Dancing Through The Storm

So we meet again!  It’s been way too long since I’ve posted.  I am sure all of my fellow spoonies know all too well, there are many things that keep us from doing the things we love…so there’s no sense going into all of it.  However, I will update you a little on what has been going on with me lately.

Last month I had to go for an MRI because my lower back pain has been worse than the normal smattering of pain here and there.  It is painful all the time now.  So during this month’s visit at my pain specialist, I was informed that the MRI did in fact show another herniated disc that is pushing against my spinal cord, but also that a “mass” that was found in my uterus.

I was then sent to an OBGYN where they did a pap test and vaginal exam.  They also scheduled me for an ultrasound next week and then a consult to go over all the findings the same day.  It was a little nerve racking sitting in his office hearing words like cervical cancer or uterine cancer.  Honestly, I just heard cancer.  So, now we just wait and see what comes back next Wednesday.  I’m hoping to hear the word fibroid or benign.

In between the MRI results and my OBGYN visit, my boyfriend collapsed at a Christmas open house and had to go to the hospital by ambulance.  After spending two days in the hospital running tests and monitoring his vitals, they don’t know what caused him to pass out.  They did find bleeding within the subarachnoid space, which is the area between the brain and the tissues that cover the brain.  They don’t know if the hemorrhage caused him to collapse, like a small aneurism, or the bleeding happened due to injuring his head when he passed out.

See, when he passed out the first time, he came to and decided he was fine and stood up.  He should have listened to all of us there and stayed on the floor because he immediately passed out again and hit his head, again.  I really can’t fault him for standing up though because he doesn’t remember a thing until he “woke up” in the ambulance.  His entire first day in the hospital is still a little fuzzy to him.

He’s now home and is off work for a week and can’t drive for a month.  They have him on a heart monitor to make sure he isn’t having cardiac arrhythmia or any other anomalies.  He’ll also have to have another CT scan in the next week or so to ensure that the bleed in his brain is healing up on it’s own.

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So…that has just been the month!  The previous nine months have been fairly similar, just not as overwhelming…thank goodness!  I honestly cannot fathom how someone posts regularly when they are battling a chronic illness and have a family.  For me, it’s just a lot with two grown kids, two kids in college (one four hours away and one still at home) and homeschooling my 17 year old.  We have also sort of started a small reptile zoo in our home, not to mention our two dogs.  I’ll have to post about that soon!  Honestly, there are times I am lucky to get a shower regularly, see Shower Confessions.

Right now we are trying to get through Christmas and even a healthy person can have challenges doing this!  I am just praying for it to be over quite frankly.  We don’t even have the tree up yet.  Hopefully we’ll have it up this weekend.  My step-son and I are going to pick her up my daughter at IU today, so I’m sure she’ll want to help doing that.

I will have to be more diligent in keeping up with my blog this year…guess that’s my New Year’s Resolution!

Happy Holidays everyone!

 

Where Can A Girl Get Some Insurance Around Here…

Once again, I haven’t been writing very much because I have been in a flare from hell!  Much like my last flare, this one was also induced by my menacing medication changes…initially anyway.  Pain med changes are a necessary evil of having chronic pain.  The evil part being the in your bones kind of pain and don’t get me started on the exhaustion, cold sweats and muscle spasms!  My hair even hurts, well technically my scalp, but you know what I mean.

I’m sure it wouldn’t be nearly as bad as it is now but I am stressed, frustrated and ultimately just disappointed.  I filed for disability a little over two years ago.  It’s a long, drawn-out, stressful process but I always had hope, held onto it like a lifeline.  I had hope that eventually I would be approved and be able to receive Medicare because I just can’t afford the labs, treatments and surgeries I need.

I would talk about Obama Care or state funded insurance but, I seriously don’t want to go on that rant (trust me, you don’t want me to either!)  So…I waited, patiently over the past two years.  I had faith that my medical records would speak for themselves and the hearing would just be a “formality”.  I was so very wrong!

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A few days ago I received an email from my attorney letting me know my case has been denied by the judge.  We would have to wait for the official letter to know the reasoning.  I couldn’t believe it!  My attorney’s Theory of Case letter was pretty damn compelling with a myriad of medical tests, imaging, doctor’s opinions, etc. to prove his theory!!  What more do they want?

During my hearing, the judge brought up my pain doctor.  He was investigated and charged for over-prescribing opioids and fraud and had several patients who ultimately lost their lives, I believe seven total.  It is a tragic situation for sure!

Anyway, this judge brought up the case against him and asked if that is why I was on such heavy duty pain medication.  When I answered no, it is because I am truly in a lot of pain, she seemed dismissive.  I honestly believe that is why my case was denied but we will have to wait for the official decision.  It’s just devastating really because I know it will be two years or more before it can be reviewed by the appeals board because there’s only one of them in the entire United States that reviews hearing decisions.

All that time, I held onto that little glimmer of hope that I would be approved and be able to get the appropriate care that I can’t afford currently.  Now that hope is gone!  I keep a smile on my face and try to get through my day but every day since, it is getting harder and harder to do.

This additional stress has made my current flare even more intense and much more difficult to handle because I know there is no relief in sight anymore.  But like I said, I try to not let it get the best of me.  So now, I not only battle my body but this feeling that all hope is lost.  It’s hard and it sucks but there’s no other choice.  I have to keep moving forward and keep pushing for someone to listen to me.  Someone to understand that I need these procedures and treatments and I’m not just trying to beat the system.

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I have to constantly fight against the judgment of society who seems to view me as a “slacker” or “pill popper” as well and I am just so exhausted!!  I don’t know how much more fight I have in me but that’s all I know…keep fighting.  It shouldn’t have to be a fight though.  I shouldn’t have to fight for “affordable” health insurance.  I shouldn’t have to fight to make the Social Security Disability office realize that I am truly suffering and cannot work.

I don’t know how many times I have cried, sobbing because I just want my old life back!  I just want to go back to work and live my life because this “surviving” that I am doing is not living.  It is a soul-destroying exhaustion!  Today is a bad day for me but I have some faith left that better ones are somewhere in my future so I will wipe my tears and continue surviving to meet each new day because one day, it will get better.

To the woman who tutted at me using the disabled toilets…

To the woman who tutted at me using the disabled toilets…

Just another fine example of how people don’t understand invisible illnesses/disabilities. The embarrassment and guilt is not necessary from the general public, trust me, most of us get it enough from ourselves.

So Bad Ass

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the…

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Shower confessions…

There are some things that you may not know about someone living with chronic illness.  The reason it’s not talked about is because a lot of these things we consider humiliating or embarrassing.  I’m sharing just one of them with you today.

We don’t shower every day!  What!?  That’s crazy right?  A shower is supposed to make you feel better, isn’t it?

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Well, before I got sick, I actually thought the idea of not taking a shower every day was disgusting.  Yeah, I still think it’s not cool and somewhat disgusting but something as simple as taking a shower is a task that now takes all the strength and energy I can muster.

Sound like maybe I’m exaggerating?  I mean, how can something that usually makes most people feel better actually be so difficult and dreaded?  I know exactly what you mean, but I am not exaggerating or being dramatic.  I used to LOVE showers!  It was my favorite time of the day, well besides sleep.  It was “me” time…my haven.  It energized me and gave me optimism to face the day.  Hell, there were times I would take a shower at night too…just to wash the stress and worries of the day down the drain.

Now, I have to build up the courage to step foot in the shower because the first five minutes is the like it is for everyone else…COLD!!  Only now, it’s not just “uncomfortable”, it’s painful too!  No one likes being cold, it’s annoying.  But when you’re like me, being cold is now painful.  I could write another paragraph about this, but trust me, it hurts!  Just getting naked before getting in the shower has me covered in painful goose bumps.

I then have to brace myself and face the shock of the water hitting my skin.  Each initial drop feels like being stung by a bee.  After a few minutes, it diminishes to being poked with a thumb tack, so I begin washing my hair.  This alone is exhausting, reaching above my head, scrubbing and rinsing and I haven’t even gotten to the conditioner yet.  Some days I skip the conditioner just to be that much closer to being done.  That’s what leave-in conditioner is for right?

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Now I have to actually wash my body.  At this point, I need to sit down on my shower chair because not only is my balance that of a 1-year-old trying to learn to walk but I would not be able to stand the entire time it takes me to shower.  Trust me, I’ve fallen too many times!  So, lather up the washcloth…reaching again and bending, trying to twist to reach my sides.  All while still being poked with those annoying and sometimes painful thumbtacks, I mean drops of water.

By this time, I’ve convinced myself that I might as well endure this torture a little while longer to shave my legs, that is, if it’s a particularly good day…otherwise it’s rinse and get the hell outta there!  If I managed to shave my legs, I feel like I just completed a particularly difficult Zumba work out….but I am not in the clear yet!

Now I have to get out and face the painful goose bumps again *sigh* and just when I managed to warm up a little after that intense work out.  Most of the time I reach outside the shower and grab the towel leaving the curtain closed so it’s not so cold, but this doesn’t work all the time.  I dry off as quick as I can while sitting in the shower chair.

Then if I’m feeling brave, I put on some lotion and get dressed.  After all of that, there is no energy left to blow dry my hair or style it and forget make-up!  I’m lucky to put socks on and it’s back to the couch to recover.  So now maybe you understand that a nice hot shower isn’t necessarily going to make us feel better.  It can actually sometimes make us hurt even more!

Late Assignment – Blogging 101- About Me!

Late Assignment – Blogging 101- About Me!

I feel as though I should be sitting in the principal’s office or detention at the very least.  I am two assignments behind on Blogging University – Blogging 101, or is it three now?  Ugh!  Finding myself behind in the first week doesn’t sit well with me because I truly hate the feeling that I am not on top of things, that I am essentially “lost”.

Truth is, even though I started my blog a little over a year ago and have some posts under my belt, there are many times I feel like I don’t know what I am doing.  That is precisely the reason I signed up for Blogging 101.  Trying to learn how to add different options, widgets or whatever to my blog or change my theme made me realize I am not as tech savvy as I thought I was.  It’s a little depressing and intimidating but again, the reason I am taking Blogging 101.

I am pretty sure my writing style and subject matter could use a little tweaking as well…mostly because I feel that my posts are becoming redundant. I seem to be regurgitating the same message rant over and over when there are so many more topics related to living with a chronic illness I want to write about. Focus!  This is something I’m trying to work on!  Let me explain what I mean by focus.  I can be writing a post about one thing and while I’m in the thick of it, go off on a tangent and think to myself, that could be a post by itself!  It’s like I have the focus of a squirrel trying to cross a busy street!

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This blog started as a sort of therapy for me, much like writing in a journal, but I wasn’t happy to just write my thoughts down.  I mean what good was it really doing if I wasn’t sharing my thoughts and experiences with others like me?  I want to share my successes and failures while living with chronic pain.  I want to share the stuff no one wants to talk about with their friends or family because they feel ashamed or embarrassed to talk about it with someone who can’t possibly understand, yet they need to know someone understands them.  The truth is, others just don’t know what it is like to live life in slow motion, what it is like to have to make the decision to shower or make dinner because you can’t do both.  I know they don’t truly understand because I used to be one of those people before I had to walk the walk.  I may not be the most inspiring, positive or upbeat person but I truly understand what it is like to walk in a mile in your shoes!

Trying to accept my limitations…it’s damn hard sometimes!

Today as we were driving back from picking my son up at his dad’s house, it seemed that I was constantly bombarded by signs or billboards of events or activities that I can no longer participate in.  There was one sign for SkyZone, which is a huge place that has trampolines in the floor.  Another one was an advertisement for a local casino for New Year’s Eve party.  Even the radio had commercials for New Year’s Eve parties and different events going on this week.  Sometimes just seeing someone hurry across an intersection makes me envious!

There isn’t a day that goes by that I don’t think how my life would be different if I didn’t have chronic pain.  If I didn’t have Fibromyalgia, MCTD, Osteoarthritis, IBS and Migraines.  What my life would be like if I could work and be a contributing member of society again.  I truly feel like a young person trapped in the body of a 90-year-old.  I mean I’m only 42, these are supposed to be the best years of my life, right?  I miss being able to do things like going out with John, just relaxing and enjoy each other’s company.

Tonight I feel that longing even more.  It is New Year’s Eve and I want to go out with my amazing boyfriend and bring in the new year out on the town.  I would give anything to decide we are going out and simply go!  I don’t even know what it would be like to just go without worrying about what kind of seating there will be, if I will need my cane or wheelchair (and if where we’re going is wheelchair accessible), if I can manage a shower and how I feel after getting ready.  Ugh!  There are times I use all my spoons for the day by simply getting a shower and making myself presentable.  It’s no wonder we don’t go out very often, meaning maybe 2 or 3 times a year.  I am pretty sure tonight we will spend the evening watching movies or one of our favorite TV series, followed by watching the ball drop and going to bed.

It’s times like these that I find it very difficult to accept my limited abilities.  Yes, in the past I have trucked my way through the pain and fatigue and forced myself to go out.  I also paid the price for several days, if not weeks after.  During that time, I felt lucky I could still walk to the bathroom by myself!  Well, with the assistance of a walker.  So you see there is a price to be paid for using up more than a days worth of spoons.  I am borrowing tomorrow’s spoons yes, but that loan has some crazy interest!