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?