The Beginning of a Life With RA. Part 3

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So, the moon was rising and so was my jean size.  Anyone who has used Prednisone for an extended time knows what I mean by this.  Moon meaning my moon face was developing.  A not so lovely side effect of Prednisone.  Jean size is pretty self-explanatory.  This is another side effect of Prednisone.  I have to say though, at the time, I didn’t care because I had relief.  Everyone noticed my new look more than they noticed I was moving better.  It was sad.  I will admit, for a long time, I felt hateful toward most of the human race.  Mainly because I was feeling so frustrated in trying to balance things in my new life with RA.  At times I couldn’t see past how shallow some could be or how much people who can do everything so effortlessly take it for granted.  Most of all, I couldn’t stand being around people who appeared to have 5 cups of coffee because they had so much energy.  It was hard.  I could have 5 cups of coffee back then and you know what happened to me?  I’d have a panic attack and then fall asleep.  The Prednisone, never seemed to take care of my lack of energy.  It was nice to not feel so much pain, but I could still barely walk.  The damage in my feet, ankles, and knees had given me a very unattractive walk.  There went my chance at walking the runways.  Seriously though, body parts seemed as if they were just giving out one by one.  Even with treatment. 

Quick recap, part 3 took place after I had RA for almost two years.  I’d tried quite a few different drugs, but Prednisone seemed to do the best for pain relief.  After being on Prednisone for about a year, I hardly recognized myself.  I had gained 50 lbs easy and my face looked round and puffy.  I was now overweight.  Think about this for a moment.  When you have active RA, you have no energy, your meds can cause weight gain, the pain is unbelievable if it isn’t controlled, and your ability to be normal seems to have disappeared.  This all adds up and a bad thing comes to a head.  Depression.  Of course, right.  How can someone not be depressed with all of this going on with them and their body?  It’s such a vicious cycle too.  The less energy you have, the more you weight gain, the more you sleep, the stiffer you get, the extra weight causes the damage to your joints to increase, the pain makes you want to not move, your normal life seems to be gone, you’re sad, people don’t seem to understand and start to leave you behind, you’re even more sad…you get the point.  I do want to point out now though, I went through all of this.  Sleeping for one, doesn’t make it better.  It makes things worse.  A lot worse.  Weight gain doesn’t have to be extreme.  You can do your best and try to eat better to keep from gaining so much.  Your meds can be and should be changed if you’re not getting relief.  This is YOUR life.  Take charge of it or you really will fall into such a depression and it will be hard to come out of it.  Your body will be so mangled and it can’t really be fixed.  This is the most important thing I can share with any of you.  I could barely walk, I just thought my first rheumatologist was right.  I drank like a fish, because it felt like it helped the depression and pain.  I felt like going out and drinking with people gave me a “life”.  That didn’t do anything, but put my liver at serious risk.  Let alone, my whole body.  This went on for years and years.  Sometimes, I’m amazed I’m still alive.  I want to remind you though, this is the dark side of RA, but things don’t have to stay this way.  Also, Prednisone comes with some serious consequences.  Please, never solely rely on it.  My body is wrecked from it.  My hormones rage when I’m on Prednisone.  It’s not pretty at all.  Yes, when you go off of it, your weight somewhat returns to normal and your face slims back down.   However, the fast weight gain can really leave some marks on your body.  It also can lower your bone density.  Meaning your bones become more brittle.  These two things you can’t completely get rid of.  You can put cream on your stretch marks trying to diminish them or cover them up, and take calcium to help your bone density.  There are many other negatives of long-term Prednisone use.  All and all, it just adds to the mess you can become with RA.  There is hope and Prednisone isn’t it.  When you feel you’re at the end of your strength, make things easier, not the way you might think.  Find your motivation.  Trust me, it’s in there.  Read Part 4, to see what can happen when you find your motivation.

Click below to find Part 4

https://dreamzncolor.wordpress.com/2010/05/20/the-beginning-of-a-life-with-ra-part-4/

A Coffee Maker That Reheats Coffee

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I woke up this morning and did my usual.  Poured a cup of coffee that was left in the pot from earlier in the morning.  It was cold of course, so I put in the microwave to heat it up.  My husband gets up early in the morning for work and has a pot of coffee made, but only uses about half.  Instead of wasting a half pot of coffee, I drink it when I get up.  This morning, I thought to myself…I wonder if there is a coffee maker that has a reheat feature.  With coffee in hand, I sit down at my pc and start to search for coffee makers with this feature.  I was surprised that I didn’t find any.  So, now I’m wondering why?  Why hasn’t anyone done this?  Maybe, it’s not considered necessary.  Maybe, it can’t be done.  Maybe, no one thinks it’s something people would want.  Personally, I would like it.  Yeah, popping a cup in the microwave for about a minute does the trick.  Would it be better if someone could incorporate a reheat feature though?  My husband just turns the coffee maker on again when he plans on having another cup.  I think that doing that will wear the coffee maker out a lot quicker than regular use.  My mom pours the old coffee back in and recycles it and I think that would mess up the coffee maker after awhile as well.   Basically, I’m curious.  Would any of you like to have this type of feature on their coffee maker?

                  

The Beginning of a Life With RA. Part 2

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The chaos begins!

So far, I’m not impressed with the Rheumatologist I see back then.  He’s arrogant and makes me feel like I might as well jump off the plank.   From “The Beginning of a Life With RA.  Part 1” (The first Rheumatologist I saw said I wouldn’t be able to walk by the time I was 30).  I have to make it a point to say that I’m going to be 30 this year, and if nothing drastic happens, I’ll still be walking.  Mind you, in all fairness, he was just trying to tell a young girl that she needs to be vigilant in the fight for her body’s mobility.  However, I think a different approach could’ve been used. 

I was tried on this drug and that one.  My mom’s insurance wouldn’t cover the good stuff.  The Gold.  Thankfully, since I was attempting college, I was still covered on her insurance.  Yes, I say attempted, because that’s what I did.  Due to a car accident that totalled my car and gave me a concussion, my newfound fatigue and pain, not to mention a school that was an hour drive each way…I failed.  I only made it a month into my freshman year.  Guess what happens when I’m not in college anymore?  Right, no insurance.  Then the doctor bills start to pour in.  What do you think that caused me to do?  Yes, I stopped making my RA appointments.  By the way, for all of you newly diagnosed RA patients…Find a good doctor, that you like and trust.  Go to them.  Do what they tell you.  If something isn’t working, let them know.  They are they for you..because of you.  I say this because, I did the opposite and looking back now and at my crippled fingers, fused wrists, swollen ankles, swollen knees, and constant stiff neck…I was stupid!!! 

Things are a little blurry from those days.  I know at some point, I switched doctors.  I found one I liked quite a bit and had a new approach with me.  As well as, payment options I could afford.  He’s the one that put me on Vioxx.  That didn’t turn out so well though.  One day, I went with my mom to get glasses.  I had been experiencing hives but we weren’t sure what was causing them.  As I walked around the store looking at pairs of glasses, I felt the hives coming on.  Well, if you’ve been in an eyeglass store, you know there are mirrors everywhere.  So, I find one to see the extent of the damage.  I screamed, WHOA!  Holding my head down, I feverishly searched for my mom.  I looked like the beast from the Disney tale.  I was also suddenly not able to see as well.  Ok, ok..I know.  How strange, right?  I’m in an eyeglass store and I can’t see well.  Hahaha.  I finally find my mom and not much longer after I find her, I straight up went blind for what felt like forever, but it was more like 2 minutes.  I could hear.  I could smell.  I was coherent.  I just couldn’t see.  The lady that was helping my mom looked at me, freaked out, and said, “get her to an ER NOW!”  Long story short.  After hours of ekg’s and numerous other tests.  They decided I was probably allergic to Vioxx.  Then the doctor put me on this thing called Prednisone for the reaction.  Go ahead, moan and groan..sigh, boo.  Whatever you wish.  This was the beginning of a love affair for me.  I’ve seen the Prednisone love affair simply put as a love/hate relationship.  To me, it describes Prednsione perfectly.    ….Then the moon was rising and so was my jean size.  See part 3 for further details.

Click below to find Part 3

https://dreamzncolor.wordpress.com/2010/05/20/the-beginning-of-a-life-with-ra-part-3/

The Beginning of a Life With RA. Part 1

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At the age of 18, I should’ve been heading off to college.  I should’ve been on the brink of an exciting adventure, but I wasn’t.  I had a strange knot and a lot of pain on the side of my foot.  I worked on my feet a lot.   I thought for sure, worse case scenario, it was a bunion.  That actually makes me laugh now.  My mom urges me to see a doctor and insists that she’ll go with me.  I’m thinking, c’mon mom.  I’m 18 now.  Seriously.  Cut the cord.  The doctor walks in.  Asks how I’m doing, so I proceed to tell him and show him.  He’s just doing his usual.  Mmmhmm, yes I see, ok.  He leaves the room, stating he’ll be back in a few minutes.  I then go on again to my mom about the bunion idea.  Then when he comes back, he says he wants to run some blood tests.  Things flipped upside down for me for a few minutes as he mutters things about Rheumatoid Factors and a whole bunch of other things I didn’t understand.  At this moment, I’m glad my mom is there with me.  She happens to be a nurse as well.  I start asking her questions when he leaves the room again and she’s hesitant to say anything at all.  It felt like forever, but he came back.  He says my Rheumatoid Factor is high.  I’m shaking my head, not understanding what’s going on.  Then he hands me a script and says you need to see a Rheumatologist.  I’m thinking, isn’t that for people with arthritis.  Like older people with deformed hands and bad backs.  I just couldn’t wrap my head around the whole thing.  Well, that was the beginning.  It was rough.  It got a lot worse than that silly pain in my foot.  The first Rheumatologist I saw said I wouldn’t be able to walk by the time I was 30.  Way to wipe away a young woman’s dreams.  It just about did too.  That’s more the ..meat of my story.

Click below to find Part 2

https://dreamzncolor.wordpress.com/2010/05/06/the-beginning-of-a-life-with-ra-part-2/