Monday, January 7, 2019

School Is Back In Session!

     Today is the first day of the Spring term.  I am having a bit of "What in the world did I get into?" this morning that actually started last night when I opened my Geography textbook.  In reading the opening, I am interested in the Human Geography portion but that is the minor part of this course- this is essentially Earth Science- which I haven't even thought about since I took the class in high school in 1982.    The only part that piqued my interest is climate change.  I am woefully ignorant about the science behind it so that will be interesting.  The hard part- it's all online and not a....motivating subject for this non-sciency (yes, I made that up!) girl.  

On the bright side- I am very much looking forward to my Communications Law and Public Relations Writing courses this term, both of which start today.  One is my lunch, the other starts at 6pm.  In Comm Law we have a major term project that will require us to do a Freedom Of Information Act request.  It's a group project (ugh) and so we will have to agree on a subject but that should be interesting.  In PR Writing, our term will center on all aspects of PR writing for a single company/organization of our choice pending approval.  One would think the layup would be doing it for work but the fly in that ointment is- I don't want to be treated any differently than any other transfer student by my professors or fellow students so I don't mention my job in class unless directly asked or recognized. 

Healthwise, I am worn smooth out because of the current schedule but more- my body goes back and forth with swelling and pain due to the lack of anti-inflammatories.  I told someone the other day that it would take less time to say what DOESN'T hurt than outline what does.  I am also struggling with eating for my ulcer.  I really, really miss tomatoes and second thing I miss is chocolate.  Friday night was Jim's birthday and it took me almost 2 hours to find a restaurant that he would eat at and that I could eat.  It's not as restrictive as some- and I shouldn't complain at all compared to what my dearest friend just went through ( totally restricted elimination diet)- but as someone who cooks a lot with tomatoes, vinegars, cruciferous veggies and whole milk- it kind of stinks. 

My List for this week is what I am most happy about right now.  I will work on that after homework tonight. SO-  Count your blessings today and think about what makes you happy.  It's time so it's AWAY WE GO!  

Friday, January 4, 2019

Back to School Rush time- again and again

   Another Back-to-School Rush is in full swing.  For me that means working every day through the 12th.  Of course, now that I am a student as well, it also means getting my head straight for learning as well as busting my cookies in the store.  Last term I took my first Hybrid course.  That means that we meet one day a week on campus and the rest is online.  I much preferred that to fully online classes because that one day face-to-face allows for the immediate questions and answers that I need to feel like I am going in the right direction.

    Spring is a slower time for the store so I am going to attempt to take three classes this semester- one face to face, one hybrid and one online.  What that will require is a lot of discipline on my part.  It will also require that I manage my energy levels to the nth degree. 

    The challenge to that lies not only in the Fibro and RA but some things that cropped up within the last few months.  I was very sick in the Fall - the recurrence of Bronchitis and Pneumonia was a multi-month process and left me beyond exhausted.  When I didn't bounce back my doctor did blood work and discovered that I had developed severe anemia.  Combined with the acid reflux I have been fighting for years now, I ended up at the GI doc who diagnosed GERD just by looking at me and my history and then went a step further.  A few weeks ago I had an endoscopy and he found a big old linear ulcer to top it off that he felt was caused by so many years of NSAIDS.  So now- they have pulled me off the NSAIDS, added lots of iron, doubled the Prilosec in the morning and added RX strength Zantac at night.  It's a lot but my energy level has *almost* righted itself but I am hopeful.  I just have to work with not being on anti-inflammatories.  We are also in the process of changing my RA drug but that's another saga for another time. 

     In the meantime- wish me lots of energy as I tackle these classes this term.  It's one step closer to being done with my degree!  Until next time, I hope your weekend is filled with blessings. 


Wednesday, January 2, 2019

Looking back at 2018- Looking forward to 2019

     2018 was a real roller-coaster.  As I sat there on New Year's Eve reflecting on the past 365 days, I realized just how up and down it went.  If I needed further confirmation, it was the dozen or so posts that I had sitting as drafts that I deleted to clean up my year.  2018 also seemed to fly by like a Supertrain bound from Boston to New York.  I cannot believe we are already in a new year. 

     I waited a day in order to give myself time to really think about all of this- and fortunately I had all of yesterday to make notes at my leisure as I sent the husband up to South Bend for the NHL Winter Classic.  He's a HUGE Boston Bruins fan and I got him a ticket for his birthday.  He went solo because Hockey is not my thing and it's not a huge sport out this way.  He was very content to make the 4.5 hour (each way) drive in order to see his favorite team in Notre Dame stadium and I was content to stay home with the pups and set my desks up for next semester, get a little housework done and pamper myself at my leisure. 

     In reflection- here is what I realized.  In 2018, I allowed myself to get so caught up in school, work, and more emerging health issues that I lost time with some important things.    I didn't spend enough time with my parents, my only writing was for school and rather than fight my illnesses, I just let them wash over me and take me directly into a pity party.  When I am in the throes of that mindset, I withdraw and "deal with it" (without dealing with it) solo because the only pity I want is my own.  Silly isn't it?  It takes something jarring to pull me out of my own head and thankfully, the end of the year did the trick.  That said, I did have some real highlights in visiting Josh and his family for a week, and yet another fun haunt season. 

     In looking forward to 2019, I am not making resolutions. Everyone knows we don't make it 6 weeks with resolutions so instead I am setting goals.

1-  I will address the new issue of a big old ulcer and the resulting anemia head on.  This means diet and taking the yukky medication as directed- no matter how hard it is.

2-  I will do my best to schedule my school work in a manageable schedule.    I have three classes in Spring and more than likely 2 in Fall and I will not procrastinate the homework but schedule time within my day to complete it without being overwhelmed.

3- To that end, I will work to achieve a work-life balance that includes time for self-care in addition to downtime to rest and recharge.  These are things I am not always good at even though I know they are beneficial to both mind and body.

4.  I will make it a point to spend more time with my family- be it Jim and the pups or my parents.  None of us will be around forever and we need to enjoy the time we have.  I also know I have a week with the entire family in June and I will savor it. 

5.  I am going to take 30 minutes a day for reflection and devotion.  I have my early mornings that I am essentially listening to the tube and playing games while my body catches up with my mind waking up and it will be easy enough to "schedule in" 30 minutes.  I will either meditate, write here, write in my journal or my "52 Lists for Happiness" workbook- anything to help get my head on straight to be able to start the day with a clear mind. 

     One "tradition" that I have been considering that I am going to incorporate into this year is a focus word but you know me- I can't just ease into anything so I chose two.  My two words for 2019 are: 


    To practice Gratitude, I am going to start by the simple act of saying "Thank You" to those who matter.  To practice kindness, I am going to begin by really listening and thinking before I speak; measuring my thoughts and reframing with kindness before I reply.  As someone who can be very blunt and sarcastic- that will be the toughest beginning but I am going to commit to it.    

On that note- Thank YOU- for your support for all of these years and for taking time out of your day to read this blog.  I appreciate your comments here and on Twitter and that you've stuck with me through the tough times and the good times.  I hope your 2019 is truly blessed.  


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.