RA Blog Week day 4: Hobbies



Hobbies – Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? If you do not have a hobby imagine a great hobby for a person dealing with RA.

Honestly, I used to have more hobbies prior to getting diagnosed.  I used to travel, worked out, spent tons of time at the beach, dinners in the city, and shopping.  My favorite hobby was shopping.  I loved going to malls.  Loved the challenge of finding the best deals.  Loved it all.  Sadly, I haven’t been to a mall in over 3 or maybe 4 years.  Walking in malls is just too difficult when you combine it with carrying bags, trying on clothing, etc.   Plus, the cost of all my medical expenses (and Georgia’s) puts a huge crimp on my ability to spend money.  Now all my funds go to prescriptions, ace bandages, joint braces, pain relieving gels, gadgets, and clothing without buttons and zippers…..and let’s not forget all the complementary therapies like physical therapy, acupuncture, and massage therapy.  It’s really expensive to be sick.

I’m fairly sedentary now and that makes me sad.  Swelling and pain make it too difficult to do anything that requires energy or physical stamina.  My hobbies now include anything I can do from my couch: reading (my kindle is my BFF), blogging, and online shopping.  Every once in a while I do leave the couch to do advocacy work in person, but I’m finding it harder to do that while I am still working full time.

I don’t know what the perfect hobby would be for someone with RA.  Whatever it is, it needs to make you happy.  Live in chronic pain is not fun.  Do things that give you as much bliss as possible.

I’m proud to be a part of the 3rd annual RA Blog week!  Check out today’s other blogs about hobbies here:  http://radiabetes.com/blog_week17/day4.html



RA Blog Week Day 3: Partners


I’m proud to be a part of RA Blog Week 2017.  I’m just returning from three days in Washington DC where I visited members of Congress and Senate to discuss the needs of patients living with Rheumatic diseases.  Needless to say, I’m 100% exhausted today.  Today’s prompt relates to partners:

Partners  – Where would we be without our partners? They are often not just partners but caregivers. Tell your partners story. And if you do not have a partner what will your ideal partner be like, or do you even want one?

I currently don’t have a partner, but I wrote this love letter to my dog Georgia a few months ago.  It was originally found on Creaky Joints.  I’m being somewhat lazy because I had to get cortisone injections in both of my elbows and am switching biologic drugs (for the 7th time).  Because of this, I’m going to reblog a story about my Georgia Grace. At this point, she is my partner in crime, my BFF, and my best friend.  We share the chronic illness journey and although I hate that we both are on this journey, I’m so grateful to have her in my life.

As my Joints Turn

I was excited when CreakyJoints asked me to write about my relationship with my dog.  I thought it would be easy to reflect on our life together, but it wasn’t.  My dog and I have a complicated relationship that was harder to explain than I expected  Not only is she my constant companion and fur baby, Georgia is also a fellow spoonie.

Here is our story:

I’ve been living with multiple chronic illnesses for over 20 years.  My journey into the world of chronic illness life started with Grave’s disease and DSAP (a skin disease) then moved into more painful illnesses of Fibromyalgia and Polyarticular Spondlyoarthropathy.  Through the years I’ve had some relief from various medications, but overall, my pain has been my constant companion since my early 30’s.  I loved animals and always had dogs as a child, but I hesitated to get one as an adult because of my pain and…

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RA Blog Week 2017 Day 2: Tips & Tricks



Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition.

I remember being at one of those home kitchen tools parties years ago and I friend said something about not wanting to buy “gadgets” because that are just junk you don’t need.  I didn’t say anything at the time (while ogling a salad spinner), because everyone around the table pretty much agreed.  It seemed the consensus in the group was that these gadgets were just clutter.  In hindsight, I wish I spoke up because without gadgets, I wouldn’t be able to cook, open things, cut, or do various household tasks independently.  I’m going to post my favorite gadget tips.  I am not endorsing any products.  There are simply items that work for me.  I’m happy to tell you where I purchased these items if you direct message me.

One of my favorite tools is this jar opener.  It opens lidded containers of various sizes so easily.  I’ve tried others, but this one is fool proof.  It hasn’t met a jar or a bottle it couldn’t open.  Honestly, this is my favorite kitchen item.f7efa-2677_product-1.jpg

To shower, I use a shower chair.  Standing while washing/rinsing my hair and shaving my legs is just way too hard after working all day.  This shower chair is a simple fix and makes life a bit easier.  My cats also like to nap on it….


To help with hand swelling, I use compression gloves. I love them and hate the need for them equally.


Cutting can be so hard on my hands.  Especially at Christmas time when I need to wrap presents.  Most of the time, I just use bags to “wrap” presents.  But when I do have to wrap something, I use these adapted scissors.  They require less pressure and thus, my hands don’t hurt as much.


This next tips was an emotional one to get.  I used to work in six elementary schools.  I would drive between buildings throughout the day and often, would have to walk a far distance with heavy bags because there was no parking.  My rheumatologist at the time suggested the parking placard.  I debated for a while until I found out that a janitor at one of the schools was parking in the handicapped spot because he didn’t want his car to get scratched by parking on the street. (GRRRRRRRRRRRR!!!!!!).  I don’t always use my placard but when I grocery shop or have to walk through large buildings it is a life saver.



And finally…..my most favorite gadget is my wine bottle opener.  It is so smooth and simple.  It doesn’t stress my hands and isn’t as pricey as some of the automated devices.


These items may be gadgets that clutter my home, but they do make my life much simpler.  I’ve found that investing in tools that make life simpler is something that works for me….plus, I love to shop.  It’s a win, win!!


I’m honored to be participating in RA blog week for the third year in a row.  Check out all the other blogs posted on this topic (and others, here: http://radiabetes.com/blog_week17/day2.html


RA Blog Week 2017: Day 1: Mental Health


I am proud to be participating in the third annual RA blog week.  Thanks to Rick @ RADiabetes for inviting me to participate.  I look forward to catching up on everyone’s blogs soon.  I am currently attending the American College of Rheumatology’s annual Advocates for Arthritis in Washington DC.  I will do my best to blog daily for RA blog week and so you can follow my journey with advocacy in DC.

Day 1’s Topic:  Mental Health:  How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?

When I first got sick in my early thirties, I went through a serious bout with depression.  It took so very long to get a diagnosis.  I would see doctors with multiple joints inflamed and red, and they would look at me and say “nothing is wrong with you”.  It did make me feel like I was crazy.  When I was finally diagnosed, some medications I was taking made me so labial that I could not function and I even considered ending things.  The pain was so severe.  I felt like my life (as I knew it) was over.  I remember a friend calling and I still swear that call stopped me from doing something drastic.  The next day, I found a psychologist who specialized in chronic illness.  It took about 18 months for me to feel strong enough to end weekly therapy sessions.  In the beginning, I felt like my disease was the end of the world.  Therapy helped me to realize that it isn’t the end of the world, rather it is a different way of living in the world.  I’m not saying that shift in perspective came easily.  It didn’t.  It was a struggle and still is at times.

I had to learn how to be this “new” person who struggled to walk and use her hands but still lived well.  That meant re-evaluating relationships that caused added stress to my already stressful life.  Eliminating social events that were physically draining while finding others that I could actually enjoy.  Most importantly, it meant I had to learn how to deal with my issues and communicate with people instead of allowing my negative thoughts to fester.  The people who appreciated my honestly and really listened are still in my life.  Those that constantly tried to cure me and/or insist that I could still do things if I just tried a little bit harder, are no longer in my life.  I had to learn to put myself first and stepping away from negative relationships was brutal.  It’s an ongoing process to maintain positive mental health.  I still have days where I do break down and I think in some ways that is healthy.  Some days, I need to cry over the fact I have to crawl up my stairs to go to the bathroom because it hurts too much to walk.  Those tears are always so bitter, but releasing those feelings can be healing in the long run.  Bottling stuff up is exhausting.  I don’t always show those emotions to other people, because I don’t want others to feel sorry for me. I am not sure if that is good or bad.  It just is what it is.

Tools that have helped me deal with and maintain positive mental health have been therapy and meditation.  Diet and exercise has also helped me a lot in the past and I know I need to get myself back on track with this.  I definitely eat more unhealthy foods when I am feeling down.

At the end of the day, the best thing you can do is be kind to yourself. I was so determined to “cure” myself early on that I couldn’t appreciate the small successes I was having.  I still have to remind myself how much better I am now that I am on the right medication.  Slowly, I’ve learned to appreciate my chronic life, warts and all.  I don’t LOVE dealing with my chronic illnesses, but it’s the only life I have got and I’m going to make the most out of it.


Follow me this week as I participate in RA Blog week an the ACR’s Advocates for Arthritis Event.

Dear Jimmy Kimmel

I wanted to say “THANK YOU” to Jimmy Kimmel for speaking out against the Graham-Cassidy bill that is attempting to pass in the Senate in the next few days.  Jimmy commented on the fact that people will think he is “politicizing my son’s health problems” but he unapologetically states he is doing just that.  He feels he has to since his son was born with congenital heart disease.  Jimmy saw first hand what happens when families who do not have health insurance are faced with health crisis.  When I first got involved in patient advocacy, I never wanted to be political.  I have very strong political leanings, but was not comfortable debating my beliefs….probably because I lose my temper.  Instead, I respected the opinions of others, but respectfully agreed to disagree.  I soon learned that in the world of chronic illness, I had to speak my mind because politics impacts all of my treatments.  Prime example:  I had to “fail” multiple drugs before I could be approved by my insurance for a biologic drug.  I mistakenly thought that I could only take a biologic drug if my disease got severe enough.  Oh no….it’s not that at all.  Insurance companies don’t want to pay the ridiculous costs of biologic drugs, so they reject coverage of the pricey drugs they deem “less safe” than the cheaper drugs.  I say the insurance company wanted me to take drugs that were less effective in treating my condition because it saved them money.  I lived in severe pain for 7 years waiting for my first biologic drug.  The difference in pain control was immense but I was not allowed what I needed by insurance, which for all intents and purposes, is excellent.  You see the insurance and pharmaceutical industries are huge political backers.  It puts regular people at a disadvantage when we try to get our politicians to listen to what we want instead of what big corporations want.  It also puts doctors at a disadvantage when they can’t recommend treatments they know their patients need but can’t access…..but I digress…

Why am I so concerned when I don’t use ObamaCare and have private insurance coverage? I’m worried because the insurance world isn’t a creative one.  It’s black and white.  It doesn’t re-invent the wheel.  When the government issued insurance goes into effect (like Medicare and Medicaid) private insurance tends to follow.  If the new Graham-Cassidy bill eliminates protection from insurance caps, then it’s probably likely that private insurance will too.  I wrote about this in a previous blog called Time to fight….In that piece, I wrote how insurance caps will devastate people living with chronic illness, especially children.  Once you have reached your cap (yearly or lifetime) that is it.  You are out of coverage and better hope you win the lottery.

The Graham-Cassidy Bill also claims to protect people with pre-existing conditions; however, when you look closely at the bill, you can see that we (those living with chronic illness) are hung out to dry.  NPR pointed this out directly to Senator Cassidy on Twitter.  Seems he doesn’t even know everything that is in his own bill.  The bill says we can’t be denied coverage; however each state can waive consumer protections and Essential Health Benefits (go back and read Time to fight)….which would raise rates for people with pre-existing conditions.  Basically Sen. Cassidy, your mouth is writing checks that your butt might not be able to cash.  It all depends on the state in which a person lives.oops cassidy

No one knows exactly how premiums will go up or down as per disease because it will vary from state to state.   Nothing, however, guarantees people with pre-existing conditions are protected from outrageous surcharges.  We may be offered coverage but at higher costs.  Here is one resource floating around that predicts the costs of pre-existing conditions surcharges per premium.  The last time I checked, I don’t have an extra $25,000 in my bank account to  cover this cost. Do you??


Source:  https://www.americanprogress.org/issues/healthcare/news/2017/09/18/439091/graham-cassidy-aca-repeal-bill-cause-huge-premium-increases-people-pre-existing-conditions/

I feel like NPR did a great breakdown of the Graham-Cassidy Bill that is fairly non-biased.  Check it out for yourself.   Latest GOP Effort To Replace Obamacare Could End Health Care For Millions.

I’ve met Senator Cassidy.  He seems like a intelligent man who’s genuinely interested in figuring out how to improve healthcare; however, I think where he loses his perspective is that 1) he is not in need of health care coverage and 2) he probably wouldn’t have any problem paying for his health care if an issue popped up (God forbid, of course).  I’d love to see a panel made up of politicians, doctors, pharmaceutical reps, researchers, insurance reps, AND PATIENTS who all sit down together to figure out this healthcare issue.  Having all the stake holders at the table….hmmmm….what a concept!!  Come on politicians, other countries have figured out how to provide health care to their citizens, and it’s a fallacy that those countries have sub-par healthcare.  The Graham-Cassidy bill is supposed to lower cost by promoting more competition.  I think those of us living with chronic illness already figured out that competitive health care has NEVER driven healthcare costs down.  Prices continue to skyrocket as corporations get richer while patients get poorer (ok…I’m not sure if that is a word and honestly, I’m too tired to look it up.)

So thanks Jimmy Kimmel.  Lending your voice to this issue does have an impact. Please know that you are now a hero to many living the chronic life.  Now it’s time for the rest of us to also take up the fight.

What can you do?  Call your senators (202) 224-3121 and let them know where you stand.  It’s crucial.  If you don’t know who to call, Common Cause will help you out.   The last bill that went to the Senate floor had only 12% approval nation wide and it didn’t pass through the Senate because three GOP senators stood up for what is right.  The Graham-Cassidy Bill is not what our country needs.  It’s not what people with pre-existing conditions need.  It’s time to fight again.  I head to Washington DC on Sunday to represent my state of Pennsylvania for the American College of Rheumatology.  Stay tuned for my posts.


For those who haven’t seen Jimmy Kimmel this week, enjoy!


Jimmy Kimmel on Bill Cassidy’s Health “Care” Bill


Jimmy Kimmel fights back against Bill Cassidy, Lindsey Graham, & Chris Christie.