although there would need to be changes, they wouldn’t be too extreme and we discussed the few updates that would be needed.
  • What if I start to experience cognitive decline? – I joined Lumosity shortly after my diagnosis.  Right now I have only one brain lesion.  My hope is that the lesions will stay minimal and if I continue playing Lumosity daily, I would (in theory) be able to notice a downward trend very early & discuss it with my doctor.
  • What if I can’t keep doing my job? – We discussed the possibility of me working limited hours or working one day a week from home to try to continue in my current position as long as possible.
  • What if I get to the point where I can’t work at all? – This would be a worst case scenario for me as I have realized that much of myself is wrapped up in my job and doing that well.  All the same, we looked at a budget and talked about what it would mean to us financially for me not to work.

Although the conversation was uncomfortable, in a short time we were able to talk through each of the large concerns I have and come up with rudimentary plans or at least early thoughts for each.  It doesn’t change my level of control, but makes me feel more confident that if any of those situations presented themselves, we would manage to work our way through it.

So, I’m left with the Shoulds and I’m still not entirely sure how to handle them.  I am setting up expectations for myself that are not necessarily realistic and I need to come to terms with that.  I am very afraid that I will switch from the woman who worked full time, got a masters degree and simultaneously started a home based business to a woman who sits at home and complains about what she can no longer do.  Instead of thinking about those fears, I need to try to refocus on little victories.  Every day that I manage to go swimming or do yoga should be a considered a success regardless of the distance or time.  Every day that I work, even a short day, is a good day.  If we manage to do one fun thing every weekend, that should be something to celebrate even if it means that one day a week is spent resting just at home.

I imagine this is all part of acceptance and I’ll get there with time, but it is still a frightening journey.

Defining Acceptance

09 Sunday Feb 2014

Posted by juliawillbefine in Daily Life

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acceptance, ms, multiple sclerosis, stages of grief

Since my last little setback in January, I have started seeing a counselor.  My hope was that he might be able to assist me in coming to terms with what is going on with me.  I want to be Julia.  I don’t want to be MS and I am afraid that is the direction in which I am heading.  I also don’t want to be “woe is me” all the time.  It is tiring – for me and for all those around me.  It is not helpful, and it is definitely not healthy.  So how do I do that?  In my mind, I needed to find my way back to acceptance.  

Most people are familiar with the Kubler-Ross model aka the five stages of grief that she wrote about her in 1969 book, On Death and Dying.  The five stages as she described them are denial, anger, bargaining, depression and acceptance.  Kubler-Ross later suggested that these stages to be applied to any personal loss whether that is a divorce, loss of a job, or, as in my case, a chronic illness.

To be clear, these stages are not necessarily experienced in order.  Folks jump around a bit until they (hopefully) reach the end point of acceptance.

I’ve experienced my share of each stage:

Denial – I wrote off most of my early symptoms and created rational explanations for them even after they started to pile up.  Then I expected one of the doctors along the way was going to laugh and say “ah, we’ve found a simple answer for your problem!” I would only need to take a pill and then return to life as I knew it.  Neither did me any good other than protecting me when I apparently needed it.

Anger – This is a hard one for me as I rarely get angry and can’t tell you the last time I yelled about anything.  All the same, I have spent time frustrated and punched my husband’s arm more than a few times (with his permission of course) as I tried to process through my thoughts.

Bargaining – When I was going through the diagnostic process, I was laughing to a friend that I would never have thought MS was the diagnosis I wanted, but when faced with a choice of MS versus NMO, I felt more knowledgeable and more comfortable with the idea of MS.  That time period is a bit of a blur for me, but I imagine I had many conversations with myself that involved “if it could just be MS….”

Depression – This is the stage in which I am afraid I am stuck.  I am sad.  A lot.  I go through my normal day the best I can, but sometimes out of the blue I just loose it and will start crying.  This happened early on, but I chalked it up to the steroids and the shock of everything that was happening.  I seemed to have returned and can’t quite extricate myself.

Acceptance – This is the stage that eludes me.  My counselor challenged me this week to define what acceptance looks like to me.  I’m still not 100% sure, but I know that it has to come with some degree of emotional stability.  It would be nice to think that it comes with a bit less fear as well.  I would like to return to my day to day life with minimal changes and be able to function.  I understand that some things may need to be adjusted and I would like to learn to live with those changes without feeling guilty or embittered by them.  I want to feel confident in my choice of this blog name.  Every day won’t be great and some days won’t even be good, but ultimately I want to know that Julia Will Be Fine.

There was a recent viral Facebook post that I borrowed to post here as it came across my feed just as I was working through this problem in my head and it seemed ever so fitting.

Michael J Fox - Acceptance

Reading/Links:

Living with Chronic Illness

The Five Stages of Grief for Chronic Illness

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