RA Blog Week 2017 – Mental Health & Ra

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I’m participating in RABlog week this year and I’m very excited about it.  For 5 days there are select topics for each day with a couple of wild card topics.  One of which I’m going to definitely use.

Today is about mental health and RA.  My RA symptoms started 20 years ago at a time when my mental health was at it lowest.  Life had become oppressive to me – my boss had a nervous breakdown and four months later my then husband had an industrial accident.  I spent a year racing around caring for my boss’s clients while taking care of my husband, his injury and the workers compensation court process.  This took a toll on me and one day I realized that I was ready to drive my car into a tree.  I didn’t recognize what I was going through, but fortunately my boss did, having been there.

I was fortunate to connect with a therapist immediately.  She helped me understand depression and stress and the connection.  I also began taking an anti depressant.  Within a year I started having the first symptoms of RA.

That was 20 years ago.  3 anti depressant medications, 4 biologics since then and I’m in a good place.  But I recognize that stress and chronic pain have a huge impact on your mental health.  Perhaps I’m weak for saying that I will stay on an anti depressant until death, but I feel that way.

Earlier this year I went through 2 total knee replacements, 11 weeks apart.  Going through it was long, although I’m happy that it’s behind me.  I did have a few days when I felt the old demon of depression knocking.  Time, and some coping skills, helped me move on from that point.  But it was just enough to remind me how delicate the balance is between chronic illness and mental health.

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Labor Day Weekend

I’m relishing three days off from the bustle of the office.  I will say that it appears I have made some progress on my RA flare this week.  Monday was such a terrible morning that I called the rheumy at 9:06am and was told that he could see me at 10:45.  I hurried up a client meeting and headed to the office.  The doc took one look at me, my hands and knees and I felt his empathy.  He knows I don’t complain so he knew that I was having a tough time.

We both agreed that the Enbrel has stopped being effective.  Eight years is a long time to have a successful experience with Enbrel so it was time to move on.  Which answered my question from writing last weekend – when do you know it’s time to switch.  He suggested I try Xeljanz, by Pfizer.  It’s a pill that you take twice a day and he has had some patients that have had some success with it.  He gave me a 30 day supply and said if it worked, we can figure out the health insurance and get it prescribed.  The health insurers will pay for it only if you’ve been on a few biologics that have stopped working.  Enbrel was my third (I’ve been doing this since 2001).

He told me to start Thursday which is my usual Enbrel day, but I cheated and started Monday night.  Tuesday I felt worse than I’d felt Monday, but I persevered, even going to the gym.

Wednesday when I woke up, the painful stiffness I’d been experiencing in my fingers wasn’t there and my knees felt better.  Thursday was even better, and my boss saw me walking around commented how well I was moving.  I walked the dog that evening when I got home.  First time I’ve done that in at least a month.

I have read online that it works quickly.  However some patients get inital relief from it and then it loses it’s effectiveness quickly.  It also is one of those medications that has the long list of side effects.  It suppresses the immune system, so I will have to continue my diligence with illness.  But for today, I think that I can get outside and do some yard work and the rest of the long labor day weekend will be spent clearing the kitchen cabinets to prepare for the renovation that starts in a few weeks.  Oh Joy!

My takeaways from this week are that I am fortunate to have a doctor that can see me on the same day.  I was so happy that within a 2 hour time frame, he could see me.  I’m also happy that there are alternatives.  As he said, 8 years ago there were only about 3 products to choose from.  I’ve used all three, so fortunately there are newer alternatives on the market.  I’m also fortunate to have gotten almost 8 years of remission with Enbrel.  And I put my fitbit on this morning for the first time in months.   Onward and upward – enjoy the weekend folks.

 

 

 

Summer 2016

Once again summer has gone fast!!! It always does, doesn’t it?  Considering I haven’t felt my best, it’s been a good summer.  My RA flare is continuing and I feel it every morning when waking up.  The stiffness in my fingers and thumbs is real. And painful.  My knees hurt as well, although they seem a bit better than earlier this summer.

Acupuncture?  I’ve had 3 sessions and I’m not sure that’s what enabled me to walk all around Chicago last week for 5 days, or if it was sheer determination and stubborness.  We walked to dinner 4 nights, once even for 1.5 miles.  I would start the day with pain meds and might add another in the afternoon.  I walked slower than in past trips, and was more deliberate in my steps, but I walked nonetheless.

Cocktails and snacks with two nieces, dinner with good friends one night and 2 business dinners with Mr. Phat and lunch with some gal pals kept me busy for 5 days.

I have a few more acupuncture visits that I’ve paid for and will decide at a future date whether to continue.  My primary thoughts at this time is when is it time to change biologics?  I have been on Enbrel for 8 years.  I was in remission for most of that time, but no longer.  Is it time to explore options?  That’s what’s facing me going forward.  I’ve been trying to be patient to see if the flare resolves itself because as far as biologics go, the devil I know is better than the one I don’t know.  But when is it time to switch?

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Here’s Mr. Phat and I taking selfies with the kids on Molly’s 2nd birthday this week.

 

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Here’s lunch along the river in Chicago one afternoon with old friends.  One of which has RA so we were able to share strategies.

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This is from yesterday.  We spent the afternoon at the Sergio Franchi Memorial concert in Stonington CT.  What a fun event!!

Truth is, I don’t have much to complain about.  I’m doing OK.  RA be damned.

Spoke too Soon

Saturday I posted to express my appreciation for all the support I received from Phat50Chick.  Sunday morning I woke early and once again the left knee was excrutiating, very swollen and I couldn’t put any weight on it.  Mr. Phat ran to the pharmacy for another Medrol pack and I started my second course of prednisone in less than 2 weeks.

This time I will admit to not having felt progressively better each day.  It’s been very slow to improve.  Today I’m better, but I still have swelling, pain and still am limping, even though I try not to.  It dawned on me last night that I had lyme disease last summer and I wondered if I had a final follow up blood test to determine that I was no longer fighting it.  I called my primary care doctor this morning and he wanted me to come in for a blood test, but then realized I was on prednisone and so I can’t have the blood test until 2 weeks after stopping taking the pred.  Which is the 29th of July.  If I can go that far.  I did find this ugly graphic on the CDC website but it’s appropriate.  The right hand picture is me.  One truly fat, overswollen, can’t straighten out or bend it, knee.

medical illustration of Erythema migrans, medical illustration of Bell's Palsy, and medical illustration of an arthritic knee

Maybe it is RA.  Maybe I’m having a flare in my knee.  Maybe the Enbrel has run it’s course and I have to switch off it.  I have an appointment with my rheumatologist next week to discuss that possibility as well.  I also have a consult with a acupuncture group.  Because I’m curious about acupuncture.  But maybe it’s not RA???

As I’ve always said here on Phat50Chick – you have to be your own advocate.  Your own doctor.  Because I have RA, the ortho and rheumy didn’t think about Lyme, and my Primary Care didn’t really either.  I had to be the one to remember the lyme and look it up and think – Huh?  You can’t be too sure.

I will keep you posted.

 

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!!!

 

Sinus Infection – Again or Still?

I woke Monday morning with a sore throat, and presumed it was a sinus infection for 2 days, but Wednesday morning I knew that I had caught the grandkids germs because I had a full blown cold.  Cold meds kept me working Wednesday, but overnight I couldn’t breathe and therefore didn’t sleep.  I visited the doctor on Thursday and he gave me some antibiotics, told me to stay away from sick people (easier said than done) and sent me on my way.

This makes the third time since November 1 that I have taken strong antibiotics for 7 days in a row, which concerns me.  My ENT says I need to get off the biologic medication but my primary care says if it works, stay on it because he can treat the sinus infections.  Sure, but what’s the tipping point of developing resistance to anti biotics?

This morning I found an article on Health.com called 13 Sneaky Causes of Sinus Trouble.  I definitely have 7 issues and probably have 1 other problem.

  1.  Allergies – I have environmental allergies.  20 years ago I was tested and basically if it grows, I’m allergic to it.  Trees, grasses, mold, dust mites all affect me.
  2. Bacteria – this is principally my sinus infection issue because my sinuses can’t drain and bacteria grows
  3. Irritating Pollutants – who isn’t exposed to this in our world?  We heat with a wood stove so I would say that the smoke is an irritant.  Our world is full of pollutants
  4. Overuse of Nasal Products – am I too dependent on my neti pot?  And Afrin, which I really try to use sparingly?
  5. Lack of Moisture or Dry air?  See #3 about the wood stove.  Our house is dry, the air in winter is dry.  I try to drink a lot of fluids, but it’s not enough, I know.
  6. Unusual Anatomy – absolutely!!!  I have an Osteoma in my right ethmoid sinus.  It’s a bone tumor that blocks the opening of this sinus cavity and wreaks havoc with my head
  7. Chronic Medical Conditions – You think?  See numerous previous posts about RA and the biologics and sinus infections and my compromised immune system
  8. Polyps – these are small benign growths in your sinuses that can restrict airways and cause headaches.  I don’t know if this is a current problem, but it’s been a problem in the past and I have had surgery for nasal polyps twice in the past.

 

I had a catscan of my sinuses last week and get the results later this week, but reading the symptoms of nasal polyps tells me that this is most likely a culprit as well.  I’m not one for headaches, but I’ve been having them alot lately.  I also have had some episodes of blurry vision and I really believe that this sinus infection flared so quickly because I’ve not gotten rid of it the previous 2 sessions on antibiotics.

I’m not one that likes to be laid up for very long, or too often.  I’m missing some valuable ski days which annoys me, although I will say that I’ve had some quality time with my man and my dog while being snowbound this weekend in Rhode Island.  And I received this picture of the grandkids this morning which truly is what life is about:

the kids