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Tuesday, December 27, 2011

Christmas 2011

     Christmas.  The most joyful and exciting time of year......... for some. Those of us with RA it can so disappointing and more stressful that can be imagined.  Family and friends are usually the cause of the stress and disappointment outside of what pain has taken away from us.  For me, I used to love Christmas.  I used to love decorating for the holidays, shopping long hours, baking and cooking, spending hours wrapping gifts.  Not anymore.  Family.  Lets begin there.  They do not understand and will not understand this journey at all.  No matter their intentions.  I have heard, lose weight, it will cure your arthritis.  NOPE!  The one misconception with this disease is the word arthritis.  This is NOT your grandmother's arthritis! Family will say the most hurtful things and then do the one thing we hate the most, ignore us and our need for assistance at the worst of times.  This disease was named wrong.  It is not arthritis in any way.  I don't need advice nor some lame so called cure you heard about.  I hear it all as do others.  
     Christmas usually ends in great pain and great disappointment.  This year......... great pain was the worst for me.  Disappointment in not being able to be normal and behave normal.  What do I mean?  
     1.  Stairs.  Not being able to bound up and down stairs without so much as a thought or blink of an eye.
     2.  Having energy of a 4 year old to stay and linger all hours and party, drink and be merry.
     3.  To have a Mary Poppins attitude and float through pain as if it doesn't exist. 


     Stairs are the worst.  My ankles, my knees, and leg joints are weak from RA and I have been instructed by a surgeon and physician to not do stairs for risk of fall and injury.  I have explained this to family and friends and it falls on deaf ears.  They don't understand.  I hate going to family gettogethers because each home in the family has stairs you have to navigate to be apart of the festivities.  So, picture one taking each stair one at a time and almost teetering on falling several times and taking several minutes to walk them.  All the time doing this being watched by all without offer of assistance.  Awful.  The looks I get are terrible.  They do not understand.  energy is non existent.  


     Family thinks they are helping with their lame advice on a subject they know nothing about.  Sad.  But something we have to live with .  
I will have more on family in future blogs and friends as well.  


     I now dread the holidays.  I don't want to decorate because it takes too much of my energy and when I do I pay for that time I spent with great pain.I have been bedridden with this disease several times. I dread Christmas because I cannot enjoy it as I used to.  I used to love shopping for hours on end for gifts, baking supplies, decorations, etc.  Now I am good for maybe an hour in the store on my feet and that's it.  Sometimes I don't even have that much time.  


If you are reading this and do not have RA and are healthy....... please! Anyone you know in your life with this awful disease please be there for them and do not judge.  Become educated.  Learn about the disease and what it's doing to them and how you can help them when they need it.  Help is something I have asked for and not received.  I am not suppose to do stairs.  , my laundry is in the basement and I have repeated so many times that I am not suppose to the stairs to do the laundry and not one friend, family member, neighbor ever comes over even once a week to help get it done to keep me safer.  I cringe every time I have to do laundry because of the risk.  If I fall which I have 4 times, I could be severely hurt or injured. But, no one thinks about that fact.  I do what I can.  Little things that we take for granted in our everyday lives, I have to plan for and think about and fret over. 


Christmas was ok this year.  It could have been much better.  My children had a great Christmas which makes it good for me.  That was my goal, for them to have a good holiday.  They deserve it.  

Thursday, December 8, 2011

The shock.....

     The shock.  I had stomach issues and felt sick all the time.  I couldn't eat.  At this point in our lives we had two sons.  Brad and Brett.  Brett was a miracle.  Right from day one I had problem after problem carrying him.  I was given an 80% chance of losing him.  They didn't have much hope at all for him getting here.  I refused to terminate against the doctors recomendations.  I was determined to leave his fate in God's hands.  At 6 months my kidneys began to shut down.   My liver also was swelling and acting up.  They were going to bring him then but my blood preasure leavled out for the night and they sent me home.  Sent me home to be injected with heavy steroids to mature the babies lungs as we knew he was going to come early.  I was put on strickt bed rest as well with him.  That's just a shadow of the pregnancy I described.  It was stressful and very scary.  He did come almost 8 weeks early.  He was in NICU for 10 days.  He weighed right at 3 pounds at 2 weeks age when we took him home. I was told I could not have anymore children after carrying him through all i went through.  They had a crash team in the delivery room as they were convinced I would either stroke or have a heart attack.  They had warned my family of the high chances of one or both of us not living through the ordeal.  We did!  He is now fourteen years old and a wonderful son!  Very smart!  We tried for almost 3 years to have another child once he turned two.  I guess I forgot how bad it was!  LOL!  That's when it was reinforced from the doctor that the only way another child would happen would be through fertility.  We both agreed we didn't want six at once! So that closed that door.  We had two wonderful boys at that time.  


We had never really had a vacation, a real vacation since we were married.  Our boys were eight and fifteen.  The family twisted our arm and we all went as a huge family for a week to Flordia to enjoy the beach and relax.  It was so much fun!  We didn't want to come home!  We had nice rooms in the resort we stayed at.  We had a jacuzi in our room!  Which we enjoyed every single night!  LOL!  Vacations end and home bound we all become.  Back to home, back to work, back to the daily grind we were able to forget for a week.  


I got tired of the feeling sick all the time feeling.  We thought it was from the RA.  We didn't think there was much that could be done to chase it away.  Went for a routine visit to the Rheumatologist.  He comes in the room and began talking about starting me on more intese meds to treat the disease that obviously was progressing.  He ordered the blood work as I had to have preliminary blood work done before he could write out the script for the meds to make sure everything was ok for me to take them.  I came back the following week to get the script and he said I cannot prescribe these meds for awhile.  I was in shock.  Why not I asked.  He looks at me and without so much as a wink said, I cannot prescribe these meds because you are pregnant.  I about fell out of the chair I was sitting on!  I am what?!  Here I am 37 years old, 2 years into RA and treatment and after trying for a third child, and being told I couldn't, I AM PREGNAT!  
I was stunned.  My husband was 40. I went to the my OBGYN who said I could not have children and could not get pregnant without fertility help.  I looked at her with shock and said I thought you knew what you were doing here!  You said I could not get pregnant.  That's how I learned vacations can really take the stress away in more ways than one!  LOL!  


Then came the moment to tell hubby.  He was really stressed out with running his own business at the time.  He was hardly home.  My dad had passed away the spring before as well.  Then I had the RA to worry about because now I was off all of my meds and did not know what that was going to do to me or to my child I was carrying.  I didn't even know if I could carry this child after what I went through getting my 2nd son here!  I was scared to death.  Scared to move.  Scared to do anything.  My husband was upset.  He was more worried than upset. He was worried about me, worried about money, worried about everything involved.  I know I didn't want to go through what I went through getting my last child here again.  It was difficult to deal with on so many levels.  


Well, long story short, I had a wonderful pregnancy as the OBGYN put me on insulin which should have done with my last child.  He was only 2 weeks early as well.  He is healthy and wonderful.  He is now five years old and a handful but, so much light in our lives.  


My RA journey has so many aspects.  So many things have happened in our lives in the last 4 years it's amazing at times I am still standing. I am still standing.  I was not able to pick my baby up with my hands or wrists.  I had to use my forearms.  That was not fun.  I had to understand taking care of him was going to be more of a challenge now with RA than taking care of my first two sons ever was.  Now, with him at age five, I have not been able to pick him up since he was three.  My mobilibty is much worse now. I worry all the time about what shape I will be in when he turns eighteen.  But, I try not to think about that.  I try to only think of now, and what I have with my sons at this moment and this time.  I am thankful for what I do have with them.  


The saga contiunues!  Return next time for more of my journey.  It gets more interesting.  Gets more involved! 


Also, please understand, I am not a speller!  My grammar stinks and my spelling really lacks.  I apologize in advance for the lack in spelling and grammar. 

Thursday, December 1, 2011

ETC.....

I had a diagnosis.
My husband and I had no clue what it meant or would mean. 

I went to the appointment with the Rheumatologist I was reccomended to see.  He was awful! He explained to me you see.... I was a big baby and needed to grow up and deal and understand pain was my lot in life and deal with it!  REALLY!  I was shaking listening to this crap!  HOw dare he?  I was sitting in his office staring at this man with my elbows flared so badly they looked like aliens would burst out at any minute!  He had to gall to yell at me and tell me to grow up!?  I went off.  Now you have to understand me a little here... I do not deal well with people getting in my face and putting me down or talking down to me at all!  So I told him he would never see me again and I also added a few other choice metaphors in the there for effect.  LOL!  So I left.  I didn't know what to do now.  Who to see or where to go for help.  My family doctor was giving me celebrex and prednisone only.  Wasn't helping at all!   


I got a name of a Rheumatologist out of Indianapolis who came to our town once a month to see patients.  He was highly reccomeneded on many lines.  I was scared to see him!  LOL!  I went anyway.  Of course!  I wanted to know what was happening to me and wanted to know how to get rid of the pain!  


Dr. Ski.  That is short for his name.  Very short! He had a very long name that was difficult to pronounce.  Now. I was diagnosed at 35.  I am now 37 at this point.  Two years into this and still haven't made any headway for treatment. No education either has been offered to me.  


Dr. Ski was wonderful.  Very smart and knew his stuff about RA!  
He sat me down, examined me and re did the blood work to make sure of the diagnosis.  Diagnosis correct.  Rheumatoid Arthritis.  


He informed me RA is an Auto Immune disease.  Huh?!  He went on and explained how my immune system has a flaw in it that is causing it to attack my body as if it's the enemy it needs to kill. He began me on methotrexate.  Not a fun drug.  Do you know methotrexate is one of the main drugs in Chemo therapy used for treating Cancer?  Yep.  Sure is.  So I was on Chemo!  He also started me on plaquinil,.  Wasn't enough.  Still having great pain and great flares.  


During this time with Dr. Ski. I began to feel ill.  Like stomach issue ill. I had no idea what it was and it was not fun either. 


I was in for a shock!  A shock that would rock my world!

Wednesday, November 30, 2011

The beginning

It began at age 35.  Maybe it began then.  I can look back before then even as far back as my teens and see signs of this awful disease.  
     Stay at home mom of 2 boys at the time.  I didn't have to work.  My husband owned and ran his own business successfully.  I had gotten ill with what we assumed was the flu.  The next morning I could not move out of bed without screaming.  We just thought it had settled in my muscles as well.  The third day....... more dire pain.  My husband was tired of it and put his foot down and made me go to the doctor to find out what was going on.  He had to dress me, put my shoes on me, tie them. help me in the and out of the car.  Help me walk into the doctor's office.  I couldn't walk without crying.  It was awful.  The doctor did a blood test as she assumed for some reason it was gout.  Gout!?  That threw me.  She said the other possibility is Rheumatoid Arthritis.  She finished by saying further..... you do not want it to be RA.  It's a devastating disease that takes your life away bit by bit.  That scared me.  But, she was convinced it was gout.  When the tests came back with negative for gout and very positive for RA, I fell apart.  I had no idea what the diagnosis meant or was.  I remembered what she had said about I didn't want that for me.  
     I had a diagnosis.  That's all I knew.  I had no idea what it meant, or what it would mean in the coming future for me and my family either.  I was so upset.  I already had been dealing with diabetes type 2 since age thirty, hashimoto's disease, which is Thyroid disease, since late twenties and polycistic ovarian syndrome as well.  Now, I had a new Auto immune disease to add to my list.  A scary one with no answers and no one who seemed to know how to help me either.  


Welcome to my blog.  I will lay this out in pieces  and keep it going as often as able to keep updates current and i welcome comments as well.