Decisions Category

Wednesday, June 16th, 2010

Rheumatoid Arthritis: 10 Tips for Travel

Now is the time of year when we pack things up and head out for a relaxing time away from the hustle and bustle of everyday life.  Before you head out here are a few tips to make the trip a little easier with rheumatoid arthritis.suitcase copy

  1. Make sure that you are well rested the night before traveling.
  2. Pack light. If necessary pack two lighter bags instead of one heavy bag. Don’t be afraid to ask for help with the carrying as well.
  3. Make sure to keep a water bottle and healthy snacks along with you.  The water will keep you hydrated and help keep the inflammation down.  The snacks will make sure that you are eating something that will not cause more inflammation.
  4. If traveling by car, take frequent stops to stretch.  Getting there a little bit later that expected is better than getting there sore.
  5. Remember to bring items that make you more comfortable( for example a special pillow or heating pad ) if you start to feel stiff and sore.
  6. If traveling by air, make the reservation early and don’t be afraid to make special requests like a seat up front with plenty of leg room.  Some people like direct flights but it may be better to have a layover that will allow you to get out and walk around a bit and stretch depending on the length of the flight.
  7. Talk to you doctor and get copies of your prescriptions to keep with you in case something happens to your medication when you are far from home.  Make sure you bring plenty of extra medication as well in case the trip lasts longer than originally planned.
  8. Wear comfortable loose clothing and comfortable shoes that are easy to take off and put on especially if you are traveling by air.
  9. Pace yourself.  Make sure there are plenty of periods of activity followed by periods of rest. You don’t want to overdue things and end up sidelined and miss some of the fun.
  10. Relax.  If you have forgotten to pack something there are always shops along the way to pick up whatever you may have missed.  Don’t fret about the hiccups along the way it’s part of the adventure.
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Thursday, May 20th, 2010

Rheumatoid Arthritis: How My Journey Began

When I started this blog the idea was to talk about what works for someone with rheumatoid arthritis.  I wrote a fair amount of posts about what foods and herbs help to fight inflammation and a few about the products that made my life with RA a little easier.  All in all I have been pleased with what I have shared and learned along the way about RA.  I hadn’t planned on all the amazing women and men that I have met through this blog that have given me strength and support. That was an unexpected blessing.  To all of you I am truly grateful.

It occurred to me that I really have not shared my story.  How I got to where in am now and the questions that I have been wrestling with lately.  I haven’t written much because I was hoping to have some answers to report instead of more questions.

So I want to take a step backward and start at the beginning, because  how I got here is important.   I didn’t know until recently how important.

About 6 months after Kevin, my youngest, was born my right ankle started to swell.  I hadn’t twisted it. I hadn’t fallen.  There seemed to be no explaination as to why it was swelling and why it hurt. So I went to an urgent care center where they took and X Ray and really could find nothing wrong with my ankle.  The doctor told me I must have sprained the ankle and gave me an air cast to wear for several weeks with some anti inflammatory drugs to take and sent me on my way.  I followed his instructions; I stayed off the ankle as much as possible, I iced it and I took the medication.  Eventually the ankle improved.

Almost as soon as my ankle improved, my left knee started to swell and hurt.  I thought maybe that I had been over compensating for the ankle and had somehow thrown my knee out of whack.  I iced the knee and took anti inflammatory medication and rested it as much as possible and it seemed to improve after about a month or so.

Shortly after my knee stopped bothering me my left wrist began to give me problems.  It really hurt and was swelling a lot.  I thought maybe that I had carpal tunnel because I spend a good amount of time everyday typing.  I went back to urgent care and they seemed to agree that this could be carpal tunnel and they gave me some wrist guards to wear.

I wore the wrist guards as instructed, took more anti inflammatory medication  and hoped for the best.

While my body was giving me all this trouble I was trying to raise a 10 year old, a 6 year old and a new baby boy.  I was exhausted all the time, but at 35 I figured that I was not as young as I used to be and now I had 3 boys needing my attention, a full time job and a business to run with my husband.  I certainly had a full plate and there were plenty of reasons for me to be tired all the time.

My husband works outside all the time and Lyme disease is something that I thought we were pretty familiar with.  It was Eric who thought that maybe it was Lyme disease that was causing this joint swelling.  It is typical for Lyme disease to kind of skip from one spot on the body to the next wreaking havoc. So a few days later I was back at the urgent care center asking for a Lyme test.  The doctor asked me if I remembered a tick bite and I really didn’t.  We live in a wooded area and there were many times that I have been bitten by ticks. We are really careful with deer tick and I am fairly sure that if I had seen a deer tick in me I would have been tested immediately.  The thing is some of these ticks are the size of a poppy seed.  It is within reason that I could have been bitten by a tick the size of a poppy seed in a location that I could not readily see and not know it.  It doesn’t hurt when they bite.  So it is completely possible that I could have been bit and not known it. That was really not what the doctor wanted to hear but I was able to convince him to give me a Lyme test.

Anyway to make a long story longer… after about a week the test came back positive for Lyme disease.  The doctor put me on zythromax for 5 days.

After two weeks I was still not feeling better.  My wrist was really bothering me and the swelling was so bad that I actually lost the ability to give a thumbs up.  There was so much swelling in my wrist that the ligament that moves the thumb was lifted from its initial location (because of the swelling) so that I could no longer give a thumbs up.

I went back to the doctor and he put me on another course of zythromax with some new anti inflammatory medication and sent me on my way.  He told me to give it another two weeks and I should be feeling better by then.

By the time two weeks had passed not only was my wrist swollen and painful but now my feet were swelling and my knee was back to giving me trouble again.

When the doctor took one look at me and knew that the current course of treatment was not working.  He said to me that this was beyond his level of expertise.  He said that he could send me to a infectious disease specialist or he could send me to a rheumatologist.  He felt that the rheumatologist was probably the best way to go because a rheumatologist could handle Lyme disease as well as any arthritis issues that I might have. He said that there was a new rheumatologist in Providence that he had heard good things about and he set up an initial appointment for me and wished me luck.

This is how my journey began.

Stay tuned to hear how we progressed to where I am today.

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Thursday, April 1st, 2010

Rheumatoid Arthritis: Survival Mode

These past several months have been an exercise in survival.  I am feeling better than I have in months, but I still have a way to go before I am at a place where rheumatoid arthritis is not in every other thought.  I have come to a place of survival.

All this down time has made me wonder how many of us are living with this disease and how many of us are in survival mode?

What is survival mode? For me it is getting through another day.  Surviving the day with rheumatoid arthritis.  Not exactly my idea of fun, but I am getting by. I wonder what survival means to everyone else with this disease.  While survival is better than giving up it is not where I want to be.

I am an optimist so I believe that this is just a temporary setback on my journey to living well with RA.  The idea that this survival mode is a permanent situation is not something that I am willing to entertain ever.  I have too much fight left in me to settle for half way.

I am grateful to be out of bed. Two months ago I was flat on my back all day long.  I am grateful that I am able to tackle small tasks on a daily basis so that I feel that I have accomplished something.  But this is not where I want to be.  I know that I have a ways to go and that this will probably take longer that I originally anticipated, but I am in this for the long haul and I am determined to find a new way to live with this disease without adding toxic chemicals to my body.

Here is what I have been doing so far and it seems to be having an impact on my overall wellness.

  • I am monitoring my diet and have eliminated dairy from my diet. I have found out the hard way that if I do ingest something that has dairy in it I will swell. I have been adding and subtracting different foods from my diet to see what is having an impact on inflammation. So far dairy has had the biggest impact.
  • I have been taking Flaxseed Oil (I can’t do fish oil supplements) and Vitamin D daily.
  • I have found that mediation helps me sleep better and makes mornings a little more manageable.
  • I am starting to be able to exercise ( I am using this term loosely because the rate of speed that I walk would hardly be called exercise, but it is movement and more than my body has seen in months.)
  • I am careful about what I eat and have lost over 25 pounds since January 1, 2010.
  • I spend time every day visualizing what it looks like to be free of stiffness and pain.

So far I am improving and I hope to be back to my old self soon.

In all honesty I have felt this bad on methotrexate.  I have had the same levels of pain, inflammation, and stiffness while on mtx so I have been pleasantly surprised at my progress and so far happy with my decision to look for an alternative solution to mtx.  It has made me wonder on more than one occasion how well the mtx was really working for me.

So for me, tomorrow is a new day with new hope for less pain and inflammation and life mode not just survival mode.

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Monday, February 15th, 2010

Rheumatoid Arthritis: Value in Stillness

I haven’t done a great many posts on tips lately. Mostly it is because I am doing all I can to get through each day.  I don’t have a lot of energy and what I do have is shared with my family.  I turned a corner the other day and I wanted to share what happened.

My knees have been causing me so much pain lately that a restful night’s sleep has evaded me.  If I don’t move in bed I start to cramp up and if I try to move I am in a lot of pain. So needless to say every 30 minutes to an hour I am awake.

I was lying in bed the other day and I was contemplating my current situation.  I was going over in my head what was going on in my life. I considered the amount of stress I have been under and how I have tried to deal with it. I was also evaluating my diet and trying to figure out what might be causing the increased inflammation and pain and what I was going to do about it.  There are so many variables that can effect how I feel it’s hard to pinpoint which part of my life and routine is causing all this pain. I needed to figure out if anything I was doing was having any impact at all.  While I was lying there pondering all these factors all I could think of was the only time I am not in pain is when I am still.

I was irritated that in being still the world was going on without me.  All I could think was I can’t live like that either, spending the entire day not moving to avoid pain is not really a solution to my problem. Then it hit me, maybe I was looking at this all wrong.  Maybe the universe was trying to tell me that I needed to be still.

I sat with that thought for a while.  Maybe I needed to stop fighting the stillness and just for a while embrace it.

So I did.

I welcomed the stillness in my body and my mind.  I stopped fighting and was simply still.

I don’t know that if in that moment of acceptance my body and mind connected, but I do know that when I woke the next morning I had slept the entire night without waking from pain.  Since then I have been experiencing significantly less pain and inflammation.  I am not pain free nor am I inflammation free but in the days since I feel like I am at a manageable level.

Before this realization I was really afraid that I was either going to have to go back on medication to control the pain and inflammation or I was going to have to live with things the way they were.  I wasn’t really sure that I would be able to do that.  All that pain, takes it’s toll on my spirit. All that pain takes it’s toll on my family.

I had gotten away from meditation for a while.  Life had gotten busy. Priorities changed.

I won’t let that happen again.  I need to take the extra time for the stillness.  In embracing the stillness, my body has thanked me.

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Tuesday, January 26th, 2010

My Rheumatoid Arthritis: One Day Up, One Day Down

Lately I have been one day up, one day down.  One day I am experiencing very little stiffness and pain and the next day I am feeling dreadful.

I have been taking a close look at my diet and how it is effecting how I feel.  I know that there are certain foods that without a doubt have a direct relationship to the amount of inflammation that I am experiencing.  Within an hour or so of eating chocolate I start to swell.  The same holds true for dairy products. Sugar seems to be an issue for me as well.  I don’t know if I need to avoid all sugar altogether or if  there is a certain threshold that once I  go over that level there is a problem.  I don’t know if it is just refined sugar or if  natural sugars will give me the same trouble.  I know that things that have a high sugar content cause me trouble. The good news is that since I have stopped taking the methotrexate, it is easier for me to tell which foods are causing the inflammation. It was as if the medication was masking the effects that food had on my inflammation. It has been a game of hit or miss on what my body will tolerate and what it won’t.  I imagine that this will take some time to find every food that is causing me trouble.

It is hard to plan my life right now because I really don’t know from day to day how I am going to feel.  I am keeping a food journal and each day I write down everything that goes into my body and how I am feeling physically.  It is helping to make it easier to pinpoint what food is effecting me so that I can avoid it in the future.  I have done a lot of reading on the subject and I am very hopeful that once I get a handle on the foods that trigger inflammation for me I will be able to manage the disease much better.

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Thursday, January 21st, 2010

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

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

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

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

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

  • Connecting with other people that know and understand what it’s like to have RA is important. Knowing that I am not alone in the day to day challenges that this disease brings has helped me in so many ways.  There is comfort in knowing that there are people out there that completely understand what I am going through.  I am very grateful to all the new friends that I have found here and for their kindness and support.
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Monday, January 18th, 2010

Expanded Tylenol Recall Includes Motrin, Benedryl and More

Friday January 15, 2010, Johnson & Johnson issued a massive recall of several of their over the counter drugs because of consumer complaints of a mold like smell that was associated with nausea, vomitting, stomach pain and diarrhea.  The recall includes some batches of Regular and Extra Strength Tylenol, Eight-Hour Tylenol Arthritis, Tylenol PM, Motrin, Motrin IB, Children’s Motrin, Benedryl, Rolaids, Simply Sleep and St. Joseph’s Aspirin. This is the second such recall in less than a month because of the sickening smell. The exact number of bottles recalled is not known, however the products were sold in the Americas, the United Arab Emirates and Fiji.  The products are in both caplet and geltab form.

According to the press release from US Food and Drug Administration and McNeil Consumer Healthcare:

“Based on this investigation, McNeil Consumer Healthcare has determined that the reported uncharacteristic smell is caused by the presence of trace amounts of a chemical called 2,4,6-tribromoanisole (TBA). This can result from the breakdown of a chemical that is sometimes applied to wood that is used to build wood pallets that transport and store product packaging materials. The health effects of this chemical have not been well studied but no serious events have been documented in the medical literature. ”

Consumers who purchased product from the lots included in this recall should stop using the product and contact McNeil Consumer Healthcare for instructions on a refund or replacement. For these instructions or information regarding how to return or dispose of the product, consumers should log on to the internet at www.mcneilproductrecall.com or call 1-888-222-6036 (Monday-Friday 8 a.m. to 10 p.m. Eastern Time, and Saturday-Sunday 9 a.m. to 5 p.m. Eastern Time). Consumers who have medical concerns or questions should contact their healthcare provider. Any adverse reactions may also be reported to the FDA’s MedWatch Program by fax at 1-800-FDA-0178, by mail at MedWatch, FDA, 5600 Fishers Lane, Rockville, MD 20852-9787, or on the MedWatch website at www.fda.gov/medwatch.

For a complete listing of all the TYLENOL lots included in the recall click HERE.

For the complete listing of all the MOTRIN lots included int the recall click HERE.

For the complete listing of all the BENEDRYL lots included in the recall click HERE.

For the complete  listing of all the ROLAIDS lots included in the recall click HERE.

For the  complete  listing of alL the SIMPLY SLEEP lots included in this recall click HERE.

For the complete listing of all the ST. JOSEPH’S ASPIRIN lots included in this recall click HERE.

After researching for this post I checked my own medicine cabinet to find two of the recalled items.  One of which I have given to my children.  I would recommend that everyone check their own homes  for any of these products just to be safe.

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