Category Archives: Daily Life

What are the odds?

24 Saturday May 2014

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{There is some over-sharing below…you have been warned}

So, around the end of March I started having GI issues.  I attributed it to a bug that I may have caught travelling although no one else with me got sick.  After a week or so, the symptoms died down a bit and then returned with a vengeance.  I was having good days and bad days, but mostly bad.  I had to stay in very close proximity to a bathroom regardless of what I ate.  It got to the point recently where I just stopped eating during the day to avoid having trouble while driving or while at work.

About five weeks in I was pretty convinced I was going a bit nutty.  I’m a girl who likes her food.  No food = grumpy Julia.  My PCP ran some tests but nothing was found so I made an appointment with Gastroenterology.  After a visit that included a lengthy discussion of symptoms, they ordered an EGD and colonscopy.  Fun.  The visit was Friday and the procedure was set for Wed.

The procedure went just fine.  The prep was definitely the worst part.  Afterward, the doctor spoke with W and told him that everything looked normal and that there were no signs of ulcerative colitis or crohn’s disease.  All good things except that it still didn’t explain my symptoms.  He said they took a series of biopsies and would be in touch in a week with results.

To my surprise I got a call from the GI’s office on Thursday to give me results.  The nurse told me that the biopsy showed lymphocytic colitis.  Normally they want folks to try Pepto-Bismol tablets for 6 weeks to try to see if it alleviates symptoms, but because of a complication with another medication I am on they ended up prescribing a corticosteroid.  I didn’t get a lot of information via phone and was told to take the meds and follow-up in six weeks.  The office is clearly not yet familiar with the Julia way of processing by absorbing as much information as humanly possible about what is going on.

So, I have microscopic colitis.  It simply means that the colon looked normal, but under the microscope they are able to see inflammation.  It is considered an Inflammatory Bowel Disease and can be caused by a variety of things or it may be auto-immune.  I was thinking a bit about this overnight and started wondering about the odds.  So far I have collected the following:

Multiple Sclerosis – prevalence rate of 100 in 100,000 or 0.1% of the population*.

Idiopathic Intracranial Hypertension – prevalence rate of 1 per 100,000 although that number increases to 20 in 100,000 or 0.02%** when you take into account that I am female and overweight.

Microscopic Colitis – prevalence rate of 100 per 100,000 or 0.1%***.

My conclusion?  I need to play the lottery.  I mean really, what are the odds?

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* UpToDate Article: Epidemiology and clinical features of multiple sclerosis in adults

** Intracranial Hypertension Research Foundation

***GUT: An International Journal of Gastroenterology and Hepatology

Another First: Support Group Meeting

10 Saturday May 2014

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Since Oct of 2013, W and I have experienced a ton of firsts.  My life has revolved a bit around weirdness and unexpected things and every once in a while it just still catches me off guard.  I may pause while taking my nightly pills and wonder how I ended up this way, or giggle strangely sitting in a specialist’s office when I look around and realize I am the youngest person in there by at least 30 years.

With all the crazy firsts, there have also been plenty of amazing ones.  Last month, W and I attended our first MS support group meeting.  It was something that I wanted to do, but things kept getting in the way.  The closest meeting to us is about 45 minutes away and is only held mid week in the evenings.  As I was battling fatigue, it was hard to convince myself that this was a necessary step.  We’re lucky enough to have a support group that is specifically for the newly diagnosed, so this time we told ourselves we would go regardless of the circumstances, and so we did.

I can’t express enough how wonderful it was to be in a room of other MS patients who were just talking about whatever was going on in their lives.  Some talked about medication, others about frustrations with doctors or new symptoms and overall stress.  The group leaders are a husband/wife team who are amazing and took the time to make sure that everyone in the room talked even just briefly.  I am not one to speak in public, even in a small group setting like this, but they encouraged me to talk about Rituxan as they have not had anyone in the group on that particular medication.  I spouted off an abbreviated version of my story, a bit about the medication and my experience with it and answered some questions.  I even managed to get a few giggles from folks while I was talking.  Everything is confidential, so I felt totally comfortable sharing and honestly am incredibly excited to go back.

A New Stage of Denial

03 Saturday May 2014

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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.

 

Travel is hard

06 Sunday Apr 2014

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Since we spent our vacation money this year on MRIs, doctors visits and meds, my parents were kind enough to allow us to tag along on their vacation and even offered a companion ticket to cover one of the airfares.  So, we headed down to Florida with them recently to stay in the Fort Myers area.

I have been doing fairly well controlling pain and battling fatigue as long as I am mindful of getting tired and stop in advance of crashing so I wasn’t terribly worried about the trip.

It took me getting to the airport to realize that travel can be much harder than I expected.  My dad dropped us off at the door with the bags while he headed off to park and we went inside.  We checked most of the bags and carried on only camera equipment and my laptop.  All was well until we got through security.  Airports make people slightly scattered and I found myself having to pay extra attention to what was going on around me.  Folks stop, turn quickly, put things down without warning, and change direction.  I felt like I was in a human version of paperboy (that reference was brought to you by the 80s).  I found myself getting very tired very quickly and my ankle started to hurt from all the sideways movement and extra walking.

Since I have a US Airways card, I was given automatic early boarding.  Once on board, all was well until we landed.  I purposely sat in my seat until most everyone was off the plane so I didn’t have to stand longer than necessary or fight folks for space.  We headed to collect our bags and the walk was long.  Again, my ankle started hurting and my calf started to cramp a bit.  We then found out that the rental car pickup was on the other end of the airport.  I honestly wasn’t sure I could do it, so W headed off and borrowed a wheelchair.  I carried the heavy bag on my lap and off we went.

It was officially my first time being in a wheelchair by choice and it was just as humbling as you would expect.  All the same, I was immensely grateful that the airport made it available.

Well, it happened

30 Sunday Mar 2014

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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

23 Sunday Mar 2014

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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

22 Saturday Feb 2014

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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

16 Sunday Feb 2014

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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.

Defining Acceptance

09 Sunday Feb 2014

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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

05 Wednesday Feb 2014

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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.