Skiing

So I strapped on the skis this morning and started my season, remembering that it was two years ago Thanksgiving weekend that I realized it was not possible to put off having my knees replaced.

I did grab a couple days of late spring skiing in April and today I was reminded of how great it is to ski without knee pain!  It was truly a wonderful feeling to carve down the hill, with the wind in my sails, smiling up at the sky.  We’ve had some early snow in ski country in New England and conditions were really good for the first weekend open.   It was so good that it got crowded and I decided not to chance it and that 90 minutes was a good first outing.

Looking forward to doing this again in  couple weeks.

Happy Thanksgiving weekend everyone.   It’s small business Saturday.  I’m heading out to a local store to do some shopping!

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RA and other things

I’m sorry that I’ve been AWOL from my blog.  I haven’t felt like writing and don’t have much to say about my RA.  It’s there.  It doesn’t really impede on my life these days.  I’m managing it, even though I’ve had some blood work that has shown my inflammation markers to be high.

No wonder.  This year has been about Mr. Phat who started having issues last year with mobility and numbness and tingling in his extremities.  We have done the medical tour, as he likes to call it, seeing our primary doctor, a neurologist, a lyme “specialist,” the cardiologists, my rheumatologist, the pain management doctor, the orthopedic surgeon, the infectious disease clinic in 2017.

Things were ruled out, and more tests were done and he had a spinal fusion in March.  It has been a difficult recovery and the end result is that it did nothing.  Well that’s not true – it left him with severe pain in the lumbar region that he didn’t have prior to surgery.  The surgeon states that he could be one of the 5% of patients who come out of surgery with more pain than going in.  That said before he dismissed us because at this point Mr. is no longer a surgical candidate.  We had explored having cervical surgery as well for degenerative discs, but have decided that we need to explore an underlying neurological issue before we do any more surgery.

Which lead us to a new neurologist who built up our confidence because he said he wouldn’t stop until he found out what was wrong.  He ordered some tests and actually called Mr. twice after receiving blood work to discuss the results.  We were impressed with his diligence.  He scheduled a test with his partner for 10 days ago and we got there only to learn that the test needed to be done in the hospital because Mr. has a defibrillator.   This fact was disclosed and discussed at our initial meeting, but somehow got lost.

No follow up phone call from the neurologist this time, which was incredibly disappointing.  The hospital called to schedule the test and the earliest it can be done is January 29, 2019!  That’s two and a half months away!!!  Totally unacceptable but what choice do we have?

I have always preached on this blog about being your own medical advisor and asking all the questions, and I’ve followed that with Mr. and his unknown condition but it’s been frustrating.  No, it’s beyond frustrating. It’s demoralizing too.

We are continuing to search for answers and going out of our network for better answers and we are thankful for a good health care plan, but we sure could use a break.

RA Blog Week Epic Fail

I failed RA Blog Week.  I knew I should have said no last week because I knew that it was going to be difficult to keep up.  But I really enjoy the sharing that occurs during RA Blog week.  These are my friends that share my chronic illness. They know what I’m going through, and I know what they have to deal with each and every day.

I’m not sure how it is that I make it through my days lately.  Work is soooo busy.  It’s a good thing.  The past few years were unhappy work years and a year ago they moved me to a new team and I have soared!  It’s so fun to feel successful again at work and to be recognized and to know that I can do it.  But it’s hectic and stressful and this week I had a difficult situation with a long standing client that definitely challenged me.  I questioned whether I was cut out to continue doing this work.  I really asked those questions as I struggled with my situation.

The situation is only half resolved, but I’m pushing through it.  Which is what I do every day of my life with RA.  I push.  I got this.

In keeping with RA Blog week – I’ll give you a few things that certainly help me get through my days.  I have a great support system.  Mr. Phat is incredible in understanding what I deal with.  I have good friends that know I have limitations and that I have good and bad days.  I have my fellow Bloggers.  They really get it, they support me and encourage me to move on.

I have a great set of doctors.  I can typically get in to see them on the same day if I need to.  I have access to medication and can afford to pay for it.  I am not at all reliant on pain meds any longer after having my knees replaced and I am thankful for that.  The whole pain med arena is so difficult nowadays – chronic pain patients struggle with getting the meds that they’ve used responsibly for years.

I am a medical marijuana advocate.  I think that if properly understood and used, MM can be a life saver for chronic pain patients.  I have a CBD oil that I use for my painful joints and it does help alleviate the pain and calm me down.  I’ve been an insomniac for years and recently realized that the benadryl and melatonin I was taking made me much more restless than sleepy.  I’ve been taking half a CBD gummy most nights and sleeping far better than anytime in my adult life.

I want to thank Rick Phillips of  RA Diabetes.  for putting RABlog week together – it’s an incredible event to share with fellow chronically challenged patients.

The Medicine

Or the unofficial title would be The Pain Medicine.  I feel very sorry for chronic pain patients who have been forced to taper off their pain meds because of current attitudes in the medical community, and society in general.  There is a great opioid crisis but I can guarantee that the chronic pain patients aren’t abusing their pain meds.  No, they’re holding onto their treasure chest of pain meds, counting pills, rationing and hoping they will be able to get more.  I read The National Pain Report regularly about patients who are limited to 25% of what they used to be prescribed, as well as those that have been shut off.  Sadly, I also read about the increase in suicide by pain patients who can’t take the pain any longer.

My experience with Pain meds was a good one.  For the first 19 years of having RA while I had pain in a number of joints, my knees were mostly affected.  I was mostly bone on bone for years.  I still walked, exercised, worked and skied.  Yes, I took a lot of pain meds in order to do all those things, but I have a never quit attitude and there was no way pain was going to stop me from life’s activities.  For almost 20 years I  had vicodin available to me.  Sometimes I went months without taking them, and other days it took a pill or three to make it through my day.  I never abused the meds.  I misused them once when I shared several with a woman who took them all at once.  I was flabbergasted and knew I had done something wrong but that was many years ago before we knew about opioid abuse.  I subsequently lost a friendship because I wouldn’t share.

But what I can say is that having the ability to have those pain meds kept me working.  I still have a terrific job with great benefits and being able to pre medicate on those mornings when I needed it has kept me in my profession.  I also was very fortunate to decide to replace my knees last year.

If I hadn’t had my knees replaced I’m pretty certain that I wouldn’t have access to the pain meds that I used to have and I’m not sure what the quality of my life would be.  So for those chronic pain patients who have lost their pain meds, my heart and soul are with you.  We need to realize that our regulations have gone too far the other way for some people.  Let’s work on the illegal fentanyl and heroid and leave the chronic pain patients alone.

RA Blog Week

So it’s the 4th annual RA Blog Week organized by Rick at RA Diabetes.  It’s a great opportunity to interact with fellow RA patients and to share our frustrations, pain and accomplishments.  I also haven’t posted in a long time so I’m hoping to have the opportunity to post a little bit this week.

Sunday, Funday

Morning and Happy Father’s Day.  It’s a beautiful day here in New England and after working hard yesterday in the yard, Mr. Phat and I are looking for a day of relaxing by the coast.  We both could use a day of down time.  He’s still recovering from his spinal fusion and finally is experiencing some relief from the pain.  He’s got a long way to go but is moving in the right direction.

I had an extra busy winter and spring with taking care of him, and working a new position at my office that I love, but it keeping me VERY busy.  It’s fast paced, high energy and has pushed me back into sales in a satisfying way.

I also spear headed a reunion weekend at my college in Maine which was attended by almost 100 people from my class and 1500 from all classes.  It was a very successful event and I made it home, full of nostalgia and love.  The next night I started with the sore throat and fever and by morning was feeling lousy.  Just what I didn’t need, was to take 2 days off from work, but I had no choice.

But, there is a huge difference for me now, than there was with my prior medication regimen.  I loved Enbrel, but I would get very sick, be down for 7 – 10 days, and need anti biotics to clear my sinuses and lungs.

With Xeljanz XR, it’s a daily pill, so it basically leaves your body each day.  When I feel punk, I pass on taking it, helping my immune system work on the germs.  The enbrel stayed in my system for a week or more, so unless I got symptoms on the day I was to inject, my immune system was too compromised to fight the bacteria.  My ENT told me several years ago that it was the worst drug for my sinuses, but it suppressed my RA so well, what choice did I have?

This week, I got sick Monday night and didn’t inject the MTX either.  I skipped Xeljanz XR for a couple of days and managed to get to work after 2 days sick – which is new and different for me.  (ok, a little more joint pain, but since I was laying down, it didn’t really matter)

I was really bummed when Enbrel stopped working, but in hindsight, I have found benefits of my new drug regimen.  Wishing all of you health and happiness.

Happy Memorial Day

Let us not forget what the day/weekend is about.  It’s to honor those that gave the ultimate sacrifice for our freedom.  Freedom isn’t free, and we need to remember that.

I didn’t intend to do a post this morning – I’m busy prepping for family dinner later on and I feel like I don’t have much to say.  My RA is in check and I’m going about my life with little interruptions from pain and maybe an occassional tylenol.  Mr. Phat is very slowly recovering from his spinal fusion 10 weeks ago.  If he does too much, it sets his nerves spiraling and then he goes backwards.  but he’s learning to moderate and  count his spoons.

What triggered me to write was that I have a letter from  Blue Cross asking about an ambulance ride I took last year and they were wondering if there was a third party that may have been responsible.  They’re looking to subrogate the expenses (that’s a term we use in insurance all the time).

The ambulance ride was because of an auto immune response that I had in my two week old Knee  replacement.  The joint filled with blood and it was by far the most excrutiating pain that I have ever felt.  My husband couldn’t move me to take me to the hospital so he did call the ambulance.  The date this happened?  May 27, 2017.  One year ago today.  So I’m happy to commemorate this Memorial Day by not spending a night in the hospital and to be able to spread mulch and help Mr. Phat with dinner for 10.

I’m also fortunate to have my 80+ year old parents visiting this weekend.  Mom went to her 60th reunion at Brown University yesterday.  She caught up with old friends and walked around the campus and the east side of Providence.

So thank you to those who have served, to give us the Freedom to be.  Happy Memorial Day.