Wednesday, August 31, 2011

In The Beginning...

It was almost 20 years ago when I became increasingly ill.  I felt terrible all the time and I had exhaustion beyond anything I could have imagined.  I was falling asleep at my desk at work I was so tired.  I felt achy and miserable.  My feet hurt, my hands hurt and I had a hard time getting out of bed in the morning.  I went to my doctor and he checked me out and told me "You are getting older now, you have to expect these things."  I was 27 years old!  Can you imagine?  I immediately changed doctors and reported that doctor to the AMA.  The AMA didn't do anything but I did what I could.  I decided at that moment that I have to be in charge of my medical case.  I had to drive that medical bus.  I had to be the person in charge because doctor's are only people and they make mistakes.  I will not suffer anymore because some doctor makes some mistake.

My new doctor ran a bunch of tests and found out that I had zero B12 in my system.  Zero.  Zilch.  Nada.  No wonder I was falling asleep.  A deficiency of Vitamin B12 leads to tingling or numbness in fingers and toes, deformed gait and difficulty walking, rapid and frequent mood changes and depression and temporary memory loss, dementia, disorientation and neurological damage.  Pernicious anemia is a decrease in red blood cells that occurs when the body cannot properly absorb vitamin B12 from the gastrointestinal tract.

That was the first diagnosis.  Next I was sent to get the tingling in my feet tested.  From there I was sent to a rheumatologist.  She is the best rheumotologist for me.  She listens and asks about everything.  I was diagnosed with RA but with a little lupus, fibromyalgia and chronic fatigue thrown in.  My primary doctor calls it Adrienne's Disease.

Last year I was having weird blood tests every month.  One month I would be deficient in protein, the next month deficient in calcium and the third month deficient in vitamin D.  My primary kept saying I was not eating well.  I kept saying I was eating well.  We went back and forth until I began getting quite ill with stomach issues.  Then everything was kicked up to high gear with all sorts of major tests being done. CTs, MRIs, CAT scans, xrays, colonoscopy, endoscopy.  After a month and half of tests, it was concluded that I have Crohn's disease.  Another autoimmune disease!  Yippee!

A few months ago, as you may have read I found out I have sjogren's sydrome.  That is the drying of the eyes and mouth.

If you add these diseases to the one's I already have (Raynaud's syndrome, restless legs syndrome, interstitial cystitis disease) I think my body is just not happy with itself.  A huge war is going on inside!

Thank goodness I found out I was sick when I did.  Imagine if I had not and I had gone on with no B12 and RA that was undiagnosed.  I would be in a much worse way.  I am so lucky that I took my own medical situation into my hands. 

Sunday, August 28, 2011

The Devasting Storm That Wasn't

 Stormy Sea by Michael Beer
Well this week I spent the weekend like everyone else, watching the TV news. I was glued to the TV since my family lives on the East Coast.  Since I was just visiting The Jersey Shore, I watched frantically for any news to see if there was any flooding.  Half of my family was evacuated from their homes and had wait it out at various places away from the coast.  My brother and his boyfriend were visiting me but spent most of the time trying to figure out how to get the boyfriend back to Boston before the next scheduled flight on Thursday!  Needless to say, the whole thing was a bit of a non-event.  I am glad everyone is safe and sound and my family's homes are basically unharmed.  I know it could have been worse but it seems like the media took the whole reporting a bit too far.  The news channels were reporting about nothing at times and it became ridiculous.

I kept thinking about how stressful it is during emergency situations.  I have spent time getting our emergency kit together.  It is almost complete.  We are in a much better situation than many of my neighbors.  The one thing that I have a problem with is getting extra medication for my "go bag".  The emergency instructions state we are supposed to have extra medication in our emergency supplies.  I don't know about you but I am always forced to get my medication about two days before it runs out because my insurance will not cover more than 30 days at a time.  If I want to have extra medication, I would have to pay for it out of pocket.  Not really in the plans right now.

My advice to everyone (whether you live in a disaster area or not) is to have an emergency kit ready at all times.  You never know when an emergency will occur.  A fire, flood, hurricane, tornado, or earthquake can happen with little or no notice.  It is important to be ready and not be running out at the last minute looking for batteries, water and ice (if you have medication like Enbrel that needs to stay cold).

Be prepared!

Wednesday, August 24, 2011

Myths About Arthritis

There is this great article in Arthritis Today magazine (August 2011) called Arthritis Food Myths.  I don't know how many times someone has told me I should not eat mushrooms or tomatoes or I should take glucosamine tablets or that I should not eat dairy.  When I was first diagnosed it was very confusing, did I have RA because I was eating the wrong foods?  I have such a limited diet already, what if I had to cut out more food?
photo by: hotblack

Some of the funnier myths are:
  • eating a dozen gin-soaked raisins a day relieves pain
  • drinking cider vinegar eases pain
  • a low-acid diet lessens arthritis pain
  • the more red wine the better!
  • fasting relieves RA pain
  • citrus fruits cause inflammation
When I was first diagnosed the internet had all these stories of people who had stories of being cured when they went on a raw-food diet or stopped eating diary products.  I thought I would not have to be on medication forever, maybe I could just change my diet.  Well, I learned pretty quick that those "cures" were not going to work for me.  No gin-soaked raisins were going to magically make me better.   I have a pretty aggressive form of RA and had to be put on biologic drugs as soon as they were released.  Which is good because I can't imagine living without eating mushrooms, tomatoes and an occasional piece of cheese!  What is life without 'shrooms and 'maters?!

Monday, August 22, 2011

Sad Days

It has been a sad few days.  My neighbor, Jim, passed away.  He has been ill and house-bound for a few years.  I have not seen him in about a year and half since he didn't always like visitors.  His roommate and BFF, Darrel has been taking care of him and his "life" during this whole time.  They have lived together for many years and known each other for decades.  I kept abreast of Jim's situation through phone calls and from running into Darrel on the street.  Our neighborhood is pretty close and if Jim went into the hospital, someone would always let us know.

This time Jim was admitted to the hospital when we were back East and after a nasty fall while in the hospital, he passed away.  He will be missed by anyone who met him.  He always had a smile and joke when you bumped into him.  Before he got ill, Jim knew all the latest information (read as gossip) about the neighborhood.  He was even called the Mayor of the Neighborhood.

I am going to miss my friend Jim.

Thursday, August 18, 2011

Keep Arthritis Funding Off The Chopping Block

Congress is heading into very difficult budget negotiations.  I know everyone wants funding for their disease.  Who can say funding for Alzhiemers is more important than funding for cancer?  I think it is all important.  Some facts to remember about Arthritis:
  • Arthritis costs our nation $128 billion annually.  An investment in arthritis research will pay dividends in the future.
  • Congress plans to cut $1.2 trillion in federal spending by November and needs to know that Americans value research funding.
  • Arthritis is the nation’s leading cause of disability
  • 50 million Americans—one in five adults—have arthritis.
  • Within 20 years, the Centers for Disease Control and Prevention estimate 67 million adults or 25% of the population will have arthritis. 
  • Arthritis limits the daily activities of 21 million Americans and accounts for $128 billion annually in economic costs.
  • Arthritis afflicts 300,000 children in the U.S.
  • If we don't stand up for arthritis research, who will?
If you have a moment, Sign the Petition and tell Congress not to cut funding for Arthritis Research!

Tuesday, August 16, 2011

Doctor, Doctor, Give Me The News

I saw the doctor today and she said I looked the best I have looked in a long time!  Yeah!  She was surprised I looked so well considering I just returned from a two week vacation.  Doctor visits following previous vacations have not turned out so well.  Usually when I return from vacations I am in bad health because I have not taken care of myself or have run myself ragged.

But not this time!  Why??  Because I stuck to the plan!  I ate right, got enough rest, didn't get too much sun exposure, didn't get too stressed out and didn't over do it.  The key to staying healthy for anyone not just people with RA.

Wednesday, August 10, 2011

Flying the Friendly Skies

We arrived home very late last night, or should I say early this morning?  Imagine, our flight was delayed!  When have you recently flown when your flight was not fully booked or delayed?  Now, as an environmentalist, I am happy the planes fly full.  Less fuel wasted.  Better for all of us in the long run.  Climate change and all that.  But as a consumer, I hate full planes and I really despise overbooked planes.

Our flight delay last night was due to Mother Nature.  Prior to leaving The Jersey Shore there were tornado warnings in Delaware and Pennsylvania and severe storm warnings in Pennsylvania, so we got on the road lickety split.  We thought we might be in for a rough drive and that was all we needed; running into a tornado on our way to the airport!  It ended up being a fairly calm drive with a small down pour.  We arrived 3 hours before our flight only to find out the flight had been delayed due to a huge storm that hit the airport: lightening and torrential rain.

We settled down to wait it out.  We had a leisurely dinner.  I watched a movie and took a nap.  Brenda read the newspaper and people watched.  The people watching was quite interesting with all hoopla going on; airline people and customers yelling at each other.  Our flight kept getting pushed back further and further.  Our 6:30 pm flight boarded at about 7:45 pm.  Then the captain told us we were 36th in line to take off.  WHAT?!  I can tell you that it takes about 1 1/2 hours to have 36 planes take off at Philadelphia airport.  Luckily we were able to use our electronic devices during this time so I watched another movie until I feel asleep.  We finally took off at 9:30 pm.  We were originally supposed to land at 9:40 pm Pacific time.  Instead we landed at 1:00 am Pacific time (which, if you are not able to do the math, is 4 am Eastern time.) 

One highlight in this whole excursion is that the person assigned to sit in our three seat section didn't show up and the crew was in such a hurry to take off they didn't assign anyone to standby.  We had the luxury of three seats for two people!  We both got to stretch out during the 7 hour plane trip and we tried to sleep.  Score!

Today was a bit rough; I am having a hard time keeping my eyes open and brain clear.  It may take a few days to recover from this ordeal. 

Sunday, August 7, 2011

What Is Up With All Those Bruises?

Vacation is almost over and the question I heard most of all was "How did you get those bruises?"  I think the thing I am most self conscience about since being diagnosed is the bruising.  I have always bruised easily but nothing like the giant and long lasting bruises I get since being on prednisone.  I bump into anything and get a bruise.  God forbid I should stumble and fall, it looks like I was in a major accident.  On a regular day I usually look like I have had some sort of trauma with all my bruises but here on vacation with all the physical activity, you can imagine I look almost like I have been in an accident!  In a bathing suit I just look like a  leopard with all the spots.

So far, I have the bruise from the graceful dismount from the boat (see below for 1/2 of the bruise), the bruise from getting dumped off the jet ski, the constant bruises from medication injections, and the various other bruising from banging into things, having to carry luggage up- and downstairs, on and off airplanes, in and out of cars, etc.  They are just all over me and in the weirdest places!  I have two small bruises on the inside of the top of my right arm.  Who gets bruises there?

My bruised elbow
Folks keep asking how I got the bruises; well I am lucky to remember the large bruises but the small ones, you have got to be kidding me.  Most times I don't remember even banging into things.

These bruises take forever to go away too.  I have tried Arnica gel and it works pretty well to speed up the process.  But I would have to be lathered in the stuff on a trip like this.

It is embarrassing to have all these bruises on my legs and arms.  Twice I have been in the emergency room for another reason medical reason and been asked if I have been a victim of abuse.  I have to point out on my chart that I am on Prednisone and that it makes me bruise easily.  This is why I don't wear dresses and skirts very often.  It is too embarrassing to have the bruises show.

Overall, the fun I had outweighed the embarrassment of the bruises. Except for my family, I will never see these people ever again, so what do I care what they think?!  Let them look at me funny.  I know my truth.  Where did I get those bruises?  They are from a medication that is making me feel better and making me be able to go out and have fun again!  That's where!

Saturday, August 6, 2011

Staying Healthy on Vacation!

So far, so good on this vacation!  I am sticking to the plan and so far doing pretty well.  I survived the family reunion with nary a hitch.  Okay, a few bruises due to a not so graceful fall getting out of the boat and then all my digital photos disappeared from my SIM card, but besides that the trip is going well.  I can't do anything about the bruises but I bought a new digital camera.  I don't want to lose my photos again.

It has been a relaxing couple of days.  Yesterday I skipped going to Wildwood in the evening in order to buy the camera and stick around and watch a movie.  Today I hung around, took a nap and then took a walk.

Did you read about the diabetic pregnant woman at the Denver airport who had her insulin confiscated by TSA?  To incredible to even believe.  I worry every time I fly that some overzealous TSA agent will have a problem with my medication or my syringes.  This time when I flew I was stopped and had my medication searched.  That was the first time that happened.  The TSA agents were very friendly about it but it is still unnerving.