Congratulations you’re sick…

I saw a news story that Ted Cruz (Senator from Texas) met a woman living with Multiple Sclerosis.  In his attempt relate to her, he congratulated her on her struggle living with MS.  Congratulated. Her. For. Living. With. MS.  Now don’t get me wrong, I am pretty sure he meant he admired her strength for dealing with the disease.  At least, I hope that is what he meant.  Could you imagine someone congratulating you on living with a chronic disease?  I could see it now….getting those Congratulations banners and balloons from a party store to hang in the living room of a person diagnosed with MS, RA, Lupus, Diabetes, etc.  After 25 years you’d get a gold watch or gold cane! Could you imagine?

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on your chronic illness!!!

 

I’m not slamming Senator Cruz, but I think he is the perfect example of the fact that people don’t know how to speak to someone living with chronic illness.  I mean, I’ve had people tell me they admire me, pity me, don’t believe me (because I don’t look sick), and my favorite, “I think I have that, too.”  Honestly, I the thing most people living with chronic illness want to hear is “How are you?” and then the person asking actually listens to our answer (without judgment).

Today my hand decided to try to make life difficult with serious pain and swelling.  By the end of the work day, I couldn’t close my hand around a pen to sign my name.  I literally could not do it.  It was locked and not moving.  I panicked and asked the guy next to me to sign my name. I was morti I then sat through a meeting with ice on my hand to try to get the swelling down before driving home.  It’s a struggle that I really don’t want to be admired for or God forbid pitied for.  I don’t ask for help for so people can feel sorry for me.  I ask so I can get things done quickly and move on.  It’s a struggle that I just want people to accept as being a part of who I am.  It doesn’t define me, but it is something I can’t ignore. I can’t make it go away, no matter how much I hate it.  I can only accept  it as one part of me and keep trying to move forward.  No congratulations needed.

Flu or not the flu, that is the question…

My fibromyalgia has been kicking my butt lately.  Lots of achiness, pain and overwhelming fatigue.

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Photo Credit: Holly Hoffmeister Toulouse via The Mighty

The other evening, I was lying on the sofa feeling lousy when I got a text.  It was my neighbor asking me to come outside to see her new car.  I went to stand up and was hit by a wave of “OUCH”.  I told her I was in too much pain and would check it out the following day.  About an hour later, I struggled walking up the stairs to use the bathroom.  I had to crawl up the last few steps.  It was time for my medication, so I took it and hoped for relief.  Unfortunately, I didn’t take it with food and got really nauseous.  I literally poured myself into bed.  The nausea woke me up around midnight. I stumbled into the bathroom and noticed my face was seriously flushed.  I grabbed the thermometer and to my utter shock, I had a 102° fever!  I was sick!  I had no idea!  The body aches, fever and chills lasted for days.   I’m still not sure if it was a stomach virus or the actual flu.  I had symptoms of both.  It delayed biologic injection by a week (2nd time that has happened due to being sick this winter).  I was out of work for days and don’t think I have slept that much in years.  It really knocked me off my feet…..but for the first 5 or 6 hours, I just assumed one of my diseases was flaring.  I was dumbstruck that I didn’t realize I was pretty ill.  It made me wonder if people who don’t live with chronic illness ever “not realize” they have the flu?  Or has brain fog taken away my perspective when it comes to my body?

One of the main symptoms of fibromyalgia is musculoskeletal pain and fatigue.  The flu causes similar discomfort.  Having both at the same time is akin to having a tractor trailer run you over, then it backs up to finish the job.  It was hideous, but I’m lucky mine passed relatively quickly.  Now I am back to just feeling regular fibromyalgia pain, along with the joint pain from autoimmune arthritis…. lucky, lucky me.

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Photo Credit: Dear Fibromyalgia

 

My dog is a “spoonie” too (version 2)

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 physical limitations. Dogs need to be exercised, bathed, and groomed and honestly, I have a hard enough time doing that stuff for myself. Instead I had two cats and I adored them, but in the back of my mind, I have always been a dog person. So I decided to do some research.  I spent almost a year researching dozens of breeds to find the best fit for me. I finally decided on a Cavalier King Charles Spaniel because that type of dog seemed to fit my lifestyle and my ability level. I noted there were hereditary illnesses with the breed, but having 8 dogs prior and watching my mom manage their illnesses, I figured that I could handle whatever was ahead. I even took out pet insurance to err on the side of caution.  I thought I did everything right…

To see the full article, please go to the click this link for the CreakyJoints website.

A burned down house…I don’t think so…

I have always avoided politics on my blog because, honestly, I just don’t feel the need to debate my ideals.  I hold no contempt for the views of others that don’t match my own.  I may not understand the views of others, but I respect their choice.  Today, I’m going to talk about a politician because what is going on in Washington is going to directly affect my life and the lives of millions living with chronic illness.

Pennsylvania Senator Pat Toomey has been interviewing the Human Health and Services secretary nominee Congressman Tom Price.  They were discussing that Pennsylvanians who purchased insurance through the Affordable Care Act only had one choice of a provider.  He then goes on to discuss pre-existing conditions.  I’m going to copy/paste the exact transcript from phillymag.com to make sure I get it right.

Senator Toomey says:

“When we talk about repeal, sometimes I hear people say we’ve got to keep coverage of pre-existing conditions. When I hear that, I think we are missing something,” Toomey goes on to say. “There’s obviously a number of Americans who suffer from chronic, expensive health care needs. They have had these conditions all their lives or some other period of time. For many of them, the proper care for these conditions is unaffordable.

“I think we agree that we want to make sure those people get the health care they need. One way to force it is to force insurance companies to provide health insurance coverage as soon as they show up, regardless of what condition they have, which is kind of like asking the property casualty company to rebuild the house after it has burned down. ”  (Link here: http://bit.ly/2j9zXcc)maxresdefault

Wait…..what????  Did my senator just compare my chronically ill body with a burned down house?  Why yes, he did!  Wow.  Is my body is similar to a burned down house?  A worthless pile of rubble??  An eye sore? A useless entity that must be “rebuilt”?  Now to be fair, he went on questioning how to provide affordable insurance to people with pre-existing conditions.  His interviewee, Congressman Price, never really responded that there was an affordable means to accomplish this. His lack of response scares me more than Toomey’s comments, but I digress.  Don’t we all wish our job interviews allowed us to provide incomplete answers and still get the job???  I also can’t tell if Toomey is for protecting people with pre-existing conditions or not, because honestly, he didn’t push for a response.

Later on, (after people took offense to Toomey’s  ill-spoken terminology) his spokesperson said the analogy of a “burned down house” was used to describe how insurance markets work and the increasingly high prices of healthcare.  Well, I’m sorry but Senator Toomey  didn’t say INSURANCE markets were like a burned down house that needs to be rebuilt.  He said that people who get insurance, regardless of what condition they have, are like a burned down house.  Just another way of blaming the sick person for being sick instead of blaming the system for making a fortune off of the pain and suffering of millions. By the way, don’t we have insurance to rebuild our homes in the case of fire??  Isn’t that what insurance is supposed to do??  Isn’t that why we have it?

Well, Senator Toomey, you think I am a burned down house, well let me tell you what this burned down house can do.   I am a speech-language pathologist who works both a full and part-time job to make ends meet.   I also work full-time in the summer to help provide extra for my family when most teachers are off from work.  I volunteer by advocating for both patients and speech-language pathologists in my “free time”?   I am a well-educated, employed, law abiding, tax-paying, independent woman.  I’m not worthless.  I do not need to be rebuilt.  I am a person living with disabling diseases who strives daily not to become disabled.  I want to be a productive working citizen.  I want a career.  I want to live my life to the fullest. I want to receive a treatment that makes my pain manageable enough to keep doing these things.  But mostly, I want to know that I can’t be dropped from insurance or charged an exorbitant fee that I am unable to afford, then left to suffer while my diseases progress and disable me completely.

As a resident of Pennsylvania, I have twice been to Senator Toomey’s Capitol Hill office in Washington DC.  The first time I visited was in 2013.  I was representing my state for the American College of Rheumatology (ACR) .  I met with one his liaisons and was asking for Senator Toomey’s help to regulate the cost of Tier III drugs set by insurance companies.  Some of these drugs, like the one I take, cost $8,000 and higher and are thus unaffordable to many people who may benefit from the medication.  Without these drugs, many people do become disabled.  His representative looked at me and said, “I’m sorry, but there just aren’t enough of “you people” for Senator Toomey to get involved in this fight.”  In other words, I wasn’t worth it nor were others like me living with chronic illness.  Medication and insurance costs have spiraled out of control, and we the patients, have paid dearly with both our money and our bodies.  At the same time, insurance and pharmaceutical companies continue to make profits, while patients and doctors go bankrupt.  Don’t get me wrong, I know that we need the insurance companies to insure us and we need pharmaceutical companies to develop drugs for us. What we don’t need is to be bankrupted for being sick.

I did not ask to live the chronic life, but I plan to live it well.  I will not sit idly by as the political and corporate worlds try to dictate what is best for me.  I may be one small voice, but it will be heard.  Why?  Because I am NOT a burned down house.

Let your voice be heard.  Contact your representatives to make sure they hear what real constituents want and need in terms of health care.  Your needs may differ from mine, but it’s time to stop Washington from making decisions for us and start making decisions with us.

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My dog is a #spoonie, too.

I always write about myself as a person living with Chronic Illness, a #spoonie,  but today I am going in another direction. My beautiful dog, Georgia Grace is a Cavalier King Charles Spaniel also lives with debilitating chronic illnesses.

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Georgia Grace, age 7

This breed is very delicate from years of puppy mills breeding unhealthy dogs together. Georgia suffers from Syringomyelia (also a human condition), hip dysplasia, luxating patellas (her knee caps move), arthritis (a lot like her mom), chronic dry eye syndrome (she no longer makes tears), chronic ear infections (she rubs her head so much from Syringomyelia she causes eye and ear infections), and was just recently diagnosed with a heart murmur. Her heart diagnosis at age 7.5 devastated me.  Living with Syringomyelia for 5 years has already been such a challenge.  My dog is truly a #spoonie. If you are interested in getting a Cavalier King Charles Spaniel, please do your due diligence and learn about the health issues. She currently takes 15 pills, 2 chewables and eye drops each and every day to control her pain from syringomyelia and to keep her eyes lubricated.

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Georgia’s weekly medication (pills only).

She also gets acupuncture, laser treatments, and takes canine cannaboids (https://canna-pet.com/testimonial/georgia/) all provide relief from her painful condition.  I spend a small fortune monthly on this dog.  So much so that I need to work a part-time job in addition to my full-time job.  That is difficult for me because of my own chronic illnesses.

It’s not easy taking care of her, but she is worth it. I wouldn’t trade my beautiful girl for the world. I see how popular the Cavalier breed is becoming and it makes me nervous.  Families love these sweet, smart, and adorable dogs.  Unfortunately, their health issues are not widely known and many of these dogs are given up because families can’t afford the medical costs.  To get a healthy cavalier, you need to find a breeder that does both heart testing AND MRI testing to prevent (or try to prevent) diseases like Mitral Valve Disease an Syringomyelia from occurring.  Investing in a healthy dog, can help reduce the medical costs in the future.  These diseases cut the lives of these beautiful animals very short.  Living with my own chronic illness has made me hyper aware of Georgia’s levels of pain and her need for medical care.  I probably go overboard, but again, I promised to provide her with a happy and healthy life.  She may not always be pain free, but I do my best to make sure she is as comfortable as possible.  When I can no longer control her pain, it will be time to say goodbye.  I hope that is a date far in the future.

Here she is getting acupuncture.  It is our miracle and our holistic vet is our Earth angel. Our regular vets have been a great source of support.  She also sees a neurologist and will begin seeing a cardiologist soon.

I try to provide Georgia with a happy and normal life.  Here are some favorite clips of my beautiful, funny girl.  She is the epitome of “but you don’t look sick”.  This dog lives with diseases that would destroy most people, yet she never complains and is a ball of pure love.

And every once in a while, she does her best Jon Snow impression (Game of Thrones):

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Winter is coming!

My Georgia makes me laugh.

No animal should suffer like Cavalier King Charles Spaniels do.  Please think twice about purchasing from puppy mills and backyard breeders.  Investing in a healthy puppy may be pricy BUT it may save you a fortune of care during the life of the dog.  Adopting an older dog with health issues can be a challenge, but I’ve never met a cavalier owner who regretted adopting their pet.  I thought I did everything right, but sadly, I ended up with a “lemon”.  Georgia, however, is the sweetest lemon ever created and together, we’ll keep making lemonade.

If you want to learn more about Cavaliers go to  http://cavalierhealth.org.  They are a fantastic source of information.

** Click on highlighted words to learn more about Syringomyelia and heart disease in cavaliers.

Goodbye to you…

2016 has not been my best year.  Just a few highlights:

  1. Dad had a stroke (he is thankfully doing well now)
  2. I was in a car accident in which my car was totaled and my neck was injured (lucky I wasn’t more seriously injured, but it really rocked my world for a while)
  3. I had to put my beloved 13 year old cat to sleep (See previous post Goodbye my Queen)
  4. My 5th biologic drug failed and I had some of the worst flares I’ve had in 9 years.
  5. My beautiful Cavalier King Charles Spaniel has been diagnosed with a heart murmur (heart disease is the #1 killer of these precious dogs and she is already battling syringomyelia, hip dysplasia, arthritis, chronic dry eye, and now a heart murmur).
  6. Spent the holiday  with a sinus infection AND the stomach flu and could not begin my monthly doses of my new biologic on time. (just my luck)

Seriously, 2016 can’t end fast enough (in my humble opinion).

Through all of this, I always try to remain positive.  Granted, I had many mini-breakdowns along the way but I always try to remember things could always be worse.

I’m not big on resolutions, but now I have to get Georgia on a “heart-healthy diet”, so I figure I should do the same.  I’ve been on prednisone for almost a year and the weight gain has been significant.  A failing drug made it so hard for me to do daily living tasks like cooking and cleaning.  Take out is way easier when you can’t slice ingredients or wash dishes.  Exercise on swollen joints after working all day, just didn’t happen.  I couldn’t really control that, but now that prednisone and a failing biologic are in the past, it’s time to take control back.  I’ve let my health get away from me by focusing on all the negative things that happened throughout 2016.  In 2017, I’m planning a healthier me which hopefully will make a happier me.

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#spoonies in parkas

Thank you for all of your support this past year.  I wish you and your families a happy and healthy 2017.  Due to the stomach bug, I’ll spend New Year’s Eve with my #spoonie dog, Georgia and my kittens, Milo and Jax on my couch.  The kittens will never replace my dear Lola, but they are filling that hole in my heart.  They are pretty cute, too.

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The “terror” twins Milo and Jaxson

 

It is not the NYE I had planned, but like always, I know it could be worse.  So I’ll remain eternally optimistic that tomorrow will be a better day.  Happy New Year my #spoonie friends!

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My chronic life…

IFAA, the non-profit I cofounded in 2013 recently shared this meme on their Facebook page.

 

Of course I have thought these things, but to see it in print, makes quite an impact.  This meme is my life.  Today, I was unable to open a drink because I wrote Christmas cards last night.  I didn’t do too much yesterday because I knew I needed to do laundry today.  Carrying multiple loads of laundry up and down two flights of stairs is not easy for me.  Meeting up with friends requires resting prior and after the get together. I barely make plans on the weekend because work is so draining.  I hate it but after so many years, I’m used to it.  I’m also used to feeling lazy, although I know it’s not laziness, it’s just my life in chronic pain.

This past month or so has been rough.  A major flare has limited my physical and emotional abilities.  How did I cope?  I bought a ton of clothes.  If I feel horrible on the inside, I’ll make damn sure my outside looks pretty.  Ridiculous, I know….but coping with this illness is so difficult at times.  I needed some pretty clothes to feel better or at least I thought I did.  My bank account would disagree.  It wasn’t until a person I know came over to me and said, ‘How are you?’ (she also has RA).  It took me a second to realize it wasn’t a casual greeting.  Most of the time I say, I’m hanging in there, or I’m okay.  All I could muster on that day was “I’m not good” and “It’s been hard lately”.  Saying it out loud to someone who “gets it”….is such a relief.  She didn’t offer me suggestions, didn’t offer to take care of stuff for me.  She just listened.  Don’t get me wrong.  Many people ask how I am or offer help because I am really open about my disease.  I appreciate it so much, but they don’t get it and honestly, I’m happy for them that they don’t.  I wouldn’t wish this chronic life on anyone.  I value my friendships and go through times when I feel like a horrible friend because I just don’t have the energy to be a person some days.

I keep seeing lists on social media describing how to treat people living with chronic illness.  There are some great lists out there, but I decided to make my own.  Here it goes:

  1.  I’m a person with a disability but I am not disabled.  What does that mean?  Basically it means things are difficult for me if it requires walking or using my hands.  Daily chores listed in the meme above are not simple.  Trips to the supermarket for forgotten items don’t happen in my house.  My basement looks like an Amazon warehouse because I order almost everything I use in my house online and my hands hurt too much to break down the boxes.  I need people in my life who respect that I have limitations physically but understand that I’m not totally helpless.
  2. If I ask for help, I am desperate.  I’m notorious for not asking for help.  I admit it, I’m stubborn that way BUT it’s a rare occasion that I am desperate.  When I am truly in need of help I will ask.
  3. I’m no longer able to be spur of the moment.  If you want me to meet up with you, you have to give me more than a few minutes notice.  I know things pop up, and I am okay that I can’t make it.  If I am going out at night, I need to rest during the day.  Give me enough notice, and I won’t go to the store on my way home from work or take the dog on a long walk.  If I do that stuff, there is no way I can go out in the evening.  Don’t stop calling for those last minute get-togethers, just be aware that I will probably say no.
  4. Don’t be offended if I am not interested in cures or remedies.  I’ve literally tried them all.  When I say that I tried a gluten free diet and I didn’t see a significant improvement, I’m told “you probably didn’t do it long enough”.  I’ve done every shake, cleanse, supplement, diet and therapy known to mankind and you know what??  None of it made a significant impact (well, I do swear by essential oils) for me to continue on with it.  Being chronically sick is exhausting.  Treatments, diets, shakes, etc. are expensive.  Diets especially require me to cook.  I can barely cut my food when someone else makes it for me.  Slicing and dicing food to cook….ain’t gonna happen if I want to use my hands the following day.
  5. Expect me to limp, wear compression gloves, braces, and use a cane from time to time.  My body is attacking the lining of my joints.  I have multiple joints that are swollen and hot daily.  I admit there are days when I am limping and I don’t even realize it.  To me, it’s normal.
  6. If you ask me to meet you in the morning, don’t expect me to be on time.  It takes me up to 1.5 hours to stand up after sleeping all night.  My body just can’t move in the morning.  My back literally locks up.  It gets better as the day goes on, but early mornings are really difficult for me.  It’s actually a real symptom of my disease.  I hate it.
  7. Don’t pity me.  This is my life.  Not one I would have chosen, but I think I am making it a good one.  Living with a disability stinks but it isn’t the end of the world, it’s just another way of living in the world.  Empathize with me, but don’t feel sorry for me.
  8. Don’t forget about me.  Life gets busy.   A simple text or call letting me know you care how I am doing means a lot.  Fill me in on your life.  Just because my life is limited at times, doesn’t mean I don’t like hearing about your life.

I wrote this from a personal perspective, but I am pretty certain that people living with chronic illness can relate.  Now I’m off to finish taking laundry upstairs.  I have to rest after each trip I make to and from the basement.  I’m still not desperate enough to ask for help….but I’m getting there.

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‘Tis the Season

Christmas decorating.  I used to love it.  Granted, as a child, it was wonderful to come home from school and see the house bedazzled in red and white with a beautifully decorated tree in the front window.  As an adult, I always enjoyed my own holiday decorating.  I inherited my uncles Christmas village, and took pride displaying it for all to see.  I always invited friends/family over to walk through my neighborhood to see the Christmas displays and lights.  I had my own traditions and they made me happy.

The past few years, I’ve struggled with decorating and have cut way back.  I stopped putting up my Christmas Tree and inside decorations, but still lit up the outside of my home to be festive (and to keep up with my fellow Grizwolds in the neighborhood).  This year, I decided to go big.  Decorating inside and out.  I had a plan.  Thirty minutes a day of all out decorating even on a work day.  I could handle that!  Right??!!

Well, I was wrong…..I couldn’t handle it.  After about a week of following my plan, dragging boxes out of the basement and garage, standing out in the cold stringing lights, and I’m down for the count.  My hands swelled so much they began to bruise img_0606.  Pain extended from my fingers to my shoulders.  My ankles to my hips….and of course, my lower back didn’t want to be left out.

Two weeks later, and I’m still flaring.  I’m on a low dose of prednisone until my next biologic injection.  It seems my body has to get used to taking a biologic drug on a monthly basis. The 5 week loading dose of the medication made me feel so good, I thought I was Wonder Woman!!  img_0634        Apparently, I’m not.  Now I need to see if my body can bounce back.  I need to see if this new biologic drug can control my disease.  I need to see something positive to stay on this course.  It’s scary, but I live in the chronic illness world.  I have so many friends who are having much more difficult times with their health.  I know in many ways that I am lucky and things could always be so much worse and I refuse to let my diseases drag me down any lower.  So I am going to focus on the fact that my house is decorated and twinkly.untitled-2

My shopping is done.  My tree is up and my kittens haven’t knocked it over yet (I’d cross my fingers if I could 😂).

I may hurt too much to be joyful, but I’m not going down with out a fight.   I’ll muster up some happy and keep focusing on a better tomorrow.

 

 

It could be…

Every year, I take my dog to see Santa Claus.  Not just because I spoil her rotten, but my beautiful Georgia wasn’t supposed to live past the age of 3 (she is now 7.5 years-old).  She has a debilitating and painful condition called Syringomyelia.  Living in pain myself, I vowed to never let her suffer.  It took about 6 months to get the condition under control with a combination of Eastern and Western medicines and treatments.  I drive 45-60 minutes each way to take her to acupuncture monthly.  I spend a fortune on treatments that aren’t covered by her insurance.  She eats an organic and grain-free diet.  She takes the most expensive joint and skin supplements because her knee joints are luxating and cause her pain, and her skin is dry due to medication and flakes.  She takes 14 pills a day.  I walk her rain or shine because she needs exercise.  Through the years, we’ve survived horrific flares and medical complications.  I’ve probably shed more tears over her pain than my own.  So that Santa Claus picture we get taken every year symbolizes victory to me.  Another year with my Georgia.  Another victory over SM.

I’ve been fighting Georgia’s disease since 2011.  I’ve been fighting my own disease since 2001.  I don’t take pictures to celebrate another year as a victory because prednisone makes me so bloated that I don’t look like myself.  I do use a combination of Eastern and Western therapies (when I have time to do it).  I make sure my doctor appointments are immediately after work and are located on my way home.  I don’t always have cash for acupuncture treatments, recommended supplements, gym membership because all my extra money goes to Georgia’s care.  My diet most often relies on my energy level and my ability to prepare a meal.  To me, cooking a full meal after working all day is a victory.  Oh, and let’s not forget stress eating because honestly, living in pain sucks and chocolate makes me happy.

I’m not sure why I felt the need to write this all down.  It could be that I am seeing Georgia’s mortality more  clearly the older she gets.  It could be that I am seeing my own.  Could be that I lost another beloved chronically ill pet, and Georgia’s health is now my only focus (beside my own).   It could be that my 5th biologic drug failed me and I’ve lived the past 10 months in constant flare and pain.  It could be that I’m starting over on biologic #6 and I’m scared that it won’t work.  Hell, I might even be scared that it will work for a little while and then fail again.

It could be that focusing on Georgia’s health keeps me from freaking out over my own.  Could be that even though I know my diseases are incurable, I still hold out hope for the cure.