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Wednesday, May 7, 2014

Are You Satisfied With Your Healthcare ?

 I moved !  I moved my healthcare to USC.   Last week I went to USC to see a new doctor for my RA.  It was the best thing I ever did.  I knew for a long time I wasn't getting the best care.  I was getting average to just below average care from my Rheumy.  I was going every three months and getting check ups and it was always the same.  My disease was progressing but my medical care wasn't .  I knew it but I accepted it.  I was to tired, to lazy, too something to make the change.  It meant getting all my records and hauling them over to a new doctor that May or may not be the one for me.  FUCK!!!!!!!

With my disease progressing, time passing and number of pills increasing I felt like I was being sucked down the drain.  What made me choose now to change ?  It's for another post, but the doctor I had betrayed me and I had to move that minute.  I got a referral from my support group that I confounded www.squeakyjoints.com. One of my members (squeakers) told me about USC.  I ran, not walked to them. I got all of my files from my two previous Rheumys.  It took a few hours and a couple phone calls and I got all my files.  Btw we should have all our files organized and all the dates we went to see who and what happened.  We need it for ourselves and disability oh yeah and the brain fog.   No excuses. I deserve the best care in the world.  I need to for me and my family.  I have a life and responsibilities !  It is the only job I can have now.  My job is taking care of me and I wouldn't have gotten a good review this past year.  I now got a promotion the minute I walked through the doors of USC.

My visit was over an hour.  I had to get there early so the doctor could review my records before saw me in the room.  YES. YOU READ IT RIGHT.  he took awesome care of me. I had an extensive physical exam and he spoke to me and answered all my questions.  He was even impressed I had a support group.  He ordered over 14 vials of blood. 18 X-rays and two more out of hospital blood tests. One being VECTRA   If you HanMe gotten it demand it. I will write another post on the technical side of all the tests soon.  My co founder is much better at all that stuff. I am more the emotional mushy one.  I go back to the doctor on exit week.  It's going to be scary visit. It's like being diagnosed all over again. It might turn out that I'm sick. Lol!

Don't let your excuses or RA win and get in the way of your care. Don't let RA win. Bust through your fatigue and excuses and fear and go get what we all deserve.  THE BEST HEALTHCARE WE CAN GET OUT HANDS ON.    Come on people we have even had a friend of mine with RA CLIM MOUNT EVERST.    We can do this together.  Want to join our group press the send button and open your life up to love and support.
You are loved by me.    

Tuesday, January 21, 2014

Forward Motion with Rheumatoid Arthritis: Waiting For Disability

Forward Motion with Rheumatoid Arthritis: Waiting For Disability: FRUSTRATION! I was diagnosed with RA July 27th 2011.  It is now January 21 2014 (My fathers 80th Birthday).  I have not seen a dime since...

Waiting For Disability

FRUSTRATION!

I was diagnosed with RA July 27th 2011.  It is now January 21 2014 (My fathers 80th Birthday).  I have not seen a dime since I was let go because I was sick August 8th 2011 from my job.  I haven't earned a cent.  I haven't contributed financially to my family income in years.  I have spent more money than I can count on medical bills and medicine.  I wait and keep watching my savings account shrink into smaller and smaller.  I am through two appeals and two denials.  I hired a lawyer over a year ago to help with my case.  I am awaiting a hearing date.  I have been waiting since August of 2013...  Hear I sit waiting and watching my hair turn gray.

I first applied for SSDI, which is Disabilty Social Security, not State Disability witch is SSI in September of  2011.  I applied online.  Long and tedious process filling out all the information they request.  If you are disabled how the hell are you supposed to fill out all this paperwork?  It took me two days and a lot of breaks to finish the process.  I was denied three months later.  I gave up.  I didn't appeal.  My whole life at the time was really messed up in a lot of ways.  Financially it was devastating.  I lost my house which I wrote it about in a blog earlier.  My husband had been laid off during the depression of the 2007-?  We were broke and sad.  I didn't have the energy to reapply.  I felt lost.  We were forced to move back to our little starter house we were able to hang on to.  I had a private health insurance policy at the time, barely able to hang on to it but I did.  Things slowly got better and I decided to reapply.

I can't remember the date of the second time I applied.  I did get sent to a SSDI doctor the second time I applied.  I thought WOW!!!  They are taking me serisously!  I waited two months for that appointment.  I remember it like it was yesterday.  I sat in the dank dingy loser type waiting room for my name to be called.  I was put in a room built in the 1960's and a younger type doctor showed up and asked me where it hurt..  poke me .. made me walk, and lift my legs and arms.  He said we are done.. and Good Luck.  I was also sent to a therapist as well.  She asked me my name, if I would call 911 in an emergency, if I could sleep at night.  Nothing about my RA and what it has done to my life. They just asked stupid questions.  I answered honestly.  I was denied two weeks later.  I was told I could work as a 911 dispatcher again.  ( I did this for 12 years) .  I was insulted.  I am SICK!

It angered me.  I am sick.  I am deserving of what I paid into all these years.  It is my money.  How will I feed my family?  How will I pay for my meds?  How will I pay the doctor visits that I already owe money to?  Will these doctors that I owe money to let me come back to see them even if I have a balance?  Its not fair that all these people who get benefits get them and they are not sick.  It makes me sick.  Why do I need a lawyer?  I am really legitimatly sick.  I am to sick to go to yet another appointment.   My doctor told me that SSDI always denies you.  SSDI tries to make you give up and not appeal.  They want you to get frustrated.  They want you to just go away.  I got the name of my lawyer from a good friend that has seen the process and works in the medical field.   Yep I picked a lawyer that is on all the commercials we watch on TV while we feel sick and can't get out of bed.  All that is on TV is lawyer commercials and Biologic commercials showing us that if we take this drug or that drug we can braid our kids hair, or play the piano, or cook a full dinner... the next commercial might show us RA folks having sex with our partners without pain.. Why not..  We can play professional golf too!

I got the lawyer.  I fought back.  I gave everything to the lawyer and walked away.  I had to pay some fees from my doctors that had to fill out letters saying I was sick.  It was several hundred dollars.  I have been waiting and waiting and waiting some more.  What else can I do but wait.  We are good at it right?  We wait for our meds to kick in...  We wait for our flares to ease up.. We wait for the nurse to call our name to be seen by the doctor several times away.  We WAIT... we are good at it.  So this is the perfect process for us.  We are used to being disappointed because the pain doesn't go away, the meds don't always work, the doctors are always running late... Oh and we have bills that we have to pay and they have to wait to.  I know that going to the lawyer is the only way to go here.  I am glad I did it.  That way my brain fog, my flares, my stress, my depression won't get in the way of meeting the deadlines that are put on us from SSDI.  The next thing I need to do is write my local congress person and Senitor whoever they are.  I will do that is week.  Plea my case so they can look into this for me.  I heard its supposed to be a good way the hurry the process work.  I have seen it work.  Why haven't I done it already...  well I don't know.. I just haven't .  I will now that I am ready to face it.  I want to have this process go to the next step so at least I can wait and k;now I have done everything I can do at this point.

I didn't mean this blog to be so real..  but this is real.. our lives are real.  I want to learn more so I can help others like they have they helped me.   My point is... Don't give up because you are not alone in your frustrations.  You are not in alone in being broke financially.  You are not alone in the fact that your partner if you have one has to work 2 or 3 jobs to pay the bills and still living paycheck to paycheck.  You are not alone in the fact tat nobody believes you .  You are not alone in the fact you feel like you are a loser because you can't work.  All those arguments you have with your partner over money and why you can't work.  You have insane thoughts of .."maybe I can go back to work" in your head.  You call your resources from your old life.. maybe they can help.  Maybe you get an interview.. then the night before you flare because you have stressed so hard .  Then you realize.. yeah I can't work anymore...  what was I thinking.  yet another bridge burned after you have to call and cancel your interview.  You feel your old contact put there good name in for this interview and you have let them down...and bridge is burned.  NOT YOUR FAULT...  You are sick .  You can' work anymore .  Taking care of you and all your medical appointments, and your insurance coverage is your full time job.   You have to wade through the maze of SSDI.  This is your new job.  YOU WORK FOR YOURSELF AND YOUR FAMILY to feel better and learn to live with this disease that may some day kill you .

Don't give up .  We can wait .. WE are good at this .  We can fight.  We fight everyday.. We have to fight the system. We fight!  Let's Fight together.  WE can talk about this and all the feelings of fear and being let down...all of it..  hand in hand.  WE CAN DO THIS !

THESE SWEET MOMENTS.  THE ONES WE SHARE WITH ONES WE LOVE MOST.  WE WAIT AND SWEET MOMENTS ARE GOING TO COME.  WE WILL BE OK.

Our claims will get approved.  Stay in top of your congress and and senators.  Stay in touch with the lawyer you hire.  Hire the lawyer that is on TV.. they do win a lot of cases.  Keep fighting with me.. and soon we will have checks coming in.    

I want to post this ..  I haven't spell checked this .. so if you read it before I wake and spell check this my apologies before I fix it.  My night meds are kicking in and my eyes are closing.   Walk with me.. and as always YOU ARE LOVED BY ME.   XOXOXO

Sunday, September 1, 2013

Why is life worth Living when you have RA


I saw this landscape in Carmel on the famous 17 mile drive.  I was in the passenger seat and my friend Julie was driving.  I gasped when I looked out and saw this lone tree along the bluff.  This symbolized RA and life with RA for me.  It gave me a source of great comfort that this Tree was in perfect condition being pounded by the beach waves and harsh wind of the coast.  This tree commanded attention to itself.  This tree was being painted by several people.  I chose this painter above who was alone off on the side, not wanting attention,  to talk to. She was painting the landscape, because it touched her.  She painted ultimately for me, not knowing this at the time.   I now own this painting she is painting in the picture.  It reminds me everyday that no matter who much RA can take.. I can still stand strong, be beautiful, be ALIVE.  
Life with RA is a never ending storm.  The winds can be calm and soothing at times, which don't come often.  The wind and cold and salt water attack every limb right down to the root.  RA acts like a crazy lumber jack.  It tries to break off, tear apart and shred our bodies and mind.  The cliffs around this tree our the people in our life who hold us up.





These are a lot of the reasons that are worth living.  They are my foundation to living a kind and loving life with RA.    I am the main reason my life is worth living.  In my thoughts like I am here
I am looking at life and how beautiful and simple it can be.  RA gifted me the time to think about what it is important.  Time to look at simple creeks,  smelling the roses, putting my feet in the sand, feeling the cold water go over my hands.  I needed help in and out of this chair.  I needed to bundle up so my joints wouldn't flare any longer.  I sat in that chair watching my kids look for rocks in the creek.  If I didn't have RA I would have been running in the water like them.  Instead I had to do it differently.  I sat and absorbed the life and energy around me.  Its a choice we have.  Choose to be miserable and give away our life to the disease or Choose to live with your limitations and learn to enjoy life with them.  Be thankful for the time to spend undistracted from regular busy life.  Enjoy the moments that we are given everyday.  We are in pain... that is true..  but that is just a flaw we have.  It doesn't define who we are.   Never take your life for granted.  Never think its not worth living.  Know that you are a special person who can be happy, and give happiness to others.  Its our duty to give life a chance and fight RA with all we have.  Happiness is possible if you feel you deserve it.  Guess what?  YOU DO DESERVE IT!  


WILL YOU WALK THE PATH TO HAPPINESS?  THE BRIDGE IS CREAKY AND OLD JUST LIKE WHAT WE FEEL LIKE ON A DAILY BASIS...  ITS WORTH TAKING THE STEPS TOWARDS YOUR HAPPINESS....  You need me to hold your hand and walk with you...  Amie...  I will hold your hold hand and we will walk together across this bridge and I will assist you in the process of getting back to your happiness.  Come to me... lets go..     You are loved by me.  

Monday, May 6, 2013

The Flare That Changed My Life Once Again.....

April 1st 2013 I went on a road trip with my kids and BFF Julie.  Hubby had to stay home and work, so I brought Jules so we could all have time together... she is part of our chosen family.  9 days with the kids going to see my oldest Daughter Hannah at College..2000 miles round trip in 9 days...   It was a wonderful trip.  Memories were created that were life lasting.  The last day of the trip April 9 2014 my flare started.

I woke up at our last Hotel Stay...I couldn't get out of bed.  I was shaking from the pain.  I had to pack the car, get the kids packed, eat breakfast, get Bella to the beach because I promised.   Instead I sat in bed and watched my Julie, and my son Max load the car and get everything ready.  I was doing everything I could to get the pain under control  I wrapped my pain patches on my elbows and neck.  I took all my meds.. tried to relax.  I thought I am going to stay here one more night because I can't move.  My Bella who is only 7 gave me some of her muffin from the awful breakfast downstairs.  I needed to gain my sanity.  I wasn't sure what was going on.  My whole body started shutting down.  My estrogen patch failed, I was having stomach problems, pain everywhere.  My emotions were all over the place...and my kids were silently freaking out... I could see it on their faces.  I have never fallen apart in front of them before.

I basically crawled to the car....Meds were kicking in...had to stop at a drug store and pick up pills for my tummy.  I was having the flare from hell.  I got everything under control and rested in the passenger seat for the drive home.  I never drove this trip.  I can't really drive long distances any longer due to RA..even in my fancy car that has all these features I don't know how to use.  I finally get home and straight to bed.

I haven't really left my bed except for doctor appointments.  As I lay here...almost an entire month has passed.  Who? What? Where?  I have no answers except that I have Rheumatoid Arthritis and there isn't an answer as to why I went into flare.  I can't and don't or will ever an answer except that I have incurable disease that chooses to act on its own.  I can only roll with it, and fight it with medication, medidiation, healthy life style, and therapy... both physical and mental.  It seeped into everything in my life and the lives of my family and close friends.  I am still in bed.  I am starting to lose my mind a bit.  I look around my house, and its a fortress, not a home.  Things need to get done.  Things need to get cleaned.  Things need to be cheered up.  I lay here...and well... it all just sits.  It is starting to really get to me.

Yes we are told by all ....who care...  so what...leave it..rest... it will get done when you are better... yeah its all for our own good... and it really is KEY TO REST AND TAKE CARE OF US BEFORE OTHERS.   How is that learned?  I have always learned the hard way.  In recent years at 43, soon to be 44...  I thought...thank gosh...I am finally just learning..and not the hard way anymore... I did a lot of that growing up in my late teens and early twenties..in a bad marriage..that resulted in my most wonderful surprise ...my oldest daughter.  Then I became a single mom for a few years... and finally, finally I met the man I will be with for the rest of our lives.    Hard lessons over... good head on shoulders... Healthy...life is roaring along..... RA Hits ... Life Over...New Life again begins.. Why do I have to relive my early lessons again?  Because RA murders your old life..and new one is given to us.  We don't get to choose...  There isn't an answer ...  It just is.

It has taken shots of cortisone, a medrol steroid pack..and now a constant supply of prednisone for a long while to get me out of this flare.  BTW... forgot to mention...you know that RA ruins your teeth too...   Well...due to my ignorance and huge gigantic fear of dentist....I had three teeth pulled two days ago...  I didn't go to the dentist...Why??  I didn't want to deal with yet another doctor.  I finally did..and found that I have over 13k of dental bills awaiting me.  I paid 1400 to get my bone graphs for my jaw line and future implants to be put in.  They are 4k a piece and I need at least two out of three.

I still have to remember, although I am recovering very slowly...I have to keep my life to a dull roar.  I have to recover even slower than I actually recovered from this flare.  I have to know that the steroids are a mask ... a false sense of feeling healthy.  I have to learn to let others help me more.  I have to take a lot more breaks.. I have to plain old slow down period end of story.  If I do this ... I will have things taken care of in time.. which I have a lot of.  So many subjects I haven't covered.  Relationships...Communication,  Self Love...  hmmmm  WE will get there..  For now... I am laying low and will keep sharing my thoughts..  ( to tired to spell check..so please forgive my errors.)

You are loved by me always.



Tuesday, March 19, 2013

Thanking Methotrexate?

I started this past Sunday Thanking MTX rather than cursing it.  Each week I would struggle with taking my injection.  I would talk myself out of taking it at least a hundred times before I would break down and jab it into my thigh.  Why would something that is supposed to make me feel better be so dam hard to take?  Well ... short answer..  The side effects.  MTX stole a day a week out of my life .  I would sleep and feel like I had a bad case of the 24 hour flu every time.  Its an oxymoron...isn't it?  Its good for you, but it makes you so sick you don't want to take it.  I would come up with every excuse in the book.  I am to tired,  I am to busy, I don't feel well, I just don't want to..were the most common ones.

It occurred to me that I am incredibly lucky to have access to this medication.  I have great medical insurance.  I have a great pharmacy.  I have the money to pay for it.  I was being incredibly irresponsible and selfish.  I am ready to buck up!  I am ready to live up to and take advantage of the gifts that have been sitting in front of me from the first day I was diagnosed.  I am tired of feeling sorry for myself.  I can look at the day I am sick.. as a small investment in my future life ahead.  I choose to invest in myself.  I also know that I will have my weak moments.  I won't feel guilty for hating MTX, but I will choose to acknowledge my hatred and let it go...and choose my health instead.

It is possible to Thank the very things that try and bring you down.  You need to choose to invest in your own future.  Taking this medication is part of a long term investment in the Piscopo Corporation.  The stock is long term and will stay steady even in a long term health down turn.  I am going to keep forging ahead and taking full advantage of this old wise drug.  I will learn to live with it and learn from its wisdom.  I can learn to appreciate MTX.  We might even become great friends some day...  Who knows..

Will you choose to Thank MTX and invest in your own corporation?

You are always loved by me.


Friday, December 28, 2012

Sex and Intimacy with Rheumitoid Arthritis







SEX ?  INTIMACY?   CAN WE HAVE IT WITH OUR NEW SELVES LIVING WITH RA?

YES!    YES!  and YES!

It is a difficult subject to bring up the topic of sex or intimacy without being sick.  I am a Catholic/Italian... I found out babies came from having sex to late...  My surprise is 23 now and a blessing.  Sex and Intimacy in a healthy relationship always takes work, but throw in the pain and depression, and low self esteem with RA...  How is it possible?

It starts by accepting yourself.  Accepting the New You with RA.  You have to know yourself, and express yourself in a new way.  This only comes after mourning your old self without RA...(another topic that will be discussed in another post).  You need to be able to see yourself as worthy and deserving of love... and giving love.   This is a long process for most.  You don't have to wait to have sex or be intimate until you know yourself.  You do have to be willing to get out of bed, move around and develop a new life for yourself.  Starting is the second hardest part...  Being able to talk to your partner about sex, and share intimate feelings with them.  I say it is the second hardest thing because making this life style change is the hardest thing to do.

After you decide you are deserving you can open up with your partner and ask how they are feeling about your sex life(or the lack of).  Its a hard question...but even harder if you have a lack of intimacy in your relationship.  Intimacy is ability to share your feelings..your deepest emotions in a loving environment.  Being able to tell your partner how you feel in every way.  Sharing your joy, fears, and happiness. You have to be able to listen to your partner in the same way without judgement or being judged.  Are you asking what if you don't have that??  It can be achieved in many ways, my suggestion is to start by seeking therapy for both of you and individually...  You can learn to build that trust that is needed to share your feelings.  Are you finding an excuse not seek help?  Is it money?  Is it no insurance? Is it no time? Is it that you are in to much pain?   These are all excuses.  Non of them are valid.  They all get in the way of being able to grow old with your partner.  You need work through the excuses one by one.  Intimacy must exist before sexual joy can occur.  You may fall and stumble along the path...get up and continue... WE are human... we can start again.   I believe you will find even just thinking about the process will make you feel better, it has for me in my journey.

So after you have dusted yourself off, and have gotten up and taken the steps for an intimate relationship... We can now start talking about sex.  Sex is possible even with pain.  You have to explore what is going to be comfortable for each of you... Discussing this is working on intimacy and sex at the same time.  Start slowly...  Your partner may be afraid of physically hurting you... they may not know how to approach touching you anymore.  Intimacy will allow you to explore the ways that will work for both of you.  You can start by just giving yourselves the time and space to approach the subject.  You can just hold hands ... really feel their hands...know every scar, or callas or fingernail...touch and massage within your limits each hand.  You can stop there and then work your way up or down...whichever you prefer in a time you are both comfortable with.  The next time choose touching their face...  feel their eye lids, the shape of their nose and mouth..  I think you catch my drift..  start out small, and keep doing it.  You can describe what you are feeling when touching their face for example.  Tell them what you like about it, or let them tell you what they like about your face...  Again.. you are working on Intimacy and sex at the same time.  Love grows when intimacy and sex is moving in a forward motion.

I have experienced these issues and still work on them daily.  RA takes its toll on all your relationships.  You have to want to work on your life long partnership...if you want to be with this chosen person until death due you part.  I can't imagine living my life without my husband.  I can't even think of the possibility.  RA gave me the gift of realizing that my relationship with my husband is the most important relationship I have, besides the one with my new RA self.  RA gives us the gift of "smelling the roses"  It gives us time to " sit in gratitude" (quote Catherine).  I am not saying having RA is a piece of cake... it most definitely is not.  We have to get out of bed, fight the pain, fight the fatigue... live a life that we have now.  Live it to the fullest with your deserving partner.  I owe that to my husband Jonathan.  He has given me so much love and respect throughout our marriage.  I owe that to myself and our marriage, and our small kids.   Know that you are loved by me.. and know if you have any questions that you want to ask me..  find me in my group or email me or post a comment.  I am a open book.  I will share everything I know.  xoxoxo

To be continued in deeper detail ....  Would you like to know more?  Please tell me so I can share some of what I have learned in therapy to help myself ....and in return maybe I can help you.