JoJoisms

The Chronic Illness Frustration Factor

Written By: JoJoisms - May• 30•16

MadFrustration is one of the key components of chronic illness.  We are frustrated because we are tired and in pain. We are frustrated with doctors who don’t help. We are frustrated that our friends and family don’t understand.  And we are frustrated with the red tape of our health insurance.

The past few months, I haven’t been posting here due to many frustrating factors.  I’ve already explained in my last post about the business and financial issues that took precedence and I touched on the fact that my many (and increasing) owies had made posting weekly on each of my blogs a hardship.  However, this post is about how frustrating chronic illness can be from the stand point of getting anything DONE about it.

So it’s bad enough to have to feel varying degrees of pain all over your body that NEVER goes away, but to have that pain and fatigue get tangled up in the red tape of health insurance is maddening and has used up the remaining few brain cells that hadn’t already run away from home.

It’s taken me months (and three changes to my primary care physician) to be assigned someone who I believe might help.  GPs are just about useless.  I’ve seen many of them in the 35+ yrs I’ve had these symptoms and NOT ONE of them has come close to making a dent in the symptom list. In fact, it grows daily.  Last week, I woke up to pain in my biceps.  Have I been lifting tall buildings in a single dream? A few weeks before that it was my elbows.  You know, the part in between the pointy sticky out bone part and the inside less pointy and sticky out part.  Just to gently touch it sends my pain level to defcon 1.

What was my point?  Until I remember what it was, let me also point out how bad the brain fog is getting lately.  I spent literally 3-5 minutes trying to remember my last name one day. In my defense, I’ve only been married 29 yrs!  The other day I was telling my son (you know, old what’s his name) about my niece.  Her name escaped me at the time and it left no forwarding address.  I said Heather, but I knew that was wrong.  To my credit, her name does begin with the letter H.  Or is it Q?

Oh yes, my point was that all of my GPs had either determined that I was making a mountain out of a pain hill or they had no idea know idea how to help me.  However, they didn’t seem to have any idea who might have any idea so…blah blah blah, rinse and repeat.

So not too long ago (that’s code for I can’t remember if it was a month ago or an hour ago), I was told by my OBGYN that she knew of an Internal Medicine doctor who specializes in chronic illness and female issues (that’s a euphemism for Peri Menopause) who just might be in network if the planets aligned.  Turns out she IS! But before you get too comfortable clapping (should you remember where you keep your hands to do so), let me explain that her first appointment was two months out.

Well, she was willing to make an exception because she had a cancellation and could get me in (not for the new patient appointment, but for pain relief consultation) to see her two weeks out.  I took it.  And I had to postpone it because, as the date approached, my dh informed me that it was the same date as the three day workshop I was to attend for one of our businesses.  Now the frustration shifted from health to finances.  Finances won out.  So the date got pushed out even farther, but by that time it was three weeks closer anyway so…Po-tay-toe/Po-tah-toe.

Meanwhile, back at the hormonal ranch, I’m currently waiting for my pre op appointment to determine if I’m comfortable with the idea of having my left ovary removed.  You see, there is a small solid cyst that has taken up residence on it with delusions of grandeur.  I’ve been told that it is the kind of cyst that has the ability to transform itself into cancer.  Since my ovary is currently (yet figuratively) twiddling it’s thumbs, it’s expendable.

I have more to share about the frustration factor of chronic illness that has plagued me the past few months, but brain fog prevents me from remembering what it is.  Let’s stick a pin in that one for next time, shall we?  

What’s your frustration factor story?  Do tell!  

Free: Family Fun On a Budget over on our Grape Stuff blog!

Written By: JoJoisms - May• 20•16

Family Fun on a Budget CoverOver on my Grape Stuff blog, I have a free eBook with over 50 ideas for activities and events to do with your family for little or no money.

Summer is a grape time to be with family and a good time to begin finding activities you and your family love to do together.  The weather is good enough to do inside and outside activities.

However, this special gift for your family also gives you ideas for winter as well as anything in between.

It’s free!  So download your copy by visiting the Grape Stuff blog post here!

If you liked this post, please share it on social media!  The buttons are below.  And we’d love your feedback so please share your thoughts in a comment!

Here’s what I’ve been up to!

Written By: JoJoisms - May• 10•16

We’ve had a tough couple of years while here in Indiana and my time here has suffered in the transition.  This included the year we inadvertently subscribed to the Catastrophe of the Month Club and this past year and a half where my husband was a casualty of the “Over Qualified” job hunting variety. Due to the fact that I only have two hands and fading brain foggery has set in, I took a month or two (I can’t remember…or count) hiatus from my blogs.

I’m reinstating them post haste, but at a slower interval.  Having to keep up with three blogs, three Facebook fan pages, a teenager who is in his final years of homeschooling, and my ever increasing owies, has given me pause to consider a more realistic approach.  Instead of writing three blogs every week, I’m going to write each blog once a month (on the 10th, 20th, and 30th of each month) and share a link back to that month’s article on each of the other blogs.  Each one of my blogs are related (communication, family issues, and chronic issues) so my readers will get better content that offers more for the families I serve.

This month, Art of Eloquence shared an in-depth article on the value of effective communication that hits home for all of my readers.  While some of you may not give speeches, suffer from shyness, need conflict resolution or debate on a regular basis, you DO communicate with people via email and text.  This article will help you do that with much better precision of language that yields a more positive result.

This month, I’m taking my purple feather quill and doing a critique of an email I just received.  Now, this is not a typical SPAM email from BuyMyStuff @ gmail .com that tells me they know why I’m fat.  This is a serious email from a real person (whose name has been changed for this critique) that made some mistakes I felt you all could learn from.

Continue reading the article here!

Check back on the 20th for a new article on Grape Stuff and on the 30th for a new article on my JoJoisms blog!

Fun with Insomnia

Written By: JoJoisms - Mar• 30•16

Insomnia3For those of you new to JoJoisms.com and ArtofEloquence.com, you may not have seen my videos yet.  Fun With Insomnia is a video I created a while back from several of my Visual JoJoisms.

JoJoisms are my funny and sometimes profound one liners about life, many of which I turned into visual representations, a few of which, I compiled into a video you just HAVE TO SEE!

My JoJoisms are written with the idea that if you have to deal with something, it’s much more fun to make fun of it while doing so!  What say you, my fellow insomniacs?

Dr Me

Written By: JoJoisms - Mar• 23•16

AoEBanner2thumbnail1After moving down to the Indy area, it has become far too long a trip to see my old dr up in NW Indiana.  I don’t miss the 3-4hr wait time, but I do miss having a dr who listens and actually tries to help me using natural remedies.

My new dr apparently only has 10 min on her appointment calendar to deal with patients.  If you happen to have as many symptoms as chronic illness patients have, you will find that 10 minutes isn’t even enough time to tell your dr what those symptoms ARE!  After three appointments, a bit of her attitude, the feeling she thinks I’m making this stuff up and an aversion to anti depressants, I found that we had only covered 1/40th of my issues and I decided to continue to deal with things on my own.

After taking a few weeks to find and compare similar supplements to what I’d been taking before (you know, the stuff that I felt actually worked), I decided to try GNC’s version of the following:

  1. Black Cohosh for my hot flashes
  2. Calcium formula (Calcimate Complete) for my osteoperosis
  3. Ashwaganda and Rhodiola for my adrenal issues and tendency to need mid afternoon naps
  4. Termeric Tea I had to prepare myself for the pain of Fibro, Arthritis and some other nondescript owies
  5. And Luminite, a natual formula of melatonin, magnesium, and other STUFF to help me sleep

It’s been a few weeks and so far, the only stuff that worked tremendously well was the last one for sleep.  I slept only 4-5hrs a night before and after taking it, I was able to sleep 7hrs. Not UNINTERRUPTED, but when you do the addition. Since I don’t have xray vision, I have no idea if the calcium formula is rebuilding my bones, but the other stuff is iffy at best.  I think I feel less pain sometimes, but other times, not so much.  I do feel a bit less sleepy during the day most of the time, but I still need the occasional 10 min power nap.

I’ll give it til the stuff all runs out and see what I want to continue and what I’ll try next.  Til then, I remain your friendly neighborhood peri menopausal, brain-fogged, correspondent with owies and a penchant for more Z’s.

Tips for the Memory Impaired

Written By: JoJoisms - Mar• 16•16

DoohickeyMany chronic illnesses or even other chronic issues can cause brain fog.  If you’re like me, you’ve had a time or two (THOUSAND) when you couldn’t remember what you call something.   

“Hand me that…THING over there.”

“What thing?”

“That BLUE thing.”

“Which blue thing?”

“That light blue thingie that you use when your hair’s wet and you want to…OH, I’LL GET IT!”

If you’ve ever struggled to remember your best friend’s name, what you call pants, or the title of the guy who prescribes your medication, then this post is for you.  Here are some tips for the Memory Impaired.

  1. If you can’t remember your friend’s name, take a page from the Southern Hospitality Committee and call them: Sweetie, Dear, or Honey Lamb.
  2. If you can’t for the life of you think of what you call something you need, use the term: Doohickey, Thing-A-Ma-Jig, Whatchamacallit, Thingie, Thingamabob or Thingamawhatsit.
  3. If you are hard pressed to come up with the term for when 60 seconds, 60 minutes or 24 hours has elapsed, use the term: while or later on. 

I find it helps to find the humor in difficult struggles we go through.  Laughing is so much better than the alternative.  Life with chronic illness can be difficult and stressful, isolating and can even wear you down.  I’ve seen it wear away at people until they question their choices, their lives and even their faith.  But God knows you hurt and He is working in your life to ease the pain and isolation.  I like to think I’m here to help Him with that.  

And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28

Do you have any other tips for the Memory Impaired?  Share your wisdom for the Brain Fogged Masses in a comment here!

What you wouldn’t know if you hadn’t struggled

Written By: JoJoisms - Mar• 09•16

cob web glassesThere are more ways in heaven and earth, Heratio, than are dreamt of in your philosophy…to skin a cat! If you haven’t had the benefit of struggling with health and financial issues for years, you don’t know what you’re missing!  OK, you’re probably happy about that, but really, you’re missing out on some important lessons I’ve learned along the way.  These are things I would never have figured out on my own had I not had a burning desire to continue to do things like…eat and put on my pants (be they one leg at a time or whichever way would give me the end result I needed to go out in public and not be arrested).  It’s okay though.  You don’t have to pray for trials in order to learn these valuable life lessons.  Just twist my right arm a bit and I’ll cry Uncle and share them with you.  (Now that I think of it, please keep the twisting to a minimum. My right arm is still a bit stiff and painful from my seven month bout with Frozen Shoulder. Thanks.)

Let me first preface this blog post by giving you a tip about how to come up with your own “creative” solutions to whatever daily challenges you may have because nobody goes through this life unscathed.  (Actually, I’ve never heard of anyone being scathed.)  To get your creative juices flowing, you first have to start by looking at the problem with rose-colored, webbed glasses.  If you look at your challenges from the perspective you had BEFORE the challenge (the webbing that represents your problems),  you will never see the problem from the perspective you need.  You’ll never see how to fix something until you’ve lived with it broken.  Next, you’ll need to make those glasses rosey.  You’ll need to be able to look for a positive way out.  Lastly, you’ll need to squint your eyes and cock your head sideways.  Don’t worry about that guy across the street; he already thought you were weird because you were a bit overwhelmed this morning when you got dressed and you’re shoes don’t match.

If that doesn’t help, here are some of the things I have figured out along the way.  I pray they ignite a spark of creativity.  By the way, just so you know, creative juices are a result of overwhelm. No, really!  When you are overwhelmed by trials and struggles, your mind turns to mush. From there it’s just a hop, skip and a jump to a liquid state!

What I learned from struggles:

1. To be resourceful: Can’t use your right arm when right handed? Learn to be left handed.  There are more ways to put your bra on than front to back!  Put it around you backwards, clasp it in the front, then turn it around and slide your arms in.  VOILA!

purple cast

2. To be inventive: Can’t afford to buy food this week?  Create a new dish from what’s in your kitchen.  We’ve had pot luck tacos from left over chicken, rice, veggies and a splash of salsa.  Can’t eat certain foods? Create your own dishes!  I can’t eat gluten or dairy so I eat a burger and hold it between two large spinach leaves.  Can’t afford to buy clothes? Create your own style from what’s in your closet: dye them, or cut them up and sew them into something else.  I love purple. I’ve taken old clothes, dyed them purple, cut them up and sewed them together differently in order to make something new.  An old pink shirt someone gave me that was too big became a purple dress that I wore over stretch pants to hide my hind quarters.  I just dyed it purple, took in the sides and shortened the sleeves!

3. To be patient:  Can’t do something you really want this year?  Plan for next year! Most things I couldn’t do or have at one time were available to me later on.  Sometimes they were even better later.  I couldn’t seem to get pregnant after having my daughter in 1990. I thought I was pregnant several times and I had one confirmed miscarriage.  When I was able to have another child, I can tell you he was worth the wait.  He’s incredibly kind, supportive, funny and he loves God.  I couldn’t afford to fly to my parent’s house for our annual Thanksgiving family get together last year, but I can plan to go this year and make it even more special.

4. To be practical: Can’t get something done?  Did you really need to do it anyway? Haven’t you ever had a hard time trying to get something done only to realize that you really didn’t want to do it anyway and were relieved to be able to quit trying?  I once had a deadline for something business related, but I just was stymied at every turn until one day I realized I never really wanted to do it anyway.  It felt good getting that anvil off the ledge above my head.

5. To be grateful: Can’t do X?  Be glad you can still do Y! Look for the blessing. THIS is hard to do sometimes.  It can be difficult to try to find the blessings in some of the trials we go through, but it helps to look.  My husband had been out of work for almost a year. While it’s been scary and frustrating to deal with trying to earn money from home and the disappointments of jobs that have passed him by, it’s a blessing that he’d been home.  It’s hard for me to drive with my left hand still aching from the car accident two yrs ago and my right shoulder which necessitated the physical therapy appointments in the first place.  PLUS as I’m writing this, I’m recovering from Snow Scare.  We just had a close encounter of the 18 wheeler kind!  Yes, driving home from PT and going a mere 1mph to a stop light, we almost slid into an 18 wheeler who was stopped ahead of us.  The slush underneath our tires during the snow storm had tried to persuade our car to continue where no man has been before.  Through my dh’s skill and God’s grace, we stopped just shy of fitting our SUV neatly underneath.  If I had been driving, I’m not sure that would have ended as well.

6. To make lemon-aid out of sour grapes: Can’t be at the family’s Thanksgiving event?  SKYPE!  It’s almost like you’re there!

Big glassesLife is difficult.  Things don’t always go as planned and they rarely go by the book.  Be flexible. Think outside the box and look at life through those rose-colored, webbed glasses until things become clear.  Oh, and don’t forget to cock your head to the side.  In fact, do that now.  No really.  Do it now.  What do you see? Is that a way out you never noticed?  A work around?  An alternative?  A hidden blessing?  A better idea?  If you look at things differently long and hard enough, you just might find your answers hidden there near the three week old left over veggies sprouting mold behind the milk in the fridge.

I’ve been looking for answers for over 35 yrs. I haven’t always found them, but I have found them more often than I thought I would.  Sometimes it’s harder to see them than others, but I keep looking.  What about you?

When Dreams Collide

Written By: JoJoisms - Mar• 02•16

dreamWe interrupt this chronic illness blog for a word from our sponsor: humor.  Something happened recently that I thought you all would get a kick out of because it’s both weird and funny.

So the other night I dreamed that my dh, children and I drove to some huge mall I didn’t recognize in an area I didn’t know.  Now that’s not saying much as we’ve only lived here a few months and it takes me 900 years to get to know an area.  I get lost backing out of my own driveway, forget my own name and have a hard time recognizing my living room.  But I digress…

So in the dream, I got separated from my family and ended up lost in the huge mall by myself unable to call my dh because my cell phone (a 1995 vintage phone) didn’t work.  It got dark, my dh never came back for me and the mall closed with me still in it.  After waking up, I was still kind of upset with my dh for leaving me in Dream Mall the entire night.

That morning, I told my tale of mall woe to my dh who said he’d had an odd dream as well. In his dream, he and our two young daughters (we actually have one married dd and a teenage son) were trying to get into an outdoor Walmart to buy some food. The girls were hungry because I didn’t feed them that day.  He had to enter some kind of key coded gate, but upon entering, he was unable to get to the check out with his food.  He told me that upon waking up, he was still upset with me for not feeding our two young daughters all day.

I informed him that I couldn’t have fed them because he LEFT ME AT THE MALL!

I now return you to your regularly scheduled reality.  Have you ever had a dream that seemed to go hand in hand with your spouse’s dream?  Do tell!

Doctor Protocol 3.0

Written By: JoJoisms - Feb• 24•16

Pain1501Apparently, there is a new Dr protocol for appointments I was somehow blissfully unaware of until recently.  As this is the 21st Century, I’ll put it in terms our kids would understand.  It’s Doctor Protocol 3.0.  It’s the operating system for doctors of the information age…or should I say non information age.  It’s where you make an appointment because you have several chronic illness issues that have gone untreated for a month or six or 12 and they make you an appointment. BUT when you come in, you are told the doctor can only address one concern per visit.

I say 3.0 because there was an updated protocol many years back where doctors were not inclined to treat you as a whole person but as a collection of symptoms they addressed with whatever conventional medical training de jour teaches even if they know darn good and well it won’t work for you.  So this is the new and improved Doctor Protocol 3.0.

I shared my new found disgruntledness with several peri people on Facebook a few weeks ago and was regaled with some important information I was apparently missing pre enlightenment.  I now enlighten you in case you had any delusions of grandeur.

I went to my GP a few months ago mainly, but not entirely, due to frozen shoulder. It had been extremely painful for six months and I hadn’t had insurance til then. Lost it a yr ago when my dh lost his job. She would only address that one issue saying she didn’t have time to blah blah blah….  After some phys therapy, it felt much better, but I still had several chronic issues including a ton of Peri issues to solve.  As I was busy running three business trying to make ends meet in the absence of a salaried income, I didn’t bother to make another appointment until…

Then the other night I was dizzy so I made an appt. “I know you want to talk about all your issues, but I don’t have time right now”. So I had a urine test which revealed a UTI.  She gave me a prescription for that and asked me to make a “long appt” for two weeks hence to follow up and discuss more of my issues.  I’m 53.  Been to a lot of dr’s as I have always had a lot of chronic issues. NEVER been told this. So I asked my FB group if this was a new trend so dr’s can bill ins co for more visits? 

I was told that insurance companies only allow drs to bill for 12 minutes per patient.  UM!  What if it takes me 12 minutes just to list them off?  UH…what if you prescribe something for me that is counter intuitive due to another issue I have that you would finally address at visit #6?  And do I really have to wait six visits and weeks or months to begin to address chronic pain, fatigue and stuff?!  

So we’ve gone from a dr/patient *relationship* to a dr/patient sound byte exchange.  The Information Age has now tarnished our relationships so much that the resulting conversation is spoken in shorthand and bullet points articulated in rushed, hushed tones so as not to antagonize the Insurance Gods and awaken the Time Nazis.  

What’s your experience?

What’s the one thing you’d like people to know?

Written By: JoJoisms - Feb• 16•16

CrazyEach month here at JoJoisms, is going to be question time. Time for JoJo to sit back and read what you all have to say!  This is also a time for you all to share your heart and for me to understand more of what my readership needs from me here at JoJoisms.  So…

What is the one thing you’d like people to know about your chronic illness?  Please share your thoughts in the comments as detailed as you would like to get…or not. 😀  Feel free to rant, but please don’t rave. LOL  I know how frustrating chronic illness/pain can be so feel free to share your heart as long as you refrain from language that isn’t Family Friendly, please.  

I’m sure there are many others who share your concerns and frustrations. Let’s see if we can share with each other, support one another and learn from each of our stories so we don’t look like Screaming Sheila over there to the left.  LOL  If we can verbalize what we’d like, sometimes with help and God’s grace we can find a way to get what we need.  

What’s the one thing you’d like people to know about your chronic illness?  Go!

Two are better than one; because they have a good reward for their labour.  For if they fall, the one will lift up his fellow: but woe to him that is alone when he falleth; for he hath not another to help him up.” -Ecclesiastes 4:9-10 KJV