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Thursday, November 8, 2012


It has been a long time since I have been back here.  There are good reasons for this. Last January, I started with the Remicade infusions.  At first, there was little change in how I felt and functioned, then, slowly, I could feel the old me coming back, a bit.

This summer was full of activity for us. I was at times elated at the things I could do and the way I felt, while at others, I was frustrated that I couldn't do more. July was particularly busy and by the end, I knew I was slipping backwards, for sure.

With my rheumatoid arthritis, I have learned that if I let myself get rundown, infusions are less effective and wipe me out more.  After August's infusion, my rheumatologist decided it was time to increase the dose for infusion.  We also discussed changing some of my other meds.  For instance, I will most likely be starting with methotrexate injections, instead of the oral dose I take once a week (Methotrexate Mondays = Tired Tuesdays...ugh).  At this point, the increase of Remicade has had, in all honesty, no noticeable effect. This fall, has been such a letdown.  Fall is my favorite season. I love the colors, the feel and the smells.  I look forward to decorating, picking apples, making Gram's Dutch Apple cake, canning apple butter, planning our annual fall party, "September Soiree".  I take pride in our home and making it warm and inviting while preparing for the colder months to come.  Not this year.  I cancelled the party.  I just couldn't do it.  In fact...I barely participated in fall this year at all.  Because I felt, That.  Bad.

Here's the thing.  Fall didn't get cancelled because I was having a pity party, it was cancelled because I PHYSICALLY was not able to make it all happen.  I had pushed my way through the summer, telling myself and everyone else that I was doing great.  I wasn't.  I have been slipping backwards for months.  And about two weeks ago, I was starting to realize just how much.

I would lay down and my heart would beat so hard, I could feel it in my throat.  I was short of breath and pressure was building in my chest.  I have always had a slow and irregular heart beat.  I get a couple beats and a loooonnnnggg pause before another beat.  Lately, beat after the pause, comes as a huge THUMP! that can be seen just looking at my chest.  I have been here before.  Last time, I ignored too long and found out there was fluid around my heart and lungs (Pericardial Effusion) and was taken via ambulance from the office where I had just been given an echo, to the hospital.  Two days before Christmas.  Fortunately, there was a Christmas Miracle (as the nurses and doctors labeled it...and I agree!) and the fluid dissolved without any invasive treatment and I was home in time for Christmas.  I didn't want to progress that far again,so I called my doctor. I always hesitate, fearing that, I am making too much of things.  I am glad I did.

I wasn't going to write anything about this. But last night, when talking to my husband and finally telling him my fears and how misunderstood I feel...and scared I have been, he reminded me that here is where I am most understood and that I was doing a great disservice to the many that come to read and relate and be comforted.  I agree.  Not because I think I am some great, inspirational writer, but because I am moving through something in life that others are too.  Three times this week, I was told I was either at great risk for death, or "You could die".  Death is inevitable for everyone.  Ignorance is bliss.  There is only so much I can do do control when my time is up.  What I intend to do with the time from now until then, I intend to be quite powerful.  Every day, every second, someone, somewhere is learning what their fate will be.  By disease, violence...and sometimes, choice.  There is a silent pride that most of us carry.  As well as, a lack of self-importance.  Together, those two things can be life-threatening.  If I can change that for at least ONE person...

Right now, I am being monitored daily and feel like everyone has things under control.  Short story.  When I called, my PCP wanted me to come in. An in-office EKG showed an abnormal heart beat.  They called it, bigeminy with PVC, which lots of people have. The problem for me is the long pause, the shortness of breath , pressure, pain and feeling like crap. They told me to go home, pack a bag, make arrangements for the kids because they were going to admit me overnight for observation and cardiac consult.  I was in the ER for about 6 hours, they could see what was happening, gave me troprol (said to make contractions stronger), monitored me for about thirty minutes, told me they spoke with my docs and were going to send me home.  I was all good with that, I could be home in my own bed.  And because they told me they spoke with docs, I thought I was fine.  Not so much.  At 7:15 am, the docs office called and wanted me to come in for a follow-up.  They were upset that I was sent home.  The hospital reported that I was feeling better (never said that) and was asymptomatic. I was asked what happened in the er. I told them.  Doc's words, "Liars!  That has been happening a lot."  Repeat ekg.  No change. Pressure in my chest is a bit worse and I still feel terrible.  I am sent for an echo and to a cardiologist.  Cardiologist somewhat dismisses my issues and states, "lots of people have these [PVC'], I have them too."  Really, so do I.  In fact, I have known I have had them for as long as I can remember.  Ass.  Never complained about them before. Ass.  I WAS SENT TO YOU...didn't decide I had nothing better going on and thought I would come and chat with you.  ASS!  Adding(with a smirk), "Next time, take an extra dose of the troprol instead of going to the er."  I knew right then and there, this was not the doc for me.  He spent 10 minutes with me.  Listened to my heart for no more than 10 seconds.  I cannot say whether or not, for sure, if he viewed any of my file at all.  What I can say, if he had, at all, he would have know what I, thankfully knew for myself.  I have a low heart rate.  That is a blood pressure medicine.  Doubling up...not good at all.

That night,  There is greater pressure in my chest, shortness of breath is worse and I have pain near my collar bone/shoulder area and around my back (bra strap level and higher).  In my head, I am wondering, if I am either having or going to have a heart attack.  I know that if I call the doctor, they are going to send me to the ER (not much faith there).  I am also thinking, "what if it's not?  I will have to call someone for the kids, Jim will miss on sleep and be late for work.  But what if it is.  Having RA already puts me at risk for heart disease, not to mention it runs rampant in my family.  Granddad.  My Aunt who went to lay down a year ago, and never woke up.  No no no.   It could be the fibromyalsia.  You haven't been feeling well.  But what if it is not.  I am also thinking about the fluid around my heart and the increase pressure in my lungs indicating the same fluid issue.  And I hope it's that.  That can wait until morning, right?"

I am on a lot of meds.  Most people with RA are.  And a new one has just been added since the last trip to the ER.  Our neighbor is a pharmacist.  I don't want them to know or worry...or think I am crazy, so I try to make lite of it.  I need to know if an aspirin will have any interactions with anything I am taking. I get the green lite.  Chew the aspirin, pray and go to sleep.  Next morning, I call the doctor's office.  I am told to go to ER, NOW.  I hesitate. It is a lot.  I don't want everyone to worry.  What if it's nothing?  What if they send me home again?  I call back and tell them not to look for me there and I tell her that I will just do what the cardiologist said and double up on the toprol.  She strongly advises me over and over again to go to the ER. I get off the phone, pill bottle in hand...put it down and try to continue the day.  Noon. I am not at all better.  I decide I will shower and if I still am not better, I will relent. Doctor's office calls and says they want me to come in for another EKG.  No change.  The nurse notices that I am dizzy when I sit up and decides to take my blood pressure and heart rate.  26 beats per minute.  TWENTY SIX.  Doc comes in and asks what cardio doc had to say.  I tell her about the "double up".  "YOU CAN'T DO THAT!  NOT WITH A HEART RATE OF 36!!!".  Know your body.  Listen to your instincts.

I am outfitted with a halter monitor and scheduled for a tilt table test.  Increase steroids to 40mg per day (CRAP!  I was down to alternating dose of 5 or 10mg/day!  There goes that 30lbs I have lost!).  They draw blood for Cortisol and order up more blood work.  I am also asked to call the next day and give a report.

While I was in there, I was very apologetic.  I was.  When the doc walked in,I said, "I am sorry.  If you tell me right now to go in, I will."  She is reassuring and comforting and tells me she understands why I didn't want to go to the ER, "Because they didn't do anything for you. But I needed to see you."  The nurse is just as wonderful and tells me a story as she is wiring me up. The morale of the story was that you should always listen to your gut instinct.  And that it is easier when it comes to your children, but hard when it comes to ourselves.  She is so right.

There was a flurry of activity in that little exam room for a bit.  Another doctor came in to talk to me about what is happening.  They aren't sure, but have a plan.  He explains the two avenues they are exploring.  I feel so defeated and at the same time, oddly, relieved.  I thank both doctors.  Doctor W.  says to me, "Rachel, don't feel like you need to be sorry or that you can't call.  You are symptomatic.  There is something going on and we are here to help.  This is the exciting stuff.  This is the stuff we went to medical school for."  I can't believe I didn't break down right there.

This is My RA.  We knew this from the start.  For me, it is beyond degenerative joint inflammation and pain.  It is constant low grade temps. Stiffness.  Exhaustion. And worry when there is pressure in my chest and I have difficulty breathing.  It is wondering when it is the right time to call.  What to shrug off...and if I shrug this off, will I be OK?  It is a basket full of pill bottles, constant monitoring prescription supplies and 3 pill boxes because morning, noon and night I swallow at least 24 pills, total to keep me moving.  It's pushing myself beyond what my body wants me to, because I don't want to accept that I can't do something.  It's scary.  It's telling your husband that maybe we should hold off his "procedure"...because if something should happen to me, and should he want to have another child with someone else, we should wait.  Yes, it is that scary.

I am not weak. I am struggling.  This is not easy. It never has been. I have never been "unflared".  The effects have been somewhat lessened, but never quieted.  My RA is exhausting.  Just when I came to terms with what I thought life with RA was going to be like, everything changed, again.

I know this is more common that many are aware of.  Please, listen to your body.  Don't take chances.  And know that, just because "DR." precedes their name, it doesn't make them the boss of YOU.  Two times, in three days, I was dangerously disregarded.  In the three years that I have been discovering My RA, I have learned this:  If you are sitting in that examination room, and it doesn't feel right...leave.  Then go and find your "right".  This is your life and only you can determine how you are going to live and move through it.  Never again will I put my head down on my pillow at night and wonder if I have just kissed my babies and husband for the last time because I am at odds with what my instincts are telling me and what some "DR." smirked off.  Never.  Ever.  Again.

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