Wednesday, August 31, 2011

Reflections on a hurricane...

                                                                                           UPI:Rob Hodson

Saturday, August 27th:

As I sit here with no electricity, rain swirling around our home and winds whipping the trees to and fro, I know we will be just fine.  There is a peace to all of this.  After three days of preparations for hurricane Irene, she stormed into town right on schedule.  I had forgotten the furry of a hurricane but I have not forgotten my ability to make it through tough times.

Maybe the past thirteen years with ra has made me stronger.  Maybe the constant adjusting to not knowing what one will wake up to in the morning has prepared me well for mother nature's fury.  It is all uncertain anymore and adding hurricane Irene to the mix may be a bit more of a challenge but one I know I have been preparing for thirteen years.

I don't miss the electricity (well not yet anyway) as it gives me the chance to hear nature in a tantrum.  I have opened my bedroom window to not only let in a cool breeze but to also bring in the sounds of the tail end of Irene.  She whooshes through the world like she owns the place (kinda reminds me of ra), stopping everyone in their tracks until she is done.  She has thrown branches and debris everywhere but no major damage that I can spy from my safe harbor.  It is true I am more confident now that she is leaving town but I pray she is merciful on folks up north.  

Northerners tend to want things ready and able and they don't fair well with ladies like Irene. I know, this is how I was before ra.  I wanted everything in working order including my own body.  Oh well, fate had something different in mind for me. 

I have not only survived my ra and Irene as well but I am thriving now.  I am stronger, more confident that I can handle the toughest situations and come out with a smile on my face.  And even if fear may creep in to take a peek every once in awhile, I have my tool kit ready.  A tool kit filled with lots of handy dandy things to help me with not just Irene but my ra.

Yes, I have made it through yet another hurricane (this is my second so far) and I know that I will also make it through the years ahead with my ra.  I am stronger, more adaptable and more confident in my ability to continue on.

Farewell Irene. Please be kind and go gently on your way.

Sunday, August 21, 2011

The ABC's of RA Pain Management: Let The Games Begin!

(Picture Credit AFB)

Recently RA Warrior had some wonderful blogs featured on her Rheum Blog Carnival: Pain Relief in Rheumatology.  I read through them with vigor and came away amazed at the variety of bloggers and their vast array of pain experiences. Sadly though I also realized that little if anything has changed in regards to pain management and ra.  As you all know by now, I have had ra for 13 years and after reading these wonderful blog posts I now fully realize that we as patients need to understand the game of ra pain management.

And here's why.  My daughter is a twenty year old college student.  Recently she came home with a book entitled: NICE GIRLS DON'T GET THE CORNER OFFICE - 101 Unconscious Mistakes Women Make That Sabotage Their Careers.  For some unidentifiable reason (at first) my blood pressure went up immediately upon reading the book's title. Actually I was furious. I am 54 and have my BS in Business Management so throughout my career I have engaged in classes, seminars and the like on Women in Management. What surprised and fiercely disappointed me is that nothing has really changed. Not a single thing in this arena has changed in the past 34 years. The book has some interesting points and I am not here to review or critique the book but rather to reflect on why in the past 34 years little has changed in the area of how women are viewed in corporate America is similar to why nothing has changed in the area of ra pain management.

It didn't take me long to make the leap.  If we are still viewed in corporate America as having to make the changes to play the game well (obviously still primarily a boys game) then it wasn't much of a grasp for me to realize that we need to learn to play the game of ra pain management. And yes it is a game!  

We just haven't been taught the rules of this game and we have not been given the tools or strategies to navigate through the ra pain management field.  So first, let me lay out what I perceive as the game of ra pain management. And for simplicities sake, I am focusing only on narcotic pain medications here as almost all rheumatologists are willing to prescribe anti-inflammatories, pregnisone and ultram.

First you must acknowledge that this is a game and a game with very specific rules. And that is why we need to recognize it as such…there are rules out there impacting this ra pain management game and ones that are quite clearly written and some that are more camouflaged.  But, we need to know them all in the hopes of getting the best ra pain management we possible can obtain.

The game works something like this:

Rule #1:
Depending on your state (yes your state, as each state has rules mandating the dispensing of narcotic pain medications), you will need to know your individual state laws and rules that may hamper your doctor in the prescribing of said pain medications.  You will want to know this information for two reasons: 1) if your doctor tells you they don't prescribe narcotic pain medication, you can then ask if it is because of the laws of your state or is this a personal belief. 2) Depending on your rheumatologist answer you will want to either stay with him/her (in my opinion if they answer it is because of the law) or maybe leave them (in the case it is a personal decision on their part). If you are not in the US, you will need to understand your specific country's laws that govern narcotic pain prescriptions.

Rule #2:
You must come up with an ra pain management plan with your rheumatologist BEFORE you are in severe pain or a severe flare.  This should be part of your overall ra treatment plan. But PLEASE make sure you specifically discuss this early on in your treatment and BEFORE you are in a bad flare. There are many reasons you want to do this: 1) when we are in pain we may come off as being emotional or desperate (I fully understand why we are this way) but unfortunately emotional does not play well with many doctors 2) if you discuss the steps your doctor will take under this ra pain management plan you will know ahead of time what to expect, how to contact the doctor including after hours and on weekends, when you should receive an answer and what narcotic pain medications your doctor will be prescribing and for how long. 3) You may just be able to stay employed because you won't be missing so much time from work due to ra pain*.

Rule #3:
As great as some of the newer DMRADS are for ra, they are by no means a cure all for the pain of ra.  I am not a researcher (wish I was) nor a doctor to understand why some of these medications do help with the pain for some patients but don't dent it for others at all.  Nor can I explain why we as ra patients often have no swelling but still horrible pain levels. And even more frustrating is why so many doctors don't recognize the above two rules I have just mentioned (hint, hint doctors - start taking notes please).  You must understand the sub rules of Rule #3 and understand it well if you are one of these patients that receive little or no pain management from DMRADS, pregnisone, anti-inflammatory use or Ultram.  And even if you are one of the lucky ones that do receive moderate pain relief through a combination of the aforementioned medications, believe me, you will one day experience a flare that may require stronger pain medications. And given the implications of rule #2, you need to have your ra pain management program worked out in detail for your own sanity.

Rule #4:
Chronic pain kills!  It kills not just our livelihood, spirit, family well being, financial well being but it also can bring about a dark depression directly associated in my humble opinion to the lack of ra pain management. I know of two people that recently took their lives due to the severe pain of poorly treated chronic pain and one blogger I am still waiting to post in the hopes that she too didn't take her own life from the pain of her disease(s). So that we don't become a dog chasing our own tail, realize that if you are starting off with chronic pain from the onset of your ra diagnoses, you may carry this with you for the rest of your life. Now I did say MAY. I do not want to paint a hopeless picture here. In fact this is exactly what motivated me and  worked up my blood pressure and thus the creation of this post. I want you all armed with the rules so you know how to get what it is you need when you need it….ra pain relief! I do not want one more person that I know to ever have to get to that point in their life. And I firmly believe that because doctors do not treat ra pain aggressively enough, patients are left to linger in often excruciating pain which then makes them emotional which then makes the doctors to say they are depressed or over reacting to their pain. This continual hopelessness from lack of pain treatment leads to desperation which leads to…well…this has got to stop. Doctors need to treat pain with not just respect but with the proper medication treatment to curtail the pain or at the very least make it manageable.

Rule #5:
Come armed with all you know. So, you agree that you need to come up with a pain management plan with your doctor BEFORE you need it. You go in with pen in hand, binder ready  only to find your doctor spewing off the following: meditation, acupuncture, use of cold/hot, massage, yoga, exercise, PT, OT, TENS unit etc. etc.  If you are not already familiar with some of these "pain management" techniques then you need to study up and go in prepared. And please study up on the difference between addiction and dependance regarding narcotic pain medications. Beat your doctor to the punchline. Let him/her know you have carefully done your research, you are not just an educated patient but one that is empowered with your knowledge. Be ready to discuss with your doctor your willingness to try these other steps/techniques but under no circumstances should you let your doctor off the hook for narcotic pain medications as an option and this very important discussion about an overall pain management game plan. This is why you need to have this discussion with your doctor early on and BEFORE you need it. I am not saying that some of these other techniques do not help manage pain to some extent but in my personal experience they should be integrated on a daily basis for chronic low level pain.  The big guns should be pulled out for the bad flare or patients with long standing ra that have not gained remission from the current arsenal of medications and/or other pain management techniques out there.

Rule #6:
Passing the ball. Yes, this is often done. Pass the ball to another specialist. In this case you will hear your rheumatologist refer to a "pain management specialist". NOW HEAR THIS fellow raers.  A lot of pain management specialist do not and WILL NOT treat patients with ra. What! I hear you exclaim. From personal experience I can attest to this catch 22 hell. My ra doctor did not want to prescribe me narcotic pain medications  even though I was on every conceivable DMRAD, pregnisone, and anti-inflammatory known to man and referred me to a pain management specialist. I wound up going to one (took me several weeks to get in) only to be told he didn't treat patients with ra. According to them, it is the responsibility of the rheumatologist to deal with the ra pain. I called a total of 7 other pain management specialists only to be told the same thing. They will not treat patients with ra. Round and round we go! I would call a few pain management specialists ahead of time in your area and inquire if they treat patients with ra. If they do, then great! This can be an option for you if your doctor can't or won't write narcotic pain medication prescriptions.  And for those of you who are the unfortunate ones and live in an area where pain management specialists will not treat ra, you can tell your rheumatologists this from the get go during your pain management plan discussion. Oh, won't he/she be surprised that you have done some homework. But I will tell you, you will be glad you did. Look how much time and pain you will have saved yourself by doing all of this ahead of the needed time….a terrible flare or horrible pain level.

Rule #7:
It's not in your head! RA pain is not a figment of our imagination and don't you ever let any doctor tell you it is.  Your pain levels are real and they can be treated with the right doctor willing to take the task on. If your rheumatologist even begins to go down this road, I would immediately seek out another ra doctor. Just be sure you get a copy of all your medical records ahead of time and read his/her notes carefully to make sure he/she did not taint your medical records with personal views written in the margins. I can not tell you how many patients have been denied SSDI or pain management treatment due to comments in margins. Know your records and know them well! It may take awhile to find that wonderful rheumatologist but there are many of them out there. It is just the journey to find one that may take some time.  Start the search early and continue on until you find the right match for you which includes a pain management game plan that you both agree on.

Rule #8:
The rule of camouflage. Often in this game, there are many things that will impede the doctor/patient relationship. I call these impediments, camouflage. We know they are there but we can't pinpoint what or why they happen. One study about The Effect of The Doctors Sex on The Doctor/Patient Relationship points one camouflage out quite clearly…

"Four propositions are put forward in this article.  Firstly, that women doctors and medical students are different from their male counterparts in certain respects. These differences seem to reflect differences in male and female socialization. Secondly,that the qualities which women doctors tend to have, and which women in general tend to have, correspond with the qualities patients desire in a good doctor. Thirdly, that female patients are more likely than male patients to prefer women doctors, and in effect recognize the link between the first and second propositions. Male patients, although they seek similar characteristics in their doctor, are less likely to associate these characteristics with a woman. Fourthly, the outcome of doctor-patient exchanges is significantly different in a number of respects according to whether the doctor is a man or a woman. Communication is easier,more time is given, drugs are less frequently dispensed and women patients are treated more seriously if the doctor is a woman."

Another camouflage is our societal view of narcotics in general. How often we have heard the confusion over addiction vs. dependence for someone with chronic pain and yet how often have we heard our very own doctors mention that we will become addicted to narcotic pain medications and this is why they will not write a prescription. It is sad that many doctors have yet to understand or even bother to research the difference.

And add all this to the confusion of what comes first, chronic pain or depression. I could write a book on that one!

My point is that you need to be aware that often their are underlying or subtle (camouflaged) issues going on between a doctor/patient that we can not put our finger on but we know are there and impeding us from getting what we need. In this case pain management that works.

Rule #9:
This is a lifetime game. RA is not curable at this time. We will always have ra and we will always be under the care of a doctor for this chronic condition for the rest of our lives. Treat it as a lifetime game. Get to know the rules of this game, understand that you are in this for the long haul and that as part of this long journey you want as much pain free time as you can get. Don't be willing to give up everything you do, love, or want to ra and be willing to fight to keep these things. Yes, it is true that we may have to modify things at times (heck in my case all the time) but this does not mean you should have to give up basic things like dressing yourself, combing your hair, keeping employed, etc. etc.  Often these things can only be obtained with correct pain management. Plan to revisit your pain management game plan often and know your options ahead of time. I want what is best and more importantly humane for us. We should not have to suffer like I have seen so many suffer over the past 13 years. We need to hold our doctors and the medical community accountable for proper treatment. I am not asking you to be an activist (although that would be wonderful if you so choose) but do partake in developing your pain management game plan. Know the rules that govern it and learn to get to home base quickly rather then being struck out and having to play inning after inning.
                                                                            (Photo: Think Stock)

Things You Should Be Discussing With Your RA Doctor or My Home Run Game Plan For Pain Management:
Corticosteriods (steroids) including both pill and injections
And of course Narcotic Pain Medication(s)
Physical Therapy
Occupational Therapy
Use of cold/hot
TENS unit 
Possible Dietary Changes including: anti-inflammatory diet, gluten free, dairy free, sugar free, etc. etc. 
Possible Addition of vitamins/herbs

* Further reading on how to stay employed with ra on abcsofra.blogspot

Heigh-Ho, Heigh-Ho, It's off to work we go...Part 1

Tuesday, August 16, 2011

At The Crossroads

I have been on my ra journey now for thirteen years. I have traveled it long and fought hard over this often bumpy and lonely road.  When I was first thrust onto this path I followed the traditional traveled course, one filled with dmrads, anti-inflammatory medications, and pain killers.  I journeyed that way for over 8 years until I was diagnosed with thyroid cancer. Of course Murphy's law would be my dancing partner during this medical tango and I was diagnosed not with just one but two types of thyroid cancers.  I stopped the tnfs immediately as one of their possible side effects listed is cancer.  

Did I want to play at the roulette table? No that game wasn't for me. I have lost not one but two relatives to cancers and I never favored the Las Vegas life style…gambling just isn't in my genes.

So for five years I have slowly meandered on my chosen ra course, taking time to reevaluate my decisions through research, conversation, and empowerment.  I am once again questioning which way to go.  Should I throw the dice and take the gamble of dmrads once again to quite this fire breathing monster that lurks in the waters and never gives me peace anymore?

Or should I continue on in blind faith with the nontraditional path I have chosen to primarily treat my ra? Choices, choices, choices. It is all about choices.  But how am I to know what is right or wrong? In fact, how is any person be it a professional doctor or a layman to really know.  We are all playing this game of roulette…spin the wheel, wait for your number and hope that you win.  Hope against hope that you aren't one of the side effects listed in the black box warnings.

I am once again standing at the crossroads in my mind, in my heart, and in my faith about all types of ra treatments.

What am I to do?

Further Reading on ABC's of RA: It's a Question of Trust

Wednesday, August 10, 2011

It's A Pressing Issue!

Going to the doctors has never been one of my favorite things to do in life. In fact, let me say honestly that I put it at the top of my dislike list. I am beginning to dread it.

First, one has the typical list of must do quickie tests for the patient. Weight, height, review current list of medications and then comes what I am writing this post about…the dreaded blood pressure cuff.

For me this is about as pleasant as putting one's hand in a burning flame. Yes, it is that painful for me.  I have a lot of ra in both my elbows and between the darned cuff puffing itself up around my painful joints, to the nurse who smiles as I grimace in pain…well…no wonder I often have high blood pressure.  I mean, let's think about this. Typically one is suppose to be in a relaxed state, legs uncrossed (did you know that crossing your legs during this test can raise your blood pressure reading?),  and seated quietly while the test is administered.  OK, I can do all that.

But as the nurse begins that whooshing sound, the beads of instant sweat begin to form on my brow.  My upper teeth grab onto the only thing available to ward off a scream, my lower lip.  I bite hard. The nurse smiles as she aimlessly talks about the weather, current events around town, or anything to fill these fearful moments. Can I scream now? I am seeing these little dots floating out there in space. I wish I could pass out because then this intense pain would stop. But oh NO! They have to keep that cuff tight as a vice until they get the reading. The beads of sweat are now rolling down my brow.

I did try and find an alternate solution to this problem.  You know my motto by now..the KISS principle. The only other solution might be to take my blood pressure on my ankle. They do this for woman who have had mastectomies. Well, that might be an amiable solution except my ankles also have profuse swelling and a lot of pain.

And oh, did I mention? They always and I mean ALWAYS have to redo it because the first time my blood pressure reads high. Duh!

Maybe the next time I go in I will request for them to put it around my neck. Whoosh…a bird in the hand is worth two in the bush! No pain in my joints as I will blissfully pass out.  Hopefully, since I will be in a peaceful slumber, I will no longer have a high blood pressure reading.

Thursday, August 4, 2011

My RA Beach Vacation...

Sometimes I think the best laid plans do go astray, no matter how much we plan. But having RA has made me one tough cookie and I am use to having to adapt to make things work.

We had this mini-vacation planned for some time now. I had booked the best deal I could find months ago in the busy beach town of Myrtle Beach, NC. I was looking forward to our mini getaway and just knew that a few days away would do wonders for my soul. It did too!

When I originally looked into finding a hotel I had my regular checklist of must haves. For this particular vacation I wanted a family resort styled hotel as I was taking my daughter and her friend along for the ride and I wanted one right on the beach. I also wanted a full kitchen as it would not just save us a few dollars by eating out only for dinner but it would also allow my daughter to keep on track with her dietary needs which include gluten, soy, and dairy free.

The resort styled hotel I choose was a nice fit except for one thing...there was not one person to assist with our luggage. I was actually quite shocked by this fact as they advertise themselves as a resort. What resort has no porters to help with luggage? And of course I never thought to ask this question by phone. Who in their right mind would have thought to inquire about this accommodation.  My poor daughter and her friend took on the role of porters and had to struggle to get our luggage from the lower level parking area. Yes, they had handicapped parking on the ground level but it was all taken. Ummmm....did I mention that I am disabled and would loved to have been able to have had a parking spot on the first level. The lower level required one to walk a long ramp to get to the elevators while pushing the luggage cart.

But barring the luggage fiasco, the resort was well equipped and I had a lovely swim in their inside pool. Did I mention that they had 6 swimming features at this resort? I now know I must find a pool to continue swimming in where I live. It was bliss. I felt so free in the water and I forgot this lovely feeling of weightlessness with ra. Too bad the astronaut program is now grounded. I can just envision myself floating out their in the space shuttle, orbiting earth, free of my gravitational ra pain. Oh the bliss of it all. But, swimming is close to this feeling and I highly recommend it if you have access to a pool.

I did manage a short beach walk. OK, it was a very short beach walk but I did get down close to the water's edge.  And I was so proud of myself too! See my proof?

And last, I truly enjoyed the Broadway location at Myrtle Beach. It is also handicap accessible and has some very lovely restaurants as well as affordable shops to meander through. I meet some great new friends there.  Even if their final destination was my stomach.

Yes, a mini-vacation is a sure energy recharger for those of us with chronic illness. I highly recommend it if you can swing it financially and if you can't...well do your own staycation and bring in a few of the resort styled amenities for your enjoyment.