Staples out, rehab continues

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You can see the metal parts that were put into my knee 2 weeks ago during a total knee replacement.  To me, it seems pretty clean and neat.   I saw the surgeon yesterday and the staples came out of the incision.  I have to admit that the incision is very ugly but I’m told it will recede and I’ve sent Mr. phat to the pharmacy for some oil or cocoa butter to soften it and help healing.  The doctor said that my movement is very good.  I really have to work on straightening the knee.  Bending is great, but straightening it hurts.  Unfortunately the other knee is very painful of late.  Obviously overuse has worn it out.  It has no meniscus, so will need replacing at some point down the road, but I was hoping a bit later as opposed to sooner.

I have several options at this point with the non surgical knee.  I can try another injection of Synvisc, which acts as a cushioning agent.  I’ve done that two times over the past 6 years with good success.  Sadly my health insurance doesn’t cover it and it’s expensive but I will check with my pharmacist and determine the out of pocket cost.  I can also have a cortisone shot, but that’s a real bandaid and very temporary.  Lastly, I can sign up and have another replacement.  The latter option I have a lot of reasons why it’s a good idea, but the honest truth is that I wanted to be able to wait a year or two before going thru this again.  Time will tell.  We shall see how the non surgically repaired knee responds to being back on my RA meds and sleep on it and make a decision down the road.

The surgeon said to walk as much as possible.  So I’ve just done a little much needed housework to loosen up my legs and done some stretching.  He said to continue the home rehab exercises and see how I do.

Each day gets better.  I’m sure that will continue.  Thanks to all of my readers for all your support and good wishes.  It means more to me than you know.

Almost 2 weeks post op

Tomorrow will be 2 weeks post op for me.  It’s gone by quickly even though at times the minutes seem to be like hours.  Overall I’m doing well.  Progressing.  The surgically repaired knee is now my Good Knee.  My Strong Knee.  It’s stable and sturdy and feels good to walk on.  To that end, I walk mostly unaided these days.  I’ll use my cane overnight or for the first few steps in the morning, but otherwise it is not necessary.

My hurdle has been the other knee which no doubt will be replaced in the future.  Being off the RA meds since the beginning of February has caused the expected flare.  In my hands, wrists and the other knee.  The other knee formerly known as my good knee.  The pain has caused me to cry for a few moments most days.  I get overwhelmed, tired, behind on pain meds or just feel a bit sorry for myself.  I sob for a few moments and then rally.  Because that’s what RA has taught me to do.

I was supposed to stay off the RA meds until after the staples were removed, but I will confess to starting the methotrexate 4 days ago, and the Xeljanz 2 days ago.  The swelling in the new knee has diminished, my physical therapist says I’m doing great – I did climb a set of stairs yesterday and walked down the street and back up (it’s a hill).  Today is the first morning I’ve not cried since surgery.  Yes, I was stiff and sore, but the pain seems manageable and the RA flare is being extinguished.

I’ve had incredible support from Mr. Phat.  I couldn’t have gone through this without him.  He’s held my hand, cooked meals for me, and most importantly is my Iceman.  He keeps my icing mechanism full – he says I have a $4 a day ice habit and we’re not even making margueritas.  My parents drove down over the weekend for a visit which proves that you can be 55, but you’re still a daughter.  Mom needed to see for her own eyes that I was doing well.  I’ve had tremendous support from my friends and colleagues at work, which has helped me go through this challenge.  And my ski group, Team Cannon, left for the annual trip to Switzerland over the weekend.  I know that my spirit went with them.

Stay tuned for more updates.

In Like a Lamb

March definitely came in like a lamb, compared to the last few months.  Since November I had gotten sick in 4 consecutive months.  I think it was actually the same infection that kept rearing it’s head.  Finally, the 4th course of antibiotics, coupled with a new allergy medication seems to have done the trick.  I’ve been healthy for about 5 weeks.

I did stop the injectible RA meds for 6 weeks.  Over the past few years I’ve wondered how well they really work.  I found out.  By the long weekend in February my wrists hurt enough to need ice, my knees hurt like days of years ago, pain meds barely touched it and exhaustion ruled.  I started back on the President’s holiday with an injection of Enbrel.  The following Monday I did an injection of Methotrexate and this morning was Enbrel.  I thought I’d try alternating weeks rather than taking both each week.  Perhaps too much immune suppression lowered my defenses too much.  So far so good.

Finally I got a chance this past weekend to try out the gear I purchased:

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And it was a beautiful weekend to do so!!  This is Mount Lafayette, across from Cannon Mt20160306_083551 [141181]

This Picture is from the Mittersill Chair looking over to Mt. Lafayette. 20160306_100725 [134286]

And here’s a selfie – not a great picture, but I was having a ball!!!

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The season isn’t going to last too long in New England this year, so I gotta ski while the skiing’s good.  Thankfully my joints feel good enough to be out there.

 

Frustration

I follow a number of blogs by individuals with chronic health issues, most of them with Rheumatoid Disease like me.  Seems to be a common theme of late – we are all frustrated by our health, our doctor’s and their offices and the medical insurance community.

For me, the frustration is that I’ve been unable to fully get rid of this upper respiratory infection that I’ve had on and off since Halloween.  I would get well enough to think it was behind me and I would resume my normal activities and then WHAM, it would knock me on my butt again.  This happened 4 times, and this past week when the fatigue and sore throat returned I called my PCP and got in to see him that day.  I expressed my frustration and my fear of constant anti biotics, but unfortunately due to my anatomy the bacteria gets stuck in the sinuses and it seems strong anti biotics are the only way to rid my body of the gunk.

He prescriped a stronger anti biotic and for a longer period of time.  He also prescribed Singulair pills at night.  I need another script like I need a whole in the head, but he said that this helps the underlying allergy issue (which I have) and maybe it will help what ails me.

It gave me the chance to discuss my ENT and Rheum Doc visits that I had in the past week as well.  The ENT had gotten the Catscan results of my sinuses.  The passages looked clear, with one exception and therefore he didn’t think I needed sinus surgery.  However, there is still the large bone tumor that resides in my sinuses and that could be part of the trouble.  We decided that I should have a specialist look at it to see if there is a way to extract it.  I haven’t seen a specialist in 20 years and at that time, the surgery required wouldn’t be pretty.  The ENT also reiterated getting off the Enbrel.

My Rheum doc said my meds were fine, everything was fine on his end.  He doesn’t see a lot of patients that seem bothered by sinus infections who are on Enbrel.  He said he doesn’t think that the Enbrel is causing the infections.  However, he agreed that the less medication I take, the better it is and perhaps spread out the injections and see how I do.

So I’m stretching out the Enbrel, and going about 10 days in between methotrexate injections, taking Singulair and a steriod nasal spray while using the neti pot daily.  Hopefully I will be headed down a better road shortly because I love winter!!!

 

‘Talk About Your Medicines’ Month

So I was recently approached by a woman that is the Community Awareness Coordinator with the American Recall Center.   She helps to educate individuals on recall updates but also is an advocate for medicine safety.  October is Talk About Your Medicines Month and she asked me if I would do a post for her about my medications.  She gave me a guide with some talking points in the event that I needed assistance with a topic(s).  After giving it a little thought I knew that I had a great blog post regarding medicine safety.

As someone with Rheumatoid Arthritis Disease, aka RA or RD, I do take several medications to calm my immune system, reduce inflammation and help with pain.  One of those medications is Methotrexate (MTX).  I’ve taken it since August, 2001.  Initially I started taking it once a week in pill form.  Several years ago – probably around 2011, I discovered that it came in an injectible form.  I’d been having some issues with being sick from the pills and I asked my rheumatologist about it.  He thought injecting MTX was a great option for me since we’d been splitting the 5 weekly pills of methotrexate into 2 doses during the week instead of one dose as a way of making it more tolerant for my system.  What I discovered was that instead of feeling sick one day per week, I was sick two days per week.

I started on the injectible form during the summer and immediately noticed how much better I felt!  No more sickness.  And because I wasn’t being sick and purging the medication, I started feeling much better because I was absorbing more MTX.  The RA definitely retreated and I needed less pain meds and less anti inflammatories.  Everything was fine until earlier this summer when  I started getting sick again.  So much so that I actually left work at noon one day and went home sick.  I don’t do that often.  A couple weeks later the same thing happened and I was very sick again.  The most ill I’d been since started the injectible Methotrexate.

I went into my medicine supply to look at the little bottles that I’d been given.  I had a number of different sizes that the pharmacy had given to me for several months.  I compares all the bottles – from the old supply and newer doses and I noticed a difference in the small print on some of the bottles.  Over the years I’d always had MTX that had preservatives in it.  I could reuse the same bottle a number of times and store it in the cabinet in between doses.  I noticed that some of the bottles said “preservative free” on the label.  I had never been given this type of med before but I suspected that if I was re-using a bottle of preservative free meds, I could be getting sick.

I stopped at the pharmacy the next day and the pharmacist confirmed that I had been receiving MTX with preservatives in it since starting to take it in 2001, but for some reason the form had changed recently and while the lettering on the bottle noted the change, nothing in the notes on the script explained the change to the meds or that I wasn’t supposed to reuse the bottles.

Problem solved.  Lesson learned:  Be very observant about everything as it pertains to your prescriptions.  Ask questions.  Trust your instincts and most of all, remember that it’s your body and you will definitely know if something is wrong.

Phat Chick is Back!

Yes, I’m BACK! How many times have I said that?  I guess more than once.  Life gets in the way, no matter how hard you try not to let it.  This winter has been a long cold one in New England, and that got in the way of outdoor exercising somewhat but the dog and I still got outside regularly for walks in the woods.  I took several  pilates classes and will continue doing that, but I had stopped the private training with Sargeant Cathy early this year.  I had wanted to get to a couple of her classes and made it to like one and logistics and life got in the way.

I’ve been down with the flu for almost 2 weeks – as you know, with the Rheumatoid Arthritis medications, getting sick can be grueling and this was no different.  But I spoke to my girlfriend this morning and told her that I was going to class at Sargeant Cathy’s after work today.  My friend said she wanted to come and we hung up.  Five minutes later she sends me a text to say that Cathy would do a joint training for the two of us later this afternoon before the class instead.  That’s what I thought – INSTEAD.  No, after doing an hour of ropes, kettle bells, elastic bands around our ankles and the bosu, we stayed and did Strength Training class as well.  So I did an hour and 45 minutes before I totally lost it and quit.  It’s been 3 months since I took a class and I’m still recovering from the flu.

But I did it  and we’ve set up a regular time each week for a joint training session and I’m sore already, but it’s a good sore.

So stay tuned and keep your eye on this blog.  I told Cathy that having a friend beside me made me work harder, and my friend JG thought so too.  Here’s to beginnings.  Again.

Lastly, because I live in New England and listen to sports radio, today was devoted to commemorating the 1 year anniversary of the Boston Marathon bombing.  Boston truly is BostonStrong.  So proud of this city!!

Rheumatoid Awareness Day

As a person with Rheumatoid Arthritis I’m very happy that they have created an awareness day for us, and they are renaming it Rheumatoid Disease.  RD is different from Osteo Arthritis and it affects other parts of our bodies besides the joints.  So as to stop confusing the two, they’re renaming it Rheumatoid Disease.  Often when I tell somebody that I have RA, they’ll say “oh, my grandmother has that.”  Probably what I have is so much different than what your grandmother has.  It’s not your grandmother’s arthritis.

Below I have posted the RD Awareness Ribbon and part of the press release!

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Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.  The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease.

I’m very excited about Saturday.  Hopefully I’ll be doing something that my Dr can’t believe I still can do – skiing.  Meantime, it’s Monday night.  Time to inject my methotrexate.  Have a good night all.