Tag: rheumatologist

Thursday, January 21st, 2010

Rheumatoid Arthritis: What Six Months of Sickness Has Taught Me.

The past 6 months have been somewhat like a bad dream.  I never could never have imagined being sick for this long with so many different ailments.  I can’t help but wonder if all the years on methotrexate had such an effect on my immune system that everything kind of shut down for a while. With all this down time I have had the opportunity to learn somethings about myself.  I thought I would share some of what all this sickness has taught me.

  • Trust your instincts. When two of my doctors had conflicting opinions on whether or not I had a second or continuing Lyme infection I should have trusted my instincts.  I could have saved myself valuable time and pain and not have subjected myself to way too many diagnostic tests had I just trusted my gut.  I know my body better than anyone else and I knew that I still had Lyme Disease. I shouldn’t have allowed my rheumatologist to talk me into more tests to prove that her opinion was right when I knew deep down inside all I really needed was another treatment of antibiotics.  When I finally got the antibiotics was when the symptoms went away and I started to feel better.  Lesson learned. Again. I hope this time it sticks.

  • Lyme Disease is something to take very seriously. I have had Lyme Disease in the past.  I thought that I knew and understood what this disease could do.  I could not have been more wrong.  I have never in my entire life felt more physically ill than I did with Lyme Disease.  I can’t say whether or not the Rheumatoid Arthritis (RA) had an effect on the severity of the Lyme Disease but I know that the treatments for the RA had an effect on how well my body was able to handle Lyme Disease.

  • I need to nourish my body and my soul. I have always been the one who puts everyone’s needs before mine.  It wasn’t a conscience decision, but none the less other things took priority in my life. Now every day I am slowing down and taking time to do things that nourish my soul.  Things that bring me joy nourish my self. I find that I have more patience and energy for other things after making my self a priority. Before I put anything into my body I am asking myself will it nourish me or fill me.  They are two very different ideas. I have tried to eat responsibly in the past, but I haven’t always looked at what I am putting into my body as nourishment as opposed to something that will fill me up.
  • Don’t be afraid to ask for help. Being an independent person and a bit of a control freak I frequently would rather do something myself than ask for help.  Part of me just didn’t want RA to get the best of me.  I felt like it was a bit of a battle of wills.  I wasn’t going to let RA take over my life completely, I could do most things myself and I hated to ask anyone for help.  Being as sick as I have been, I have had no choice but to ask for help.  There were days when getting out of bed to go to the bathroom was an ordeal.  An extremely painful ordeal.  It was simply impossible not to ask for help with some of the most basic of needs.  I discovered that the world did not end and it was okay if things were not done “my way”.
  • A clean is nice but really not all that important. I used to care very much about how clean my house was.  I felt that how my house looked was a reflection on me and how I cared for my family.  I know that sounds a little nutty but that is how I felt.  I really felt like I could not physically do a great many things anymore but I could take care of my family and a clean house was part of that.  Of course now looking back I can see how crazy that whole idea sounds.  My house currently is picked up. No one is going to trip over anything in my house, but it is a far cry from clean and I really don’t care.  I could spend the next few hours cleaning, or I could spend the next few hours playing with Kevin or reading a good book.  Now I choose something that will fill me up instead of depleting my resources.

  • Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways.  There is comfort in knowing that there are people out there that completely understand what I am going through.  I am very grateful to all the new friends that I have found here and for their kindness and support.
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Wednesday, June 24th, 2009

Rheumatoid Arthritis: Redirecting My Focus.

I have watched the Star Wars movies over the years many times.  At one time or another each one of my boys has gone through a Star Wars faze when they want to watch all of the Star Wars movies over and over again.  I have seen them all many times. The past few times I have to admit I probably was doing something else while one of the boys was watching.  Kind of a been there done that attitude.  They are all good movies but my attitude was I know how it all ends so maybe I’ll direct my attention to other things while he (which ever boy that may be at the time ) enjoys the movie. This morning was no different  when the sky was gray and it was still raining outside my youngest, Kevin asked if he could watch Star Wars – Episode I – The Phantom Menace. Not a problem. In the movie went. My thought was the house will be quiet for a few hours with the two younger boys being separated while Kevin watches this movie.

I was sitting in the room with him paying some bills and tending to some email’s that needed my attention when I heard the most profound words…..The character Qui Gon is speaking to Anikan Skywalker and he says “Just remember,  your focus determines your reality”.  I stopped what I was doing and just sat there.  I repeated the words “your focus determines your reality”  All I could think at the time was. Yes. That’s it. That is exactly what has happened for me.

There was a time in the early days of the disease when my focus was on my limitations . That was all I could see, what I could no longer do.  I spent a great deal of time feeling sorry for myself and worrying if I would end up in a wheelchair or bed-ridden.  It was a really dark period of time for me and the more that I focused my energies on fear and pain the worse it seemed to get.  I had very little confidence in my rheumatologist at the time and it certainly didn’t help my state of mind whenever I questioned him about my course of treatment he would say things like “We don’t want to see you in a wheelchair, do we?  He seemed to be echoing my worst fears.

I took me several years to work up the courage to take my life back.  I read really good books that helped to change my perception of myself.  I did something that at the time was very uncomfortable for me and accepted help from anyone and everyone who offered it.  I slowly changed my thinking from what I could no longer do to what I can still do.  Every day I had to make a conscience effort to focus on the good in my life so that goodness started to become my reality.

It was not an easy transition.  I had to take a hard look at what was really important to me and I had to address what it would mean if my worst fears were realized.  Would it change who I am as a human being if I did end up in a wheelchair?  It would certainly change my reality. Things would be very different for me and my family. But would I as a woman, as a mother, as a life partner be different?  The answer came back yes and no.  Physical changes would limit my ability to do things and because of that my life would change, but fundamentally who I am would not.  I would still love my family with abundance and still share with them all my joy and happiness.  And when I really, really thought about it I came to realize that this body, my body,  is just a vessel.  Sometimes it is a little rough around the edges but still just a vessel housing the who that I am.  And most importantly I am so much more than this body that I have been given.

I still wake up every morning stiff and sore.  But my immediate thoughts are not on how the stiffness will limit my day.  My first thoughts are what will today bring? What is on the agenda for the day?  Where is my husband so I can give him a kiss?  What a nice morning hug from my Kevin  that was. Most importantly  I am so grateful for having been given this day. It has made monumental effects on my life and how I live it.

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Friday, June 5th, 2009

Check Your Prescription Bottles Carefully!

Correct R/X Label

Correct R/X Labels

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Incorrect R/X Label

A few weeks ago I decided to try ordering a refill for my prescriptions online. I ordered the refill from the same pharmacy chain that I always use just the online branch instead of the brick and mortar store.   Because we live in a rural area and it is bit of a pain to make a special trip for refills I thought that I would save myself some travel time and some gas money and just order the refill online and have the medication mailed to me.  I have ordered refills online in the past, but I have always driven to the pharmacy to pick up the refill.

This was the first time I had tried to have the medication refilled and delivered to the house.  The process online was fairly easy and straight-forward.  I just had to input the prescription number and within 7-10 business days I could expect to receive my medication.  I made sure that I had plenty of medication with me and allotted the appropriate amount of time so that I would be sure that I would not run out before the refill came in.    I thought that if this worked out I could save myself some extra running around.

When the medication came in I checked to make sure that I received the correct medication.   I opened each bottle and inspected the pills making sure that they looked exactly like the previously filled prescription.  Everything looked the same so I put the pills away and didn’t think about it again.  

Well it just so happens that I had a rheumatologist appointment coming up so I always check my pill bottles before I go to see if I need any new prescriptions.  My doctor doesn’t like to do refills over the phone so I always make sure I check to see if I am due for a new one.  When I pulled the bottles out of the cupboard I realized somehow, and I really can not figure out how, the online pharmacy mixed up the dosing instructions with the medication.  So that the new bottles instructed me to take my Hydroxychoroquine (Plaquinil) 8 tablets once per week on Wednesday when the actual dosage should have been once daily.  And my Methotrexate  label said  to take one tablet daily when it should have been 8 tablets once weekly on Wednesday.

Because these particular medications I have been taking for years I know that I should not follow the dosing instructions that are listed on the new prescription bottles. So I showed the bottles to my rheumatologist this morning at my scheduled appointment.  Because it was an online issue, I had tried to go to the site to report the problem when I realized it last night.  Unfortunately the link that the online pharmacy shows to click to report a problem does not work.  So I asked my rheumatologist what the next step should be.

She called the number listed on the prescription bottle and reported the problem.  By the time I arrived home from my appointment, there was a message from the online pharmacy asking my to please call.  

I called the number left on my machine.  The woman I spoke to apologized and told me that they had started investigating how this could have happened.  The ball got dropped on this particular issue, not once but twice. Apparently, the prescription is filled by a pharmacy technician and then it is checked by a pharmacist. The woman from the online pharmacy apologized profusely. She told me that they would be sending me a $25.00 gift card for my troubles and that I should expect a call from a supervisor.

I appreciate the apology.  I really do.  What concerns me is what could have happened if I had not been so familiar with these prescriptions and not known that the dosing instructions listed on the refills were very wrong. When I asked what the possible ramifications could have been if I had actually taken 8 plaquenil at once, I was told that it could have caused retinal damage that is irreversible.

From now on I plan on checking not only the pills inside the prescription bottle to make sure that they are correct and that the count is correct, but I will be checking the labels carefully to make sure that the dosing instructions are exactly as my doctor has prescribed.

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Monday, May 18th, 2009

Rheumatoid Arthritis: One Disease, Two Generations

When I was 9 or 10 years old my mother started complaining that her thumb on her right hand was bothering her.  She couldn’t remember hitting or injuring it in any way.  I clearly remember her telling a neighbor that it felt like she had bruised her thumb.  It wasn’t even something that she considered going to the doctor about.  It just seemed odd.  About 2 months later she woke up in the morning and could not get out of bed.  I remember how scared I felt as my mother cried out in pain while my father lifted her from the bed to carry her to the car and take her to the hospital.  I had never seen my father carry my mother before.  At that point my sisters and I knew that there was something seriously wrong.

My parents spent the better part of the day and night at the hospital and when they came home my father helped my mother to bed and told us that the doctors thought that my mother had rheumatoid arthritis.  I had no idea what that mean or how it would change our lives.  I just wanted my mom to stop hurting and just be Mom again.  

I watched this disease change my mother.  In the 1970’s there was not a lot of treatment options for rheumatoid arthritis.  The doctors mostly gave my mother enormous amounts of aspirin to help with the symptoms.  She had these bizzare scaffolding like contraptions that she wore on her fingers that used rubber bands to keep the fingers in place at night.  The objective was  to keep the joints from contracting and to try to hold off the deforming effect of the disease.  It did not work. Continue reading Rheumatoid Arthritis: One Disease, Two Generations

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Thursday, April 2nd, 2009

Poll Results: Are You Happy With Your Current Rheumatologist?

According to LivingRheum’s first non scientific poll 53% of those polled are happy with their current rheumatologist.  32% of readers that participated in the poll said that they were not happy with their current rheumatologist.  And 16% said that they had not made their minds up yet. 

 For me it is very disappointing to hear that almost 1/3 of all that participated in our poll are not happy with their current rheumatologist.  I am interested in learning why. Is it because their is a lack of qualified rheumatologist?  Is it because insurance companies limiting our choice of doctors?

 I spent several years with 2 different rheumatologist that I was not at all happy with before I found my current really fantastic rheumatologist. I am fortunate that I live in a part of the country that I affords me the opportunity to choose from a great deal of rheumatologist so that I could find one that I feel comfortable with.  In the state of Rhode Island their are 24 rheumatologist listed in 1545 square miles (that is 1045 land miles and 500 water miles) that is one doctor for every 16 square  land miles.  Those are pretty good stats for those of us in the littlest state.

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  • robin: Jo-Ann, I also had this realization awhile back, ...
  • Pam: I'm glad you had this epiphany! I still get annoy...
  • Jo-Ann Colburn: I couldn't agree more with that panicky feeling. I...
  • Maria: The stillness you describe is like the moment I st...
  • Susy: Interesting research and the conclusion is a surpr...
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