What makes me happy….

I’m “dog poor”.  What does the mean?  Well, my dog’s medical issues are so expensive that I have little money left over for myself on payday.  I’m not complaining and I’m not saying this to get sympathy.  Just giving backstory.

I live with an expensive illness.  I take a lot of medication.  Have a lot of copays for doctor appointments, prescriptions, and I really need to budget to make sure I have what I need month to month.  People often recommend I try things like acupuncture, chiropractor, fancy shake diets because they know someone who knows someone who has RA and this treatment helped them.  On one hand, I’m annoyed with offers (after 16 years, it gets tiring), but on the other hand, I truly appreciate their thoughtfulness.  They either heard of or tried something and thought, “Hey, this might help Kelly”.  It’s very kind.  Most of the time, I don’t take up the suggestion because I am “dog poor”, and extra cash is limited.  Now, I fully admit that being dog poor is my choice.  I could have found Georgia another home, I could have chosen to do limited treatments instead of the range we currently do.  I could buy her the cheaper dog food.  I could not buy the pricey supplements. Honestly, I could do a lot of things differently.  I don’t mind this and I definitely don’t resent Georgia because of it.  A cousin recently told my parents that I am “overly obsessed” with my dog.  No kidding!  She has 9 chronic illnesses.  I’d be obsessed with him if he had 9 chronic illnesses!  Honestly, the only downside to taking care of Georgia that I can’t always afford pricey “extra” treatments for myself.  I’m okay with that because if I am being honest, I’m burned on on trying treatments that don’t work.  I’m done every diet on the market, have tried acupuncture, meditation, physical therapy, etc, and have seen small improvements but none big enough to maintain the cost.

One cost I don’t mind incurring monthly is a manicure and/or sometimes a mani/pedi combo.  It’s definitely an expense that I don’t need to have.  People often tell me I should give it up so I can do acupuncture or go out to dinner…..but I don’t.  Why?  Well, let me tell you……

When I look in the mirror all I see is my disease.  My body is changing from autoimmune arthritis and from getting older.  Two years on prednisone and the weight gain is awful.  I lie in bed at night and swear I can feel the bones on my hands and toes moving. Things that were once straight are now crooked.  Joints are red and swollen.  I swear, I no longer have knuckles.  I buy clothes without zippers and buttons now, so nothing is too flattering.  Zippering and buttoning are not always possible.  I wear shoes that try to be cute, but are still orthopedic in nature.  I look in mirror and I don’t see me any more and in many of ways, that is out of my control.  I used to be an active person with an active social life. I admit it gets me down when I think about it.  I always hope that I will feel better and get back to my active life. I make plans for what I am going to do when I feel better…..but that day never comes.  I don’t have the energy.  I ache with pain.  I lost the life I had.  So I’ve learned to compensate and not focus on all I have lost, but try to appreciate my new normal.  It’s not easy.

When I go to the nail salon, no one knows that I have a chronic illness.  I get to relax.  I get to socialize with people around me.  I get to leave with pretty finger nails and toes.  This, I can control.   My hands are so ugly now and my pretty nails may be slapping lipstick on a pig, but it makes me feel better.  It’s my own kind of therapy.

So although people may judge me for what I prioritize in my life, I will keep being true to msyelf.  I will continue to care for my dog, and I will also keep rocking my pretty nails.




Tell me what you do to make you feel better?  I’d love to know.

For those who’ve been rejected…

I honestly don’t know where to start.  I just saw a headline about Aetna Insurance.  Basically, a former medical director, who was also a doctor, admitted under oath that he never read a patient’s chart before denying or approving coverage of treatments.  Instead, he followed what he stated was “Aetna training” in which nurses would read the charts then make recommendations to the doctor.  Don’t get me wrong….I love me some nurses, but I would expect a doctor to make the final review and decision.  A doctor who is informed about the condition and the corresponding treatments.  This doctor admitted he knew very little about the condition and nothing about the treatment that he denied.  This is frightening.  At the end of the day, if the doctor signs his name on the document, it’s his butt on the line, not the nurses.  I’m glad he is being investigated now.  To read the article click here:  Former Aetna Medical Director Admits to Never Reading Patient File


I’ve written many blogs in the past about insurance.  I’ve always felt so blessed to have good insurance.  Just two years ago, my employer switched us from an insurance company I had been with for 23 years to Aetna.  I was scared.  I grew up with Aetna, but change in healthcare when you have a chronic illnesses is scary.  I tried to be proactive to ensure that my Cosentyx (the biologic I was taking at the time) would be covered.  I was assured that it would be.  I was told there would be no problem.  When it came time to refill my prescription, I was denied by Aetna.  I called again and spoke to a customer service representative who tried to tell me the reason for the denial was because their doctors wanted to make sure I was taking the “safest drug possible”.  As if my previous insurance and current rheumatologist allowed me to take a dangerous drug??!!! UGH!   I responded with my knowledge of step therapy, prescription benefit managers, and rebates and that I would not be bullied into going on a less expensive medication OR a biosimilar drug when the drug I had been taking was working for me.  When I finished, the rep was silent.  I had to ask if he was still there.  He replied, “Wow. You know a lot about this.”  I fought for what I needed, got my doctor’s office involved, and still got my drug two weeks late.  Two painful weeks later.  These insurance companies hope that people don’t know a lot about their procedures and policies.  Years ago, I was ignorant regarding step therapy and PBMs and thought that science was the reason that I had to trial and fail certain drugs before being allowed to try a drug on a higher tier.  Uh, nope!  Let me explain how it really works.

Pharmaceutical companies and insurance companies can’t talk to each other.  So an industry called Prescription Benefits Managers  (PBM) came into existence.  PBM’s are the middlemen who go between the insurance companies and the pharmacy companies to negotiate better prices for consumers.  Sounds good, right?  Wrong.  PBMs manufacture nothing, but make a ton of money off of drugs through rebates.  There used to be a lot of PBMs but most have consolidated into larger companies.  The three most popular are CVS Caremark, Express scripts, and OptumRX and they control most of the market.  This is how they do it.

A drug company has a drug that they want to sell for $100.  The PBM will say the price is too high and they won’t put the drug on their formulary unless they drop the price to $80.  That sounds good for the consumer, right?  But wait….The PBM may still reject the price, so the pharma company will then offer a discounted price of $80 and then offer the PBM a rebate of $20.  Suddenly, the PBM will add this to their drug formulary  and the drug can be prescribed by doctors and covered by insurance.  Ironically, the patient still pays the $80 price, even though the PBM is technically getting it for $60.  So the total cost savings is kept from the patient.  The problem with all of this is that there is a lack of transparency over this negotiation process.  For example.  The drug I used to take, Cosentyx is listed at $18,000.  According to step therapy, I needed to fail on Enbrel and Humira and 4 other biologic drugs which are the preferred brand name drugs prior to starting Cosentyx.  These drugs cost less and offer large rebates to PBMs to ensure a higher ranking than Cosentyx.  So the drug that helped control my pain and swelling cost is $18,000/month.  My insurance was billed $12,000/month and my copay was a percentage of that cost.  Does the drug really cost that much??  No one really knows.  Cosentyx is not a preferred drug so to get on a formulary, it has to raise the cost of the drug to pay the PBM a bigger rebate.  So in reality the drug might not actually cost $18,000 but since the PBMs require a large rebate to get a drug on their formulary, pharma companies jack the prices of prescription drugs to make money while paying off the middleman.  There is no transparency.  It’s pretty shady.

So now I’m hearing that in addition to PBMs raising the costs of drugs while claiming to lower them, insurance companies are denying coverage for patients without having a doctor review medical records.  It’s all so sketchy and disheartening.  Our politicians claim we have the “best health care in the world”.   I know we are luckier than most countries but the health care companies that are supposed to be transparent according to the law are simply bilking sick people while lining their pockets.

I went to Capitol Hill with the American College of Rheumatology in September, 2017 to speak to representatives about the lack of transparency of PBMs and the high cost of drugs.  One legislative aide said, ‘a company has the right to make money’ and then  ‘it’s hard to say that step therapy with biologic drugs isn’t right because patients don’t often respond to them the same way”.  I agree in the USA a company has the right to make money, but at what cost??  Is it more “right” to expect patients to live in pain and suffer, like I did for 7 years, until I finally found a drug that finally helped me??  All the while the PBMs are causing drug costs to rise while making millions for doing basically nothing but demanding rebates.

Denying patients with deadly or chronic illnesses the right to try new drugs on the market is so unfair and cruel.  It’s even worse when it’s confirmed  that insurance company doctors are following company protocol when making decisions instead of researching the best outcome & treatments for the patient.  That is even more cruel. So the sick get sicker and the rich get richer. Hmmmmm….Maybe we should start running drug companies the way they run schools.  Schools don’t get full funding unless all their students score proficient on standardized tests.  Maybe drug companies, insurance companies, and PBMs don’t get all their money until they cure all of their patients!!  Wouldn’t that be interesting….

Just say no…

I am still able to work full time.  I feel blessed for many reasons.  First, I love my career as a speech-language pathologist.  Second, I’m lucky to have such good health insurance. Third, I can still physically work.  I admit it is getting harder, and I am beyond hurting at the end of the day, but it is still doable.  In addition to working part time, I also see private clients two nights a week (sometimes turning my day into 12 hours out of the house).  I volunteer for some organizations and activities for my schools.  There are weeks in which I leave at 7:00 am and don’t get home until 7:15 pm or later.  I work extra hours to pay for the dog’s medical needs and I volunteer because I have difficulty saying no to people when they ask me to help.  I guess it’s time I learn.

After going through some recent illnesses, I’ve basically drained all my physical resources.  I’m exhausted and having issues with my joints and breathing.  I’m getting treatments but my energy has dropped to nil.  After talking with my doctor, I realized I have to cut way back.  Reluctantly, I’m resigning from several organizations that I volunteer for and I’m cutting back on anything else that takes extra time and energy I do not have.  I feel terrible guilt, but I just can’t do it anymore.

I so wish I could stop working extra hours, but I see no way to manage Georgia’s needs without extra funds right now.  Maybe I’ll start playing the lottery in my new found free-time.

It’s going to be tough to not say yes anymore.


…..and all I got was a good parking spot.

While shopping, I overheard someone complaining how they needed to park in the handicapped spot at the drug store because they sprained their ankle and it hurt to walk.  A sprained ankle hurts like hell.  I get it.  You see my joints feel like they are sprained and/or broken most of the time.  They swell, ache, and get red hot on a regular basis.  The funny thing is, I lived in this pain for YEARS before I ever thought about getting a handicapped parking spot.  I didn’t want to take a spot away from someone who would need it more than me.  My rheumatologist suggested that I get a placard because I was an itinerant therapist who traveled between 6 schools.  Some days, I had to park 4 or 5 blocks away from the building while carrying all of my materials only to find the janitor was parking his Hummer in the handicapped spot so it wouldn’t get scraped up on the street.  I reluctantly filled out the application and I cried when it arrived in the mail.  I then had to complain to the one school to keep the normally abled janitor from parking in the spot I needed.  My email complaining was forwarded to an entire staff as “Here is a reason why no one should park in the handicapped spots”.  I was gutted that someone  decided to “out” me as a person with an illness who needed an accommodation.  When I spoke to her about it, she left work because she was so devastated that she hurt my feelings.  She went home, as I sat in a back office typing up reports while I cried my eyes out.  I’ve had a serious complex about my parking situations ever since.

A few people, including family members, laughed at me when they found out I had a handicapped parking placard.  I don’t look sick.  I’m not in a wheelchair and I only sporadically use a cane, so in their minds, I am not a valid handicap parking spot user. Then I met people who just assume everyone NOT in a wheelchair is using someone else handicap placard.  It seems everyone who doesn’t use  handicapped parking see themselves as experts on the subject.  I often hear complaints that stores have too many or too few handicapped spots.  I see cars pull into the spots with the blue lines (for people to get out of vans with ramps) without hesitation.  I also see the dirty looks I get as I limp away from my spot.

I recently complained at work about people parking in handicapped spots and ironically the person who parked there, didn’t realize it was handicapped because the plow team didn’t clear the spot and she couldn’t see the blue lines under the snow (this spot doesn’t have a sign in addition to the lines).  Ironically, her car wasn’t the one I was complaining about.  Worst of all, everyone knew I had to be the one who complained because I’m the only staff member who does have a valid handicapped placard.  How funny is it that I felt guilty complaining about people parking in the handicapped spots without valid tags?

I’ve been off my biologic drug for over 3 weeks due to bronchitis, so swelling is out of control.  I was walking out to my car at the end of the work day and was so happy that I didn’t have to walk very far because it hurt so much.  If I have to live with incurable autoimmune diseases that make my joints look like this:




the least I deserve is to have a good parking spot.