May 4, 2014

Life Isn't A Nursery Rhyme!

I have not posted on my blog in a while as I have been sitting in doctor’s offices/ appointments with Specialists and many, many tests taken, MRIs, CT scans, Echocardiograms, Breathing Tests in that tiny booth for an hour of breathing tests, X-rays, tons and tons of blood work, etc.  Boy, the co- payments for all these were draining my wallet.

The diagnosis is Rheumatoid Arthritis with overlapping Scleroderma! I'm currently on Predisone which is a harsh drug and gives you a Moon Face and a hump at the nape of your neck!  Ugh!  I've been on this drug since February and can't wait to be weened off of it soon. R/A is bad enough but Scleroderma turns your body into stone and can affect all the major internal organs such as the heart, lungs, kidneys, etc.

I complained for 8 long months to my Primary Care doctor that I was in extreme pain and unable to even dress myself or raise my hands above my head.  My hands and feet were swollen really bad.  I also was experiencing difficulty swallowing.  I learned to continue to speak up until my doctor heard my pain loud and clear!  You have to continue to speak up when you have problems and notice changes in your condition, don't feel too self-conscious to speak up during your appointment or even call your doctor or another member of your health care team.

No problem is too small to inquire about, and early treatment for any problem can make the disease more manageable for you and your health care team.

It's understandable that a person with a chronic illness like Rheumatoid Arthritis/Scleroderma would become depressed.  I try hard not to accept depression as a normal consequence of my condition.  If depression makes it hard for you to function well, don't hesitate to ask your health care team for help.

I think it is a must to learn skills like meditation, calming exercises, and relaxation techniques may help you cope with emotional difficulties as well as help relieve pain and fatigue.

If you have problems doing daily activities, from brushing your hair and teeth to driving your car like I was going thru, consult an occupational or physical therapist. They have more helpful hints and devices than you can probably imagine.

Of course, we all resort to our computers to do research as the doctors will not spend the time with you to explain everything.  The clock is ticking in a doctor’s office and they want the next patient in so they can meet their quota for the day to fatten up their bank account.

I live in Florida, so exercising in my community pool turned out to be my best friend, as it hurt too much to continue going to my Silver Sneakers classes three days a week.  It doesn’t hurt to exercise in the water.

If anyone out there is experiencing leg pain, don't forget to put a bar of soap at the foot of your bed under the fitted sheet.  Check it out for yourselves online.  It truly does work and if the pain comes back months later, replace the bar of soap and use the old one in your shower to bath with.

What happened to the Oath all doctors took??????  I had to fight tooth and nail to get a referral to see a Specialist.  Well, I’m on an HMO.  If I were on a PPO I would not need referrals.  But PPOs are expensive.

Since just yesterday before I decided to get back on my blog and write, I was chatting to two friends, one is a lovely blogger friend and the other is my Maid of Honor, both going thru serious medical issues.  Also, I mentioned a year ago, that my son was diagnosed with CML which is Leukemia and the news put me in an emotional state of depression then.  

All mothers will agree, we worry constantly about our children no matter their age.

So, we all need the strength to deal with these chronic diseases and need tons of prayers not only for ourselves but for the people we love and care about.  I strongly believe in the power of prayers!


  1. Advice from experience is some of the best. I hope many that read, whether they respond or not, listen and heed.

    I was very timid about hy hearing problem but fortunately did have a DR who remembered 'THE OATH' and he did the deed for me. But if he had not, I would take this advice to heart and do something. NOT all Dr's remember the reason they entered medicine.

    So if anyone reading Rose and comments has a problem, get in the attack mode to get it done...

    Rose praying for you lady, no one looking at Dec 2013 onthe side bar, would know you have a care in the world...

  2. Bless your heart. You've got such am amazing spirit. I know, from my own life experiences how important attitude is. You have so much on your plate, things that would discourage most people, things that most people would remain depressed about. I so admire you and want you to know how much you inspire me. I have issues to cope with as all of us do, but none as difficult as yours. Thank you for being such an AMAZING YOU. Hugging you across the miles. Hope you don't mind to much. They are pretty tight hugs. :)

  3. Prayers are headed your way. I think it is crucial for you to do meditation, calming exercises, and utilize relaxation techniques to help you cope with all of this. I know the pain you endure is difficult to deal with, indeed.

  4. Bless your hearts, each and everyone of you.

    Thank you for your prayers and hugs which is most needed and appreciated.

    Hugggggggggggggggggggggs, Rose

  5. I'm glad you persevered and got in to see a doctor that found out just what your problems are. You are very blessed to be where you can get that water exercise. Here folks pay some big bucks to us indoor swimming facilities as we really don't get but a few months of nice enough weather for outdoor swimming pools. You will be in my prayers and thoughts.

  6. I'm glad you were able to finally get a diagnosis and a treatment plan. Hope you can wean off the meds soon.

  7. Dear Rose, I am sorry for all you are going through. I believe in the power of prayer too.
    I am happy that you were insistent on being heard. Sometimes it feels as if no one will listen.
    I will keep both you and your son in my prayers.
    Blessings dear. Catherine xo

  8. scleroderma, really serious stuff!! i was tested for that many years ago and for me, the diagnosis was mutiple sclerosis!! it has been a horrible journey for me. i have learned many things, but the most important lesson i learned was that no matter how much you want something, no matter how hard you try and no matter how positive you can't always make your legs work!!

    you are in for the fight of your life. i hope you get the care, love and support you are going to need!! i have been blessed with a wonderful family, i could not have done this without them. especially the hubs!!