Monthly Archives: May 2014

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

Six Month Anniversary

17 Saturday May 2014

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Well, it has officially been six months since my diagnosis.  My partial anniversary.  In the MS world, folks seems to consider you a newbie for the first couple years at least, so it doesn’t mean much from that perspective, but for me it was an event of sorts – a hurdle I have managed to overcome.  Although not wiser, I definitely feel more knowledgeable.  I have sucked up MS related information like a sponge and can rattle off a disturbing amount of information.  I am doing my best to keep up with the research that is available and periodically troll through scientific papers that I only partially understand just to get an idea of studies and outcomes.

A few pieces of advice:

1 – Register with the National MS Society.  Reach out to an MS Navigator.  I registered for this program as soon as I received my diagnosis and was amazed by the knowledge these folks can provide.  They started by sending me a list of doctors, email newsletters and connected me with the local chapter.  I even received reading material via mail including a book for the newly diagnosed that was a huge help.  Understanding the disease itself even in a basic way and hearing as many times as possible how different the experience is for each MSer is so very important early on.

2- Ask for help when you need it.  And you will.  Thankfully my husband stepped up without any requests from me and took over tons of stuff around the house that I was having trouble managing on my own.  I asked for concessions at work and they were kindly granted (As a caveat here, I work in a small environment.  For a larger employer, you may wish to seek advice and be very familiar with your rights before approaching an employer).  I found a counselor when I need one.  Although I continue to be slightly frustrated with some of my limitations, I am not afraid to ask for and receive the help I need.

3 – Find a good support group.  The National MS Society has a listing of local chapters and they should be able to direct you to a support group meeting near you.   If you don’t have any luck there, ask your neurologist or MS specialist or call a social worker through your local hospital.   Before attending make sure you know if care partners are welcome.  Some groups and events are aimed for patients only while others are only for the care partners.  Everyone will have their preference, but since W has been so involved since the beginning, I wanted to find a group that would allow us both to attend.

4 – Assuming you are a newbie, try to find a support group that is geared toward the newly diagnosed or those who are minimally impacted even if it is not the closest one to you.  I was grateful to learn this fact early on from an honest social worker who explained that some of the support groups are made up of folks who have had the disease for many, many years and/or are severely impacted.  Keep in mind that disease modifying therapies are relatively new medications, so many people with MS today went years without therapy.  I think if I walked into my first support group meeting and found most people in wheelchairs and/or experiencing and discussing significant cognitive issues, it would have been a very different experience.  I would have honestly been scared, a bit depressed, and less likely to share.

5 – Connect with others.  I felt so very alone during my diagnosis process.  Don’t get me wrong, I have a hugely supportive family, a wonderful husband and even have remarkable support at work.  All the same, I was the one going through the process and experiencing the symptoms and no one around me could completely understand that.  I’ve only just started to get over this by connecting with others through email, facebook and in person at events.  It’s funny because I am a bit of a hermit yet in this, I seem to need and crave interaction with others like me.

6 – Although I encourage connecting with others, choose those connections wisely.  Early on I joined every facebook support group I could find.  It didn’t take long to realize that the world is filled with many people who, when faced with an obstacle in life, respond negatively.  Don’t get me wrong, some negativity is natural.  I was depressed for quite some time and focused on the worst case scenario.  Then I brushed myself off with some help from W, my family, and a counselor and am trying to move on.  There is a huge difference in that and being negative all. the. time.  It isn’t healthy and it definitely isn’t helpful to be around.  So, I started departing facebook groups one at a time.  Some I left completely, others I just turned off so I am still a member, but I don’t see posts unless I go looking for them.  It helped.

Six pieces of advise from one newbie to another in honor of my six month anniversary.  It’s not cake, but it is my current version of a celebration and I hope others may find it useful.

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.