Wedding Reception Worries!!!!

On Oct 3rd, my husband Cam and I are having a wedding reception for our family and friends who couldn't join us for our wedding in Mexico on July 25th.  I am excited for the following reasons:

1. I can trash my Weight Watchers plan for the day and pig out on lots of great food AND we have a sweet bar, so YAY.
2.  I will attempt to earn more than 3000 steps on my Fitbit by trying to Dance for the first time in YEARS; too much A.S. pain has stopped me hundreds of times prior; still not sure I will actually be doing what constitutes as dancing lol.
3.  I will see friends I haven't seen in years and be able to just celebrate their importance in my life!
4. Drinking...and lots of it...(or at least 3 drinks which is usually my limit...then I just get terribly verbose about nonsensical stuff).
5. Music will be pumping all night long...and as a music teacher...that is just plain awesome.
6.  It will be just a great time all around.

Reasons why I am NOT excited about the reception:

1. I will be stressed about the planning and organizing of the event, that it may put my body into a really bad flare; pacing is not something that comes naturally to me. Yet...
2.  I may not have ANY energy after the set up to actually move....period.....and may need my Walker/Rollator to do the simple things ...like shuffle to the food line at buffet time.

This is my trusty walker...helping me load flowers into my car

 

3.  I may need to leave the party early simply to sleep and recover from the set up, thereby leaving the party behind to fend for itself...and miss out on all the fun.
4.  I may become a big stress ball and not fit into the dress I have chosen; and or HATE all of the pictures of myself because I am HUGELY INFLAMMED from the pain.  Like my wedding pics....they were tough to look at.  don't get me wrong, I am happy to be alive...but sometimes the body betrays the spirit and soul.

Who knows...I will try not to worry and fret. But it is not in my nature lol I am a Type A personality, it is my genes; not just Aknylosying Spondylitis....and they battle it out to see who wins.....

For now, I am going to try to rest up much of this week ahead...do what I can to ensure that I have a great time and simply be grateful to even be able to have such a celebration.

I am really excited!!
Pictures to follow!!

July 4th, 2011 was EPIC

Today for #RABlogWeek participants are to discuss "Onset Stories"' or, how did you feel once you were diagnosed?? I had a lot of mixed emotions when that occurred for me.  Here is the back story for how that all evolved.

1. fell off cottage deck...sprained ankle horribly....evolved into a blood clot (DVT); left me off work for a year. That was July 4th, 2011 when it all went to crap...

2. During this year off, I decided to address the question.."why in the heck did a sprain evolve into something so awful? I have had far worse accidents? (ie. sky diving at 30...lol and tearing my ACL on my right leg).

3. Questions then evolved into addressing my perpetual lower back pain that has worsened over the years, getting an arthritis assessment, being diagnosed with Fibromyalgia at first, then.....only to discover that I tested positive for HLA - B27 which is the genetic marker for A.S. ; Finally I had an answer as to why...I was hurting so badly each and every day.

I felt vindicated because now I had an answer! So, that being said...I knew that I need to tackle these illnesses head on. I would research EVERYTHING I could and then...find my CURE!!!

After 20 or so books later, several research studies online and several doctor's appointments I knew that I would not find that magical cure.  I have had A.S. my entire life...in my early 20s it first manifested as patella femoral syndrome ; this made Varsity level fencing VERY painful by the third year, so I have always known that something was different about me...have had MEGA allergies my entire life, broken three bones on my left arm, had numerous viral and bacterial infections and was always just called a "sickly person"; so that was my plight in life....no body every thought to investigate further.....

Until I was forced to.  Years of reading, years of seeing doctors and yet a Third,  Short Term Disability leave from work....have not resulted in me feeling any better; and there has been no magical cure.

I believe I am getting closer to "acceptance" of my plight in life, and of my illnesses....but it is tough. However, reaching out to others online, blogging, and sharing stories reminds me that I am not alone....and I will be able to navigate my way back to happy!!

I LOVE FENCING....and ARCHERY...and SWORDPLAY

I wish I could say the picture above was me, but it isn't...but is SO could have been just a few years ago...err ok 20 years ago; why...because that is when I was at my peak in terms of being physicallty fit.  I went from being a high school student who did nothing but study and play music and rehearse and perform theatre, to a full out Varsity Fencer for the Queen's University Varsity Fencing team in just a few years.  YUP; this artsy fartsy type loved Fencing.  And who wouldn't? you got to wield a weapon, wear cool outfits while doing so, AND hit people for SPORT!! I loved it...and I was really GOOD. This was a time in the early 1990s when women weren't "allowed to fence with a Sabre" but....my fencing master ..Hank Perdoel, saw something in me, and was scouting people from the Fencing Club to join the team...and so I did; and withing a few months I was even competing!! 

I placed 5th in Canada in the 1992 Nationals in Montreal...I was on FIRE and had the time of my life....I was loving it.  And that lead to exploring Archery and Swordplay with the Local LARP community and Renessaince Faire types...(yep, I am THAT girl lol) .  I loved every minute of feeling so active, alive, and in charge of my health.....even with back ache, it rocked!!! 

But then, life got complicated.....a job happened, in teaching....which I have loved, I moved a lot...I lost both of my parents early in my life, and early in theirs (mom died of a heart attack at 53, likely related to her undiagnosed A.S.; and dad just three years ago from Cancer); and all of that stress made having chronic illness that much more difficult to manage.....and here I am today, off work...trying to find a happy and healthy balance. 

Today we are to try and talk about Chronic Illness and Exercise....years ago I could have explained my weight training regime, my running regime, my Fencing drills and have it all laid out.....today is a very very different story.  Today, walking ....is my only real form of exercise, and it usually involves planning ahead, making sure my walker is with me, on flat surfaces...on my "ok days" and "in between flares".  I struggle I really do....I have a Fitbit that tracks my steps...I aim to hit 3000 a day; not the national standard of 10,000 because that is impossible.  Most days I hit that...and I celebrate; but some days it is impossible.

Some days I can be particularly active and do aqua fit with the lovely seniors or retirees in my area.  I stick out like a sore thumb...being so "young and vibrant...why aren't you at work?"; it is tough.....but the weightlessness is a delight...and for those 45mins twice a week...I feel invincible! And...feel like I could take on the world but then I have to get out of the pool and the harshness of gravity reminds me that I will always ...always....be in pain.

This is my new norm...and it is tough to come to terms with. But I celebrate the fact that I can at least get out of bed.......and that, is enough.

Today for RABlogWeek the prompt is "Five Things I have Learned"; this is specifically meant to be about things I have discovered in this journey of coping with and living with chronic illness.  There are so many things that to limit it to just FIVE is....well, difficult to say the least.  But I will try to narrow it down...here is what I have observed:

1. Very few people who do not have chronic pain, actually GET IT.  Many friends mean well, and try to provide unsolicited advice about what remedy they have tried...or their grandmother has tried to "cure arthritis and Fibromyalgia"; that information is usually total CRAP.  So, I have no learned NOT to take things so personally when, at the beginning of this journey....nothing seemed to "fix me".  There is no quick fix, no magic remedy or spell or treatment, but a mixture of things you need to explore when trying to treat and cope with chronic illness.

2. When you are proscribed "Pain Management Classes" ; take them....with a grain of salt.  Again, the information is usually common sense; but very rarely has any prescription for how to "Beat" chronic pain.  Enjoy them for what they are, as I did, but I knew every bit of information in those classes well before I even went there, but I did learn that I wasn't alone in my pain. So that proved beneficial.

3.  I have learned that having chronic illness means you will likely mourn the person you once were.  And that is ok, and logical.  Grief can come in waves and leave your feeling frozen in time.  But, if you have support, you will be able to find your way out to the other side of it.  Ride the waves ...and you will be ok.

4. I have learned to enjoy the simple pleasures of life.  I try to find something that makes me smile and or laugh each and every day because it is critical to remind myself not to take life so seriously.

5.  I have learned to appreciate and accept more help from my husband.  Once considered fiercely independent, I would refuse help of any kind....I could always do "Better" and rely on nobody.  But that is no longer the case...I NEED help ...and I now have no reservations asking for it.  That is one of the best things I have learned in this process.  It also makes my husband feel less powerless when he sees me struggle with my pain.

I wonder who else can relate??

Today's prompt for #RABlogWeek is "describe your RA".  This will be easy for me....I do not have RA, but I have a very similar form of arthritis.  It is called Ankylosing Spondylitis.

The above lovely infographic nicely encapsulates what life with A.S. is like.  Here is a more succinct definition about the disease :
Succinct-Mayo-Clini-Information  Therefore, if I were to try and explain what A.S. is, I may refer to these pieces of information to someone newly diagnosed....and then, would qualify it with some of my own observations.
1. When every site claims that "most patients improve with exercise and lead normal, fulfilling lives", that may be true for a good portion of patients...but EVERY ONE of us is UNIQUE.  And in my case, the pain has been debilitating and required that I take a short term disability leave from work.  So....NEVER EVER take what every doctor claims to be true about A.S. to be carved in stone.
2.  A.S. DOES affect more than JUST your Spine!! and no...you do NOT need to have any signs of fusion on your X- ray to feel a LOT of pain all over your body.  The S.I. pain CAN and WILL radiate to every other joint in your body and especially can impact your hips, knees, ankles, feet and hands.  Never allow a doctor to imply that you cannot feel pain elsewhere and to investigate further!!
3.  It is more than just "typical back pain"; it is ....unending, that waxes and wanes in intensity.....but never stops.
4.  A.S. is progressive....but it doesn't mean you will completely fuse...but, it MAY mean that, like me, you may need to use a cane, walker/rollator and or wheelchair to get around.  It all depends on how badly you find your body reacting to any of the following triggers: heat, cold, stress, food allergies, stress....lol so don't be shocked that you may find yourself in this place.  Use those mobility aids to help make life better.
5.  You are not alone...there are lots of support groups online, find one, chat with others...they oftentimes replace some of your "Good friends" who said they would "be there if you needed them" and then just don't manage to show up.
6. Find a rheumatologist that you like and likes you...go to each appointment armed with information.  Be diplomatic in your approach, but firm.  If you find that you don't quite "jive" with your doctor, find another.  You will need to be in contact with this doctor for a long time....make the choice that works for you.
7. Explore alternative therapies....such as massage therapy, chiropractic care, physio therapy, accupuncture, whatever may float your boat.  No one treatment works for everyone....it can be frustrating to find that right mix of what works and what doesn't, but explore all options!!

Here are some therapies that I am doing....with varied levels of success.

1. Chiropractic care: 2 times a week; for electro accupuncture, ultrasound work and stretching. I find this generally good...as it helps me stay mobile.....but, often feel like I am back to my usual pain laden self, within a day afterwards...:-(
2. Massage Therapy:  is a new kind of deep tissue pain...helps to release trigger points...but also leaves me bruised.
3.  Physio therapy: allows me to get a nice foot rub from a lovely physio therapy trainee....doesn't do much to quell the pain...but I try.
4. Aqua Fit: awkward exercise in a public pool...amongst lovely retired folk, and pool noodles...but..I feel weightless for an hour 2 times a week...and that..is awesome.
5. I wear a "wearable technology" for pain that I get from my plantar faciitis; it is called Quell.  It is a portable TENS unit I wear on one leg...it feels nice enough...reduces pain in my feet from a 10 to about a 7...so that is good. Details here:Quell
6. I have tried medical marijuanna; I have a medical prescription.....lets just say that a) all marijuanna tastes awful (to me) and that b) so far, does nothing for me....however I know I am told I need to find the "right strain".....not sure where one finds that lol. Anyone?
7. Biologics: I am on my THIRD biologic; was allergic to Simponi, and Enbrel....and now, I am trying Humira....have only tried one injection and had a GREAT two days of the 2 week stretch..hopeful that today's injection helps........dunno...
8. Pain meds:  none...and I mean 17 have not even TOUCHED my pain...so...I am not on any at this time. I have even tried oxycontin, and hydrocodone....
10. sleep...this...I love lol
11. I have joined Weight Watchers online....have found it relatively easy to follow....but DAMN if it takes FOREVER to lose any weight....doesn't help that I have Hypothyroidism...
12. I wear a Fitbit...I had to modify the steps allotment to 3,000 as there is no way in hell I will cover 10,000 steps a day..not do able. I just HATE that I earn NO "activity" steps as that requires my heart rate to hit a certain level....but hey...the mere fact that I am MOVING should count for something lol!!

I keep trying to find what will make my pain manageable so that I can return to teaching High School Music and Drama. (which require oodles of energy); until then....I research...and do what I can.

It is day two of the most excellent RABlogWeek and the topic for today is "how to manage fatigue" .  I find that a most ironic title, as I am not sure that I can even do that..."manage" fatigue; I do believe however, that it manages me.  

I wish I could say that there was a salve, or some ritual chant, or perhaps having your house saged that would then help you to manage your fatigue....but there really is no one size fits all for how to do this.  When you have invisible illnesses sometimes you are better at convincing yourself and the rest of the world that everything is"fine" when we know....it really isn't.  

I have severe sleep apnea; so one of the most crucial steps I need to take is to ensure that my Vadar mask is a) clean b) plugged in..c) sized to fit....and voila...I can then lay my weary head down and ....once the hum of the machine kicks in, I can then breathe....well...at least not STOP breathing.  And that usually enables me to have a few decent hours sleep...by a few, I mean at least 6.  I am not sure how many of those are "deep sleep" hours, but my Fitbit will tell me that I am "restless 7 times " a night...give or take.  I think that just means that my highly anxiety-laden mind is running ragged...

But I do generally wake up feeling more refreshed than not when I wear my Vadar mask.  

I have to ensure that I read some brain candy literature before I go to sleep...no more medical reports, diagnostic manuals, or self - help books, those are NOT helpful for a decent nights' sleep.....here are some of the current books that I have found on Kindle and they are HILARIOUS...forgive me that I choose only female authors, I am on a "female narrative" kick....

here they are: 

"Yes Please" by Amy Poehler  (hilarious story of her life, witty, acerbic, and just what I love about strong, funny women; they are bizzare and confident in their bizzareness....lol ) 

"Why Not Me" by Mindy Kaling  (another hilarious memoir from a witty woman trying to break out into the highly male-dominated culture of comedy)

"Let's Pretend This Never Happened" and "Furiously Happy"  by Jenny Lawson: THESE  ARE  SO incredibly funny....it is a "mostly true" memoirs of Jenny....and it has a hilarious stream-of-crazy-consciousness style of prose that just makes me laugh out loud. 

"Hyperbole and a Half" by Allie Bosh.....made me laugh out loud....often.  Very candid moments about depression and coping.... This one will make you snort out loud...

Hope these help others.  

Fatigue impacts every day of my life...I try to pace myself; but that  sometimes means I don't shower some days and just stay home...or ..it means that when I go grocery shopping, I use an electric wheelchair and not my walker....it all depends on the day......

wishing you all health and happiness....as we slog through this life with chronic illness!! 

First ANNUAL RA Blog Week!!

I recognize that this week is vital for a few reasons, 1. It spreads awareness not only about Rheumatoid Arthritis, but about all variety of arthritis. and 2. It allows regular folks like myself to share with you what a typical day in the life of someone with Ankylosing Spondylitis and how that impacts my day! Just so you can get some insight about how it feels, how it shapes my experience in this world. 

I have been off work because of my chronic pain associated with Ankylosing Spondylitis since February. I am seemingly looking for that "magic pill" that will somehow reduce my pain levels from a regular 9 or 8 on the scale, to a "manageable" 5 maybe? so that I may then head back to work....in the meanwhile, I spend my time just trying to do every day chores, prepare for a big move (to a house without stairs); and cope with the aches and pains of everyday living. 

This summer I had to purchase a rollator/walker. It has been a saving grace and yet, has also been a terribly humbling experience.  It allows me to sit whenever the pain in my lower back is unbearable, and yet....it attaches to itself certain assumptions, and the stares from people are constant and always intrusive...I am, afterall, only 43, and have that "how-can-she-possibly-need-that" look about me.  

One summer day, I woke up....raw from pain, sore all over, and exceedingly stiff and decided that, in order to get some exercise, I should head to the mall and walk a lap....after a painful shower, and getting dressed in comfy stretchy pants....I headed out ready to do some walking.  

The first few minutes in the mall were great. The pain was manageable, and I even managed to try on some new clothes in various fitting rooms....then I kept going....the swelling in my body becoming even more noticeable, and the "pain sweats" fully expressing themselves it was becoming unbearable yet again...but I forged on. I even managed to buy a few nice T shirts in one of my favourite stores.  The lovely sales lady was making some small talk with me, as I sat in on my walker, waiting to check out and pay my bill....and then she asked...."how long are you at the mall?"...this was a seemingly random question...I answered with "as long as I like? ". And I scanned the mall...looking for clues as to why she asked what she did...and then, I saw it.....the various clusters of elderly folk with walkers, wheelchairs, canes...enjoying their "day out" from the seniors' home.  I was shocked....I ...suddenly was being "lumped" into that category.  It was a deeply troubling assumption and stereotype...I then said "no, I am not a part of the bus crowd just yet..." ; the sales lady was so embarrassed and blushed a deep red.."oh...of course not...you are too young!" she smiled....but the damage was done...

I left satisfied with my purchase...but....acutely aware of how people with invisible illnesses are perceived in the community at large; people without any real independence, forever clumped together as "needy and dependent".....and it hurt. I am not there yet.......but I was very close.....and it scared me.  

I am officially firing my rheumatologist.  She has a history of patronizing me, of being condescending and of making me feel like a contrite child for not being able to simply "overcome" Fibromyalgia and of making my pain seem inconsequential. And I find all of that, unacceptable.  The only real problem with doing so...is that her name and notes are attached to my Long Term Disability Claim and the insurance company may be shocked to see that she has been given the old heave ho.  

I refuse to continue to be made to feel like a second class citizen because of the fact that my chronic pain seems to "confound" her....and thereby, confounds me....you can imagine just HOW much it confounds me.  If she cannot seem to find the answers and or solutions to what I may need help with, then how on earth was I to "overcome" Fibromyalgia, let alone address how my pain manifests because of Ankylosing Spondylitis!! 

I am simply trying to find a doctor who demonstrates compassion, is articulate, not condescending, sees me as a patient AND a person, who can communicate with empathy, and sees me as more than just the sum of my symptoms.  However, that seems as elusive as finding a unicorn.......

Are there such doctors out there? I am really wondering....and feeling bereft....I am currently out of work, my health care coverage has run out, I have no income, I am the breadwinner.....and feel wretched....

I am not sure what to do.....but I will try to find the hope at the end of this; the darkest tunnel I have ever found myself in......

Today I had my usual bi weekly massage with my most amazing therapist, Sandro.  Usually it is exceedingly painful during...and then afterwards I feel pretty darn good, verging on feeling "ok" even.  However, today it wasn't the same.

Today, Sandro experimented with some myofacial technique on my spine and skull....and during it felt pretty good, however....this time, I left and felt exceedingly nauseous and my all over pain triggers were on "fire".  When I mentioned how I felt before I left, Sandro said "yep, that can happen with chronic pain; guess that is just the way it goes".

I felt pretty darn defeated and sad; because I went there with the ambition of feeling o much better, only to suddenly leave feeling even more wretched than I had before.  Such is the nature of chronic pain I suppose.  I just keep forgetting how much like a thief chronic pain can be!!! it is awful and just not fair.....

End of rant......

Today my husband and I had our house inspection for our new home.  We love our current home, but, because of my progressing Ankylosing Spondylitis symptoms and Fibro symptoms, I need a home with fewer stairs. It was a tough realization to come to, that I just could no longer tackle the staircase and had to accept that limitation.  However, the new house is going to be awesome.

Here is why:
1. It has a full backyard, beats condo living any day.
2. That will enable purchase of a puppy!!
3. It is only two stories tall and the master bedroom, dining room, living room, bathroom and kitchen are all on the first floor which means....NO MORE climbing stairs! Thank goodness!!

It will be a lovely change and I am excited ...even if I am mourning the loss of our current home, current neighbourhood, and all round nice house....and mourning my former self.

It is a learning curve of acceptance....acceptance of limitations; but one I knew was likely going to happen sooner rather than later.   Fare thee well oh staircase !! lol

My name is Jen Workman and I am a high school Music and Drama teacher and to say that my life has been Drama filled is grossly understated lol.  I have been teaching for 19 years but, for the past 4 years, my life has been inexplicably changed because of chronic pain and chronic illness. 

In 2012, I was diagnosed with Ankylosing Spondylitis (you will be quizzed later about how to spell that lol) ; want to learn more about it? check out this site. WHAT THE HECK?  , I have also been diagnosed with Fibromyalgia  WEallknowthisone , Hashimoto's Disease Hashimoto's Disease, and Sleep Apnea....so life has presented a lot of challenges lately.   The past year and a half has been especially difficult because of the fact that I have not been able to work....my pain is off the charts and, after many treatments, and exploration of treatments, I still haven't found the solution for how to manage......I do want to return to work, but haven't yet found my way back.  In the meanwhile, I research, educate and try to empower myself to do just that.  I have turned to blogging to connect with others in a similar situation and to recognize that we are not alone in our pain....and never should be.  

I hope we continue together on this journey and recognize that there is a way to find ourselves again, to recreate our path in life......and find joy.  One day at a time. 

be well

Jen

The picture below is of my husband.  We got married just this July, on July 25th in the Riviera Maya at the Grand Sunset Princess...whilst we had a GREAT time. My pain was off the charts..and I had to exist in a wheelchair much of the time. But I just wanted to share this picture of him because he is my rock, my constant, my one and only source of comfort in the storm of chronic pain and chronic illness.  I love him.....Cam Weaver is his name....