Sunday, May 20, 2018

How That Hopeful Day Panned Out




     I wanted to wait long enough to see how things would settle before I did an update because thus far, each day has been different.  Ten days ago, my pain management doctor did a series of facet injections on my right lumbar region.  I was given the option of choosing which side and as my right has always been significantly worse than any other area of my body, that was my choice.  When I arrived that day, even with my meds on board my pain level was between a 7 and 8.

The nurses checked me into a screened room in the recovery area, checked my vitals, and then took me back to the procedure room.  As I lay face-down on the table, they cleaned my back with antiseptic and Dr. Habimana, using an x-ray for guidance, gave me several shots of anesthesia in the areas in which there would be shots.  The anesthesia was a quick pinch and then not a lot of feeling on the skin.  Next came the injection.  It is my understanding that the injection was a mix of an anesthetic and a steroid.  The anesthetic to numb the nerves and the steroid for inflammation.  The upper two shots were not bad, just a little pressure as the fluid went in.  If you've ever had a cortisone injection- it was pretty similar, just felt like several times the amount.  I say felt- because I don't know for sure, I just know the amount of pressure and time vs a cortisone injection.

The final injection was directly into the area that has been most painful for years.  I try to be pretty stoic when it comes to things like this and to breath through it ( I mean, if I can sit through 8 tattoos and still want more, what's another needle or two? ) but this hurt like all hell.  I was holding on to the table for dear life and in my head I made up several new swear-word combinations.   My entire body tensed but they talked me through it and soon it was over.  They wiped down my back and applied bandaids and helped me off the table and into a wheel chair then took me back to my recovery area.  I had to wait 30 minutes to ensure I didn't have an adverse reaction and because it's been several months they wanted a routine drug test so they filled my ever-present thermos cup with ice and water and I sat and read until they let me go.  When I left, I would say my pain level was down to a 3- which was amazing! Other than feeling numb, I was fine and was able to drive home.

My after care instructions say to rest for 24-48 hours, not to remove the bandaids for 24 hours, no strenuous activity for 3-4 weeks after the final series of shots and continue normal med routines.  Easy enough to follow and so I went home and rested.  I was pretty numb for the better part of 24 hours.  Once that wore off, I felt like I had a MASSIVE bruise for several days but it wasn't unbearable.  By Monday night even that was wearing away.  Since then I have taken a yoga-ish class, walked longer and farther than in 2 or so years and more.  As long as I take time through out the day to stretch, I am better than I have been in years.  My pain level sits at a solid 2 and I feel like a new person.  I cannot wait to go back on Tuesday and have the left side done.

One very interesting thing that I have learned in this process.  When you are focused on pain in one area, everything else seems minimal.  Once that pain is neutralized- well, the other areas say "HEY! We're still here!".  I thought to myself "Whoa- I knew my left side, shoulders, hips etc hurt-but not as bad as this!"  It's been an eye opener but I am so, so glad I did it and I look forward to seeing how long this works.  I know it's a temporary fix, but I will take it because I am so, so very grateful for the reprieve.

Have a lovely Sunday!

Thursday, May 10, 2018

Today is a hopeful day



     Today I am heading in to my Pain Management doctor for Facet Injections.  We discussed Radiofrequency Ablation so I don't know if she will add that on as well, I will ask when I get in but if I weren't hopeful that this will bring some relief from the relentless lower back pain, I wouldn't even have made the appointment. 

     I am at the point in my journey with  my lower back that standing for too long hurts, walking too far hurts, sitting too long hurts.  I have 5 "bad discs" in my back.  In the cervical area I have 2 bulging and one herniated.  In my lower back - one bulging and one herniated.  It's been this way for a very, very long time.  I also have arthritis all through my back.  The chiropractor that I saw took X-rays and said that I had the back of an 80-year old.  That was in the Summer of 2013 when I was 45/46.  He tried to treat me but after weeks of 2x a week treatments including adjustments, massage and acupuncture, he concluded that it was not working and sent me for the MRI that discovered the disc issues.  Last year I went to the Spine center and they said that the arthritis was getting worse and my spine is curving.  It's starting to curve like a backward S. Conservative treatment- my treatment of choice- is Lidocaine patches for pain. They help a bit, but don't take away the pain enough to function so today's visit is the next step. 

Here are my hopes:

  •      I hope that I can attend a yoga class that I found this summer
  •      I hope that I can walk Auggie farther than around the Cul-De-Sac
  •      I hope that I can train Fenway this summer (she HATES the leash) so that I can walk her too.
  •      I hope that by walking and doing yoga I can strengthen my lungs and body enough to go hiking through Clifty Falls State Park again.
  • I hope that I can regain the energy that I have sorely missed.  
It's a lot to hope for, but hope is all that I can have going in.  I know that no matter which procedure we do, once the anesthesia wears off I am in for a world of pain before the treatment kicks in.  Both facet injections and RFA information online from patients who have been through it say that it can be days of multiplied pain while the medication (anesthesia and steroids) for the facet injection or the "burning off" (the best way I can describe it) of the nerve endings settles for the RFA.  Thankfully the procedure is this morning, it should only take an hour or so and then I can come home and rest until Monday.  The only thing on my plate this weekend is an appointment with my adviser for school tomorrow and then I can come back home and go back to my bed for the next few days if needed.  The irony is that the official literature also says that there is a need to take it easy  and "you can return to your normal activities" after 24 hours.  Conflicting info so I am going to err on the side of caution.  

     In the meantime, while she's doing her thing back there I am just going to repeat my hopes over and over as I breathe through it.  In case you are curious- here's a video of my doctor explaining Radiofrequency Ablation.  Wish me luck!  


Thursday, May 3, 2018

Arthritis Today and Life Lessons



     I am incredibly honored that Arthritis Today magazine chose me to be one of their Voices for the Arthritis Awareness Month issue.  The question they asked was: 

What Has Having Arthritis Taught You? 


   You can see my reply in the link above.  They gave us parameters but I could have gone on for days.   I never imagined that, on the fateful day that my LPN looked at me and said "We are going to run some tests but I am pretty sure that you have Rheumatoid Arthritis" that my life would change so significantly just as related to that statement.  It was like diving off of a cliff and hoping that I don't hit the reef.  Before my diagnosis I had never been cognizant of RA, even though I later found out that my Great Aunt lived a very long life with RA.  So, beyond my official reply, here are a few of the things I have learned.  


  •  Body parts can permanently distort all on their own.  When I was diagnosed, I felt relatively "normal".  Now, I look down at my hands and my index fingers are rotating in toward my middle finger and my pinkies don't straighten and if I straighten my hands, the pinkies don't come in with the rest of the fingers any longer.  My feet are the opposite- my little toes and the next one are beginning to rotate out and the next is also bending inward.  I don't like the word "deform" but that's what's beginning to happen.  The positive part of the lesson is- it doesn't hurt, it just "is".  

  • One illness can become two-three-four or more.  It's been a very, very hard lesson to learn as I have been diagnosed with Fibromyalgia, then Degenerative Disc Disease and then Rheumatoid Lung Disease.  I have been very open with the fact that beginning with DDD I started asking "What could possibly be next?" Each one has taken longer and  been harder to deal with, both mentally and emotionally.  The positive part of the lesson is- I did manage to wrap my head around them and continue to be productive even when I felt like just crawling in my bed for a while.   

  • Health insurance is a bear to navigate.  Prior to 2005 I only used my medical insurance for routine things like annual physicals and OBGYN visits or the occasional illness or accident.  After RA- well, insurance has been and continues to be a learning experience. Am I the only one who remembers when you went to the doctor or the hospital and received one bill?  Now the bills are endless as they come from the facility, the doctor, the lab etc.  At some point, I may just figure out the rhyme or reason, but by then it will probably change.  The positive part of the lesson is- I am still currently able to work to afford my health insurance and the co-pays and balances.  

  • There are all sorts of treatments we can try before we get to something drastic.  This is a HUGE positive. Though I have been resistant (okay, let's be honest-I've been downright pissy) about having to go the Pain Management  route, next week the doctor is going to either do Radiofrequency Ablation on my lower back or, if it's not viable, give me a big fat epidural.  One of these two should give me some relief from the relentless pain.  I would LOVE to have the whole summer without back pain.  That would let me work with Fen on leash training (she HATES walking on a leash) and take Auggie for walks as well.  I haven't been able to do that in a long time.  At the moment, around the cul de sac is about as far as we can go.  Epidural would last, possibly a few months.  RFA can last 6 months to a year.  How hopeful is THAT! Should I be one of those anomolies that the treatements for whom the treatments don't work, I think it will be time to start looking into holistic remedies.  I know that acupuncture works for a week or so.  Maybe I will check and see how much a package of treatments cost.  There's a float center being built as I type.  Josh says that floating is better than massage for relaxing the muscles and joints and I still have to gift certificates from Jim for Christmas to use.  Perhaps that's the way to go next?    
 That's just a few of the things I have learned but the biggest lesson of all is gratitude.  When I was diagnosed there was no way that I would have seen the positives in these lessons so easily.  Now, I actively look for it so that I can be grateful.  It helps me navigates the stresses, it keeps me from spiraling into depression and helps me get out of my head when I am feeling overwhelmed and it allows me to see how very blessed I am despite my difficulties.  I am the first to admit that I am still learning gratitude every day but I am working the journey as best I can and I can see what a difference it's made for me.  

Now I pose the question to  you- what have your difficulties- be it RA or another challenge- what have they taught you?  







Wednesday, April 4, 2018

Happy Birthday Maya Angelou



Just a quick hit and run post this morning.  I start each morning on my Facebook page with a quote that reflects what I am thinking about for the morning.  Dr. Maya Angelou wrote many things that I find inspiring and I find that I am often drawn to her writing when looking for just that quote that stirs me.  On this day, which would have been her 90th birthday, I found this quote which applies to so many of us with chronic illnesses:

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” 


I hope each of you rises above your challenges today and takes strength in knowing you are not alone.  





Sunday, March 11, 2018

Catching Up?


It's been a very, very long time since I've had the brain capacity or energy to have much to say.  Between work and school I have been running a bit ragged but today is an actual FREE day!  I have no homework, laundry folding is on the schedule but we decided to cancel our plans and not to go out today so we can just get some housework done at a leisurely pace and then hubby is going to grill steak tips that have been marinating in a sesame ginger marinade since last night.  So- that means I have time to sit, look at this blank page and think about what I have to say. 

First, let's catch up! 

As far as school goes, in the Fall term I took a KICK ASS stage makeup class.  I loved it and learned so much!  I also took a professional writing class- which was good too.  I made it out with an A in both classes. 

This term is tougher.  I am taking a Research Writing course that is kicking my butt.  I don't know if it's because it's online and I do better face to face or because I just am not getting what the professor expects but if I make it out with a B I will be grateful.  I am also taking a Visual Communication class.  I really like it but it's challenging as all get out.  I am FAR better with the written word than I am visually.  I am not very artistic and you need an artistic eye to design ad, newspaper layouts and (my current project) magazine spreads.  But- I love learning the different programs.  We are working with InDesign and just easing into Photoshop with the latest assignment.  The next two assignments will be a video and a website- that means more programs to learn!  Knowing my limitations, I am hoping for a B in this class too. 

I am very much looking forward to my Summer terms as well.  In the first half of Summer I am taking a Horticulture class which is also a lab and all online that should mean planting at my house so it's win-win.  My full Summer class is the one I've been waiting for- Social Media Strategy.  I can't wait to get my hands in this one. 

As for my RA and stuff- my insurance decided to no longer approve Actmra.  Since the ONLY drug I have left that we haven't tried is Xeljans, my doc decided to go back to the beginning.  The very first drug I was on, in 2005 when I was diagnosed, was Plaquenil.  She put me back on that three months ago now and I really don't see much of a difference.  Then again- that's the story of my life and why I have been through all of the DMARDS and Biologics.  I never respond.  On the other hand, that's also why my plasma is in demand- my RF and Anti-CCP levels have been through the roof since day one.  That said, I am very, very lucky and I know it.  My body knows it's under attack and my labs show it, but I am doing okay with it.  Other than occasionally needing my cane or bracing, and not being able to walk far because of my back, I am managing.  I wish I could exercise regularly to get rid of the weight gain from 2 years on Prednisone and not being able to do my long walks any longer, but I do what I can. 

My Rheumatologist also referred me to Pain Management.  Because of the opiod crisis, many of the doctors in this area are no longer writing scripts for pain meds and are sending us to pain management.  While I get it- they don't want to be responsible and it cuts down on places that the addicts can go to get meds- it's another DOUBLE added expense for patients.  I have to pay a co-pay to walk into the hospital where it's housed AND a co-pay for the doctor to see me for less than 15 minutes since I am stable.  That is utter crap.  I vacillate between wanting to say to heck with it and go off meds completely and sucking it up, but it still makes me mad.  However- the Pain Management specialist offered up treatment options for my back.  I think next visit I will as if a pretreatment can be done for the least invasive and see what my insurance would pay.  If it will allow me to be without pain in my back for a while, it might be worth it. 

What about you?  What's new in your life?  How are you feeling?  

Wednesday, October 4, 2017

Four Weeks and Counting- AKA #Overwhelmed



  Well, we are 7 weeks into school, 4 weeks in to Haunt season and work is work is work.  Add in PT appointments and hubby taking a second job and I am feeling #Overwhelmed.

Oh, I know- it's my own fault.  I have taken this on myself.  Work is always work.  The only thing that changes is how much payroll I have to work with.  Haunt season is, of course, my favorite time of the year, and I am the one who decided to go back and finish my degree.  Hubby- on the other hand, realizes that if he's going to be in a bowling league and hang out with his friends he needs to have disposable income so he took a part-time gig at Lowes, where he quite enjoyed working and would still be had it not been for the money.

Work, in most sectors these days but especially in retail, is very much about controlling expenses.  The easiest way to control expenses is through payroll.  The Catch-22 is that the work does not stop or lessen.  So we do more with less.  It's a strain, it's stress, it's just a lot.

School is actually rather enjoyable when we don't factor in my "other" role on campus.  I love learning, I love being in a classroom.  It's hard to balance that I am representative of the "Big Bad Bookstore" and being a regular student.   I have to listen to the complaints as to how awful it is that we charge SO much - when we don't set the prices and I spend hours and hours looking for the lowest price options.  It can be a strain to sit there and take it and not speak up.  However, eventually, the students forget and I am just another student.  After the students forget- the prof's don't necessarily do so.  I don't mind working closely with them to ensure that they have what they need.  I enjoy building the relationship, but I am still a student first in the classroom and would like to get rid of the distraction of being "the Bookstore Manager" when I am in class.

Haunt Season makes my heart happy.  I know it's silly.  I know it's...unusual.  But I get to be another person, I get to give people a thrill.  People come to haunted houses because they either want to be scared or someone drags them.  Either way, for just a few minutes, I add to their experience and it's SO much fun.  I don't have enough time to tell you all the stories but we get a lot of laughs.  It feeds the acting bug without having to give up my life to be an "actor" and I am allowed to have a lot of creative freedom and latitude.  Thankfully it's only 8 weeks of regular work because I am tired.  So, very tired.  Thankfully I have Sundays to rest up.

Jim taking on an extra job is not that big a deal.  It's exhausting for him but it's his choice.  The only reason it affects me is that I have more flexibility and we have the two dogs.  So that they are not stuck in the house alone all day, I have to go to work at 7am, take an hour for lunch and go home and let the pups out then head back to work and/or school Monday through Thursday.  On school days I am at work 7-4 (with my lunch) and then in class 4:15-7:15.  On the other two days, I am at work 7-6:30 or 7 with my lunch.  I do this so I can get out early on Friday to go to the haunt and because by Friday I am exhausted and need to nap.  It also allows me to book my appointments and such on Fridays and not mess up my regular schedule.  It just makes for very long days.

PT is...interesting.  The Spine doctor says that I have arthritis in 80% of my spine and that have 5 discs that are in bad shape.  The goal with PT is to get my loose enough to function.  Currently, we are using traction twice a week, ultrasound and trigger point massage.  The massage feels amazing.  The ultrasound feels good too.  Traction is not so fun- but it's making a difference.  My range of motion is better.  I only wish that I could have trigger point done every day.  We have another week or so of this then I will be on my own till I am back to the spine doctor.

All of this is manageable on their own but together I am a big ball of stress.  Four more weeks.  Then haunt season will be over (sad sigh) and I will be able to take back my weekends.  It will be both sad and a relief.  Until then, I plug on and on and make it through and make plans for a lot of self-care when it's over.

Hope you all are well.

Thursday, August 31, 2017

Testing. 1..2..3..Testing



One of the less fun sides of both chronic illness AND ageing is all of the tests that we have to endure.  Most of us with RA have to have blood work routinely.  With Degenerative Disc and Rheumatoid Lung, it's X-rays/MRI's/ Breathing tests etc.

Then there's ageing.  I turned 50 last month which means that in addition to routine blood work, the always pleasant Mammogram, and "female" testing I was given the gift of a Colonoscopy.

This week has been rough.  I had an appointment on Sunday for a deep periodontal scaling -thanks lowered immune system!  I haven't had a cavity since the 90's but even with taking care of my teeth, my lowered immune system opens me up to periodontal infections.  I recently lost three back teeth due to this and we have to do whatever we can to keep the rest.

Tuesday I went to the Spine Center to follow up on the DDD.  The x-rays show "multilevel degenerative disc disease."  The C3-C7 show thinning, spurring and "subluxation" which essentially means that my neck is bending the opposite way that it should.  The last MRI in 2014 showed that two of those discs were bulging.  The lower back showed that the L4-S1 are thinning, have spurs and show signs of "Dextro scoliosis".  In addition, both areas have lots and lots of hereditary (thanks Gran!) arthritis with the L5-S1 looking like cotton candy instead of nice and crisp.  That explains a lot of the constant pain.  I don't want to add more meds and still refuse narcotics so we are being conservative.  That means it's back to PT for measurement for a cervical brace and dry needling and adding Lidocaine patches 12 hours a day.  In two months, I go back and if we haven't seen any improvement it will be another MRI, a lower back brace and on from there.
Tomorrow is the dreaded Colonoscopy.  This is my first and hopefully, I won't need one for a long time.  Also hopefully, the prep is worse than the test.  I am not going into the prep, I will just say that it's not fun.  Fortunately, I have the time needed to take today off for the prep and tomorrow off for the test.

Next week- it's back to the Rheumy for routine blood work.

As I sit here and reflect on this week and psych myself up for tomorrow I have to think about the medical costs.  I am so very grateful that Barnes & Noble Education takes good care of its employees in terms of the insurance it offers to us. I have a co-pay for visits, a reasonable deductible and then pay about 20% for the rest of the year.   Even with good insurance, those costs add up!  I just cannot imagine what someone who did not have insurance would have to pay out of pocket for all of these procedures and tests.  I completely understand how medical bills can bankrupt a family.  It makes me incredibly sad that in a nation such as ours, this can be allowed to happen.  But that's a post for another time.

Be well, my friends.  Be well and get whatever tests your doc feels is necessary.  Though they are expensive and time-consuming, they will help head off any nasty surprises.