Monday, February 28, 2011

Traditional Medications, Alternative Therapies and the Pressure in between.

As a result of this article flying around the 'net; these questions were asked:  Are rheum patients pressured not to take medical treatment? Have you ever read an article that sounds like it discourages medical treatment for rheumatologic conditions? Whether the alternative offered is Eastern medicine, non-prescription medicines, or dietary changes, or spiritual advice, what would you like to say to anyone who would tell patients to forgo medical treatment?  For the purpose of this exercise, I am going to focus on two areas- first message boards and second on blogs/articles.   I have been blessed in that even my most "medication resistant" family member is not only supportive of my own treatment but also takes the time to look into and understand what treatments I am undergoing and considering.  When you consider that they prefer not to even take an aspirin- that says a lot. 

 In the over five years since I have been diagnosed, I have heard countless "remedies" and "cures".  I have been told that if I only: quit smoking, lost weight, exercised more, worked less, slept more, ate better, eliminated this food, added that supplement- you name it, I have probably heard it- I would be just fine.   Sadly- more often than not- I have heard many of these things on message boards meant for patients with RA.   Now- I have been very vocal about the fact that I feel that "our"  message boards are being misused but I feel that this goes beyond that.    I see various supplements pushed and pushed (garlic, fish oil, and the old stand by Glucosamin and Chondroitin) and I see everything from eliminating nightshade veggies to Gluten Free/Dairy Free/Sugar Free diets claimed to be the end all and be all to "cure" RA.  The worst part, in my opinion, is that if you dare disagree, proponents feel it is okay to blatantly attack you for having a difference of opinion.   This does NOT help anyone.  This and some other things that I have enumerated here before are the reasons I eschew the message boards for the most part. 

Now on to the blogs/articles.  I am sure we have ALL seen either articles and posts such as the original one listed here before.  We have seen blogs and articles that essentially say that we are "weak" for turning to traditional medicine and that if we only lived holistically or followed a naturopathic way of life, or went to a chiropractor on an regular basis- our disease would disappear.  Some are written by patients, some are written by practitioners but they all serve the same purpose and that purpose is to make us doubt our treatment, doubt our doctors and more, doubt ourselves.  I could list many but to be honest- these make my blood boil and I refuse to give them space or acknowledgement on MY blog.  

To sum it up, I feel that these posts, these articles and these "discussions" are blatantly dangerous if we don't take action to protect ourselves from both the well intentioned and the "quack" information out there.  Consider this- if I had a child who had JA and actually listened to this "doctor" who authored the original article, I would be subjecting my child to a tremendous amount of needless pain and suffering.  Would that not be at best benign neglect and at worst child endangerment?  If I were to personally toss all of my medications and go off my infusions and just change the way I eat- would I not be setting my body up for a flare but also for rapid and permanent damage to my joints?  How would either of those things be acting responsibly?  So what can you do?  Here are my suggestions: 

1- RESEARCH for yourself.  Google is your friend.  I don't care WHO the poster is, I don't care how much education or success they have had- you must research for yourself and make your own decisions. 

2- NEVER, ever, undertake any drastic change in your treatment without partnering with your medical professional.   If, God forbid, you have an adverse reaction your doctor must know what you have been doing in order to treat your properly. 

3- If you are interested in a "treatment"- by all means, learn what you must and give it a shot.   I would never suggest dismissing anything that could potentially help out of hand, but remember that just because it works for me or works for you, it will not work for everyone. 

There is a terrific byline to an ad out there right now that says something to the effect of  "Your RA is not MY RA."  or "MY RA is not YOUR RA."  We are all different physiologically and since they cannot even figure out  WHY we get this disease, I have very few hopes that we will see a miracle cure anytime in the next few years.  What I try to keep in mind is that while we are all in this journey together, each of us really does have our own individual challenges with our disease.  That means that though I will happily share my successes and failures with different therapies if asked- I try to not "push" one treatment over another.  When I  need a firm example to use as a reminder, I just look to the "MTX Wars" as an example.  For some it's a miracle, for some a miracle until your body betrays you (yep, that's me), for some it does absolutely nothing and for some, pure poison.   It serves to keep me from shouting from the rooftops about my successes and it also helps me to keep not only my failures, but when someone else is pushing a particular therapy, in perspective.  All RA is not the same, it doesn't respond the same to treatments, it is not triggered by the same triggers.   Since that commercial began to air  I use that as a "thank you, I will look into it, but" reply to all of the "well meaning" advice that comes my way.  

Here's hoping you find the therapy that works for YOU! 

Saturday, February 26, 2011

Aaaaaannnnnddddd I am back

I have decided that I am allergic to snow.  Note that I have decided that- it's nothing truly medical but just something that I am fairly convinced of.  We drove back to New England which has been so hard hit this year with snow that I took photos parking lots where the snow had been piled so high that that the cars looked tiny next to them.  I took a photo of my husband at his brother's house next to the piled snow and it came almost to hubby's mid chest- and he's 6'4". I saw where my niece had been using the driveway as a sledding hill ending up on top of my mother-in-law's completely snow covered car.   I cannot imagine how we lived in that environment for so very many years.

We had a lovely visit.  The wedding was beautiful, it was unique and very much like our couple.  We got to see several of our friends (other than the wedding attendants) and all of our family.

When it was time to go back home, we looked at the different routes and we also looked at the weather.  It was supposed to snow heavily on the NY Thru-way and south of there, through both of the Pennsylvania routes, rain, rain and more rain.  We chose to go through PA and then- Mother Nature bit us in the butt.  We were near Altoona, PA when the snow began.  Evidently, while we were driving the temperature dropped 20 degrees and we were driving into a bear of a storm.  We saw several really bad accidents as we inched along and finally found a Comfort Inn to stop for the night.  All told- after walking to get "dinner" at Wendy's and settling in for the night, we woke up to a foot of snow.

By the time we got home on the 22nd (our 25th Wedding Anniversary!) I was starting to come down with a miserable cold and very, very sore from the car ride.  I relaxed all day Wednesday, tried to go back to work on Thursday and ended up back in bed on Friday.  A bunch of children's (yes- grown up antihistimines are the devil for me) Mucinex and I am starting to rebound.  Next time I decide to take a vacation to a snowy area during winter- someone kick me.

Today, I have a few errands to run but more, I have to call my folks and wish them a very, very happy 45th Wedding Anniversary!  When I think about our 25th it seems like a blink in time next to their 45th. They are even more in love than they were all those years ago and they are truly inspiring to us.  I can only hope that 20 years from now we will be that happy.


Monday, February 14, 2011

Sick Husband + Flaring Wife = One Cranky Weekend

This past weekend was a tough weekend.  As I mentioned the other day, Hubby has been sick.  He is STILL sick.  He finally gave up on the Nyquil and tried something different yesterday.  He's up and went to work this morning and that means that he is on the mend.

Last week was a long week for me.  I worked my tail feathers off getting ready for my annual inventory.  I was running around all week and on Saturday I was on my feet for a solid 10 hours.  I didn't even stop for lunch, I grabbed a slice of pizza and went on with my recounts.  I knew this was coming.  I knew that by Saturday night I would be plum worn out and I was right.  What I didn't expect was a full on fibro flare.

Fibromyalgia flares are very different from Rheumatoid Arthritis flares.  The best way that I can describe a Fibro flare is that with any and every touch, even the slightest touch, your muscles feels like you are being beaten with a baseball bat.  My worst area for my fibro is my back and hips.  From my neck to my knees it feels like one giant bruise but from my shoulders to my lower back and hips it is magnified.  Walking around aggravates it, laying down on my back is impossible and sitting for too long aggravates it.  Needless to say- it is pretty painful.

You add my flare to hubby's very sickness and you get two people who are snapping at one another on a regular basis.  Neither of us felt like doing anything.  Walking the dogs brought the biggest snarling match of the weekend.  Fortunately (and yes I do mean fortunately) that is not a task that cannot be left undone.  Why fortunately?  Because if I hadn't gone ahead and walked them myself I can see where I would have just wallowed in self pity.  Instead, I changed into my pajamas (I have no shame-lol) and took the babies out and then came home and went to bed.  I probably would have stayed up much later stewing about the fact that I am flaring and going on vacation in just a few days and worrying about making that trip.  Forcing myself to take them for their full walk got me in the mindset of "Suck it up and deal!" and now I will be able to do the same if my flare is still hanging on come Wednesday when I start the first leg of my journey and take the puppies to Mom and Dad's house.  I can't say that I started the walk with good grace- but by the time we got home I had blown off some of the steam and had turned my thinking around about dealing with the flare so now I can be thankful that it was necessary.

I don't know that I will have the time (or energy) to write again before or during our trip so if not, I hope you all have a wonderful next 10 or so days!

Friday, February 11, 2011

Of Sick Husbands, Grace and Gratitude

So the hubby is sick.  Like most men I know- when he is sick the world stops.  I don't know if this is his annual big winter cold or a mild flu but he is pretty miserable.  He has been sick for a couple of days now; sick enough that I moved into the guest room because with my compromised immune system it's just not safe to be around him, sick enough that he is very vocal about how miserable he is feeling.

This morning, I am struggling to practice grace and gratitude.  Gratitude is easier- I am very grateful that thus far I have not gotten whatever it is that he is sick from.  Grateful that I have place (other than my couch) that I can sleep and not share his germs.   Grateful that I can go to work today and he can have quiet to rest and recuperate.  Grateful that we have the weekend to just get ready for our trip and grateful that he didn't get sick next week when we are traveling.

Grace is a little harder.  I find it very, very difficult to have the sympathy I would have when we were much younger.  I find it difficult, when he complains about how his muscles hurt from being sick, to not say "Welcome to MY world." I find it difficult when I suggest that he try something that might help and he "pooh-pooh's" the suggestion to listen to him complain.  The struggle comes because he is a really good guy.  He has been as understanding as he can be about my illnesses.  He understands the chronic fatigue, he understands the limitations.  He treats me like I am normal.  That's a good thing most of the time.  I don't want to live in a constant pity party but sometimes, when I am flaring or when I have had a bad day or when I am just plain worn out- a little sympathy can go a long way.  So I try to give a little sympathy because I KNOW it can go a long way but if I go too far we will both know that it is false.

There was a time, before I developed RA and Fibro, when I would have been in my full "Dr. Mom" mode by now.  I would have made sure he was tucked in, made sure he was tucked into bed with his meds and ginger ale and hot soup (that he probably wouldn't eat) in the crockpot so he could have it if he wanted while I was gone.  Now, he is sitting in his recliner with a box of tissues and the Nyquil is near because he put it there.   I have to wonder if this change in me is a good thing or a bad thing.  I have to wonder if my even higher tolerance to pain and my accepting and living with my illness has hardened me and made me less tolerant to the complaints of others.  Something to think about this weekend.

In the meantime, I will keep saying the Serenity Prayer over and over and trying to remember that he is not used to being sick and therefore I should be a little more....I don't want to say caring because I DO care that he is not feeling well, but caring in terms of taking care of him.  I have to work this weekend for inventory so I won't be home to do for him but in the morning I can start some chicken soup before I leave and restock his Ginger Ale and cracker supply on my way home tonight.  I can call and see if he needs anything before I leave work today and call and check on him this afternoon.  I can try and remember that I can't treat him as I would want to be treated because we are totally different and if I catch myself being snappy or having ungracious thoughts I can stop myself and turn it around.  That sounds like a plan that I can put into action.  

Wednesday, February 9, 2011

Guardian Angels?

Do you believe in Guardian Angels?  Do you believe that someone is watching over you at all times?  I have been thinking about this a lot lately.  Partially because I have been doing a lot of spiritual searching of late and partially because I catch myself, when I am trying to deal with nerves or stress "talking to" a couple of my family members that have passed and asking them to help me or watch over me or whomever else I am worrying about. 

I think there are two types of Guardian Angels.  There are those on earth who watch out for you and guide you in the right direction.  The second are those spirits who you traditionally think of as Angels- watching you from above and nudging you along the way. 

The angels here on earth can be anyone in your life.  It can be a family member, your pastor, your mentor or a friend.  It may be someone you have never and will never even meet.  Heck, Oprah even created a whole philanthropic movement called "The Angel Network".  From the web site's About Us section "In a 1997 episode of “The Oprah Winfrey Show”, Oprah invited viewers to join her in using their lives to improve the lives of others. What began as a campaign to encourage viewers to collect spare change evolved into the charity known as Oprah’s Angel Network."  Sadly, with the end of her show, the Angel Network is also disbanding but I encourage you to read the accomplishments at the link above.  What she did in creating this network was offer all of her viewers an opportunity to be an Angel in some one's life.  You don't have to join a network or donate money to be an angel for someone else or have them be an angel for you.  Any time you reach out to someone in need, a glimpse of that angel is there.  Some of the biggest Angels in MY life have been people who have merely been there when I needed them.  I may not recognize them in the moment (especially when they share hard truths) but in retrospect they have made a huge impact. 

This next part is my opinion ONLY.  Obviously the whole blog is my opinion but since this deals with aspects of faith, I feel the need to put in this disclaimer.  It by no means reflects anyone else's opinions and/or teachings but comes from many years of my own quest to find my spiritual beliefs.  I don't often discuss my spiritual beliefs in public so this is somewhat uncomfortable for me.  If you do not want to participate in this portion, I completely understand and respectfully request that you just skip this part. 

As for the Angels above- well, since I firmly believe in ghosts and I firmly believe in an afterlife, I can't discount the probability of angels.  I am of the opinion that we come back over and over until we "get it right" and then we move on.  My opinion on ghosts is that they are of two varieties- there is the energy that is left behind when we are gone (residual ) that continues to linger, and there is the "intelligent" entity that has unfinished business and cannot move on until that business is resolved.  I feel that once we have completed our final journey we are then able to become the one who watches over those who need us- so we in essence become what we think of as Guardian Angels. 

If you are wondering what "proof" I can offer that we have those angels in our lives?  Consider this a moment;  have you ever heard that "little voice" in your head?  The one that is not your own voice, it's not a voice of someone that you know but just a little whisper that directs you one way or another.  I believe that voice is our Angel guiding us.  Another thing to consider is this:  Have you ever had a near miss?  The accident that *almost* happens or when it does you are far less injured than you *should* have been?  Or have someone in your life that is gravely ill and experiences an astounding recovery?  There is a saying that "someone was watching over him/her" for a reason. 

Of course, bad things do happen and often to good people.  Where those angels are in that moment, I just don't know.  That's part of the mystery that I am still working through in my own spiritual journey.  I have several theories, mostly involving intersecting journeys, but I don't think I have quite nailed it as of yet. 

So that's what I am thinking about at the moment.  Next week, on Valentine's Day, begins Random Acts of Kindness week.  It's an opportunity for each of us to be an angel.  No matter if it is for a friend, a family member or a total stranger, you can touch the life of another person with just a small gesture, and who doesn't want to be and angel here on earth? 

Sunday, February 6, 2011

Welcome to Superbowl Sunday

This is an odd Superbowl for me.  I am a big football fan but I find myself not really caring about the game.  No offense to Packers and Steelers fans- but I just don't have the heart for it.  Will I watch?  More than likely I will be popping back and forth between the Superbowl and Animal Planet's Puppy Bowl.  I am interested in the commercials- hoping they will be worthy of the airtime, can't wait for The Black Eyed Peas half time show, and I am waiting for Glee's post-game Thriller extravaganza.

One thing I never- EVER- thought I would be doing on Superbowl Sunday is going shopping.  I am the rare female who hates shopping for clothes.  Now- I do have a thing for shoes- but I hate the whole process of shopping for clothes.  I hate looking for them, I hate trying them on, I hate not feeling confident about my buying choices.  I need a What not to Wear intervention.  Stacy and Clinton could teach me a thing or 12 and $5000.00 would go a long way toward a new wardrobe.  It's just that there are so many other things that I could spend my money on productively.  But- we are going to a wedding that is important to us- so shopping we must go.    

The goal is to go get what we need, stop at the grocery store to get food to cook for dinner and then settle in for the game(s).  I hope you have a lovely Sunday planned and if you are a Pack or Steelers fan that you enjoy the game!  

Thursday, February 3, 2011

Decisions, Decisions- Traveling with a Chronic Illness

We (the hubbs and I) have a trip back to New England that is coming up fast.  Because it is more cost effective, we are driving.  Now- I have to say- we love road trips and travel very well together.  That is not true for everyone.  You may love your mate dearly but when it comes to a road trip, come back ready to kill one another.  I have seen it first hand and it's not pretty.  Fortunately- we dodged that bullet because we are both pretty easy drivers and passengers when it comes to road trips.  The funny thing is- we even agree on things as simple as must have snacks (Paremsan Goldfish!) and how often to stop (every two hours) and who will drive when.  That said- would it have cost less to fly and rent a car, we would have gone that route; it just happens that we will be driving back during Massachusetts "Spring Break" week for the public schools so the airfares home were ridiculous. 

Our decision now is which vehicle to take.  We don't have to worry about the pups- they are staying with their grandparents for the week, so that is not an issue.  We had intended to take my Soul.  We renewed the Sirius subscription, I am having an oil change tomorrow, she's big enough that honey, who is 6'4" has plenty of leg room,  she only has 7500 miles on her and gets better gas mileage so it seemed like a no-brainer.  Then this horrific winter storm hit.  My Soul has Front Wheel Drive and traction control- but his X-Terra is a four-wheel drive.  Four Wheel Drive would be far better for us- less worry of getting stuck, less worry of traction issues and it's a nice truck.  On the down side, it has 175k miles and gets about 6-10 less mpg than my Soul.  That is significant when you are driving over a thousand miles each way and gas is over $3.00 a gallon- just over a hundred dollars significant.  When I think about driving through New York State in a snowstorm though- it's far easier to see doing that in the X-Terra.  At the moment we are waiting to see what happens weather wise but if we decide that the weather will warrent his truck over mine- we then have to get an oil change for him and prep his vehicle for the trip which is already done on mine.   In about 5 days we can start watching the "10 day forecast" for that area and see what the weather will be during our visit and then the talks will begin. 

That decision aside, there are things we have to do to prepare to travel to account for my Rheumatoid Arthritis and Fibro issues.  We have done this trip before and last time we drove straight through- to say we learned some lessons is an understatement so I will share some of them with you here:

  1. You MUST stop and stretch.  We always stop every couple of hours but we have learned to stop for a longer period of time so that I can really stretch and move my joints and muscles. 
  2. It is very advisable to break up the trip.  Last time we drove the whole 17+ hours straight. Both ways.  I couldn't get out of bed for several days when we got back.   This time we will most likely drive 9 or so hours and then get a hotel for the evening and continue the rest of the trip rested and refreshed.  We know what chain we will be looking for and I have mapped out their locations along the way.  After dinner we will see where we are and I will contact the closest hotel to where we feel we will stop and go from there.  When it comes time to come home- we will do the same thing. 
  3. Take your pill bottles.  I feel like I will be taking an extra suitcase because I get 3mos worth of the pills at a time- but really?  It's worth the aggravation rather than us having an issue should we get stopped for any reason and me having a half ton of pain meds and muscle relaxers and no proof they are mine.  While a note from your Rheumy is possibly sufficient but the original pill bottles are undeniable proof.
  4. Travel doesn't have to throw your dietary habits out the window.  Though we will be eating most of our meals in restaurants so our choices will be better- we will be packing two small coolers (one for his soda and my water and one for food) and there will be food for both of us in there.  He will have his deli meat and sandwich bread, potato chips and whatnot and I will have prepared salad in a ziploc bag (so it doesn't take too much room) packages of tuna, jif-to-go, cut fruit and veggies and all the things I need to be able to eat healthfully while we are in the car.  Not only does it help me stick to my plan, but it's far less expensive than rest stop food.  When we get to our final destination, I will hit up a grocery store and get foods for our hotel room for breakfast and snacks.  I will also tuck a paring knife in out cooler so I can prep my fruit and veggies for the ride home. 
  5. Check out the amenities for your hotel before you go.  The hotel we are staying in at our destination is a basic chain hotel (great rate because of the wedding we are attending) but they have an indoor pool and jacuzzi as well as a fitness room.  Knowing this (and despite me loathing bathing suits in public) I will bring my suit along and plan on spending some time in the jacuzzi to work out the road kinks and most definitely my workout clothes and use the treadmill. 
  6. Make sure you schedule some down time.  It's often true what they say about needing a vacation from your vacation.  When you are traveling with a chronic illness it is imperative that you make time to rest.  If you just go-go-go trying to fit everything in and not rest you can cause a major setback for yourself.  In my case, the last time I caused a flare that really was not necessary.  This time I will rest when we get to the hotel, we will then go for our first visit and then most likely dinner and then back to do the jacuzzi and rest.  I will not push myself.  I am taking time for a little pampering- I have a hair appointment with my dear friend and long-time stylist.  A few people know we are coming and if we don't see everyone- it will be okay.  We will go to visit the family, the rest we will say "we will be at such and such place on Saturday, hope you can join us."  We are not pressuring ourselves to go here and there and everywhere.  We know that the wedding will be a long evening so I will be sure to work out that morning while hubby sleeps in and  nap a couple of hours before we have to go. 
  7. Most importantly- have fun.  Don't stress yourself out- go with the flow.  I used to be all about the details and while I have lists and lists for my lists- I know that in the end, it will work out so I am not allowing any of this to stress me. 
I hope that you all have wonderful vacations coming up this year and that you can use these tips to make your next vacation smooth sailing. 

Tuesday, February 1, 2011

Old Man Winter

I am so very, very grateful that he has "missed" us this time.  My friends and family, from California to Massachusetts and everywhere in between are in the midst of a horrific winter storm.  St. Louis, Chicago, Boston are looking at snow and ice in about the 18"-24" range.  If we had been in its path, this area would have been crippled.  Instead, we are looking at heavy rain fall, possibly flood-worthy measurements, but not at the "warning stage" as of yet.

There's another reason that I am grateful for this weather "event" missing us.  Winter weather is not very kind to my joints and muscles.  If you are not an RA'er, think of it this way:  you know how, when you go out to clean the snow and ice off of your car and you have forgotten your gloves your hands turn bright red and get all stiff and sore?  Well, gloves or no, when I go outside in the winter weather- it's instantaneous for me.  Hands, wrists, elbows, shoulders, knees, ankles and feet.  I basically become a popsicle.  Going in and out of the cold, my joints and muscles do this cycle several times a day and don't ever fully "recover".  It's most evident when I am out walking the pups at night.  Auggie's leash is a little more awkward than Harley's and has slipped out of my hand countless times because my hands don't fully close around it.  Fortunately, he won't wander far and will slow down until I can get it back in my hands.  Picking up after them is a challenge too but both are necessary so I have learned to tuck the leashes under my arm and use two hands if needed to  do the "poop scoop".  As long as there is no other animal around- that works well.  If there are other critters in the area, we have to wait until it's gone and they have settled before I do my thing.  It's a challenge- but one I have worked out.

Tomorrow is Groundhog Day.  I am positive that we will have the 6 more weeks of winter but it gives me hope to know that Spring is on its way in.  I am just crossing my fingers (not literally-ha!) that this big storm that is making its way across the country is the last big one of the year.  I do NOT want to be driving in this kind of mess when we drive to New England in a few weeks.  Until then, I will just be grateful that we are where we are because I know that it would be much worse if we were still living there.