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Frustrations and Pain

02 Friday Oct 2015

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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.

Status Update

28 Monday Sep 2015

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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.

Decisions, Decisions

08 Wednesday Oct 2014

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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?

I cheated on my Neurologist

30 Tuesday Sep 2014

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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.

How Life Has Changed

21 Saturday Jun 2014

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A disease called Awesome

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

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

Other-People-in-my-Age-Group

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

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

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

Rituxan infusions Galore

07 Saturday Jun 2014

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This week I had the first of two Rituxan infusions.  My last treatments were in Nov and Dec of 2013 and they tend to aim for every six months.  I apparently have little recollection of the actual experience last time.  By that I mean: I was feeling so bad MS wise at the time, that I associated most of the physical portion of that experience with my MS instead of the infusion itself.  W suggested that I document it a bit better this time so I’d remember more going forward.  Smart man.  🙂

On Wednesday morning we headed to the neuro clinic bright and early for a quick visit with the nurse practitioner.  Rather than an actual medical visit, this is a pre-Rituxan visit and basically is to ensure that there are no concerns that should stop them from authorizing the infusion.  We talked briefly about my recent GI problems and she decided that it was likely unrelated.  We even discussed that if my CD19 & 20 counts stay at zero, we may be able to consider just one infusion every six months instead of a set of two going forward.  She checked all my labs and took another urine sample just to be safe.  She listened to my lungs, my heart, and felt all my lymph nodes for swelling.  At the end it was decided that I was okay to proceed (yah!) and we headed out.

We arrived at the CMC Infusion Center a few minutes after my actual appointment time because of the neurology visit.  They were gracious and just ushered me right in and gave me a big, comfy chair.  Kathy, one of the amazing nurses there, came over and wrapped me in blankets and placed a heating pad over my arm.  Not only does this feel lovely, but it helps them to get a good vein the first try.  I tried to relax while I warmed.  After a few minutes she returned and started the IV.  She took vitals (my blood pressure was high, but it is always high when I go for an infusion), asked some medical questions, and we were off.

The infusion begins

Before the Rituxan infusion, they give pre-meds.  The goal is to head off any possible side effects.  Each doctor/infusion center seems to have their own pre-med protocol, so yours may be slightly different than what I describe.  We started with some fluids, and then she switched over to 100mg of hydrocortisone (solu cortef) which is used to reduce inflammation.  Once it was started, Kathy popped out and allowed W to come back and sit with me.  The whole pre-W experience was only about 30 minutes.  The steroid takes about 30 minutes I believe.  Things get a bit fuzzy here for me as the meds take over a bit.  When the steroid is done, Kathy flushed the line and then gave me two tylenol to take (this reduces the likelihood of fever/chills and headache) and started the 50mg of IV benedryl (to reduce an allergic-type reaction).  This burns a bit going in, but in spite of that, this is when I really float away.  I am extra sensitive to Benedryl.  On the rare occasion I have to take it, I take half of a pediatric dose if that gives you any idea.  So, after the IV, I spend about an hour with my eyes closed.  Not quite sleeping, but definitely not functional.

Kathy flushed the line again after the benedryl and then the Rituxan begins.  This is administered very slowly to begin and then the infusion rate increases over time.  Every 30 minutes, Kathy would visit to take my blood pressure and my temperature and ask if there is anything I needed.  They are incredibly attentive and it is much appreciated since you are basically spending the day with them.  We always bring our own snacks and drinks, but they do have a little snack area with sodas and crackers and will order lunch for anyone who is going to be in the infusion center during lunchtime.

When the Rituxan is done, they do a quick 3 minute flush, remove the IV, and we were ready to go.  All told we were there 6 hours – much better than the 8.5 hours of my first infusion.  A few related notes: although tired at the end, I was ready to be up and around.  It’s hard to sit still that long regardless of how comfy the chair is.  Second: Rituxan can drop your blood pressure.  I came in very high mostly due to being nervous about the infusion (143/101 or so) and when I left I was 105/64.

W & I got in the car and headed home.  We stopped on the way at a natural food store, the Organic Marketplace, that has a little cafe and ordered food to go for dinner.  I decided to walk upstairs to the store and pick up a few things.  Bad idea.  The walk up two short flights of stairs left me hot, dizzy, and faint.  I’m not sure if that was a blood pressure problem, or I was just way more tired than I expected.

When we got home I took a quick shower and asked W to stay in the bathroom with me just in case I got dizzy again.  All was well.  I put on PJs and crashed in front of the TV.  We ate dinner, watched a few shows, and went to bed.  At that point I was feeling fine, just tired like I’d had a very long day at work.  The only thing I noticed was some residual soreness running from my arm where I IV was up into my shoulder.

I slept for 12 hours.  Not typical for me.  Lately I’ve been lucky to get 7 hours straight.  I woke up feeling worn out and sore.  I think those with MS will understand, but it just feels like I pushed myself a bit too hard yesterday and I’m out of spoons.  My body is achy and it takes a ton of energy to do anything.  My big goal is simply to get something small to eat so I can take my daily pills and then crawl back in bed or crash again on the couch.  I’ll probably spend most of the day sleeping.

As a side note, all this excitement happened on my birthday.  W was wonderful and ran out to pick up a special birthday lunch and some cupcakes so that we could celebrate in spite of the fact that I spent the day strapped to an IV pole.

So, although technically you are able to return to work the day after an infusion, for me that is just not the case.  My body needs an extra day to rest before returning to normal life.  This isn’t the case for everyone – in fact, based on feedback on the Rituxan facebook group, this varies pretty wildly.  Some folks go right back to work whereas others feel a bit rough for a week or so.  W tells me that I typically don’t start feeling like myself again until day three.  I scoffed at him when he told me that last week, but my memory has been refreshed and I completely believe him now.  I head back to the infusion center again in 15 days for the second in this set.

After all is said and done, I am still immensely grateful.  Some folks give themselves injections daily.  Others take pills that can have strange side effects.  This med is only administered once every six months.  Not only that, it is keeping my MS completely at bay and allowing my body the time to try to heal the damage that was previously done.  Who can ask for more than that?

Update 6/11/14: I ended up taking an additional day off work that I didn’t plan (yep, W was right!).  I had the infusion on Wednesday and wasn’t feeling like being up at all until Sunday, so it took me a full four days to get my energy back.  Today is Wednesday one week later and I’ve felt great for several days other than a small amount of residual soreness through my shoulders and legs.  I did notice that my MS symptoms have flared a bit in the week since the infusion and I had to increase my gabapentin dose again to compensate.  Since I had previously weaned myself down to 300mg/day, increasing wasn’t a problem at all.

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.