Well, it happened

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…and I’m a bit upset by it although I expect I shouldn’t be.

We’re still on vacation and in a big-o rental car.  Today W and I wandered off by ourselves to go to a movie.  Earlier this morning I had gone swimming and did my goal of 1/3 mile (hoping to increase that soon) and after breakfast, we walked around the marina looking at the boats and the fish.  Our plan was to head to an early movie and by the time we were ready to go, I was already tired and my muscles in the left leg were protesting a bit.

When we arrived at the movie theater there were four handicap spots available, so we grabbed one.  It’s not something I do often as I really don’t like getting looks from people when I use my placard, but W suggested it was a good idea considering how much activity I had already participated in that morning.

Anyway, we saw the movie and enjoyed it.  All was well.  After exiting the theater we went to get in the car and the gentleman next to us was helping his wife from a wheelchair into their car.  He was making noises in our direction, rolling his eyes, and just generally looking irritated.  I scooted lower in the car and waited for W to pull out.  Instead, he hopped out of the car and walked over to the man to ask if there was a problem.  I didn’t hear much of the conversation (I started crying shortly after this started out of frustration, irritation, and just general exhaustion).  The gist I got from W was that the guy basically asked if he was handicap and expressed irritation that people were getting and using placards that clearly did not need them.  Wayne explained (as calmly as he could) that I was newly diagnosed with MS.  He went on to explain that I had been very active that morning and we were concerned about pushing my activity too far.  The other guy said his wife had MS as well and was secondary progressive.  W says that he tried to get the guy to admit that he shouldn’t be quite so judgmental especially considering that his wife may have had invisible symptoms early on, but he was basically not listening.  We got the impression that a) it is possible that for him disability = wheelchair, b) he had been in many situations where there were no handicap spots and c) he may have been frustrated with the general state of life due to his wife’s condition.  For the record, she stayed silent the whole time.  I did as well until the end when I said (through tears)  and I had a spinal lesion and had ongoing trouble with me leg and that he should trust me, that this is the last position I want to be in.

It took me quite some time to calm down after the encounter.  W was angry.  I was sad, frustrated, and just generally overwhelmed.  Before I was diagnosed, I imagine I judged folks who didn’t look like they were having trouble but that used a handicap sticker or were on disability.  I can’t imagine doing that now and I don’t understand how someone in his position could continue to do that knowing what it means to have MS and how, sometimes, a walk through a parking lot can be just a bit too much.

Getting Good News

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Since mid October it has felt like every doctor’s visit was a dread-filled experience.  I left each feeling despondent and generally depressed.  For the first time, I got good news and I was honestly unsure how to process it.

W and I went for a three month Rituxan follow-up with the MS specialist.  I had an MRI that I was quite concerned about since the report showed a lesion at T2 that had not previously been present.  The neurologist sat down with us and the MRIs, pulled up the old scans and the new and told us that she didn’t believe there was a lesion at T2.  She could see it only on one sequence, so her guess is that it may be an artifact or something else, but if it were a true lesion, it would be more visible that it was.

That alone produced a huge sigh of relief from me.  Several weeks of mental anguish turned into nothing with a few words from the doc.  As if that wasn’t enough, she went on to say that she believe I didn’t originally have one long lesion as we had understood, but quite possible two smaller lesions and that both were improving.  Yep, improving lesions.  It was something that had been cautiously mentioned as a possibility early on when I started treatment, but we were warned numerous times that it may not happen.  So, in short, the Rituxan is doing its job.  It stopped the disease process and allowed my body the chance to begin to heal itself.  Kind of amazing if you think about it.

To add icing on the proverbial cake, my CD20 count is still negative.  That means that the Rituxan is not only doing its job, but it is lasting in my system meaning that I won’t have to treat again until June.

Of course, the little part in my brain immediately started talking to me and warned that I shouldn’t get too excited or too comfortable as the MS can rear its head anytime, but the doc shared with W & I that in clinical trials 90+% of patients didn’t experience a relapse if their B cells were kept in check.

I did ask about pain & fatigue control and was told “exercise, exercise, exercise.”  Per the doc, exercise helps pain control in all cases except traumatic injury.  That was new knowledge for me and pushed me back to the Y to take on swimming again.

So at this point I am focusing on staying positive, trying to be healthier, and hoping that my symptoms will begin to improve as my body continues to try to repair the existing damage.

Working through the Shoulds

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I am up ridiculously early for me.  My left calf muscle decided, all on its own, to seize this morning just before 5am.  Not just once – which is enough to wake me from a peaceful sleep and send me heart racing as I squirm and try to get it to loosen – but twice.  Just as I was starting to be able to breathe again, and the pain was receding, it came back with a vengeance.  Needless to say, as soon as I was able to walk on it again, I got out of bed.  A bruised, sore feeling and some burning is all that remains of the pain, but there’s no returning to sleep after that.

In my last post I was struggling with the What Ifs and the Shoulds.  Although I felt like I worked through the What Ifs by following them to their conclusion and taking the power out of the fear, the Shoulds were still hanging out there, dangling just above my head.  I used to do a slew of things before some random force outside of my control drew a line in the sand and said “remember the things you did before October of 2013?  Well, you’re not really going to be able to do all those anymore.”  It just seems crazy.  And unfair.    

Why are the Shoulds such an issue for me?  Well, it seems that Should is to black and white, too set in stone.  When you should do something, you either do it (success) or don’t (failure).  There is no room for an in between.  The fact that I can’t work over 40 hours without physical consequences became a failure on my part mainly because of the vocabulary I was choosing to use.

So, how do I combat this?  It seems easy enough once the solution was shared with me – simply replace the word.  As an example:

  • I should be able to swim half of a mile without feeling tired.
  • I would like to be able to swim half of a mile without feeling tired.

See the difference?  This was another enlightening moment for me.  Instead of feeling like a failure, if I swim only a quarter of a mile this week and then I’m tired, that’s okay, but next week I’ll try again.   Now my brain is off and running creating lists of things that I would like to do:

  • I would like to swim at least twice a week
  • I would like to practice yoga at least three times a week
  • I would like to continue blogging/journaling at least once a week
  • I would like to continue working as long as I can manage it
  • I would like to be able to do fun things on the weekend instead of spending it in bed
  • I would like to attend more events (ex: plays, concerts, etc)
  • I would like to travel again

From the mundane daily things to the big life plans, a simple change of words creates an opportunity for the goal/plan to be met halfway and makes the whole experience so much more positive and empowering. 

What to read more?  Other arguments for moving away from the Shoulds:

  1. Psychology Today
  2. Daily Good
  3. Mindful Communication

Battling the What-Ifs and the Shoulds

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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.

Multiple Sclerosis: Education Event

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Recently my husband and I had the opportunity to attend an MS educational event held in a near by city.  Since there is no support group local to us, it was literally my first time being around other MS patients in person (other than maybe in a doctor’s office?).  We estimated 150+ folks there.  We walked in, registered, and sat down at a table for a morning snack and I immediately started to cry.  My husband looked very confused and all I could say is “I am not alone.”  If I got nothing else out of that trip, it was such a relief to be in a large room with so many people who had MS and to see the various stages.  There were folks in a wheelchairs to be sure, some with canes, but many were walking around.  I didn’t see too many people my age (early 30s), but that didn’t bother me too much.

The event was sponsored by a drug company, so there was a healthy dose of infomercial-ness about it (as you would expect), but I also got quite a bit out of the speakers and the Q&A at the end of the main talk.  For those who were diagnosed long ago, these facts would have been clear or even common sense, but there were several rather enlightening things I learned that I wanted to share:

  • Although many MS patients (myself included) experience symptoms in a foot or leg, there is actually no damage to the nerves in that location.  The hands, feet, legs, etc are fine.  The damage is only occurring in the brain, spinal cord, and optic nerve.
  • The myelin damage (damage to the coating around the nerves) that occurs in the central nervous system slows the speed of transmission of signals.  This explains why sometimes you “tell” your body to do something and it will, but not quite when you may expect it to.
  • MS does not pre-dispose you to other illnesses (ex: sinus infections).  The disease itself is not marked by a “high” or “low” immune system, but an immune disruption
  • A relapse = longer than 24 hour acute new symptoms or worsening of existing symptoms
  • The MS popluation is generally broken down into sub types: 85% have Relapsing Remitting MS (RRMS), 10% have Primary Progressive MS (PPMS), and 5% have Progressive Relapsing MS (PRMS).
  • 50% of those with RRMS used to progress to Secondary Progressive MS (SPMS) without treatment
  • Relapsing Remitting MS is simply characterized by not getting worse in between relapses.  A RRMS patient may not get fully better (i.e. return to their original state), but they will develop a new baseline and will show no progress of disability until the next relapse (this was a HUGE light bulb for me as I have been waiting to return to my pre-attack state which may never happen)
  • MS affects 2.1 million people worldwide and 400,000 folks in the US
  • MS is most common in colder climates (further from the equator)
  • The risk if you have a first degree relative with MS is 1/40
  • “Invisible” MS symptoms make it hard for patients to look sick – fatigue is a good example
  • The first MS medication was introduced in 1993 (!! that is SO recent)
  • If you decrease relapses and decrease new lesions, you will decrease disability progression
  • Early treatment slows the course of MS

Hopefully there was a tidbit above that is as helpful or encouraging to other folks as it was for me.  We are attending another educational event in May and we are definitely looking forward to it!

Defining Acceptance

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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

A New Hurdle

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In early January after a month or so of feeling quite good, I started to have an increase in my symptoms.  My hip pain came back with a vengence and the burning pain at night was going from the heel of my left foot all the way up.  I was taking a much higher dose of gabapentin then normal just to be able to sleep and the pain was unrelenting.

At the same time, I noticed that I felt stiff during the day and started having trouble walking again.  My leg was heavy and I felt like it was vibrating (for lack of a better way to put it).  The muscles started cramping again at night and my fatigue during the day began again in earnest and I would “crash” around 3 – 4pm.

I thought maybe I had developed a UTI as I also noticed increased frequency, but I went to my gynecologist and the culture came back negative.  I didn’t feel like I was getting sick and I had been checking my temperature daily, but was not running a fever.

After a week or so of this, I finally called one of the MS nurses to ask for advice.  She called me back and asked me to come for an appointment.  My husband and I discussed it with the MS specialist in detail and she felt that what I was experiencing was most likely due to the prior spinal cord damage.  She suggested an MRI was the only way to know for sure, although she wasn’t expecting to find anything.  I agreed to go as I hoped it would put my mind at ease.

To my surprise, I received a call early the morning after the MRI from one of the MS nurses telling me that there was a new lesion on the MRI report, but that the MS Specialist was only able to see it on one sequence (I took this to mean it was small), but that my other lesions had improved.  They offered me steroids, but said they didn’t think it was 100% necessary.  I declined as they made me feel so awful last time and I figured we were so many weeks into this that I should be able to make it through.  I have not yet seen the MS Specialist to discuss the MRI although I am supposed to get an appointment in March (I’m waiting for a call with the date).

I’m unsure if my most recent experience was a relapse, but it stirred up a whole mess of questions and emotions that I had thought were somewhat settled in my mind.  I’ve spent a lot of time since worrying and crying.  I don’t know if it is normal to have a new lesion (even a small one) this soon after treatment.  I don’t know if this speaks to future disease progression.  Or maybe it means nothing?  I find the whole experience has left me feeling remarkably disturbed and seems to have set me back significantly in the acceptance process.

Starting Rituxan

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The decision to start Rituxan was fraught with worry.  I know it was recommended by the MS Specialist and she had both MS and NMO patients on it that were doing well.  She even offered us several stories of folks who were more mobile post Rituxan then before.  On top of that, she took the time to explain the mechanism in a way that I would understand.  All the same, I was concerned.

For those who are not familiar, Rituxan (Rituximab) is not FDA approved for MS (and likely will not be).  It is a monoclonal antibody that destroys B cells, a very specific cell that is a part of the immune system.  Although used for certain cancer treatments, it isn’t a standard chemotherapy agent and is used to treat several auto-immune disorders including Rheumatoid Arthritis. Progressive Multifocal Leukoencephalopathy is still a risk (and a frightening one) but those who are familiar with MS medications know that risk exists with other MS meds and the risk with Rituxan is much lower. 

My dad, who is a family doc, my mom, my husband and I all attended the appointment to discuss the medication choice.  We all left with a positive feeling, but I received a call later that evening from my father saying that he didn’t want to influence my decision, but thought it would be good to research the medication choice a bit more.  As it turns out, he had pulled it up on Epocrates and read all the warnings – enough to scare anyone.  Thankfully as a doc, he has access to other physicians and was able to speak to someone who administers the medication routinely in their office.  He was assured based on their conversation that they rarely saw the complications that were of concern – those were mostly seen with folks on other chemotherapy medications.  So, we made the decision to proceed.

Within two weeks of my discussion with the MS specialist about the medication, my husband and I found ourselves on the way to the infusion center for my first Rituxan infusion.  In spite of all the discussion, I was immensely nervous and my blood pressure was very high.

I went back initially without my husband so they could get me set up.  I got comfy in a chair, they wrapped my arm in a heated blanket (to help start an IV) and talked to me a bit about what was going to happen.  Vitals were taken, an IV started, and then my hubby was ushered in to sit with me.

They started by giving me Tylenol to take, then started infusing a steroid.  Once that was done, they gave me Benedryl IV.  I am incredibly sensitive to Benedryl and had to fight hard to stay awake, but at least I was more calm.  The nurses started Rituxan at a very low infusion rate and slowly increase it in stages, taking vitals at set intervals, and checking up on me frequently.  I dozed in and out for a while and then noticed – right around 150 – that my scalp was slightly itchy.  Then my ear started to itch, and then the right side of my face.  I asked Wayne to get a nurse and they came over and stopped the infusion.  At this point I was feeling hot and flushed.  We waited a few minutes to see if it would calm on it’s own, but the decision was made to give me more Benedryl and another steroid infusion.  We waited 30 minutes for the flushed and itchy feeling to subside, then restarted the infusion again at the lower level.  An infusion that should have taken 6 hours or so kept us (and the poor staff!) there for a total of 10 hours.  We were literally the last people in the building.  🙂

I was a bit nervous about the 2nd infusion based on the first experience, but the nursing staff explained to me that I likely experienced mild cytokine release syndrome and it is fairly common.  It meant the medication was doing its job and it likely would not happen again.  Sure enough, the 2nd infusion was much easier.  My mom was with me this time to keep me company and we were in and out in 6 hours with no need for additional mid infusion meds (just the typical pre-treatment Tylenol, Benedryl, and steroid).

After both infusions I was told that I could return to normal duties, but that didn’t happen for me.  In both cases it took me two full days post infusion of sleep to feel like a normal person again.  My body just felt worn out.  After those two days, my energy level started to return and was better than before the infusion.

The good news came a few weeks later when I received my lab results and my CD20 counts were zero! The tentative plan is to re-treat again in six months to keep those levels at zero.

Managing the Symptoms

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After all the doctors visits, MRIs, and lab tests, I was still left reeling a bit.  Instead of receiving a final diagnosis, I received a “it is most likely MS” diagnosis.  Again, difficult for someone who appreciates order and planning.  For my personal sanity, I approach everything as if I have MS as (again) this is the most likely scenario.

One thing they don’t tell you up front about high dose steroids?  They are really rough on the stomach and can make you a bit emotionally unstable.  I was a bit unstable from everything that was going on to begin with, so this became pretty extreme.  I began taking two omeprazole (prilosec) daily to settle my stomach (I had a previous prescription due to heartburn) and it would help my stomach some.

In the midst of all this running back and forth, the IV steroids had returned most of the feeling in my left leg and my balance, but a burning pain remained that seemed to get worse in the evenings and at night.  I remember the first day it happened and how confused I was.  I left work and went to my parent’s house and took off my sock & shoe.  I kept feeling my foot and was confused that it felt cold to the touch, but the inside was on fire.  My dad, a doctor, explained that it was likely neuropathy and that I would need medication to control it.  I called the on call doc and got my first gabapentin prescription.

On top of the burning, I was waking up most nights in horrific pain as the calf muscles on the left side would seize without warning. It would take an hour of so for the pain to reduce and my heart to stop pounding enough to go back to sleep.  Not the most restful situation.  Enter baclofen.

At some point in the course of lab draws it was brought to my attention that my vitamin D level was very low (18.5 at first check), so I was put on vitamin D supplements.

So, I went from a relatively healthy 33 year old to a somewhat unstable 33 year old MS patient in 6 short weeks.  I was previously taking one pill a day and am now up to 7 or 8 depending on my symptoms.  Life has definitely changed.

Seeing Specialists Galore

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Off I went armed with this question of my diagnosis to Rheumatology, Infectious Disease, and back to Ophthalmology again.  I started a USB flash drive of all my medical records organized by type and date as well as a book of medications, health history, and symptoms with dates.  Basically, I learned to become a better historian and rather than trust each doctor to have the records they needed, I would bring printed copies of anything that I thought would be relevant to them.

Infectious disease ordered more labs and after several visits basically told me that he could not point to a virus or infection to explain my symptoms.

Rheumatology said they didn’t believe I had a current Rheumatological condition, but that I should monitor a few things including the potential for developing future ulcers on my finger tips and that I should return if any new or unexplained symptoms arise.

Opthamology told me to continue the meds for my eyes and that they wanted to monitor me for vision loss every six months or so.  The meds were working in that I wasn’t experiencing vision issues, but when he looked into my eyes, he was seeing no improvement.

With all this knowledge, I returned to the MS Specialist with, well, nothing.  Apparently it was the information she needed, and on Nov 4th she spent an extended amount of time with me, my husband, and my parents to go over my MRI scans individually and to discuss what she believed was going on.  My NMO (aka Devic’s) test came back negative, but we had been cautioned in advance that it was possible to have a negative result and to still have NMO.

The short version is this: I most likely have MS; however, she cannot completely rule out NMO.  Based on this new and scary information, it was recommended that I consider treatment with Rituxan (Rituxamab) as it is a medication that should adequately address both situations.