Spoonie Life

03 Thursday Jul 2014

Posted by in Daily Life

≈ 1 Comment

Tags

, , , , , ,

Autoimmune Disease SnarkECard

For those who are healthy, the word “spoons” may mean little more than something you use to eat your cereal.  For chronic illness sufferers, it has a special place in our hearts thanks to Christine Miserandino from But You Don’t Look Sick.  Christine has Lupus and was faced with the challenge of trying to explain how her illness makes her feel to a friend.  Although written for her specific situation, the story has clear applications for anyone with Chronic Illnesses and has been picked up by the community as a whole.  Please take a few minutes to read Christine’s Spoon Theory.  It is a few pages long, but I promise it is worth the time.

I remember first coming across Christine’s story online and it was like a light bulb for me.  I was so excited to read it and to have a great way to try to explain how my day to day life had shifted to my family & friends.  Christine’s words speak so clearly to so many people that it has literally become a pervasive reference among those who are chronically ill.  So much so, that you can do a #spoonie search on Twitter and come up with pages and pages of results.  You can find results via Google, on Pinterest, Tumbler and Instagram – anywhere a spoonie may choose to express themselves, you’ll find the tag.

As it is alluded to in the name of Christine’s site, many auto-immune diseases are Invisible Illnesses and those diagnosed won’t appear sick, but inside they are often battling with some form of pain and fatigue.   Although I firmly believe that most of those with a chronic illness don’t want or seek other’s pity or sympathy, I think the Spoon Theory can aid in bridging the gap between the chronically ill and the healthy, providing much greater understanding and helping everyone to take advantage of the remarkable power of empathy.

Rituxan #4 Update

29 Sunday Jun 2014

Posted by in Treatment

≈ 4 Comments

Tags

, , , ,

Julia Getting an Infusion

On June 19th, I had my fourth dose of Rituxan (the second part of set #2).  You’ll notice that I’m wearing the exact same cardigan as last time.  As it turns out, this is perfect for infusions – stretchy enough that they can pull it up to run and IV and thin enough to take a BP without removing it.  All the same, it tends to keep me warm.  It has officially become my Infusion Outfit. Ah, the things that make me happy now! I’ve taken to bringing my own blanket as well, but they like to put a warm blanket on top of that so in the pic above I have two blankets plus a pillow for my arm. Comfy indeed.

It was good news all around: not only did the infusion go off without a hitch, but I am pleased to share that we actually increased the infusion rate and I tolerated it well! I was nervous about this step because of my reaction the first time, but I did just fine.  The hardest part was the difficulty in finding a vein.  It doesn’t seem to matter how much water I drink, this always happens.  I’m used to it, so it wasn’t a surprise, but the vein search took about 30 minutes.  Even with that delay, we were out of the infusion center in 5.5 hours!  Remarkable when compared with the 8.5+ hours of my first visit.

The IV benedryl really did me in this time.  Shortly after receiving it, I zoned out completely.  W said he was messing with my toes and I didn’t react.  I remember very little during this time except that he shook me gently once to tell me I was snoring.

Every time I have an infusion I still have a panicky moment on the way there when I ask myself (and W too) why I am allowing/encouraging people to pump me full of scary drugs.  Looking forward to it even?  W sighs and slowly reminds me again that the risks of not taking the drug greatly outweigh the risks of using it.  I want to be relapse free.  I want to keep walking.  I want to keep the daily impact of my MS as minimal as possible.  So, I get the infusion and after recovering a bit, I move forward with life.

I came home from this infusion and slept for twelve hours, was up for four, and then back to sleep again for four.  I returned to my regular seven hours of sleep that night. Basically I slept 25 of 29 hours.  That is an official record for me.  I woke up so sick of being in bed that I insisted that W take me to the local farmer’s market just so that I could get up and walk around a bit.  Three days post infusion I am still very tired, but can feel myself heading back to normal again.

Some of the best news came from the NP before I headed to the infusion center.  She mentioned (again) that I may be able to switch to one infusion go around instead of the set of two.  Woohoo!  I am seeing the MS Specialist in three months and she will confirm the treatment plan then, but it is a potentially positive thought to keep me going.

How Life Has Changed

21 Saturday Jun 2014

Posted by in Daily Life

≈ 3 Comments

Tags

, , , , , ,

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?

Educational Event

14 Saturday Jun 2014

Posted by in Education

≈ Leave a comment

Tags

, , , , ,

Several weeks ago W and I attended an MS dinner program in Charlotte.  It was put on by MS News and Views and instead of being sponsored by a single drug company, it was sponsored by several which means that the information provided to us was largely unbiased.  There were two presenters: Jessica Thomas, a social worker and MS advocate who spoke about MS and its impact on the family and Dr. Jeffrey, an MS Specialist in the area who spoke about emerging therapies.

My major takeaways from Dr. Jeffrey’s talk:

  • Although there are an estimated 400,000 people in the US with MS, those numbers are based on 1994 data and the true number is likely much higher
  • MS is the leading cause of disability in young people in the US today
  • the etiology is unknown – it is guessed to be auto-immune or may be triggered by a virus in individuals with appropriate genetic susceptibility
  • It was thought that Epstein Barr Virus may be the culprit; however, it has not be found in the brains of patients who dies from MS complications
  • When MRIs are completed with contrast dye (gadolinium), the dye is picked up into areas of active inflammation
  • “Silent explosions” are lesions that are shown as enhancing lesions on MRI that may not be physically noticeable (no symptoms), but over time will lead to cognitive decline
  • There is typically a pre-clinical phase when patients experience silent explosions and patients generally do not feel good (this definitely happened to me)
  • For every non silent attack (spinal cord lesions or optic neuritis for example), there are typically 5-10 new silent lesions
  • In absence of treatment, Relapsing Remitting MS transitions to Secondary Progressive in 50% of cases and typical time to walking with a cane is 15 years (average)
  • The goal of treatment is to keep the lesion load to zero because you don’t want a lesion to hit at a strategic location (one spinal lesion can equal a wheelchair)
  • Ocrelizumab/Ofatumumab – Should be FDA approved in 2016.  Humanized form of Rituxan/Rituximab (monoclonal antibody) with positive outcomes in clinical trials.  80% decrease in relapse rate at 6 months and a 97% decrease in gadolinium enhancing lesions.  In a two year time period, only 2 of 200 patients had new lesions.

For those who are interested, the entire program was video taped and it is available online for viewing in two parts.  The first presentation below is Dr. Jeffrey’s talk followed by the Q&A.  For those who are evaluating MS treatments, I would highly recommend watching it.  His presentation goes through each of the newer medications in detail and he introduces several new drugs that are coming to market.  Of particular interest to me, Dr. Jeffrey talked about Rituxan (Rituximab) briefly – the drug that I am on.  You can hear that portion if you skip ahead to 1:10 or so and around 1:14 I ask about switching from Rituxan to one of the new medications in 2016.

The second video is Jessica’s talk about MS and the family.  Although we don’t have children and are not planning to have any, I think her talk would be hugely helpful for anyone who has MS and has/is around small children.  I appreciate many of her comments about adjusting to the disease.

If you have MS (or any chronic illness for that matter), I would suggest seeking education events like this one that is not sponsored by any individual drug company.  Unless you are specifically interested in the drug being promoted, this type of event will offer a much better, more balanced learning experience.

Rituxan infusions Galore

07 Saturday Jun 2014

Posted by in Treatment

≈ Leave a comment

Tags

, , , , , ,

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.

What are the odds?

24 Saturday May 2014

Posted by in Daily Life, Education

≈ 2 Comments

Tags

, , , , ,

{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?

—————————————————————-

* 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

Posted by in Education

≈ 3 Comments

Tags

, , , , ,

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

Posted by in Daily Life

≈ Leave a comment

Tags

, , , ,

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

Posted by in Daily Life

≈ Leave a comment

Tags

, , , , ,

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

Posted by in Daily Life

≈ Leave a comment

Tags

, , , ,

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.