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Monday, May 30, 2011

RA- beyond the joints - what else is effected?

     Even though we tend to totally focus on the joint issues associated with Rheumatoid Arthritis, we need to be mindful of the fact that RA has its impact on the entire body.  Why?  Well, remember RA is an autoimmune disease characterized by inflammation which seems to be the culprit in many health issues we face today from heart disease to cataracts.  
     Studies and reports from patients indicate that the severity and incidence of the different problems I will mention are often related to the severity of the RA, how long you have had the disease, and how well it is controlled by medications and other treatments.  So take heart because that is the really good news and I am always looking for and hanging onto the good news!
     So, what are some of the issues? Let's talk eyes first.  

Some people with rheumatoid arthritis may develop an inflammation of the eyes known as scleritis. Symptoms include pain, redness, blurred vision and light sensitivity. Treatment is usually eye drops, NSAIDs or a corticosteroid. 
In rare cases, scleritis causes pigment changes in the retina. RA can also cause uveitis, an inflammation of the area between the retina and the white of the eye, which, if not treated, could cause blindness. Corticosteroids may cause glaucoma and cataracts.  I just found out about a month ago that I have them in both eyes but so far just adjusting my prescription in my glasses is doing the job so surgery is hopefully a few years away!  As a rule, people with RA should get eye checkups at least once a year.
     Our skin is another body organ impacted by RA.  
About half of the people with RA develop rheumatoid nodules – lumps of tissue that form under the skin, often over bony areas exposed to pressure, such as fingers or elbows. Unless the nodule is located in a sensitive spot, such as where you hold a pen, treatment may not be necessary. Nodules sometimes disappear on their own; disease-modifying antirheumatic drugs (DMARDs), a category of drugs that inhibits the disease process, can cause them to vanish as well.  Mine tend to come and go and are not painful.  However, I do have some persistent issue at my wrists and had to have surgery there.  Skin is also susceptible to RA drugs. Corticosteroids, which mimic the naturally occurring hormone cortisol to control inflammation, can cause thinning of the skin and susceptibility to bruising.  I take a small dose now every day and I have definitely noticed easier bruising. Non-steroidal anti-inflammatory drugs (NSAIDs), which treat inflammation, and Methotrexate, a widely prescribed DMARD, can cause sun sensitivity but I really have not noticed it myself (maybe living in the northern climate accounts for that). People taking biologic response modifiers, or biologics, a sub-category of DMARDs designed to stop inflammation at the cellular level, may develop a rash at the injection site but I have NEVER had one and I have been either injecting or having infusions for 9 years now.  I do get some odd skin rashes which I attribute to the inflammatory nature of RA.  I have some ointments and that and time take care of it.  I did get shingles once and my Primary Care Physician definitely felt that my compromised immune system was, if not completely certainly partly, responsible.  We caught it early and I really did not suffer much with it.

     The mouth is an interesting topic.  Methotrexate can cause mouth sores or oral ulcers so most doctors recommend folic acid and that has worked for me 100%.  No one knows why, but people with RA tend to have a higher rate of gum disease, or gingivitis. Excellent oral hygiene is a must.  For treatment of the ulcers try a topical pain reliever or ask your doctor or dentist for a prescription mouthwash.
 One of the more scary organs impacted are the lungs. About a third of people with RA will develop some type of lung or pulmonary symptom. Pleurisy, an inflammation of the lung lining, can make it painful to take a deep breath but is treatable with anti-inflammatory drugs. Some people with RA develop scarring called pulmonary fibrosis, which leads to progressive shortness of breath. Rheumatoid nodules might form in the lungs, but are usually harmless. RA drugs may affect the lungs as well. Methotrexate can cause a complication known as methotrexate lung or methotrexate pneumonia, which generally goes away when the methotrexate is stopped. The condition goes away when treatment ceases; patients can usually resume the drug in a few weeks.  The risk of contracting tuberculosis (TB – a bacterial infection of the lungs), is elevated in people with RA and intensifies among those taking corticosteroids, DMARDs and biologics. Your doctor should test for TB before initiating treatment and periodically after.

     Our hearts health is also effected by RA.   Research
 shows that people with RA are about 2.5 percent more likely to develop cardiovascular disease than the general population. Researchers suspect it’s because the inflammation that characterizes RA spreads to blood vessels. RA can also cause pericarditis, inflammation of the heart lining, which may manifest as chest pain. In general, people with RA should address lifestyle factors associated with heart disease such as eating a healthy diet, exercising and not smoking.  It just motivates me to lead a healthier life and that is not a bad thing! 
     Liver and kidney issues can be avoided by close monitoring by your physcians.  Liver 
diseases may occur with long-term methotrexate use. Working with your rheumatologist to monitor your blood is key to preventing problems. 
Kidney problems are more likely related to side effects of RA drugs – such as cyclosporine or an NSAID – than to the disease itself. If you're taking one of these drugs or methotrexate, which concentrates in the kidneys, your doctor will monitor your kidney function to watch for problems.
     Our blood blood vessels can be impacted due primarily to the inflammation associated with RA.  Letting the inflammation go unchecked can cause anemia - a reduction
in red blood cells characterized by headache and fatigue. Inflammation might also lead to thrombosis, or elevated blood platelet levels, and blood clots. Both conditions improve as the inflammation is controlled; anemia can be further addressed with iron supplements. On the other hand, aggressively treating inflammation with corticosteroids may cause thrombocytopenia, an abnormally low number of blood platelets. This, too, is addressed by stopping the medication.  It
’s rare, but longstanding RA can also cause vasculitis, inflammation of small blood vessels that supply the skin. Such involvement may have serious consequences if not addressed, although aggressive treatment with methotrexate, corticosteroids and other drugs that control cell production usually resolves the problem. Vasculitis is often heralded by small red dots on the skin; more severe cases can cause ulcers on the legs, under fingernails or in nail beds.  

     Our nervous systems don't escape either. N
erve problems in the arms or legs, such as numbness, tingling or weakness, sometimes occur with RA. People with RA may develop carpal tunnel syndrome, a common nerve condition in which the nerve that runs from the forearm to the hand is compressed by inflamed tissue, resulting in tingling, numbness and decreased grip strength.  This was never a problem for me until about a year ago but now I use braces to alleviate the discomfort and it comes and goes, like most of the symptoms of RA. 

    Sjogren's Syndrome is a pesky problem that many of us suffer from who have RA.  We are at greater risk for Sj√∂gren’s syndrome, a condition in which the immune system attacks the body’s moisture-producing glands. The result: eyes and mouth that feel dry and gritty. Dry eyes can be relieved with “artificial tear” eye drops. In severe cases, a surgical procedure to plug the tear ducts may help but that did not work for me and frankly since it comes and goes I just use drops as needed.  If left untreated, the condition can result in eye infection and scarring of the conjunctiva – the membrane covering the white of the eye inside the eyelid. Prescription medications can stimulate saliva production in our mouth but I just did not want yet another med and since sucking on hard candy (sugarless recommended) works as well that is what I do. Good dental hygiene is a must, as bacteria tend to flourish in a dry mouth, leading to tooth decay and gum disease so make sure you see your dentist often if you have Sjogren's.
     There has been much discussion and reporting on the increased incidence of lymphoma (cancer) in RA patients, especially those taking the new biologics.  Although there is a slight increase in the rate of cancer among RA patients, lifestyles choices once again play a role as exercising, diet and making healthy lifestyle choices are a big factor.  As to the biologic piece, the latest studies do not support this and have shown that there is no significant difference in the incidence of cancer between those using the biologics and those who do not.
    WOW, if you look at this you may think that our lives are doomed but the fact is that the big take away message from all of this is that early and proper treatment, getting and staying educated and informed, a healthy lifestyle filled with exercise, a good diet, proper sleep, recreation, a support system of loved ones and medical personnel and trying to keep stress levels low will mitigate most of these!  So, start now and take control.  Your health depends on it and as does the successful management of your RA.
Take a walk, ride a bike, enjoy a movie today!

Saturday, May 28, 2011

A successful trip means planning ahead!

     So I have been away celebrating my son's graduation from Law School and it was absolutely wonderful for my husband and I to share the entire weekend with all three of our sons and family and friends and who flew into DC to be with us.
     These kind of life achievements often are bittersweet for me as they not only herald wonderful accomplishments and deep pride in our sons as they happen, but with them comes the realization that another milestone has come and gone and time is passing at a pace that I find far too fast!  
     I found myself feeling both amazing joy and at times, some sadness, that life can be so fleeting.  One of the difficulties of not living in the same community as our sons is that we don't hear about the day to day goings on as much as I would like and that leads to a sense of time flying by even quicker.  That said, the time with them is so precious and we do pack in lots of fun times!
     So with all of this traveling and the emotions of the trip and the walking and busyness and different beds, you can imagine that the RA was bound to react...I decided to head it off at the pass by prophylacticly taking a higher dose of medrol and then tapering when I got home and it worked!  The only problem I had was that I was stiff from the flight and drive home for about a day and then it was gone and I was even able to do Zumba this week!  
     I really made sure I had comfortable shoes this trip and for the formal evening I got a pair of slip in dressy sandals that although not high heels, worked fine and my feet were very happy!  Lesson learned....choose what makes sense for your joints when traveling from clothing and shoes to medication to the right pace of activities.  I did and this was the best I have felt on a trip in a long time!
Enjoy your next trip and have fun.

Wednesday, May 18, 2011

What happened to our first RA Support Group? Where was everyone?

     So a few nights ago, on a rainy, windy cold spring evening I launched what I hoped would be the first RA Support Group for the Rutland region.....notice I said "hoped would be the first".  I arrived at the meeting site early, set up 12 chairs in the round, had my attendance/sign in clip board, agendas, group guidelines, etc. all ready to go.  I glanced at the clock and I still had 10 minutes to spare till the 6:30 PM start time, so I sat back to relax and wait for all of my soon to be new RA friends to arrive.  Some time passed and I once again glanced at the clock which now read 6:40 PM and still no one!
     Finally, at 6:45, in walked the first and only participant for the "first RA Support Group meeting for the Rutland region".  She looked around and said "Is this the place for the RA Support Group?" a very reasonable question since no one else was in the room! I said "Yes it is, I'm Nan and you must be ____".  She said yes, smiled brightly and we embraced like old friends because we had spoken on the phone just a few days prior.  It was really just luck that she even knew about the meeting...she had a free local paper laying in her driveway a week ago and she picked it up, scanned it and saw the announcement.  She called me and I confirmed the time and place and she indicated she would be coming.  She has a distinctive Boston accent so when she arrived at the meeting and asked her opening question I knew immediately who it was.
     Well, for the next two hours, until 8:30 PM we laughed, shared and just generally enjoyed chatting until we both looked at the clock and said, "Holy cow, it is probably safe to assume no one else is coming and we should probably wrap this up".  At that point I did not want to commit to another date so I assured her if I decided to try again I would let her know.  We discussed some reasons why folks may not have come and went over things like the time, the weather, etc. to try to explain the lack of participation.  
     I have to admit, after all of the planning, marketing and effort I was discouraged and wondered what if anything I could or should have done differently.  I honestly do not know.  I wondered if it was because people feel that it is a private battle they are waging and discussing it publicly is more than they can handle.  Could it be that newly diagnosed folks are simply "not ready" to reach out and be in a group just yet?  I thought perhaps I was totally off base and maybe folks really all have their RA so completely managed that they don't need the support of a group.  I was simply at a loss and still am, frankly.  
     The next day, and even later that evening I had a few emails and Facebook posts from people who planned to attend but for one reason or another did not.  I felt a bit better but still was surprised at the poor (can you say disastrous) turnout.  After feeling sorry for myself for about an hour or two, I decided to try again!  One more time and then if it still does not gain momentum I will consider this a good lesson learned and move on.
     I also took the time to reflect on the wonderful new friendship that I now have as a result.  Despite the fact that it was only the two of us, we talked nonstop for two hours - turns out we are very close in age, amount of time with RA, she has 3 children as do I,etc.  Then, the commonalities we have when it comes to managing the disease began to emerge!  She too finds the unpredictability the most difficult aspect to deal with.  She also relies on laughter for additional relief when she feels discouraged.  She, like me, believes in the absolute necessity of exercise in coping with RA. Our treatment choices differ and it was so interesting hearing her perspective.  We both are strong advocates for our own treatments and she also does lots of research, staying on top of the latest developments.
     So, looking back it really was not a failure at all but rather a different result and one that has led to a new friendship that I hope will continue to grow and last for a long time to come.

Saturday, May 14, 2011

How do weather, diet and genetics effect RA if at all?

     First of all, I want to provide a bit of a disclaimer here as to any medical or otherwise "expert" advice or opinions you read on my blog.  I am not a medical expert about RA nor should you assume anything here is gospel for anyone but me.  I encourage you to question it by doing your own research.  My advice, opinions and reflections are mine alone, based on 15 years of personal experience with Rheumatoid Arthritis.  That said, lets go on to today's blog.
     Does weather effect RA?  Not for me unless you consider that really extreme temperatures are just uncomfortable generally and so when my body is trying to get cool in the summer or stay warm in the winter it does create some discomfort and can make the pain of RA worse.  RA is autoimmune and so is not subject to the same responses that effect osteoarthritis (OA), the more traditional "wear and tear" arthritis.   So when someone says that their knees are acting up so rain must be coming - likely they have OA not RA.
     Genetics seems to play a role according to the latest studies out there.  How?  Well, a number of studies have shown a genetic predisposition to acquiring RA and they actually have isolated 5 genes to date that are considered "susceptibility" genes.  The hope is that through not only research on RA but also autoimmune disorders in general a vaccine might be created to prevent RA in people predisposed to developing it.  For me when I look back on my family the only one who I know had any type of arthritis is my maternal grandmother and I am not sure what kind she had.  She did have to stop sewing when she was in her late fifties due to arthritis so perhaps she had RA. I don't know and my mother has passed as well so I have  no one to check with.  There is much research ongoing so we can hope that it will be helpful to future generations if not to those of us who currently have RA.
     Diet is a very interesting and controversial topic when it comes to its effect on RA.  I have seen all the ads and get lots of spam claiming to be able to "relieve RA with new diet and nutritional breakthroughs!" but I think it is largely untrue and even dangerous if it prompts folks to stop taking medications that are controlling the disease.  Some claims revolve around certain food groups, for instance night shade vegetables, and how they may influence flares.  I have tried to see if any of these work for me, more out of curiosity than anything else, and have found that they have ZERO impact on my RA.  
     That does not mean that good nutrition is not important in the management of RA because it is very important!  Healthy, wholesome foods and good eating habits, including proper weight management, are actually vital to successful disease management.  The more excess weight you carry the harder it is on your joints...period.  Taking off the weight is not easy, however and I do not make light of the constant struggle that so many RA patients, myself included, have to deal with constantly...particularly if you are on corticosteroids like prednisone, for inflammation.  I have also found that too much salt is harmful as you tend to retain even more fluid than normal and it is not good for your blood pressure.  Otherwise, eliminating entire food groups just has not been shown to make much of a difference.  Frankly, RA makes you feel a sense of loss to begin with so I am just not about to give up food I enjoy...I just try to indulge moderately and with an eye to weight management.
     So, go forth and read up on all of these topics and see what you think and then please post comments here!  I love to hear from others.  

Friday, May 13, 2011

Stress, good or bad can cause an RA flare

     Stress, good OR bad, has a significant effect on Rheumatoid Arthritis.  We all react to stress both physically and mentally.  We have all been there.  Things get hectic, the demands pile up,  sleep evades you because you are juggling far too many things and WHAM!  A flare is born!
     Stress, by its very nature, produces a reaction that you feel both mentally in the form of heightened emotions and reactions and physically.  Physical manifestations include headaches, heart palpitations, stomach upset and pain (can you say ulcers?), muscle weakness and pain in various body parts, etc.  
     For those of us with RA, it means flares - that is - a period of disease activity characterized by painful, inflamed joints and all the other charming symptoms of RA from poor sleep to fatigue to depression.
     I have a very demanding full-time job directing three elder service programs.  I supervise staff, develop and launch programs, write far too many grants, manage budgets, serve on local, state and national associations and boards, etc.  I love my work and am very passionate about what I do as lots of folks can tell you.  I tell you this because at first read, you would think that the stress associated with this (and believe me it is significant) would mean that I must continuously be in a flare, right?  Wrong.  
     There was a time, and there still are, when I definitely have flares that I can directly attribute to the stress of my work and life demands.  But, and this is a big one, I have learned by and large how to relieve the stress so that it does not get the best of me, mentally or physically.  Exercise is one way.  Talking it out with family and friends is another.  Taking a break from the demands, however short lived it may be is really helpful...go to a movie for instance.  Simply step back and even walk away when you have to.  I also love guided imagery.  I have CD's that I listen to that literally allow me to mentally relax and escape to another place, relieving the pressure of the moment.  That is sometimes all it takes to halt or at least lessen the flare that might very well progress to a much worse level. 
     In terms of my RA, it really does not matter if the stress is good or bad.  So even if it is around a fun time like a great trip or holiday preparations, stress is stress is stress and so handling it is even more important if you are going to truly enjoy your life and, say it with me, "manage RA".  
     Recognizing the truth about stress and how it impacts RA is half the battle.  The other half is determining how best to work with the stress in your life, what can you do to offset or reduce it and its effect on you and the resulting flare that may come with it despite your best efforts.  There is no way to eliminate it from your life unless you decide to go in seclusion somewhere (there are times when this seems like a viable choice to this day) so the best thing to do is manage it by finding out why you have it, can I reduce it, and how?
     Once again, I discovered that developing strategies and tools to deal with RA, in this case stress, are the ultimate way to have the quality of life I deserve, demand and can absolutely achieve.  
Laughing is a great stress reliever so watch a great comedy with a friend or loved one this weekend, cuddle up and have fun!

Wednesday, May 11, 2011

Did you say exercise???

     I cannot emphasize enough just how important exercise is to the successful management of Rheumatoid Arthritis.  I know this seems counter-intuitive since often our joints are inflamed, swollen and painful.  But it is so crucial to my overall well-being that without it I am miserable!  
     The key to exercising with RA is to find activities you can do with minimal risk of causing a flare and/or joint discomfort or damage.  That sounds easy but is anything but.  What I once did, tennis and running, just doesn't work now.  I hated giving them up and hope to resume tennis at some point.  For a time I really just could not find anything that replaced it.  I did the treadmill for a number of years but now my feet are just too involved so I cannot do that anymore.  Biking once bothered my knees but is great now.  Zumba, which is a dance exercise, is great!  I really get a good workout and the steps are diverse enough that it doesn't seem to agitate any one joint.  I do have to be careful though not to overdo it.
     The best, and I mean best form of exercise for me is swimming and I have learned to love it.  Didn't always.  But I find it is a great way to workout your body with no pressure on the joints.  I can even do strength training in the water when my wrists are not acting up.  It also provides me with a chance to relax and meditate, undisturbed.  Afterward a jacuzzi and hot shower and I am all set to take on the world.  
     Exercise not only keeps you fit physically and mentally and helps maintain your weight but it also is a key to overall hearth health.  RA patients have a higher risk of a number of other ailments including heart disease so doing aerobic exercise is vital to staying on the right path and countering these potential problems.
     For me and many others, sleep is difficult with RA so exercise serves to tire me out in a way that enhances my sleep.  I cannot tell you how much of an issue it is for me when I am unable to exercise!  I am grumpy, a lot less productive as my energy level is lower and my sleep is terrible!  
     A word of caution here.  I was not very good at monitoring my level of activity in terms of how intense to get and I have twice had foot stress fractures and a host of other minor injuries.  That said, I have no regrets because the benefits far outweigh the risks and I am much better now at stepping back and taking a break to rest sore joints.  That is very important to do!  As time goes on you will become better and better at knowing what you can do and how intensely to do it.
     If you find it tough to get motivated, find a friend or family member to exercise with or a group in your area that does what you want to do, like Zumba! 
     So despite the pain, etc. associated with RA there really is no excuse not to find some form of exercise that will work. It is so worth it!
Hugging and laughing are great ways to burn calories so go for it!

Tuesday, May 10, 2011

Re-inventing yourself beyond RA

     In the early stages of RA, I did indeed feel like the disease defined who I had become.  That is perfectly normal since you are still coping with the realities of having a disease that has changed your daily life and your future life in so many ways! 
   The fact is, I am different now.  But how?  Well, initially, I focused on what I no longer could play tennis, run, cook, and on and on.  It is overwhelming in the beginning and the pain and fatigue do not help with your coping abilities.
     As time went on, however, and I began to make choices about the treatment and management of RA, I decided that there were still things I could control and it was time to begin to look at what I could do- not just what I could not do.  That was a HUGE moment and not one easily arrived at.  Once there though I realized that I needed to make a deliberate decision to pursue alternatives to the activities that had been such an important part of my life pre-RA.  Truth is I am much more open to trying new things now and as a result I have become an avid swimmer and Zumba enthusiast.  
     In addition, I now have a much deeper appreciation of feeling good.  The simple things I took for granted before - I no longer do, like going for long pain free walks with my dog.  Enjoying the simple pleasures like watching a beautiful sunset with my husband on our back porch have new and deeper meaning for me now because I appreciate each and every day spent with loved ones.  
     For many women, myself included, adjusting what you can do around the house as a homemaker is really difficult.  I simply cannot do the cooking and cleaning I once did.  I really felt guilty about that for a long time but eventually I came to understand that if I overdid it, I would be a lot less productive and pleasant.  I have a full time job that, although wonderful, is very demanding and so that had to take precedence over housework.  A cleaning lady every two weeks solved that problem.  I can still do the light cleaning in between her visits but having a cleaning lady has been a lifesaver. 
     Holidays and traveling can also present a challenge because they are 1) stressful and 2) usually require additional physical demands over and above what you normally do.  So to handle them there a few things you can do.  Plan ahead!  I try to gradually get ready for holidays by shopping in advance and if decorations and additional cooking are part of the holiday, schedule what you really want to do and need to do, and when and try not to over do it!  Also, ask for help.  To be honest, I am terrible with this one.  I like to do it myself and learning to ask for help was really tough for me. I felt I was giving up some of my independence but...even if that is what??? If you don't allow people to lend a hand you will actually loose even more of your independence over time. If you do not take care of yourself, prevent flares and ease pain, joint disability will result which is far more life changing.  Get plenty of rest and take breaks.  This is so important when routine is different because of traveling or holidays.  The tendency to do too much is so inbred in most of us when it comes to traveling and holiday activities that it is really tough to make that change.  But believe me, you will enjoy the trips and the holidays so much more if you follow these tips.
     So over time (that is a key phrase you will see a lot!) I learned to adopt an attitude of what can I do differently to adapt to the new me? I looked for options, explored new interests, and worked to stay upbeat about change which can be very unsettling.  No one likes change when it is forced on them and RA is not a change anyone would welcome.  But how you learn to adjust to it is largely up to you.   I decided I was not willing to give up the "essential" me, that is, the person who loves to laugh, read, watch fireworks, swim, dance, go to movies and plays and concerts, cuddle with my husband, my children and my dog, and so on.  All those things that REALLY define me have not changed nor will they.  Once I came to that significant realization, the management of RA became another ongoing task to handle and so it has remained.  I will not allow who I am to be determined by a disease.  It is a choice I have made and one that has served me well for many years.
Cuddle with a loved one today and laugh!!!


Monday, May 9, 2011

Who makes up my "support team"?

     As I mentioned in an earlier post, it is really important, no crucial, that you eventually realize the need for what I call a "support team" that will consist of family, friends, medical personnel connected to your treatment and anyone else who may be of assistance to you and your management of RA.  Although you may not have a specific list somewhere with all of these folks listed on it, you should know that such a team, however formally or informally you label it, exists.  Why?  Because you cannot, I repeat, cannot, manage this disease successfully without them.  
     Family and friends help on so many levels - as emotional supporters, cheerleaders, shoulders to literally and figuratively lean on, advisors, objective and, when necessary, subjective sources of information when making choices and decisions.  Most of all they are there to give you love and companionship and to reassure you that YOU are still YOU despite the changes you have had to deal with.  And they are there to kick you in the butt when the pity party gets to be too much and you need someone to say OK, pick yourself up and keep going, you can and will be OK, different, but OK.
     Next are the medical personnel who are your professional lifeline to the management of RA.  Developing a consistent, respectful, and ongoing relationship with this group of folks is vital.  I can talk to my Rheumatoligist and Primary Care Physician about any aspect of RA with confidence and the knowledge that no question is foolish or wrong.  I highly recommend that you bring a list of  questions or concerns to your appointments.  My docs know that when I come in there will be a piece of paper in my hand with my "list" as I call it.  Now that does not happen every time, but most times.  Sometimes it just has a single word on it or a single issue like "lower my prednisone dose" or something like that.  And I keep this list in my purse so I can add to it when the thought occurs to me.  I would never remember what I needed to discuss if I waited till the day of my appointment to compile the "list".  It is ongoing and fluid.  Sometimes a question or concern is dealt with prior to the appointment so it gets removed...always a nice thing to happen!  
     A word about the staff at the physicians offices and hospitals you deal with.  They are as important a group as you will be working with.  Most of the time they are the first line of folks you deal with when making an appointment or calling with an immediate issue that needs addressed.  Treat them with the respect and admiration they deserve!  They are so busy, and often under-appreciated and overworked so be patient, kind and caring and it will serve you well.  
     Another "group" of sorts are the folks you come in contact with who are peripheral but nonetheless a part of the "team".  For instance the pharmacist, the medical supply techs., the  insurance claims folks, etc.  They are all part of the group you must work with in a positive and productive way to have success with the management of RA.  These folks though not a day to day part of the "team" are just as critical to the smooth journey you want to have.
     Finally, I simply had to accept that counting on and turning to others had to become a part of how I operate now.   Gone were the days when I could pretty much make all the decisions and handle all the responsibilities myself.  It meant re-defining who I was now and that was tough indeed and the subject of my next post.

Friday, May 6, 2011

Handling the unpredictability and fear

     So once I had carefully sifted through the options and chosen my treatment protocol in collaboration with my Rheumatoligist I naively though that I was all set and it would be smooth sailing from there on out.  NOT. Without a doubt one of the biggest challenges for me relative to the management of RA, is the unpredictability of the disease and the fear that comes with that.  
     A word that is often used in RA to describe the periods of disease activity is FLARE.  That is a word that has become a natural part of my vocabulary since the onset of RA.  A flare means that your RA is rearing its ugly head and has decided to make itself known once again through joint pain, swelling, inflammation, fatigue, etc.  But here is the kicker:  Despite medications which certainly curtail them I still get flares...they come unannounced and often with no warning. 
     So early on I literally lived in fear of having another flare each and every day as I woke up and went about my daily life.  As a type A, highly organized individual, I found this level of randomness terrifying.  I like to plan ahead, know what is coming, and have control over as much of my life as possible.  Along comes RA and POOF! Gone is my sense of control and security in knowing how my life would proceed and most of all the calm of a good nights sleep leading to a feeling of peace and renewal when I awoke.  
     I literally walked around in fear and a heightened sense of awareness of my movements, joint discomfort and overall sense of well being 24/7.  Well, clearly something had to give or I would not have been able to keep this up without suffering some sort of breakdown, both physically and mentally.  Now, I know and can share with people that having these feelings is very normal and in fact, part of the process of accepting and moving forward when faced with a chronic disease that has periods of activity or flares.  
     In fact, I think acknowledging these fears, sharing them with your doctor and support team (family, friends, etc.) is critical to managing RA.  I think I struggled the most with this because of my own personality and my initial unwillingness to re-define myself as someone with RA and all that entails. 
     Once I came to terms with it (not easy but time, tears and tantrums are OK) I knew I had overcome one of the biggest challenges of RA.  It was such a relief to finally accept that fear of flares and the changeable nature of RA is OK.  I just  needed to turn it around and use it to make me be more careful and deliberate in how I moved, exercised, and generally dealt with the daily living activities I took for granted before RA.  
     I now paid attention to all kinds of fine motor activities that I did without thinking before, like cooking and gardening.  I had to think about gross motor activities now like tennis and running and whether I could continue to do those things.  So deliberations began and through trial and lots of error and flares I figured it out!
Gently hugs and lots of laughing!

Wednesday, May 4, 2011

Reaching out to others is really difficult....but so worth it!

     Not to long ago, it was fairly easy to identify someone with Rheumatoid Arthritis.  There were distinctly misshapen hands and feet, often stooped posture and a cane or wheel chair were part of the whole "look".  Nowadays, thanks to the medications and treatments available, we are a less distinctive looking group! 
     Today's treatments can delay, postpone and maybe even prevent the disabling erosion of  joints and the accompanying appearance.  So that is the really wonderful news.  But, RA is still characterized by pain, pain and more pain as well as fatigue and depression which others may not "see" but is still there, silently invading and impacting our lives.  
     As time has gone on, there has been more and more evidence of the disease for feet are...lets just say...not pretty....I have some RA nodules scattered around and my wrists have some lumps and bumps.  One of the worst things about my new "look" that I really despise is the weight gain that came with the prednisone use and really has never entirely gone despite diets, exercise, etc.  Add to that menopause and it really gets ugly.  For me, that is one of the most difficult aspects of RA.  I never, never, never, had to worry about weight as I was always active and a type A person that never stops moving.  RA changed all of that and I still hate that I can only have a granola bar for breakfast, an apple and yogurt for lunch and MAYBE a salad for dinner or I gain weight never mind loose any!  I am not giving up but I have lost and regained 20 pounds probably 4 times in the last 5 years and I hate this roller coaster ride! 
     So, dealing with diet is another one of those issues with RA that kind of sits in the background but is there nonetheless and venting and talking to someone else who knows how you feel is really important on so many levels.  
     First, knowing that someone else can completely relate to what you are dealing with is priceless, emotionally and otherwise. 
     Second, the wealth of information sharing that can occur when you talk with someone else in the same "boat" is tremendously useful.  
     Third, knowing you are NOT ALONE in this battle and that there is someone you can call, vent to, get advice from, is such a comfort there are no words to adequately describe it.   Family and friends are crucial too and their support is worth another whole blog post but they cannot imagine what you are experiencing and so there are times when you get frustrated.  
     So if you can find an RA Support Group in your area give it a try and go!  I am really excited to be starting one here after 15 years without that!  I know that it has the potential to be a really important link in the management chain we all need to deal with RA long term.
Hug a loved one today and remember to smile and laugh!

Monday, May 2, 2011

Choosing treatments for RA - you are not alone!

     I clearly remember the first and most important item on my "treatment" list was STOP THE PAIN...the constant, unceasing, mind numbing pain!  All else was secondary and rightfully so. With the level of pain so high and unending it is nearly impossible to think clearly or set down a plan for long term management.  
     So how does THAT happen you ask.  Once again the doctor becomes the crucial cog in the wheel of disease management.  In fact, my doctor specifically said to me that we first needed to get the pain and inflammation under control so that I could sleep, function and think again.  He was so right.  
     That said, I was not happy to hear that rather high dose corticosteroids were the answer.  Knowing the nasty side effects I was not thrilled to say the least but my doctor assured me that I would not need to be on them at such a large dose long term but is was necessary to get the inflammation under control.  So, that was that and he was right which you will see me say here often.  Despite my early skepticism which I think is a healthy thing, I have come to understand that my doctor may well walk on water!  Anyway, I digress.  
     While the pesky prednisone was doing its job, my doctor and I discussed and deliberated on potential treatments.  At this point,with pain subsiding and a clearer head, I realized that I needed to sort out what I wanted to achieve with treatment and share that with my physician so we could work together to meet that goal.  
     So, as a very physically active (runner and tennis player, etc.) 41 year old prior to the onset of RA, the mother of three active boys ranging in age at the time from 8 to 16, a wife and also working full-time I needed to consider what was I hoping for?  Tough question to consider but part of it was very easy.  I told my doctor that I did not want to be in a wheel chair at 45 watching my sons go through life with a mother who could not participate in their lives in an active, mobile fashion.  
     I further understood that some of the medications came with risks that could in fact shorten my life span.  I knew that the life expectancy for RA patients was, on average, 10-15 years less already so for me it was a no-brainer.  
     At the time I started with RA, back in 1996, "aggressive" treatment of RA was still a relatively new concept.  Often, doctors waited till their were radiological joint changes and observable deterioration before offering the "big guns" of treatment.  However, around this time, studies were starting to show that "early aggressive treatment" could actually prevent and/or delay those changes for some time.  I, luckily had a forward thinking rheumatologist who suggested that we go after it right from the get go and so we did.  
     I started on DMARD's (Disease Modifying Anti Rheumatic Drugs) soon after because they are long acting and take awhile (4-6 weeks often) until you realize any significant change.  I also started on an NSAID (Non Steriodal Anti-Inflammatory Drug).  I stayed away from potent pain killers because I don't feel good on them but many people benefit from them as well.  I found that heavy duty capsacian creams, topical sprays, heat wraps, ice, braces, etc. all afforded me better outcomes anyway.  
     Now I realize that this list seems really long but believe me they are all part and parcel of the arsenal you need to avail yourself of.  I have NO regrets whatsoever about the medication choices I have made over the years.  Sometimes they were on target sometimes not so much but always done with considerable thought.   
     I really don't want to go into tons of detail about all the medication choices but I started with all oral meds. moved to injectables and now have infusions done at the ACU (outpatient Ambulatory Care Unit) of our local hospital.  
     One interesting thing to note is that for me and many folks with RA we seem to develop a tolerance for the medications (or I should say our overactive immune systems do) so I seem to have to "move on" to a new one about every 5 years.  Lots of folks do not but I do.  Fortunately for me their are enough new drugs "in the hopper" that so far I am still ahead of the game.  I hope it stays that way.  Finger crossed (when I can :))).  
     So the key is to 1) read and research treatment options 2) talk to your doctor and tell him what you need and want your life to be and 3) commit to your plan and include your family and friends in the decision process.  Then you will have no regrets about your choices and you will feel comfortable with what you decide.  That said, changing your mind is fine too!  I know many folks who started out very conservatively with their treatment choices and over time adjusted their decisions.  
     Whatever you decide just be sure that YOU are informed and comfortable with them so you can get on with your life!
Hug your family and friends and laugh a little or a lot!

Sunday, May 1, 2011

There is no cure but....

     Not long after the onset and firm diagnosis of Rheumatoid Arthritis I knew that there was no "cure" for RA.  And I did ask, and read, and try to find out why not.  But once I really understood the autoimmune nature of RA, I knew it was not going to happen.  So, when you finally digest that wonderful morsel you have to take stock and consider what else is there? Well, the fact is, you can live a very productive, satisfying, happy life despite having a progressive disease. Is it easy? Absolutely not. Is it worth the fight? Absolutely yes.  
     First step - accept that you are still fundamentally the same person, maybe even mentally stronger, than you were the day before you were told you have RA.  
     Secondly, although you cannot control the disease in its entirety, you can control the treatment you get, the exercise commitment you make, the diet you eat, the day to day things you do for enjoyment, the people you surround yourself with.
     Third, embrace the notion that RA can be treated.  Is it easy? Not at all and because of the nature of the disease, you will likely develop a tolerance to a medication after a time and have to start a new one but that is all part of managing the disease.  
     When you hear the word remission with regard to RA it usually does not mean that the disease is entirely gone or "cured" but rather that it is "clinically" quiet as I like to think of it.  It just is not shouting at you at the moment.  There is a clinical way that Rheumatologists declare that your RA is in remission at any given time that has to do with protocols that include how long you are stiff in the AM, how much pain, swelling, etc. exists, and so on but I am not going to get that technical here.  Suffice it to say that although I have been in mild remission many times it never seems to last and that is one of the biggest psychological challenges I face.       Each time I am doing really well, I almost believe that the RA is gone for good! Only to have a knee or a hip or a shoulder or all three become stiff and painful again.  I have learned to roll with that but without a doubt it still remains one of the biggest emotional hurdles I deal with.  
     Finally, I had to come to terms with taking medications, lots of medications and I really hated that.  Very tough.  Having never had anything more than an occasional flu, I was not a person that liked pills, let alone some of the other fun things I now have to take.  And there are a bevy of potential side effects, that frankly, are pretty scary to see in a list of potential side effects. But the alternative was a life of pain, disability, and a significantly shorter life span than what you already are going to have thanks to the RA so I sucked it up and said OK lets examine the options and go from there....and so I did. 
Hug someone you love today (or your pet) and laugh!!!