Feeling Defeated and Deflated!!!

It has been an off week I think.  My pain for the most part is okay.  Okay in other words I  can work through it for the most part, but have had to break down and take the heavy pain killers I have in the evenings.  Which makes me feel what I can only describe as hungover when I wake up.  So that has left me feeling just plain blah.  I am trying to snap out of it and not let things bother me but seem to be failing in this regard.

I have been thinking this week a lot about what I know about RA.  Honestly it probably isn't a lot, and again honestly it doesn't bother me that much.  I "know" a lot of people who are on a mission to figure out what causes RA or answer the question why me?  To be honest I just don't care anymore.  In the end it doesn't really matter what caused my RA or why I got it.  What does matter is how I decide to live with and treat my disease.

Things I do know about MY RA, cause lets face it, it is different for all of us.

1.) No one else in my family that I know of has or had RA.

2.) I was very young, "too young" to have RA and no one believed that there was anything wrong with me including my family.  In fact my father would get so mad at me for not being able to do things that he would say "your just allergic to work"  Of course this is because he wanted me to take golf carts and cars apart on my own with very little to no help.  I haven't been able to kneel since I was in my early 20's and getting up and down was quite hard.  Not to mention that when my RA came on I lost the strength in my hands very quickly.

3.) I have very hard to control RA.  I have been on several medications and only 1, yes 1, has totally controlled my RA and halted the progression of it.  That medication I proved allergic to and was only allowed 2 months of freedom from my RA.

4.) I have found no foods that have any affect, either positive or negative on my RA.

5.) This one annoys me, I did not, have not, seem to not be able to take weight off despite my RA.

6.) I have learned over the years when I am going to "Flare".  Sometimes I can even tell ahead of time if it is going to be a "BIG" flare or a "little" flare.

7.) Like most people I can't seem to pace myself when I am having a few good days.

8.) None of the above matters, because things change so quickly.

In my early 20's I had six months where I was pretty much bed bound.  I don't remember much from those months except the pain.  I remember one days taking a bath and passing out from the pain.  I dealt with that alone because my health and my pain were mine alone.  No one else cared that was a part of my life at the time.  In fact until I turned 27 and met my husband I carried the weight of my problems on my own.  Yes I had family but they had other concerns.  Won't go there cause I would sound pretty bitter, and truthfully I probably am bitter.

I may not "want" to know why me or what caused my RA, but I do want to know about the things I put into my body.  So when I am told, "We are going to put you on a new medicine."  I demand to know what the choices are and I make the decision about what I am going to put into my body.  I do the research and I learn what I need to learn.

Why, well Why not???

I guess what I am really trying to say is that we all have our own way of dealing with out disease, and the process it takes in our bodies.    I see so many people who have decided that there way is the BEST, or ONLY way that this disease SHOULD be dealt with.  That is so wrong...  What works for one of us may or may not work for another one of us.  We are all dealing with the same but very different disease. Why should we push things onto others?

Ultimately I don't know much about, RA, but who does.  Why does it matter what caused it?  Why does it matter, Why Me?

I don't think it does matter but that is just me.  I don't like hearing how people think I am wrong because I am putting horrible, terrible, poisons into my body.  You know what?  My disease may not be in remission, my disease may never be in remission, but at the moment I can walk without my cane (walking stick).  I can cuddle my kids without too much pain.  I can live a life that I want.  I can do that because of the medications I put into my body, and for me the side effects were in no way worse than the disease itself.  I understand that for some people they are.  When I was on Enbrel I was hit with the worse migraines I could ever imagine.  A few weeks in I was ready to call my Rheumy and say I just can't take the side effects of this drug.  Not everyone gets that with Enbrel but I did.  Not everyone has hallucinations with Methotrexate but I do.  So am I wrong to take it.  Well shouldn't I be the only one to make that decision?

Why can't we just live by the old adage live and let live.  I promise I won't "discuss" your decisions about your health, if you won't disparage mine.  I am doing what is best for my family much like you are.

Hard Decisions.

For those of you who know me, you know my 7 year old may or may not have JRA.  We have had testing done, which was inconclusive.  We are supposed to take her back to the Paediatrician in October of this year to do a follow up.  Morning are bad for her.  Bad as in she is going to make  life as miserable as possible for everyone who happens to be in the house at the time that she is not feeling well.

This morning she woke up and promptly told me that she didn't feel like going to school.  She complained that everything hurt.  Now on days like this it is hard to know if she is "faking" or if she is indeed having a bad day.  I keep tend to think that maybe after getting her to move around for a while she will start doing better and not hurting as much.  Like those of us with RA mornings are usually hard to say the least.  I know those first few steps I take hurt like the dickens.

So this morning I made her push through.  She was quite the unhappy little cherub about it all.  Grumbled at whined and complained the whole time.  Now by the time I got her to school she was fine.  For me it is hard to make the decision do I make her push through or do I give in.  Most times with having no energy of me own, I want to let her give in.  In the long run though I know that, that is not the thing to do.  In a lot of ways though it is quite hard for me to make her push through knowing she is hurting.  When we got to school I asked her if I needed to tell her teacher that she was hurting.  Today they are doing a sports carnival of sorts, well sports and cultural expo, to be exact.  So today I made the right decision, right?  She has been having some swelling lately as well so the momma in me just wants to curl up on the couch with her and rest for the day.

Being a parent is hard for everyone.  I mean it's not like those adorable, wonderful smelling, angelic little people come with instruction manuals.  Believe me sometimes I wish they did.  Parenting when you have a chronic illness can be so difficult.  I have to admit that there have been days that I let the kids get away with staying home simply cause I had a hard time mustering the energy to get them up, dressed, ready, with lunches, recess', and everything that goes into just getting them out the door.  Some days just getting them out of bed seems an insurmountable task.  Well I guess I should say getting me out of bed since nine out of ten times they beat me in the waking up department.

One thing I am trying to learn is to NOT beat myself up about the good, the bad, or the ugly.  These children were gifted to me, for whatever reason I was blessed to have them.  I am grateful daily that they are mine.  I would be lost in this world without my husband and children, they make this difficult journey well worth the incredible effort.  My chronic illness affects how I parent.  I would be the worst kind of fool if I were to try and convince myself it didn't.  The norm in my house is mommy is sick.  Mommy has arthritis and therefore isn't able to plan things in advance.  In fact if she does make planes murphy's law strikes up and I usually end up flaring quite badly.  Although mommy has learned of late that if I take the few days before plans and rest as much as possible I tend to be able to get through the event.  It may end up meaning I take more pain killers for a few days afterwards but we usually manage.

Our normal is you have to be gentle with mommy.  This one is hard for my almost 5 year old little boy, you know have boys can be.  Out normal is mommy is gonna be loopy sometimes, and we always know when she takes pain killers cause she can't shut up.  My kids know that sometimes people are sick and there is nothing that can be done.  That sometimes those people just have to live with being sick and adapt.  My children are indeed adaptable.  There are times they get sick of my disease, but for the most part they are great.

My RA Body

I have never been a small woman, have always had some extra meat on my bones so to speak.  Since going on biological therapy for my RA though I have gained weight.  Within a month of starting Enbrel I put on 5 kilos, then another 5 the next month.  Now the really odd thing about that was I was more active and eating less.  Well I was more active when I was not having a Migraine for three days that usually kept me from being able to eat anything at all.

A few years ago I was on Prednisone, but didn't have a huge amount of weight gain, in fact lost a bit of weight but I was post pregnancy and breast feeding.  I then fluctuated for a while on it and was never able to loose more than the 5 kilos.  So when I started the biologicals I was really upset that I put the extra kilos on.  I could not for the life of me figure out why the heck I would be gaining.  Oh well ultimately that doesn't actually matter.  So long story short I have struggled with my weight for my entire life.  When I moved to Australia I was 76 Kilo's and despite my MIL telling me I still needed to loose weight I felt pretty good about myself.  Especially when I was able to fit into some size 14 pants for the first time in years.  Now I was very disheartened when my MIL blurted out that I just needed to loose some weight and my RA would get magically better.  It hurt even more considering I have lost 80 pounds from the first time she met me, and she never said a damn word about it.  I had worked hard, 3 jobs at once, plus taking care of her grandchild and son and she couldn't even say you have done a good job getting all those baby pounds plus a few off.  But I digress.  When I was at 76 Kilos I felt good, but my RA wasn't any better than it had been when I was 20 - 30 Kilo's heavier.  In fact in some ways the pain was worse.

Today I made a decision, I was to be 75 Kilos by the time I am 40.  I turned 37 this year, so I am giving myself almost 3 years to get the weight off, and as embarrassing as I find it I will tell you I have to loose about 50 Kilo's I think.  I hate that I have had weight problems my whole life, but there isn't anything I can do about that.  I am going to give myself what seem like a reasonable goal and try to move forward with it.

The thing is I know in my heart that if I don't get all those Kilo's off I will still be okay.  Truth be told it just means that it could take a bit longer.  I want to be a healthier fitter mom and spouse and the only way I can do that is jump in and try, right?  I may be stuck with an RA body that has disfigured hands and lumps and bumps places.  Being on pred for a while, may have made my tummy a shape that I don't so much like, but I can be happy with me.  I want to undertake the time and changes that I need to do to be happy with me.  My kids love my and my hubby loves me, that makes all the difference in the world, now I just need to make sure I am around for as long as possible, and that means taking better care of me.

Sorry I know I rambled...

There has to be a better way

Yesterday was infusion day for me.  I don't so much like infusion days.  I left for my hour plus drive to get to the hospital feeling pretty good.  That was not to last long I tell ya.

SO I get there and for a change they are seriously busy, but moving faster than they ever have.  Confused me to no end.  Oh well I am sitting in my chair waiting for the nurse.  I started reading and relaxed a bit.  Well the nurse came over to get my cannula in.  It took 4 tries this time.  I am so sick of having to be poked numerous times.  First on was a lovely nurse who got a flash, then nothing.  I was happy for her to take it out cause it hurt anyway.  The second person to try was the doctor in charge on the infusion room.  He went straight through my vein <sigh>.  The third was the "Expert" at least that is what they said.  She went into the hand and nope not a drop came out, no flash.  Then the best lady in the infusion room agreed to do it.  I told her I wish she could just do it every time.  She told me to just asked for her or another one of the women.  She was like, look just tell them you don't wanna insult or be rude but you would just prefer one of the two of us.  She was like, there is no reason for you to be poked 4 times if we can get it in the first time.  So they were in, not in a vein they like using for infusions but in none the less.  Of course after the 4 needles I was feeling pretty crappy.

Got the infusion over with and had my vitals checked.  Well my blood pressure had shot through the roof during the whole event.

There just has to be a better way to do this.  I have NO IDEA what it is but I am over the poking and prodding especially when I tell them where to go and they won't.  I think I know my arms and veins better than them.  I get that they don't want to use the inside of the wrist or the inside of the elbow, but if they can get it in, in one go isn't that better than me looking like a pin cushion when I get home.  My son asked me last night why I had so many bandaids on.  So I had to give him an explanation.  Just told him that it took them a while to get mommies medicine into her.  Luckily I don't seem to be as bruised as I was last time.  I had a bruise that didn't go away for a month after that one.

Today I am tired and in pain.  At 8 am I had to roll over and take some pain killers before I could even think about getting out of bed.  I am fuzzy headed and feel like crap.

So below I have added some pics of one of my last "good" infusions.  I took them to post on my RA learning and support site.

Like I said, THERE HAS TO BE A BETTER WAY.

May the ones we have lost to the terrible effects of RA Rest in Peace, and may they know no more pain.

May the families left behind remember the good over the bad, and may the walk forward in peace. Knowing that the ones lost will be forever at peace.

Remember we choose to live or die with everything life throws at us. Some of us have more to deal with, but in the end we are all just trying to navigate through life with as little pain and suffering as possible. For some of us we get a double dose of the pain, and those of us who do...

We know they joy of life and the sorrow of lose.

We know how bad the pain can be.

We know the sting of rejection, and for some the real meaning of true acceptance.

We struggle daily, for some of us to WANT to live.

In the end we cherish the people around us who accept and love us despite our limitations. We give the ones we love so much more than our love, we give them each and everyone a bit of our soul. If you are truly blessed to know a person who is chronically ill and in pain daily, then remember to tell them you appreciate the effort it took them to just wake up on any given day. For some of us we need to hear that. We need to know that our efforts to live are appreciated and recognised.

Above all remember that EVERYONE has a struggle to overcome...

Sometimes just a kind word could make a difference.

I wrote this a couple of months back when I had heard that 2 women, RA Chicks had taken there own lives.  At the same time I had heard that another RA Chick a blogger whose blog I just adored had passed away.  Her death was not a result of her RA, still it made me start thinking.

The joys of children!

I have three children.  

My oldest is 8, will be 9 in January and is in Year 2 (second grade).

My middle child is 7, in fact turned 7 last week, she is in Year 1 (first grade).

Then there is my boy, who is the baby, who is 4, almost 5.  He will start school in Jan/Feb of next year.

 My middle child is the one who totally pushed me beyond the limits of my patience and sanity this morning.  Now I have to say that she is the one who shows early signs of possibly having JRA (juvenile rheumatoid arthritis).  When we really started worrying about it, I decided I had to tackle my disease in a whole new way.  I could  no longer sit or lay around feeling sorry for myself.  If she does indeed develop or have JRA I need to be the one to show her it is not the end of the world.  I need to show her it is still possible to accomplish our dreams and have a life.  With that said, mornings are not a good time for her.  It takes her a good thirty minutes to get moving in the morning and then some mornings she is more than just a little difficult, like this morning.

She was all happy while sitting on the couch watching TV with her brother and sister.  Then I asked her to get ready for school and immediately the excuses started.  Now yesterday morning she woke up with quite a bit of swelling in her back under her right shoulder blade.  This is a spot on me that can get some pretty horrendous flares.  I get to the point where I can't breathe because of the immense pain associated with it.  Sleeping is next to impossible and it takes a good 3 days of constant pain medications to get the pain back under control.  Now I never now what is going to cause this so I have no way of knowing when to expect it.  So yesterday I though, well she might not have a great day.  I gave her Nurofen (Ibuprofen) and sent her to school.  She seemed fine, was really grumpy and whiney when she got home.  So silly me I was not expecting a difficult time this morning.  Don't ask me why, I guess I was living in a fantasy world.  At times my darling middle child can fixate on things.  She did this, this morning.

What did she fixate on you ask?  Well oddly enough something she has known for some time.  This morning one of her shoes, yes just one, was too big for her.  <SIGH>  Yes I did sigh on her.  I have explained to her before that she wears those same exact shoes every single school day.  I tried this tact this morning.  It just lead to more and louder crying and screaming.  So I said, Rhaine you know one of your feet is bigger than the other, those are the same shoes you always wear.  Around the 15 minute mark she decided to demonstrate the fact that one shoe was WAY TOO big for her by kicking it off and across the kitchen.  Still I am keeping my cool.  After a good 20+ minutes of this she finally put her shoes on.  I had gotten her lunch ready all she had to do was put it in her lunchbox.  After she did that she sat on the floor growling at her own shoe trying to make it even tighter than it already was.  SO finally we are done with the shoe drama, we move onto breakfast.  She wanted peanut butter toast.  I made it for her and she carries it to the table and scream bloody murder yet again.  This time it is cause her brother and sister had Strawberry Milk.  I told her  they asked for it, you have not asked for Chocolate Milk, do you want chocolate milk?  She did and I made it for her.  She then goes to the table to start eating her toast.  She ended up dripping peanut butter all over her shirt and started screaming.  I again not quite so calmly told her to just go change her shirt.  She did and now we start getting her hair ready.  I should tell you today is school picture day.  We are not actually buying pictures but she still has to look okay for the class photo.  Well she got upset YET AGAIN cause both girls have lost all the blue ponytail holders and she has to have blue today.  I tried to explain that no one was going to see the white scrunchee cause it was going to be at the back of her head.  She freaks out on me cause while I am brushing her hair and moving her head ALL over the place she is worried that the ponytail will end up on the side of her head.  The side of her head is TOTALLY unacceptable as far as she is concerned.  I get the pony tail in and she screams it hurts.  I took it out, at this stage I am really at the end of my string. So she tells me she wants to do her own hair.  I refuse, so she cries and whines the whole time, but I get that dadgum ponytail in.  She puts her hands on her head and screams at me, cause she decided it is not in the middle.  At this point my patience is at it's end.  I tell her it was in the middle and to get over it.  So while she is crying I have to get her school jumper on her, not an easy task.  Now I have no idea why, but the crying continues.  I look at her and told her I was done with her.  Yes I am a horrible mother, I further said I can't take anymore of this, this morning we are going to school.  She cries all the way to the car, I slammed the front door, she cries as she is getting into the car, I slammed that door to.  SO what do you think happens as I get myself into the car, she quits the freaking crying, completely and totally.  She we get to school and she is once again my loving, caring, cuddly little baby girl.  Apparently she was over being upset with me cause she held my hand all the way to her class, then had me walk her down the steps to the play area.  At this stage I see she got peanut butter on her skirt.  She told me it was no big deal to go ahead and go.  I had to take her to the bathroom to clean it up.  There is a boy in her class who is allergic to peanuts, God I hope I got it all out.  I also told her she could not have peanut butter toast for breakfast on school mornings anymore.  God help me on the day she forgets that one...

Medicine woes

Just to introduce myself.  I am Jackie and I have had Rheumatoid Arthritis since I was at least 19.  It took me several years to be diagnosed.  I say since at least 19 because looking back it is very possible that I have had it since I was very young.  In the last 3 years I have been on several biological medicines and am currently on Orencia Infusions once a month.

I also take several pills including

Sulfasalazine - Azulfidine -Twice Daily - Disease-modifying antirheumatic drug

Arava - Leflunomide - Once Daily - Disease-modifying antirheumatic drug
Plaquenil - Hydroxychloroquine Sulfate - Daily - Disease-modifying antirheumatic drug
Methotrexate - evil drug- Once Weekly - Disease-modifying antirheumatic drug

Endep - Amitriptyline - Once Daily - anti-depressant - pain management

Noten - Atenonol - Once Daily - blood pressure

Orudis - Ketoprofen - Anti-inflammatory

There are both supplements and pain killers that I won't get into today.




Since we moved in May and I thought that I would make my life a bit easier by arranging to have my infusions at the new house.  I was told this would be no big deal that I could not only have them moved but have them at home.  Well apparently this is  not an entirely easy transition to make.  Not like I was lead to believe it would be anyway.  The ONLY company in Australia to distribute Orencia requires a completely seperate application from the Pharmacy for this particular drug.  So even if I can find a pharmacy that has an account, they will have to have an Orencia Specific Account in order to supply my infusion drugs.  Confused yet, well I sure as heck am, and so is the Chemist that was trying to get me my drugs today.  On top of that problem the infusion nurse has yet to get in touch with me anyway.  Meanwhile I apparently can't just go ahead and take my last appointment at the hospital that was giving me my infusions cause it is such late notice, I am supposed to have the infusion on Monday.

I have called my Rheumy's nurse and asked her what I could do.  Her response, "Well I don't know, maybe you could call the hospital."  I am thinking why are you employed since your ONLY job is to handle injections and infusions if you can't actually do that job.  I swear this woman keeps screwing up on me.  When I first started the infusions she sent the script to me instead of to the hospital.  Then I had to go out of my way to drive the prescription to the office so they could then mail it to the hospital.  Now I do realise that, that does not seem like a lot of stuff to have to do.  But just getting out of the house and into the car is all I can accomplish some days.  At the time I was off all biological drug therapy and the pills just don't work for me.  That short trip was all I could do for that particular day.

So at the end of the day, it looks like my infusion is going to have to be late, and I am exhausted, hurting, and wanna cry.  I don't like crying, especially when I am alone with the kids, but tonight I am being mommy dearest and I hate when I get that way. Oh and lets not forget that last night during a storm I went out to get something out of the car.  While going out I tripped and ended up on my knees and forearms with a twisted ankle.  Luckily it was only twisted, but the more I have been on it today the more it hurts.  I am afraid to look if it has been swelling or not.  I wanna go to bed, but will stay up a bit longer so I can actually see my darling husband.