Happy Halloween!

12191072_537378523077255_8458934160176260759_nAin’t it the truth??!!  Happy Halloween!

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The 7th time’s Prince Charming??

I recently started my seventh biologic drug.  7th…. S-E-V-E-N-T-H.  I believe there are only 10 biologic drugs (don’t quote me on that).  But I fear I am running out of options.  What is a biologic drug? I’ll let WebMD explain: “Biologics are genetically-engineered proteins derived from human genes. They are designed to inhibit specific components of the immune system that play pivotal roles in fueling inflammation, which is a central feature of rheumatoid arthritis.” These drugs are quite expensive ranging from $1,000-18,000 per month.  Biologic drugs on tiers 1 and 2 did not work well for me.  I never saw any significant relief of symptoms on those drugs.  They did help to reduce some pain, but it was clear my symptoms progressed.  Tier 3 drugs did provide me with more relief but one threw me into anaphylactic shock.  Another was a mini miracle for about 2 years but the swelling was always still significant in most of my joints and I often needed steroids to get me over flares.  Then I transitioned to a ridiculously expensive drug and I did feel really good for a while, but again, the swelling was CRAZY.  Steroids to the rescue once again.

I went to Capitol Hill with the American College of Rheumatology last month (I will post that blog ASAP).  The day after I returned, I had a rheumatology appointment.  My joints were on fire.  Red, swollen, and I was really hurting (walking all over Capitol Hill is exhausting when you aren’t battling RA).  Although I did feel somewhat better some of the time on this drug, the swelling remained a significant issue.  Hands so swollen during the day but I had to type up reports and input data while at work. Basically, my job made it more difficult for me to dress myself and shower….and forget about my hair.  I’m was rocking a ponytail almost daily.  I knew the drug wasn’t meeting all my needs, but changing medications is such an emotional thing for me.  Let me explain why….

I know that I didn’t “fail” the drugs.  I know that the drugs failed me, but I still feel so disappointed.  I try not to hang to much hope on new medications because I know there is no cure, but I always hold out hope that this drug will “do the trick” (honestly, a trick for me at this point is buttoning up a blouse in the morning!  LOL).  Ok, it’s actually pretty sad, not funny, but if I don’t laugh, I’d cry.  My goal isn’t that I can run a marathon or climb Mt. Everest.  My goal of feeling better means I can work, clean my home, do laundry, grocery shop, and generally be a functional person.  It just seems like I am always disappointed and even though I know it is not my fault, I still feel like a failure.

I started my new drug with a lot of doubt and trepidation.  I know people who take this drug and see good results, but I fear having any hope only to be let down again.  After about 2 weeks, I was walking down a LONG hallway at work.  I suddenly realized that I wasn’t in pain in the normal places.  Don’t get me wrong, my legs were fatigued from the long hallway (probably b/c I’m so out of shape from the chronic sore joints), but my ankles weren’t screaming.  My knees didn’t ache and my hip didn’t twinge as I walked.  SHOCKING and SURREAL.  I’ve had some really good days.  So much so that I may have over done it.  Yesterday, I attended a football game right after work.  I was helping with the cheerleaders, so I stood on the track for about an hour after work.  I did sit for a bit, and I felt fine, but I was on my feet most of the day.  After the game, I helped carry pom poms back to the building.  I felt pain while carrying them, but ignored it.  I got home and noticed that my knuckle resembled Jabba the HutIMG_5163-1 and my ankles were mildly swollen.  The worst part was the fatigue in my legs.  It bordered on painful, especially when I climbed the stairs at night.  All these questions rumble through my brain.  Is the drug not working?  Did I do too much because I was finally feeling good?  Who knows.  I certainly don’t.  I enjoy working with the cheerleaders, so if feeling pain later is the cost, I have to be okay with it.

Surprisingly, I woke up with relative ease today.  I only got stuck with my back for about 10 minutes until I was able to stand (it normally takes about 45 minutes-1 hour).  Walking down the steps was painful, but things got better as the day went on.  So the downside of still getting flares of pain and swelling post activity seems to be balanced by the upside of not suffering horribly the following day.  I guess that is a checkmark in the plus column.

My 7th biologic drug may not be my knight in shining armor, saving me from my evil RA after all,  but it’s not a bad first date.  I’m going to try to remain optimistic and appreciate the pain free moments as they come.  I’ll deal with the flares and pain like always and keep on keeping on.

Review: Invigorate Lotion

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I’ve been dying to try a topical pain relieving lotion.  I was thrilled when asked to review Resonant Botanicals lotion Invigorate.  Now I’ve been tempted by many a snake oil salesman before, so I wanted to take this review very seriously.  Invigorate is pricey, retailing between $20 for 2 oz., and $55 for the 8 oz. bottle.  Upon investigating their website, I found that the company offers a “pay it forward” option.  I’ll let their words on their website explain the system:

“How our Pay It Forward program works:

1.  Customers and Friends may contribute to the program through a donation which will be applied to the cost of an Invigorate or Qi of Calm™ two ounce lotion to help us reach those in need.  Resonant Botanicals will cover the shipping and handling costs and provide our product at wholesale cost.

If you are in need, send your mailing address along with your product preference. Once the Program is funded, we will ship it to you at no cost.

2.  Resonant Botanical Customers who have been liberated from prescription opioids through the use of our products can share a two ounce bottle with a friend in need.  Simply leave us feedback and share your success story. Then enter your original order number and we will send them a two ounce lotion.”  (http://resonantbotanicals.com/pay-it-forward/)

Pretty cool, right?!  This pay it forward program sets this company apart in my opinion.  They believe in their product and want people to get it.  I think that is great!

Now, the big question.  Is this product worth it?  Let me tell you about it….

First impression:  Ok.  First impressions are important.  I opened the product and immediately squirted two pumps into my hand.  I liked that the lotion was not greasy.  It was smooth and dried relatively quickly.  Then I smelled it.  It’s not an unpleasant smell, rather it was familiar and I just could not place it. (It drove me nuts!)  I could only describe it as a pleasant-yet-mildly-medicinal smell.  After a few minutes; however, the smell settled to something  light and pleasant.  I just could not place the first impression scent.  I took the product to a friends house and had them try it.  The consensus was it smelled like the old 1970’s and 80’s skin care product Noxema.  Yep!!  That was it, a woodier-citrus scent but somewhat similar!  I should mention, my friends all liked the scent a lot.

Does the lotion work?  Again, I’m always a skeptical reviewer.  I’ve been scammed by so many products in the past that I took this review very seriously.  When I first began using the lotion, my elbows and my feet were really bugging me.  I wasn’t able to sleep one night, so I got up and got the lotion.  Within about 5-10 minutes, the throbbing of the pain subsided.  I began moving my elbow and the pain returned.  So I learned that topically, the lotion did make a difference in numbing the painful joints….which in turn, helped me find comfort enough to sleep, BUT it does not prevent pain in motion.  I should note, that I did not go the the company website prior to using the lotion.  I didn’t want a preconceived notions to ruin my review (I had read a basic bio).  After using the lotion,  I went to the website and read that the product was developed for the inventor’s mother so she could sleep at night.  Well, they did a good job with that!!  The funny thing is that with a name like “Invigorate”, I expected that this product would rev me up, instead once that initial scent settles, it’s actually quite relaxing and calming.  Now it sits by my bedside for nightly use.

What is in the lotion?  Again, I’ll quote from their website, so I don’t mess it up.

“Invigorate starts with an infusion of herbs such as turmeric, valerian, devil’s claw, Manjistha and Arjuna and those are steeped in organic Grape Seed Oil for over six weeks.  Then, the infused herb oil is added to organic Hemp Oil, Hemp Oil Extract, Apricot Kernel Oil, Jojoba Oil, Clove Oil Extract, and Borage Oil, essential oils such as Sandalwood and Rose Otto from the Kazanlak region of Bulgaria, and combined (emulsified) into a truly delightful pain relieving lotion.”   It also has “Bottom notes of Frankincense and Sandalwood allow Lavender, Bergamot, Bulgarian Rose and Orange to dance playfully on top and usher you into preparation for what you are about to experience once you apply Invigorate to a painful area:  relief.”  (http://resonantbotanicals.com/product/invigorate/)

You can tell the essential oils are of a good quality because of the lasting effect and scent. They are also quick to absorb into the skin, which is a huge plus!  When you apply the lotion on your skin there is no burning or heating sensation.  You are impacted more by the relaxing scent, especially when it is combined with heat.

The product also uses MSM (Methyl Sulfonyl Methane), which many of us who live in chronic pain, are familiar with.  I usually take MSM combined with Calcium daily.  I never heard of it in a topical, so I was intrigued.  The site recommends using heat with the lotion, and I have to admit, that is an awesome combination.  You can really smell the essential oils when the products heats.  It’s relaxing.  I used this product on my feet, elbows, back, and knees.  One day in particular, the throbbing of my foot was extreme.  Invigorate really did help when I needed some relief.  I feel like it is a good tool to have in my arsenal.

Pros:

Quick absorption, non-greasy, pleasant light scent (after a few minutes) and does what it says, provides some relief to pain.  The “Pay it forward” program is awesome.

Cons:

Cost, although justifiable with all the quality products like essential oils, can be pricey for someone on a fixed income, but this can be offset by Pay it Forward.  The initial scent is truly invigorating, but it is strong (at first), but it is way better than over the counter products that have an extreme menthol scent.

So do recommend Invigorate lotion?  Yes, I do!  If you are looking for a topical pain relieving product that can help to take the edge off pain, try this product.  I’m glad to have this as a tool for pain relief.  You can find their website here:

http://resonantbotanicals.com

#resbontanicals

 

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RA Blog Week day 4: Hobbies

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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

 

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RA Blog Week Day 3: Partners

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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

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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….

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

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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.

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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.

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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.

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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

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RA Blog Week 2017: Day 1: Mental Health

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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.

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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??

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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.

Goodbye My Queen…

It’s the one year anniversary of losing my beloved Lola. She is one of the inspirations for my name Lolabellaquin. Sadly, only Bella remains and she is not long for this world. Sharing as a way to honor one of the greatest loves of my life. Life is simply better with a pet. I’m certain.

As my Joints Turn

8/13/16:  My final update.  My queen has passed…..

“You might be gone from my sight, but you are never gone from my heart.”

My phone rang at 2:00 am. A vet at the emergency hospital told me that Lola “arrested and passed”. I’m surprised none of you heard my scream as my heart broke in two. I asked if I could go and hold her. I raced to the hospital with tears streaming down my face. When I walked in, they told me that Lola stopped breathing for 2 minutes but had just started again. Her eyes were open and she was drooling. Then she heard me and fighter that she is, sat up for me. It was partly my Lola and partly a zombie Lola. Her poor little body was struggling to breathe. When they initially told me she died, I was heart broken that she did so alone…

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Time to fight….

This is an updated version of my post regarding insurance “I preexist therefore I am…” and a longer version of my “The Mighty” piece : How AHCA, Repeal of ACA Could Affect Me With Preexisting Conditions.  I am reeling over the Senate vote to repeal or replace ObamaCare today.  I firmly believe the law needed improvement, but taking it away will be so very detrimental to many.  These are my thoughts.

I’ve been in a brain freeze for a while now. The recent passing of the AHCA (American Health Care Act) in the House and the Senate’s Better Care Reconciliation Act of 2017 (BCRA) have left me reeling for many reasons.  Just today, Senate Republicans passed the vote to advance to floor debate on their efforts to repeal and replace Obamacare. Vice President Pence had to cast the tie breaking vote. Senator John McCain proposed that Republicans and Democrats come together to make a good law that will solve the problem of many Americans regarding healthcare.  I, like most Americans, are doubtful that will happen and we will once again, have a bill that is one-sided and hated by millions.

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When I expressed concerns regarding healthcare changing, a friend asked why I was worried because I don’t use Obamacare (also known as the Affordable Care Act or ACA) as my insurance. It made me realize that people have no idea what insurance is and how it works. We all think we know how it works, but honestly, the hows and whys are never really looked at in depth unless you need it.

 

I unfortunately need to use my insurance a lot. I will be one of the people placed into the high-risk pools according to the AHCA. The BCRA (in the version released on June 22, 2017) amended this by stating that states cannot pass laws allowing health insurance companies to deny coverage to applicants, including those with preexisting health issues; however, it allows states to offer scaled down insurance plans. This means that insurers are not required to offer “essential health benefits” (EHB) which were put in place by ACA.  There are 10 EHBs:

 

  1. Ambulatory patient services (outpatient care you get without being admitted to a hospital)
  2. Emergency services
  3. Hospitalization (like surgery and overnight stays)
  4. Pregnancy, maternity and newborn care (both before and after birth)
  5. Mental healthand substance use disorder services, including behavioral health treatment (this includes counseling and psychotherapy)
  6. Prescription drugs
  7. Rehabilitative and habilitative services and devices (services and devices to help people with injuries, disabilities, or chronic conditions gain or recover mental and physical skills)
  8. Laboratory services
  9. Preventive and wellness services, including counseling, screenings and vaccines to keep you healthy, and chronic disease management
  10. Pediatric services, including oral and vision care (but adult dental and vision coverage aren’t essential health benefits)

With these benefits eliminated, an insurance company could impose annual caps or a lifetime coverage cap for people who need or want those benefits. Again, I do not currently use the ACA, but the ACA did impact my personal insurance by not allowing a cap on coverage. The AHCA and BCRA allow insurance companies (and yes, that means private insurance, too!) to cap people’s insurance.

 

What does capping insurance mean? Well, say I have a $1,000,000 coverage limit for my lifetime (there could also be yearly caps). Once I meet that limit, I would lose my insurance and have to pay out-of-pocket for everything from that point on. Now, some people wouldn’t worry about reaching that limit, but my current drug is $18,000 per month (in addition to all of my other medication). That drug alone costs my insurance $216,000 a year. I will surpass that million-dollar coverage limit in less than five years with a lifetime cap. I firmly believe this drug is the only reason I am still able to walk and use my hands functionally. I need it to live. I need it to work.

 

As for high-risk pools, it seems the BCRA will not include those, but they will allow states to offer these pared down insurance plans that do not cover essential health benefits. What does that mean? Well, it means that people who want or need to have those EHBs in their insurance will have to pay more for more coverage. Essentially, people with pre-existing conditions will have out-of-pocket costs rise significantly. How much? No one knows exactly.

 

I live with and manage thyroid disease, DSAP (skin disease), fibromyalgia, spondyloarthropathy and high blood pressure. I am not being a drama queen when I say I am petrified. The amount of coverage I require just to function may be more than I can actually afford. Let’s also not forget that no one can predict that they will remain healthy or free from accident/injury throughout their lifetime. Someone may opt for an insurance plan without EHBs and then years later require rehabilitative medicine following a car accident or stroke. How will they afford for expensive therapies if their insurance doesn’t cover it?  Their cost for insurance will be low, but when it doesn’t cover what you need?  Is the low cost worth it?  Someone I loved dearly had bare bones healthcare pre ACA. I remember how thrilled he finally got a job that provided insurance.  He ended up battling cancer. His insurance being minimal covered the bare bones of treatment. Fundraisers helped him make end meet.  The financial stress of cancer combined with the cancer itself, was simply too much. If he had better healthcare, I firmly believe he would have had a better chance to survive.

 

I also think about how many people across this country have preexisting conditions. The threat of higher deductibles and higher prices for coverage causes me to have higher anxiety all the way around. The scariest thing for me is not just the ramifications of this bill passing through the Senate, but that people in my government and country feel it is OK to cause millions of Americans to lose affordable insurance. To classify those with preexisting conditions as if we are simply drains on the healthcare system instead of equals to other tax-paying citizens.  I pay for my insurance so that women can have maternity coverage (even though I do not have children), I pay so people with cancer can receive chemo treatments (even though I do not have cancer), and I also expect my insurance to pay for what I need.  That is how insurance works.

 

I know I am lucky to have insurance. I know my costs are higher than many others in my insurance pool. Should I feel guilty? Should I be grateful and never complain? I know many of my fellow Americans don’t want to pay taxes for insurance that includes someone like me. I have no issue with doing so. I’m happy to pay extra money so my fellow citizens have the medical care they need when they need it. That is what insurance is after all. You pay for coverage you may never use, but when you get sick, it’s there.

 

People don’t seem to understand how important it is to have insurance coverage. Some politicians have made outlandish statements that indicate to me they have no idea what it is like to live with chronic or acute illness. For example: Rep. Raul Labrador (R-Idaho) stated in a town hall, “Nobody dies because they don’t have access to health care.” Um, what? Go ahead and re-read that sentence again. I don’t have statistics on it, but I’m willing to bet that many people in the U.S. die each year because they don’t have health care.

 

In addition to penalizing sick people, there will also be an age tax. It could raise the premiums for older adults to be five times what younger adults are charged. This is all related to insurers being able to charge you more and exclude coverage for preexisting conditions (for up to 18 months) if you have a lapse in health care coverage for more than 63 days. So imagine, you lose your job to layoffs or downsizing and can’t afford to keep up insurance while you job search. You get it back once you get a new job that may or may not pay you less than what you made before, but now you might have to pay more for health insurance? I guess being unlucky is also a preexisting condition.

 

Now in saying all of this, I will admit, ACA needed a lot of work, BUT it was the first move in the right direction.  I feel like politicians are so polarized by their party that they refuse to work together….and Americans with preexisting conditions are the ones paying the price.  I’ve written before in A burned down house…I don’t think so… that I am tired of people making a profit off of my illness.  Drug costs are soaring, malpractice is soaring, while patients are struggling to make ends meet.  The thing that Washington did not take into consideration is that more Americans than expected have medical issues.  The number of sick people who accessed ACA caused insurance companies to go haywire, hence they dropped out of the system.  This left patients with little choice and caused coverage prices to rise steadily.  Instead of working together, Democrats and Republicans have simply stuck to party lines.  There has been no compromise. No working together for the betterment of Americans.

 

pills-and-money-greedAt the root of it all are drug and insurance companies that make millions of dollars off of the illness of others.  Recently big insurance companies like Oscar and Aetna have pulled out of the ACA exchange because it was not profitable enough.  Too many Americans who signed up for ACA were sick and in desperate need of insurance to cover medical costs.  Sadly, many couldn’t maintain insurance because the costs skyrocketed.  See insurance companies love to make money.  They have deals with pharmaceutical companies.  It goes something like this:  Big pharma sets a drug price.  They negotiate with insurance companies on a price and then the offer rebates that lower the costs of those drugs to insurance companies while patients keep paying their high deductibles.  Again….the rich corporations keep getting richer while patients and their families struggle to pay high deductibles for medication that they need.  No one in Congress has been talking about that.  Heck most people have no idea about terms like rebates, adverse selection, step therapy, and moral hazard (click on links to learn more) relate to insurance.  People have no idea that doctors are going out of business due to minimal reimbursements for administering certain drugs and treatments in house.  For example, a rheumatology office can provide IV biologic drugs in their office.  To provide this service, the office must have staff on hand to monitor the infusion treatment.  This job is typically done by a nurse.  Insurance will reimburse a percentage of the drug administered in the office, but will not reimburse the cost of the nurses role in that treatment, the IVs, the materials used etc..  The office can’t provide the drug without staff and supplies, but then can’t pay for the staff  or supplies due to lack of reimbursement from insurance.  This forces doctors to close their infusion rooms and patients must get their treatments at hospitals that charge insurance way more than a small medical practice would.  I guess big business insurance prefers to do business with big business hospitals instead of small business doctor’s offices.

 

The President tweeted recently, “Republicans should just REPEAL failing ObamaCare now & work on a new Healthcare Plan that will start from a clean slate. Dems will join in!”  tt

 

Wow. The leader of our country wants the current law repealed so we can have a “clean slate.” How convenient! If only patients could get a clean slate. Make our diseases go away until we are ready to finally handle it! What a fabulous idea! I can see it now: cancer patients, autoimmune patients and differently abled patients all putting their treatments on hold until Washington D.C. politicians can figure stuff out. That sounds logical! I propose this instead: Patients under ObamaCare go about getting their treatments and not pay anything until our political leaders figure things out! How is that for a clean slate?

 

Whatever side of the aisle you land on, it’s time to take a stand. It’s time to make the healthcare industry and Washington D.C. catch up to the needs of Americans with and without preexisting conditions. It’s time that patients across the country let their voices be heard.

 

Call, text, write, email and visit with your elected officials. Resistbot is one way to turn your texts into faxes that reach officials. Common Cause helps you figure out who your elected officials are. It will take only a few minutes a day to let your voice be heard. If you want affordable healthcare, it’s time to speak up! When President Trump said, “Nobody knew that healthcare could be so complicated,” I responded, “I did!”

Being silent is no longer an option. I preexist; therefore, I am ready to fight for affordable healthcare!

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