Frustrations and Pain

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Normally, I start the day with little pain.  I wake up tired but feeling fine overall.  I force myself out of bed, eat something small, and take pills.  Once the adderall (W calls it vitamin A) starts to kick in, I’m all set to go and can make it through most of my day just fine.  From there, my pain level fluctuates depending on what I’m doing, how high my stress level is, and who knows what else (the phases of the moon?  A Julia voodoo doll that exists in the world?  Who knows…)  Typically my pain increases starting in the afternoon and progressively gets worse until it is alleviated by my larger med dose I start taking when I get home in the evening.

Instead of the situation above, I’m now waking up feeling much like I’ve been in a car accident.  Every muscle and joint in my body aches.  I don’t want to move, but laying still doesn’t help either.  W has been kind enough to massage my shoulders and legs the last few mornings which helps (or at least serves to distract) but the pain returns shortly afterward.  The only thing recently that seemed to really help was an infrared lamp my massage therapist used during my treatment.  The warm on my back was so soothing, that I am honestly considering buying a lamp of my very own if this continues.

I’m afraid to call my doc.  I’m concerned he’ll think I want pain meds (I don’t) or he’ll suggest steroids.  I just had my last infusion set in July and had a gram of solumedrol with each infusion.  I really don’t want another round of steroids – they just mess with my system.  I feel awful & I gain weight.  I get overly emotional.  All the tell tale signs.  Unfortunately if this continues, I may not have any choice.  My pain level is not abating, so the frustration increases.

I don’t want this to become my “new normal” when I was just starting to adjust to the previous one.

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Status Update

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It has been ages since I posted (almost a year – my goodness!) mostly because I’ve been doing well (or well enough) and I’ve been incredibly busy between work and the business and life in general.  I keep intending to return.  So, here I am.  Every thing is much the same as my last writing I believe except that my questionable cervical lesions turned out to be not questionable at all.  I have a lesion at C2 and a small brainstem lesion as well.  How did we find out?  Well, I started having difficulty with my hands for the first time.  Burning that would run from my shoulders down, weakness that would prevent me from opening a jar or can, and cramping in my forearms.  When my forearms get tight, my hands tend to pull in – like I’m making a first – and I have to focus to keep them open.

I visited my MS specialist early this month.  As part of the visit, I asked about my potential for improvement.  He was kind, but told me that it wasn’t likely at this point in treatment and this was probably my new baseline.  I’m two years in, so I knew “better” was not likely, but hearing the words out loud was hard.  Sobering.  He suggested instead that I need to focus on better overall health and exercise to maintain brain volume and to feel better in general.  We had discussed exercise in past and he emphasized that I need to be doing some form of it every. single. day.  (ugh)

Even before this visit I had started walking.  W and I have been going to the hospital up the road from us that has a nice 1 mile path.  It wanders around two ponds and provide sufficient distraction that it doesn’t feel like a chore.  There is even a tree toward the end that always makes me smile.  The location of the hospital used to be a large farm (cows and all).  Very few of the original structures remain, but this one was left alone.  Talk about overcoming adversity.
Tree Overcoming Adversity

And we went to the beach.  I adore walking on the sand and communing with the waves.  We walked six miles one day.  Just came out to the beach, took a left, and walked until we were tired.  Then turned about and came back.

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We rented chairs on the beach and after our walks, we would sit under the umbrella and watch the waves.

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So, I’ve definitely been trying to get exercise.  I installed the Stepz App on my phone* and I’m tracking what I manage to walk each day.  W pre-paid for 6 months at the Y for both of us so I could start swimming again.  I swam a bit while staying at a hotel in DC recently and it was a good reminder of how much I enjoy it.  Unfortunately, the Y’s pool heater is broken (again) and cold water + my muscles is a very bad mix.  I’m hoping they will be back up and running next week.

W has also been trying to cook as many vegan meals as time allows.  I bought a copy of Thug Kitchen’s cookbook.  Their cookbooks aren’t for everyone (*ahem* let’s just say that they play up the Thug angle quite a bit), but the recipes are amazing.  For anyone who may want to give it a shot: be prepared to spend some time.  W tells me each recipe is taking him an hour or more.  The end result is worth it, but you have to have the time to set aside.

So, we’re moving forward.  I can’t fix the damage that has been done, but I can focus on losing weight and exercising more in hope of feeling better overall.

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*Related note: I would recommend Stepz.  It allows you to put in your height and weight and recommends goals for you each day.  Plus, it calculates your mileage more accurately.  As a vertically challenged individual, five thousand steps for me is not the same distance as five thousand for my husband.

It’s All Relative (Literally)

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Picture the scene: We’re on vacation.  Dinner for six, outside at a resort in Hilton Head.  Sun and sand.  Warmth.  There have been drinks.  Lots of food.  Dessert and coffee has arrived. The conversation proceeds as follows:

Dear & Loving Mother: “Yuck.  The coffee isn’t hot.  There’s nothing worse than luke-warm coffee after dinner.”

{Insert awkward & overly long pause here}

Sister: “I don’t know….how was that spinal tap Jul?”

It’s all relative, right?  🙂

Celebrating (?) My MS-iversary

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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.

Decisions, Decisions

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Prednisone induced insomnia gives a girl a lot of time to think.  As I’ve been working through my feelings about my recent experience cheating on my neurologist, I’ve been trying to get myself to a decision about where to go from here.

I prefer to approach problems analytically, so I started trying to break it down in terms of numbers.  Who has been in practice longer?  Who has been specifically focused on MS longer?  How often do they publish?  How often do they appear to speak?  Do they hold positions outside of their practice?  Do they seem to be held in high regard by the community?  Had other patients reviewed them online?  Basically I googled myself silly.  Two tabs, one for each doc, and I went to town.  After a bit I realized just how crazy this was (did I mention that I’ve not been sleeping?).  I can’t quantify my doctor choice based on their Google results.

Instead, I think it comes down to this: the practice I was going to is busy.  Maybe too busy.  They have a huge patient panel and not enough docs & nurses to handle everyone.  Of course, to complicate matters, I just received word through a local support group that the practice has added a new MS Specialist.  Like in the last two weeks.  I’m not sure if that fact would change things for established patients or if the practice would simply take on more new patients then before.  They are a large practice affiliated with a local teaching hospital, so I don’t think there is any shortage of folks trying to get in the door.

Although I loved the MS Specialist I was seeing and the staff in her office and although I was immensely grateful for everything they did for me leading up to and right after diagnosis, my needs have changed over the last year.  Rather than being completely focused on the panic of the new chronic illness and how we treat for the long term, I now need help with managing the day to day-ness of the disease.  I need symptom management.  I need support.  And periodically, I just need someone to tell me that what I’m experiencing is a concern and why.  I don’t want to feel brushed off.  Or that time is only available for patients with more serious issues.  I want those patients to take priority, of course, but I would hope that at some point someone could also get around to addressing what is going on with me.

W is going to attend the next appointment with the new MS Specialist at the end of the month and unless he has any resounding concerns, I think the decision has already been made.

One major decision down, fourteen thousand little ones to go.  Life should get a bit easier now right?

Fun with Prednisone

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Fun with Prednisone

Although I was treated with IV Steroids last year, the whole experience is a bit of a blur as I was in the midst of being diagnosed two new chronic conditions.  I remember being overly emotional and having trouble sleeping, but that’s about it.

This is the first time I’ve been on high dose oral steroids (200mg tapered over 15 days).  I feel like my insides are buzzing.  I’m having trouble sitting still in spite of my seizing muscles.  And I’m eating.  Like everything.  All the time.  It goes without saying that sleeping has become a bit of a challenge.

Related note: my husband loves it!  The laundry is done, the house has been tidied, blog posts have been written, I reorganized my health binder, and am planning to sort through two boxes of stuff that I have been meaning to get to for about six months.

So apparently my relapse has an upside?  🙂

I cheated on my Neurologist

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hypochondria

I still worry about being a hypochondriac in spite of having been diagnosed with three chronic conditions that are based on imaging and/or biopsies (ie ones that I could not have possibly made up if I tried).  I’m not sure why this fear hangs with me, but it does and I just can’t seem to shake it.

Remember my recent post about my right leg?  Those brand new symptoms started way back at the end of July and I’ve been dealing with them ever since.  After placing several phone calls to my MS Specialist (who suggested I call the local neurologist) and the local neurologist (who was out of town at the time and suggested that he wanted to know what the MS Specialist wanted to do), I was feeling more then a bit frustrated.  The MS Specialist ended up ordering a Urinalysis (UA) with culture after I explained that I couldn’t get a local appointment to see if I had a UTI (which I’ve had…for ages already, but they said not to worry about it before).  After I had my urinalysis done, it took the office over a week to call me back with the result and start me on antibiotics.  As soon as I finished the round, I went back for another UA & Culture and got a call back three days later asking if I still had UTI symptoms.  I never had UTI symptoms and I reminded her of that fact via phone.  She said that was great, and apparently that was the end of it.

While all this was happening, the numbness in my right big toe was very slowly moving up and I was having to focus a lot on my gait.  My toes started randomly cramping. In spite of stretching at least before bed if not several times a day, I was waking with seizing muscles.  Then my left leg joined the party.  I starting having burning pain up to my hip during the day and muscles spasms while I was at work – both are not typical for me.  I do experience those symptoms, but usually only in the evening and at night. One particular muscle cramp in my left leg wouldn’t release regardless of what I did (I tried stretching, heat, massage, etc).  It was making it very, very painful to stand or to walk – the cramp/knot was along the outside of my left calf, but the pain was/is going all the way into my thigh.  And my fatigue returned.  It didn’t feel quite as intense as my first experience, but it was bad enough that I had several days where I wasn’t sure it was safe for me to drive.  I continued going to work, but worked even shorter days then normal to try to offset how I felt.  I understand that I was not loosing my eye sight and that I was still mobile – there are plenty of people in worse situations.  Since the neurologists didn’t seem concerned, I figured I needed to suck it up and keep going.

After a particularly bad day, I went to see my PCP.  She ordered physical therapy hoping they might help with the muscle spasms and gave me Zanaflex to replace the Klonopin I had been taking at night as she thought it would do a much better job of preventing night time spasms.  She gave me a shot of Rocephin in hopes that it would clear up the last of the UTI and also ordered some general lab work to make sure nothing else was awry.

I left feeling a bit better, but still not good.  At one of the MS events I went to, I heard an MS Specialist speak who was planning to move to my area.  On a whim, I called their office to ask about an appointment and they said they could see me the very next morning as a new patient (!!).  Anyone who is familiar with MS Specialists will understand how rare that is.  I took the appointment, deciding that a second opinion never hurt anyone.  I was honest with his office when I made the appointment and with him when I went in that I wanted a second opinion about my MS overall and to get his thoughts on my current symptoms.

All told, the appointment was good.  We went over my MRIs together in detail and he showed me each lesion including two on the brain and my long spinal cord lesion.  He did find a new lesion on my January thoracic MRI that the original MS Specialist I saw didn’t feel like were present (she specifically said that I had no new lesions which was contrary to what the radiologist wrote in his report).  He felt comfortable with the treatment plan I was on, but shared a few things I didn’t expect and that were shocking and a bit hard to take.  I had previously been told by both a neurologist and an MS Specialist that I had a particularly aggressive initial presentation of the disease and that it needed to be treated very aggressively in response.  Although he recommends the Rituxan highly and wouldn’t change that decision for me at all, he didn’t feel that it was strictly necessary.  His experience has been that patients with a small number of brain lesions at diagnosis do relatively well long term.  He said Rituxan is one of the best meds out there, so if my insurance would agree to pay for it, it would be his choice as well.  Additionally, he said there was no reason for me to accept all my current symptoms as realistic expectations of my life as I had been previously told.  Instead, he suggested several different medications I could try that would treat symptoms.  All this was shared without any type of prompting from me.

Although the difference in opinion above is something I’m going to have to spend some time processing, most interesting for the current moment was that he said I was clearly experiencing a relapse even after looking at my UA & Culture result.  He said that the infection may have triggered the relapse, but it definitely was one.  He used the definition of relapse that I had heard/read before:

“An exacerbation of MS (also known as a relapse, attack or flare-up) causes new symptoms or the worsening of old symptoms. It can be very mild, or severe enough to interfere with a person’s ability to function at home and at work. No two exacerbations are alike, and symptoms vary from person to person and from one exacerbation to another. To be a true exacerbation, the attack must last at least 24 hours and be separated from the previous attack by at least 30 days. Most exacerbations last from a few days to several weeks or even months.” – National MS Society

Further, he said that it means there is inflammation on the central nervous system and, yes, a new lesion.  He cautioned that the lesion may not be visible on imaging and I got the impression he didn’t believe imaging to be the be all and end all of MS.  He said the spinal cord is packed too densely and lesions can be small that although there may be a lesion, we may not be able to visualize it.  He shared that there are a subset of neurologists who choose not to treat relapses including the MS Specialist I currently see, but that is not his approach.

All that said, he felt it was mild enough that IV steroids weren’t necessary.  So, I’ve started high dose oral prednisone (fun!) as well as a few new medications.  After I am through the steroid and I start all the meds he prescribed, it will bring my med count up to eight medications per day + vitamins.  And that doesn’t include my infusion and the infusion related meds. I’ve started the steroid and am waiting patiently for some relief, but I was warned that relief may not be immediate considering how long this has been going on.  I’ve finally been able to sleep over three hours at night thanks to the Zanaflex and another med the new doc gave me.  He wants me to try a higher dose of Baclofen then I was previously taking (it didn’t work for me last time) in place of the Zanaflex, so I’m hopeful that will offer more relief.  I also have an order for a brain MRI since it has been a year since my last one and I’m waiting for the PT referral from my PCP.  He would like to review the brain MRI with me and discuss Rituxan for Dec.  If we move in that direction, it would continue to be two infusions (one set) every six months.  When we walked me to the front at the end of the lengthy appointment, he paused and said if I have any questions or experience any new symptoms, I should definitely call.

So, I’m conflicted.  And feeling guilty.  Like I cheated and betrayed my original doctors.  On the other hand, it was SUCH a relief to hear that I wasn’t imagining what was going on (an ongoing concern of mine) and to think that I may be able to see an MS Specialist who is actually accessible.  I don’t want to be accused of doctor shopping.  And I hate being dishonest.  Right now I have appointments with both doctors in October and I am tempted to go see my current MS Specialist and have an honest chat with her so she knows what I did and why.  In the meantime, I have to decide if I’m switching doctors for good or returning from whence I came.

Has anyone else faced this awkward choice?  Any advice offered would be greatly appreciated.  You can comment below, or email me directly at juliawillbefine@gmail.com.

The other leg was jealous?

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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?

The Ice Bucket Challenge

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Facebook-land and the Twitter-verse has been rampant with videos and posts about the Ice Bucket Challenge.  I’ve been seeing quite a few posts where folks complain about the pervasiveness and even some (highly disappointing) posts in a few of the MS support groups that seem to begrudge the attention and funds being brought to ALS as a result. As someone who is dealing with MS, I now know several people with more aggressive forms of the disease and I know it can be a nasty – there’s no question – but ALS is terrifying.

In case you haven’t yet seen it, I encourage everyone to watch this video (the first part is pretty ridiculous, so I skipped forward to start the video at the part that I think everyone should see):

I found this video incredibly moving and it shows the quick, frightening progression of ALS:

I personally am glad to see so much attention brought to a disease that clearly needs it.

…oh the symptoms

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There really should be awards for getting out of bed

My pain is increasing as of late.  Not entirely sure why.  Honestly, I don’t think I’ve had MS long enough to be able to say.  It may be the crazy heat/humidity we’re experiencing, it may be that I have a small virus.  It may be the after effects of the Rituxan, or it may just be the ebb and flow of the disease process to which I am still adjusting.

I became keenly aware of it over the last two weeks.  At first it started with the numbness in my left foot returning.  It’s not necessarily an unpleasant feeling, just very strange and off putting – it has been ages since that symptom bothered me.  I tried shifting in my chair at work.  I tried getting up and walking around thinking it was just asleep for whatever reason.  Nope.  It was just numb again.  I had to remove my shoe as the tightness was bothersome (odd, I know), but I just tucked my shoe-less foot under my desk and finished the day.

I am intimately familiar with what happens next from prior experience. After the numbness comes the pain and I spend my time wishing the numbness would return.  It starts at my left hip and travels down to the numb foot.  Then the muscle cramps start in the left calf.  Sometimes I get an involuntary twitch in my left foot.  I just kick for no good reason.  Finally, my muscles all over get tight – shoulders, back, etc.  Everything feels “off” and just uncomfortable.  I can get through the work day okay, maybe because I’m distracted, maybe because I’m up and moving around.  It gets worse as soon as I sit down at night and the pain increases the later it gets.  By the time I am ready for bed, it is beyond aggravating and I can’t sleep.  I’ll lay in bed and try to read.  I lay on one side and then the other.  I’ll try my back.  Nothing is comfortable at that point.  I am a girl who needs her sleep and this is when the frustration really sets in.

To compensate for the pain, I upped my Gabapentin.  Not a problem, except that I wake up groggy (read: drunk) in the morning.  At least I am able to sleep.  One night I had to up both the Gabapentin and the Klonopin as I was laying in bed and could feel the muscles contracting in my calf and the foot twitching.  Again, slept wonderfully, but woke up and wasn’t able to function well in the morning.  Not great when I have to drive 30 mins to work.  Obviously increasing the meds is not good solutions for me.

Since I don’t know why this is happening, I can only try different things and see what works.  I am trying to be more careful about my diet and am wondering if my stomach symptoms can be tied to the MS symptoms.  I am taking the meds earlier in the evening hoping that I can sleep longer and wake up able to function. I also decided that I need to swim again.  Pain or no pain, I think it is the only way I’m going to feel better long term.

With that in mind, I swam three times this week.  Short visits each time, but I was happy with the effort and glad that I did it.  I always forget how much I like being in the water.  By the time I finish, I’ve “lost” my whole left foot (can make getting out of the pool challenging), but it’s worth it.  I am also committing to more yoga practice.  I’m crossing my fingers that between the two, some of this pain resolves and I am able to concentrate on life again.

My heart goes out to anyone who experiences chronic pain.  I’m a few weeks in and already feeling a bit nutty.  I want to feel better and I want to sleep, but I don’t want to drug myself to get there.  I am always open to suggestions – do others have ideas of battling chronic pain while maintaining your sanity?