IF I HAD KNOWN HOW MUCH FUN GRANDCHILDREN WERE...

I WOULD HAVE HAD THEM FIRST!

Except it doesn't really work this way.  It was a cute T shirt I saw the other day in Cambridge.

The last 24 hours have been the most incredible of my life.  The opportunity to share in the birth of my first grandchild is a blessing I am so happy to have experienced.  My daughter Lora had to have a C section due to her placenta covering her cervix, which made for a strange introduction into the world for little Taylor. Addenbrooke's hospital in Cambridge England did an outstanding job of his birth   and due to my 'act like I belong' attitude I was able to be included in the whole process except the actual surgery.  Daddy Rob held Lora 's hand, and even had a peek over the screen.   he was able to hold Taylor immediately then put him on his mothers neck.  Taylor then leopard crawled up and latched onto his mummy's chin. Bless.  The surgeon had a little shock when Taylor immediately peed in her face when he was lifted out, the funny little guy.  Taylor weighed in at 7 lb 5 oz much to the medical teams shock.  Lora had a very tidy little bump that was all baby. One midwife asked if she was full term.  It just shows you that you don't have to get fat to have a healthy big baby and Lora's strict healthy diet paid off with a strong little man.

The experience on the ward was difficult though, and despite my desire to tell the nurses and midwife's off, I kept my mouth shut as I wasn't really supposed to be there the whole time.  If it hadn't been for Rob and I Lora wouldn't have had anything to eat or drink.  they seem to have forgotten that she was a section and told her that her meals were in the kitchen,,,she had a catheter in at the time and couldn't get up!  Luckily we had packed a cooler of healthy additive free food for her to eat and made use of the kitchen facilities.  After all the tests were done we then insisted she get released to go home and begin their lives as a family.

Right now Mummy, Daddy, baby Taylor and Indy are all cuddling in their bed, comfortable and together the way it should be,   Nanny is next door waiting for Lora to ring her bell for assistance if needed.  The hard part for me is to back off and let them figure it all out.  Lora had a few tears last night when the house was full of well meaning family and she just wanted she and rob and babe to be together.  It's a very narrow line to walk...doing enough, without taking over, or making Lora feel inadequate.  But we will all figure it out.  The feeling of love and contentment in this house right now is making it pulse with peace.

YOU KNOW IT'S SUPPOSED TO HURT A LITTLE, RIGHT?

Currently I am about 25lbs over MY ideal weight.  I am specific about the 'MY' because allot of doctors weight charts would tell me I am only a few pounds over.  I use my mirror to access my condition, and trust me, you don't get back fat unless you are over weight!  Equate my extra weight to carrying around the bag of cat food in the barn, all day, everyday.

 So I am trying to trim down for a number of reasons.

1) Health:  Carrying these extra pounds is not good for my heart or my joints, just for starters.
2) Looks:  I want to look good!
3) Mental Health:  If I look good, even if I hurt, I will feel better about myself.

There is only ONE WAY to lose weight.  STOP EATING SO MUCH AND EXERCISE!

I won't go into my diet in detail, but suffice it to say I have cut out allot of the foods that I really like, substituting stuff I don't really care for.  Yes, it hurts my feelings a little to choose fresh fish over that Big Mac, but it is necessary.  It always amazes me when people say they don't like vegetables as their excuse for not changing their high fat diet.  Really?  You know it is going to be a little unpleasant at times to seriously lose weight, right?

That brings me to the BIGGY!  EXERCISE!  Easier said than done when you have RA.  Keeping your body moving is an important part of managing any arthritis, including RA, but is important to be careful to not do further damage to the joints at the same time.  It is a real balancing act.  The question is HOW MUCH IS TOO MUCH?

Many experts recommend using pain as the cut off point.  Sounds reasonable, doesn't it?  Well if I never exercised a joint because it hurt, I may as well stay in bed, because they a pretty much always hurt.  Sometimes only a little, sometimes they seize up and moving them is agony. Worse than that, is that many times I can achieve quite allot of quality exercise time, only to have all my joints seize up the next day.

The conclusion I have come to is simple.  Many of the meds we take for RA and other auto-immune diseases are a compromise.  They endanger our health in many ways with these medications, including greater risk to our heart and other organs, as well as very unpleasant side effects.  But we take them to help stop some of the damage that the disease does to our bodies. 

Exercise has to come under the same heading.  COMPROMISE! I may do some damage to my joints by using them when they are hurting, but the benefits far outweigh the possible (and not proven) damage to the joints.  By exercising and losing weight the benefits to my general health, less stress on my joints and muscles, fitter heart capable of fighting off the damage from the meds, and over all feeling of well being far out weigh any of this possible damage.

So my line in the sand is AS LONG AS THE JOINT IS FUNCTIONING I am going to exercise it and build strength and fitness. 

The down side, is that getting fit is going to hurt a bit!  It is not easy or everyone would be an Olympic athlete.  Like eating stuff you don't like so much, there is no easy way to do it.  Your muscles that are not accustomed to it, will be stiff and sore and actually hurt like hell, until you build them up.  Your joints, without the firm muscles, will also hurt a bit, even if you don't have RA.  You have to work through this. It does get easier.

If I choose to use pain as an excuse not to exercise then I am accepting a life of limitations, and condoning myself to poor health and being fat for the rest of my life.  No thank you.  Besides, isn't that what they make pain meds for? LOL

(Please understand I am not suggesting you go out and run 5 miles the first day, but do some gentle physical exercise that your condition and level of fitness allows you to do...ie gentle stretching, yoga, swimming, or walking. In time you can build from there and run a marathon if you are able.)

THE VALUE OF EMPATHY

I don't want sympathy.

I don't need my family and friends to feel sorry for me. In fact it is the opposite.  I want them to still see me as the strong, both mentally and physically, person that I used to be.

Therefore when I don't feel strong, either mentally or physically, I have a tendency to hide.  I isolate myself with my animals who love me no matter what I feel like or if I cry alot or sleep all day.

Sometimes I attempt to break out of this isolation and share with a family member of friend who doesn't have a chronic illness. Usually we both leave the conversation disatisfied with the outcome.  Maybe they make comments about how their head or knee hurts, professing to understand how I feel.  How can they?  Their head or knee will feel better with a couple of Advil or rest.  This isn't their fault and I love them for trying. They want to help and give me sympathy but it makes me feel bad that I have burdened them with my problems and they feel like I'm always complaining.  Or perhaps they offer a solution that worked for them and can't understand how I can not immediately drop everything and rush out to buy the latest and greatest cure. 

What I need is empathy.  This is somethig that only another person dealing with the same type of problem can relate to.  I can turn to a few trusted friends or groups where I can unburden my feelings and get both practical advise and understanding.  Sometimes I forget the value of this empathy and stay hidden longer than I should.  The past few days are a good example of this.

Last weekend I took part in a horse show, something that I love with all my heart.  For the first time it was almost physically impossible to keep going.  Every stride was absolute agony and brought tears to my eyes.  Up until now I have been able to put the pain aside, both with adequate pain control and shear stubborness of will.  This weekend I was unable to do that and it scared the hell out of me.  The future loomed dark and terrible.  What if someday I couldn't do this anymore?  What if three days of labour and effort become impossible?  What if beyond that even an hour in the saddle became impossible?

I tried to express my fears to a few people close to me who either tried to show sympathy or worse gave flippant, 'of course you can' speeches.  One asked why I did it if it hurt so much.  One simple answer...I love it.  I realised that in my efforts to appear strong and able bodied I had hidden just how hard it was. 

Maybe I need to explain that the medicine I'm on IS IT.  Maybe types or dosages can be adjusted, but if 3 opiate pain killers didn't make it tolerable on Saturday morning, what the hell would?  I see one of the best rheumatologist in the country, a Fellow of the Arthritis Foundation, who does research and teaches around the country.  I am on the latest and greatest Biologic and a well proven DMARD.  I have a medical team who controls literally every step and breath I take, yet I'm still getting worse.  Unless someone discovers a cure, this is IT, at best.

This morning I was finally able to put this into words to a dear friend who also suffers from chronic pain.  She didn't whine and wail for me.  She listened and didn't interupt even when I choked up.  She didn't try to compete with her symptoms.  She made a few suggestions that made sense, but mostly she was just there.  Non Judgemental, not critical, not frustrated at me....JUST THERE. 

I can't expalin how this helped.  It didn't cure me, or get rid of the pain, or even offer any hope that all the worst wouldn't come to pass.  But it did.  The sun came out and I have spent the day looking forward, not too far, but just as far as the next show.

THE SALE BARN MARE

I’ll never forget the first time I saw her.  She was pacing in a tiny dirty stall at a horse sale in Ocala, Fl., hairy, dirty with a look of distrust and fear in her eyes.  She was desperate to find something to get hold of to crib on, but the smooth block walls stopped her.  Around her neck were scars from a cribbing strap and she had half her mane roached off.  The rest was standing on end from rubbing against a hay ring, and half her tail was missing.  She had white spots from healed scars on her sides, either from spurs or skin infections. She stood about 13 hands and was skinny and dull coated.

We had hauled to Florida to show at the Florida reining horse show with our old war horse Eurochex.  After giving my daughter Allie and myself the confidence to succeed in the reining pen it was becoming obvious that at 15 yrs old it was time to retire him for good.  The night before, during our warm up, he really felt sore in his hocks and after a long, late night discussion with Steve and Keeter we decided that this would be his last show.  But the question remained, what would I show this year?  Zero was not stopping and kept falling out of lead, and without extensive vet investigations that probably would not show anything, it was too frustrating to keep trying to show him.  I also had 3yr old Mitch, but after his fractured skull he was at least a year from being ready. For something to do while waiting  for my class later in the day we decided to visit the local sale barn.  On arriving and getting a catalogue we opened it to a random page…and there she was.  Hip number 37 was a 7 yr old ‘finished reiner’ by Conquistidor Whiz.  She had also been used for polo and all sorts of other things. 

Keeter was excited, although I was pretty doubtful that this funny, ugly little mare was worth hanging around waiting for.  Keeter asked to see her ridden, so a ‘cowboy’ with no reining knowledge proceeded to gallop her uncontrollably around the muddy makeup pen.  When he changed direction, she changed leads. When he yanked her around in a circle, she ‘spun’, albeit swapping ends.  But there was potential there, and even without shoes she tried to stop on the awful ground.  Long story short, the deal got done, and later that afternoon she arrived at the showground. 

On Tuesday morning I drove to Keeter’s house and was to be the guinea pig to see how she went.  We had no idea if she had been drugged for the sale or what she really knew.  After lounging her for a few minutes I decided that she probably wouldn’t buck me off straight away, swallowed my fear and mounted.  I rode her around the round pen for 20 minutes trying to get the feel of her.  By this time we had started calling her ‘37’ although we had found out her real name was Jezzibel.  Her head was in the air and she had no face.  If you tried to get hold of her she panicked and stuck her head further up and went faster.  If you put your leg on her side she scooted away from it in fear.  Quite quickly I established that you had to keep her legs moving or she would start to panic and I began bending her head toward her hip in circles at a walk.  Over time this has become our touch stone whenever panic sets in for her.  She had very little directional control and had obviously never done any trot work.  She would ‘turn around’ but would either stop or leap forward if you moved your leg.  We had our work cut out to make her into the ‘finished reiner’ she was advertised to be. 

Although she was the most unbroken, untrained horse I had ridden in a decade of lost confidence, and that sometimes it took 10 minutes of soul searching and walking her around to actually mount, I had fallen in love.  After a week of riding her everyday at Keeter’s and getting her help with the exercises that would teach 37 the things she needed to know, I brought my horse home.

It has taken four months of hard work, dedication and sometimes downright fear to produce the lovely mare she is becoming.  She is weird and quircky and loves me as much as I love her. Other than at dinner time, she rarely cribs, and is fit and shiny with health.  She does lovely level headed circles, guides with my legs, and can stop like nobody’s business!  At home her spins are developing well, although she is still a bit bombastic with them in the show pen, with a tendency to want to jump out.  She can change leads every three strides without ire, and most of the time doesn’t try to buck me off or run away with me anymore.

On Saturday evening she competed in the DRHA Green Reiner Classic and with a combined score of 134 placed 7^th  out of 40 reiners to win her first NRHA money.  Watching her video makes me cry with joy when I think of this ugly scared little mare of just a few months ago, and appreciate what she is becoming.

Most of all she likes COOKIES!  Whenever she does something well she gets a reward of a cookie.  I tap her on the check and ask if she wants one.  She will nod her head in response and gobble them up.

EXPECTATION AND ACCEPTANCE

Have you ever heard the saying "You get what you ask for", or even "Be careful what you ask for"? 

I truly believe that for allot of things in life this is very true, our health care included.  One of the recurring posts on some of the support sites I visit everyday is frustration and disappointment with our medical care.  We all try to support each other and encourage our fellow sufferers to empower themselves with information and strength.  That is the beauty of being in contact with people who really do 'get it'.

We are trained from childhood to be polite and nice and accept what the nice doctor tells us like it is the holy grail.  We are told to be good patients.  THESE PEOPLE ARE HUMAN, NOT GODS!  They forget, don't know, assume, have doubts and insecurities just like the rest of us.  A 'good' doctor still does these things but by admitting his humanity and listening to his patient he has a better success rate then the 'bad' ones.

So how can we as patients be sure to get the best treatment possible and leave the doctor's office with a feeling of satisfaction and success? 

Many patients don't know how to be assertive with their health care professionals.  They either are aggressive and insulting or meek and accepting of whatever is said to them. 

One of the best way I have found to get better SERVICE is to remember that you are paying for this service.  Would you keep going back to a restaurant where the waitress (receptionist) was rude and didn't seat you?  Or the chef (doctor) burnt your steak time and time again?  Probably not.  If you didn't actually complain at the time, you probably wouldn't go back.  So try to remember that the Doctor is providing a service and is in business.  This immediately empowers you.

What is it about sitting half naked on the examining table that takes away our voices?  If you are unsatisfied with an answer to your questions or don't understand the directions, then ask them to clarify.  You can do this in quite a mild way by saying, "I'm sorry I don't understand, could you explain that to me again?"  So simple but why is it so hard for allot of us?  I bet we would all ask the guy at Best Buy to explain how the DVR worked if we didn't understand him. THIS IS OUR BODY AND HEALTH!  Ask questions and be sure to understand the answer before you leave. 

You can also disagree with your doctor and express your sentiment. Just like anyone else in your life, as long as you are polite, disagree and EXPECT a polite opinion back. 

We need to deal with medical professionals the way we deal with everyone else.  Communicate, EXPECT respect, don't ACCEPT poor service and vote with your feet if you continue to be treated badly.  Empower yourself to be a good patient, and you will find that suddenly your health care needs are being met.

OUT WITH THE OLD/IN WITH THE NEW

I get goose bumps when I remember the joy of this Mother's Day. 

It may have taken me 3 days to recover from the exhaustion and pain of travelling to Lexington, KY to watch my daughter compete in her last Intercollegiate Horse Show Association National comptition, but it was worth every ouch!

Allie has competed both as an individual and for Berry College the last four years at Nationals and has recieved some very good results.  Last year she was Reining Reserve Champion, and competed at the NRHA Derby.  This was her last chance to be champion. She travelled up on Thursday with her team and by Saturday night Berry College had a slim lead for the team Gold.  It all came down to Allie's Team Horsemanship class, the last of the show.  If the Oregon State competitor beat Allie, then Berry would be Reserve National Champions.  Not bad, mind you, since Berry has never been National Champions or close.

Catherine and I joined up with Allie's friend Keri in Rome, Ga, and her husband drove us 7 more hours to our hotel in Lexington.  It was a rough ride, as I'm not very good at trusting others to do the driving, so stayed awake the whole journey making sure he stayed on the road.  The funny thing was Catherine is a control freak like me, so here both of us were watching intently that he drove us safely.   The night was miserble for me, as I shared a bed with Catherine.  I didn't want to wake her so tried to lie very still, and not toss and turn in pain.  At 4am I was up and rearing to go.

Allie started the day with the final round of the AQHA Cup, where she performed an awesome reining pattern to clinch the Reserve Champion. But was she always destined to be the bridesmaid?  Other team members did their thing and finally it was Allie's turn to ride for the Team.

The class started with rail and then on to the individual patterns.  Allie's ride was very good, but this is the best college riders in the country so they all did great rides.  The awards are announced in reverse, so 10, 9,8 etc.  The 4th place rider was the girl from Oregon State!  We knew Berry had one the Championship, but where would Allie place?

The silence was deafening when only two were left standing.  When they announced the Reserve Champion the whole place went crazy!  We were crying and screaming, including Allie, who bowed her head in tears of joy.

This week two of my babies leave the nest.  Allie is taking her incredible win and Bachelor of Science Diploma and staying at Berry as the Assistant Coach, where she will continue to help Berry win many more Championships.  Catherine is graduating with a Bacholor of Science in Phychology on Saturday and begins her hunt for her dream job, while doing Post Bach classes in medicine.

I am throwing out the pain of RA (I wish!) and getting my horse ready to compete in a few shows this summer before going to England for a month.

And the Newest addition is only 7 weeks away from making his entrance into this wonderful world! When the circle starts all over again.

TO DO OR TO OVER DO?

It's Saturday morning and I have woken stiff and sore from my activities yesterday.  Oh it was fun and worth it, but somehow I have to get a balance so that I can have fun a few days in a row.  I have a tendency to feel a bit better and jump all in and do way too much.  I might manage this for a few days or even a week but eventually it takes it toll and my body (or actually the RA) says enough is enough.

I spent the day with my friend who is a fit 70 year old.  She did exactly what I did...hauled 2 horses 30 miles, tacked up and rode both of them for approximately 3 hours, and hauled them home again.  I spoke to her about an hour after I got home and she was still on the move, going somewhere with her husband.  On the other hand I was shattered!  I had to go to bed and take a nap just to be able to do the barn chores. Whats up with that?

Now some of you reading this, who live in cities and the only exercise you get is an hour at the gym, would probably be as shattered as I was even withoutt the RA.  But as someone who only a few years ago was up at dawn working physically outside and in my job for 18 hours at a time, this is nothing!  The frustration is immense.

When I asked my husband, from my recliner, how it could be that a 70 year old outlasted me? He replied BECAUSE SHE HAS NOTHING SERIOUSLY WRONG WITH HER. 

I guess this is the memo that I missed...I do have something seriously wrong with me, and I have to cut my cloth accordingly.  Bummer is all I can say.

So...today I'm going to ride my wonderful horse this morning, after doing the barn chores for 9 horses.  Then I'm going to get in the truck and drive 8 hours to Lexington, KY to watch Allie compete at the ISHA Nationals tomorrow.  Too much?  Probably.  Steve says he will be dressing me again Monday morning and he is probably right.