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.

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.

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.

What has RA taken from you?

I have recently suffered yet another loss due to RA..   I can't even speak about it yet except in therapy...  I was dx'd a year ago in July.  I had lost a few parts of my life to due to the pain and swelling in my knees and hands.  I didn't know what it was.  I had to slow down, and take a leave of absence from my dispatcher job.  I couldn't walk, or concentrate.  I was a 911 dispatcher.  I had to leave that job ultimately because the pain and process of finding out what was wrong with me was a full time job in itself.  It wasn't easy, as I needed that job.  I was the only income at the time and we were having a hard time paying our electric bill, let alone a mortgage.  After a few months I got dx'd and well...more loss was to come.  ..  Friends, Jobs, Family, Activity, Multi-tasking, Hair, shoes, memory, focus, confidence, self esteem... I lost myself..my healthy self. 

I lost two jobs within a week of my diagnosis.  I couldn't return to dispatching, and my other job decided to let me go because I was sick.  My boss actually said..." My best friends mother lost her life to RA"...  two days later I was laid off, but not before I trained my replacement who was supposed to be my assistant.   Friends I thought I had for a couple of years, left my life because " they couldn't handle me being sick".  "they didn't know how to deal with a sick person".   Some extended family was upset because I couldn't come to family functions any longer.  I was called out on Face Book by one of them.  I used to ride horses for a living and for fun..  that activity was taken away for both reasons.  I used to do 5 things at once, but now I can only remember to do one thing at a time.  I started taking MTX and lost some of my hair.  I had to give up my cute shoes and go to comfy ones.  I can't remember much unless I write it down.  I can't focus as well as I used to.  My mind wanders... I had a strong sense of self...and that was taken away.  I am going through a re-birthing process...by going to Therapy once a week.  My health has gotten worse in the last few weeks and more loss and change is coming or has already arrived. 

Its not all doom and gloom.  I am learning new things about myself and RA today and each day.  There are bright moments in each day...and I am a new journey.  The road is unpaved at the moment, but I expect that I will smooth out the speed bumps one at a time.  Gifts come to me each day, the laughter in my kids, the smile on my husbands face.  My friends who have supported and loved me during this hard time...which will be the rest of my life.  I have learned that self care and self love have become key to my life.  I used to do for others first...but now I put myself first.  I only learned this a few days ago...I mean really learned it.  It took the flare from hell to realize that I have to take care of me, and then others...and in that order.  I haven't hurt anybody's feelings by doing this... they actually all understand.  if they don't understand there is no room in my life for them.  I have made new friends and created a support group called Squeaky Joints.  You can join it ...click the link at the top of my blog page on Face Book.  Its private and full of love and support.  I lean on the lessons I have learned and the ones I am learning right now as I type this to get me through.   What have you lost?  What have you learned?

Know you are loved by me and don't forget to love yourself first.

Have you Traveled with RA?

Coming Home from a vacation... my wheel chair attendant

My Italian Wheel Chair attendant

Traveling with RA... IS POSSIBLE!  Don't let your life go by and stay home because you don't know how to travel with RA...or you are fearful of traveling with RA.  You can travel domestically and Internationally.  I have done both many times.  I have traveled with my friends and family and just with my 9 year old son.  I have traveled with my aging parents and still helped them coordinate their way...because I knew how.  My mom and I both in wheel chairs.. that was a moment for my Mom...she never wanted or expected we would both be disabled.

Buying tickets domestically...   You can buy them online..so you get a cheaper rate.  As soon as you purchase your tickets, call that airlines and tell them you are disabled and request the seating that is reserved for us on the plane.  Its not first class.. but its right behind it.  ..and I happen to know my RABFF got first class seats due to an emergency she had, and Delta gave her those seats.

You don't have to own your own wheel chair to travel.  They have them every airport in the world.  They have attendants that take you everywhere.  They allow your party to travel with you as well.  You are never split apart from your the people you are traveling with.  If you do have your own wheel chair.. it makes things a little easier because you don't have to walk at all...you can just sit and wait at an appointed area for your attendant...  You keep your wheel chair right up until you board..right on to the plane.  When you land they bring you your wheel chair, or have the one you are borrowing for that leg of your trip waiting for you at the gate before you get off the plane.  I have found this is case in Europe and Costa Rica as well.

Buying tickets internationally is a little different.  You book online as well, and then call that airlines to tell them you are disabled and need special seating.  You are accommodated, but the reservation agents are not as "user friendly"  I found that if you are not using a major known airlines.. you need to call a few times to make sure you have accommodations set up for you.  For some reason if you get to the airport and its not clear...they will make sure and help you there.  They will get you a wheel chair, an attendant, and seating you need.

Packing your medications.  Always take your meds on board with you.  Never let them leave your site.  You can get a doctors note for everything you are traveling with.  Syringes, biologics... pain meds...all of it.  Make sure they are in the prescription containers with your name on it.  Place everything in a zip lock bag.. so security and see what it is.  I have never been questioned regarding my meds.  I have traveled extensively throughout the world and have never had a problem.  I have several meds and syringes, and biologics that need to be put on ice.   I bought a container that holds a refrigerator temp for 24 hours for biologics.  It worked great.  I kept it with me in the over head compartment.

What meds do you bring with you?  All of it is my answer to that question.  Have a steroid blast pack just in case you go into flare, if you can take them.  Pain meds, anxiety meds...  bring it all and more.  You can ask your pharmacy for next month supply of meds if you are gone longer than 3 weeks.  Most insurance's allow for that.  You need to give your pharmacy at least a week notice to get those extra meds on hand.  You can't be enough prepared for this.  You need to be diligent and make this a priority.  Some biologics can be shipped internationally to your destination.  Personally I didn't want to risk them getting lost in a foriegn country.  Your meds can exceed the 3 ounce rule from security.  I have also found the airlines allow you to have a little more lea way when it comes to carry on baggage as well. 

Bring handi wipes so you can wipe down your chairs, and airline seats.  We are immune suppressed so we can't be to careful.  There are a lot of germs at the airport and people are sick.  We are already sick so it wouldn't be a bad idea to even wear a surgical mask if you need to.  You can get comfy ones at your local pharmacy store.

Do you have a cane?  Bring it with you and hold on to it while you are in your chair.  Mine breaks down so I can shove it in my purse.  You will need it to help you walk, but I mainly used it to keep people from running into me in busy places.  I wanted to hit people with it sometimes because when you are in a chair, you become invisible.

To sum it up...  Attendants are waiting at each leg of your trip.  They bring you to the correct gate and make sure you don't need anything.   When you arrive at your destination...  They bring you to baggage claim and get your bags for you.  They carry them out to the shuttle or car that is waiting for you.  Everything is easy and painless  The attendants even take you through Star Bucks or Mc Donalds...gift shops... whatever you want.  You just have to ask...and Please ask you deserve to be treated like a human being.  

I am just touching on some basic information.  I will be expanding this blog topic at length over the next few months.   Have any questions.. I know there is a lot more to cover .. Don't hesitate to ask.... drop me an email.

Know you are loved by me.... and hit the road and see the world awaiting you.

Me and my husband at LAX...excuse the travel fashion..

First Video ever posted..excuse the lovely unedited me.

A Flare...

My family and I 2012 

We go along in our lives and RA is always with us.  We have families.  Some of us have been able to work.  We all have had to change the way we live day to day to accommodate RA.  When I say " we" I mean all of us.  Our families, loved ones, friends, co workers, neighbors...even the strangers we run into day to day.  We may drive slower cause our hands hurt.  We slow the other people on the road.  When we shop we push the cart or buggy slower along the isles.  We slow down the folks shopping in a hurry.  Remember we used to be them.  We used to multi-task hundreds of things at once.  We slow down the cashier and the check,out isle because we forgot something and send the bagger to go get it, cause our memory isn't as sharp.  We slow down others behind us waiting, because the milk is to heavy to lift on to the check out roller thingy...  Our loved ones are effected everyday.  We slow them down on a second by second basis to accommodate RA.   We can't do the laundry, so our kids do it, we can't make lunches anymore so our kids do it.  We can't pay the bills online anymore so that's one more thing our husbands or significant others have to do.  Forget the fact that we can't work or contribute financially any longer.  We do all of this to,accommodate RA.    We get flares because all the stress RA builds up in our minds and body and we get up one morning and decide we can be normal.   We make breakfast and make the lunches.  We take extra pain meds to drive normal and get our stuff done with minimal pain. We go shopping perhaps, or take a walk, or juggle to many things. We dare to be a reflection of what we used to be in order to enjoy life as we knew it to be. We have all pushed it. We have all grinned and bare to get through an event or party. What people need to be educated on is that when we do this to ourselves we are at huge risk for a flare. I suppose we need to educate ourselves too... Who would risk a flare for a day of over doing it???




We would risk it! YES US THE ONES THAT DON'T LOOK SICK..... This is me a day after I over did it. My feet were so,painful and swollen. I put Lido derm patches on the bottom of them and then taped them...(works great right by the way). I used a tens unit on my knees... Spent the next two days in bed. We feel like a jack hammer has been taken to our joints. We are swollen everywhere, but we have the pictures from our day of fun on our iPad to look at... It is worth it sometimes, but others more often than not it isn't worth it to cause a flare. I am finding the more I live with this disease the less I do to push it. Can you tell when u are flaring?? I am learning...pain is worse, swelling is worse, meds are not working...body temp,is up... Fatigue is much worse.... It's awful...I have been taken to the hospital... Have u?? I say that like its a badge we earn or something..

Amount many things I have learned is.... If you have that blast pack of steroids and you need them...take them. I over did it recently....I had the blast pack...I told myself... I don't need them, but I did....it was like I was trying to,get through the flare without using them...Like it was a badge of courage to not use the help given to me by my Dr. upon request... I did take them after I was gently reminded to by my Julie...She is the Mom that you always wanted and never got ..




It's all worth it!!




It's our job to take care of ourselves so,we don't go into flare and scare our loved ones in the process...make their lives even harder...Not to mention our own... Take it easy, and it will cause less flares, and less stress..

You are all loved by me!!! Even if you over do it ..

A Rheumy Visit

I went to my monthly Rheumy visit last week. I always feel hopeful when I go there Maybe there is cure? Maybe I'm in remission? Maybe? Maybe? Maybe?????? I forget it's just routine for me to visit every month...

In the waiting room I see nothing but elderly people. I don't have gray hair yet or wear pull up pants with elastic waste bands yet. They are perfectly awesome folks. I just don't feel
I belong here. I see the old shoes and look at mine and they are cuter, but still comfy and boring. Where are the people who look like me?

I sit there waiting, the nurse comes in...blood pressure, temp, I take off my shoes my jewelry. I wait for Dr... He is kind and gives me time to ask
Questions and ask about new drugs I have heard of...that could help with side effects. He then gives me an exame he pokes me, squeezes my joints I yell OUCH!!! He says sorry Then he says I'm not getting any better, but worse. The nurse comes in and draws more blood and I wait for my scrips and hobble out to the parking lot.

From the car I make the usual calls... I call my husband.., Mom, Julie and Brigid. I get home and go to bed and pop a pain pill cause I will hurt from the exam that day... I keep going round and round every month. I am positive but sometimes it just sucks. It'd kind of like you go a few days in your week and you don't have to your Methotrexate or your biologic injections. Then that day comes and you are reminded OH CRAP IM SICK!!! I know we daily pills... but we are used to that. It reminds me of Christmas mornings after all the presents are opened and it's over... Every week it's that kind of feeling... Disappointed and tiring.. Do you know what I mean???

Know you are loved by me... We are in this together and you are not alone.