Mad as Hell

I’ve thought an immense number of hours about what the cause or causes of my diagnosis of arachnoiditis were.  Before I had any knowledge whatsoever, I was certain after reading a bit… that the first time I went for a 2nd round of steroid injections, that Dr caused it.

When I finally got back in to see my actual neurologist (after getting the initial diagnosis from his PA) & he explained that my cauda equina (horses tail – nerves that should be hanging freely in your mid back) had been smashed together by my ruptured disc, I thought, well there is the answer.  That’s what caused this.

The more time I have to think about this, the more pissed off I get.  IF when my disc initially herniated they had gone ahead and done surgery -and those nerves were no longer pressed together- would I be in this predicament now??  Instead of sending me through 2 months of waiting, being in a tremendous amount of pain, being able to do nothing & having me go through 3 steroid injections with VERY limited change – would I have this arachnoiditis?  IF they had fixed it in the beginning, WOULD it have ruptured even more, as it did nearly 2 months later!?!

MAYBE the first rupture and the pressure on my nerves being fixed more quickly would have prevented this!?!  MAYBE the steroid injections helped to cause this?!? MAYBE the severity of the 2nd rupture (which may or may not have happened if they fixed the first one sooner) MAYBE if it hadn’t happened, I wouldn’t have ARACHNOIDITIS!?!  MAYBE when I went back because my pain was slowly coming back and hadn’t had that 2nd set of 2 steroid injections I wouldn’t have this disease!  MAYBE it wasn’t full on ARACHNOIDITIS until the Dr doing these injections hit my spinal canal & fluid leaked out & I’m sure some of the steroids & preservatives entered my spinal canal, which they say can sometimes cause  Arachnoiditis – MAYBE I would not have this damn, frustrating and painful disease.

I am feeling mad as hell because I will NEVER KNOW!!!  I will never know and I cannot stop thinking about it & it drives me insane!  Maybe that time will come, when I come to terms with this & have some peace of mind about it, I don’t know – right now, it does not feel that way.

Right now, I am tired of thinking about it as soon as I wake up, tired of crying about it, tired of praying myself to sleep over it – there is no hope, so this, right now, is my only hope!  I don’t know how to get past it, BUT whether or not whoever reads this believes in God, I do & he is my tireless listener.

It is hard being so filled with anger everyday.  I feel bad about how I react to the people I love, but I feel totally out of control.  It’s just there, it’s always there.

I TRY to drag out the positives!  I have a husband who sticks with me, bitchy as I may be.  I have 2 daughters who are healthy and safe and still have their mother.  When I think about them not having me, that isn’t when I try to get positive.  If I’m only here for them, at least for long enough and able to function, then I will do my best to manage the pain and loss of a life that I once had.

For all of these reasons, My life remains perfect, but also painful… But, I’m still MAD AS HELL!!!

 

 

A wasted life

I’ve been thinking for the last week (or more) about the part of my life that I am feeling was wasted.  Before my body was broken, tired and had a tendency for pain.  I had almost 41 years and I am wishing I had done so much more.  Like the berries frozen in the photo above, I now feel like I am frozen in this body, trapped.  I can’t get out of what I am, I can’t do the things I want to do, even the most trivial/normal sort of things I used to do without a second thought are done with the knowledge that the payment will be pain later on.

My Mom’s Birthday was today!  My 7 year old LOVES to plan parties!  So, yesterday afternoon, we went to the party supply store and a department store to get her a gift.  I was sore this morning, I had pain in my leg down to my ankle as soon as I stood.  I can’t disappoint my child, not today,  it in this way – or my Mother.  I have to disappoint them in many ways because there are things I just can’t do, won’t do – because the price isn’t too high – for all of us!

So, this morning, we started out making a homemade cake.  It was a kind we had never done before, I usually buy the boxed kind.  But, she got a new cookbook for Christmas and really wants to try these recipes.  It took an hour to put it all together and just get it in the oven. Luckily, my husband was home today and could take the cake out of the oven because I had to take our other daughter to the Dr. As one side of her face look like a chipmunk with a jaw full of nuts!  Possible mumps… final diagnosis still pending….

Upon returning home, back to work in the kitchen to make homemade buttercream frosting.  Dad helped her with her party decorations, thank you God for a wonderful husband & father!!

So tonight, I sit here hurting, my back hurts, my neck hurts, I have pain traveling down my right leg, into my right ankle and even for the first time sneaking into the bottom of my foot.  This is new for me and scary, who knows how far this disease will progress and how fast.  The thought of being in more pain, losing control of my bowels/bladder or being paralyzed is just daunting.

But, in spite of it all, my life is still perfect even though painful!  I have 2 healthy, wonderful children and an amazing husband who takes excellent care of me.  I am also blessed to still have both of my parents around and they are a great help to me in many ways as well.

 

 

 

 

 

 

 

 

 

 

 

Mourning Me

Some days a single tear trickles down my cheek.  Some days I can feel the streaming flood of tears individually rolling down, as if they are leaving a permanent scar on my face.  And on other days, there are uncontrollable sobs of which I cannot keep track of the tears.  Somedays, I feel more hopeful & just thankful to have had the life I have.  On other days, I am full of extreme bitterness and anger, coupled with sadness – always.

I decided a few weeks ago that this pattern I’ve been going through is grief.  I haven’t lost “anyone”, but I have lost myself.  I do not know who I can or will be anymore.  I cannot do the things I used to do without the penance of pain.  I am unable to dream and hope for the same things I once did as my past self.  No more thoughts of what we will do and where we will travel as retired people, my body simply will not allow it in its present condition.

I hope I am braver than I think because I fear the worst is yet to come.  I’ve read tons of articles and tried to stay hopeful that someone will research arachnoiditis enough and come up with a “fix”.  The thought of this pain every day for however many years I have left is almost to much to bear.  And the effects it is going to continue to have in my life and those I love with all my heart is just about unbearable.

I am only 43, but this all began just before I turned 41.  I was driving down the road with my 13 year old yesterday thinking how will I handle sitting at your high school graduation?  How will I travel to see you if you move away?  I will not be able to pick up and play with my grandchildren.  I will probably, depending on progression, be able to hold them as small infants before they to be too much too handle.  Will I ever be able to go to an event that lasts a couple of hours with my family again? What kind of seating will they have?  If it’s too uncomfortable, I will pay the price of the next several days or weeks – just for sitting in the wrong kind of chair.

Most days, I try to drown these thoughts out by focusing on the things I can do.  I am still here to talk with my daughters and help them with school work, to give them advice they probably will not take!  I can still walk and use the bathroom by myself without accidents.  I am not my paralyzed!  These are 2 of my worst fears!  I do not want my husband or anyone to have to take care of me in those ways.

But the pain is here, every morning, every minute of every day.  Make sure I sit in a comfortable chair, move around enough, but not too much.  Bend as little as possible and no lifting to reduce the chances of a big flare up and the punishment I will be dealt.

Dry away the tears, try not to let them see.  Most days I can do this!  On some I am simply too overwhelmed to try and cover it up.  Some days the anger spills out of me like an angry volcano and there is nothing I have yet learned to stop it’s wrath.

The tears will not cease to come.  I’ve no idea how long it will last or if it will ever end – this grief of me.

Unbridled Grief

I know to the minute the moment my Grandpa departed this earth!  We all knew it was coming, cancer was taking him from us.  It already had taken most of him before he left on his heavenly journey.  I have never and do not think I ever will get over this loss.  I fear for myself the day that I lose my parents, I fear for how I will be able to go on with my life.  They are best friends to me, we have remained close, even though obstacles and certain people have tried to disconnect us from our special bond.

My Grandpa was a very special man!  Everyone loved him, especially the ladies.  He was so handsome and Incan see him now singing and playing his guitar, dancing a jig around the room!  He was such a bright light in my world, in a lot of peoples world.  I know my Dad must miss him immeasurably and my Grandma, after so many years together, I simply cannot imagine how much she misses him.  I mean, I cry about it on a fairly regular basis.  The mention of him brings tears to my eyes and a lump in my throat.

I miss him and his love of life, his spirit so much!  I remember our conversation about him deciding to have surgery to remove the cancer.  His decision was guided by a verse in the Bible.  I am aggravated that I cannot remember which one, but It seems like it was in Corinthians.  He showed it to me and tried to reassure me that no matter what he felt this was the decision God had led him to make.

I cried a lot, I cried the morning of the surgery saying bye to him.  He was in the wheelchair heading back and I knew things would never be the same.  I brought my schoolwork (college), but there was no concentrating on that day.

Many family members were present on this day!  When the surgery was done, the Dr called us into a private family room.  I will never forget him saying the cancer had metastasized into his lymph nodes and they had removed all they could.  He indicated he probably had maybe 2 years to live.  The room went black, I was tucked into a corner next to my Dads youngest brother and his girlfriend.  I couldn’t stand either of them.  I told myself I could not pass out, I could not add more stress to a stressful and utterly sad situation.  I closed my eyes and breathed in air and somehow was able to bring myself back around without collapsing.

Now, before my Grandpa went back for surgery, he said when I get out I don’t want to see any crying.  Don’t come back and see me if you’re going to be crying.  Everyone took their turn visiting him in ICU, but I did not.  I had sought out the chapel in the hospital.  I needed to cry and prayers in on my own, I didn’t want to be around anyone!  This was not going to be alright.  There was construction going on, so I could not get to the chapel.  I found a door outside to a little sitting area.  I just sat there on a bench for hours and hours sobbing asking God why and to please heal him.  Tears fill my eyes as I type this.  It has been nearly 24 years and I am still not over this!

Someone came to find me late in the afternoon, probably my Dad or my Aunt – it’s a blur.  I did not go see him, I did not want to upset him!  I remember on the car ride back to Grandma & Grandpas House, we had to pull over, so I could throw up.

I saw him the next morning when we returned to the hospital.  He wanted to know where I had been, I should have known.  I told him the truth, I could not stop crying and did not want to disappoint him especially since he said no crying.  He of course said I should have came in anyways.  He was such a selfless man, like my own Daddy and the wonderful husband I have been blessed with.  I also did not want him to know about his prognosis, since it was decided we would wait for a few days to tell him. I think he already knew the news was not good since no one told him anything.  It was simply going to be a very devastating blow,  As a,ways, he remained positive and relied on his trust in God that thing s would be alright, one way or the other!

I have known since then how fragile life is.  He was such a very strong man & this illness snuck up on all of us.  It was so unexpected, it was just not possible.  I was only 19 when he was diagnosed and a few weeks from turning 20 when his suffering ended.  He put up all the fight he could, enduring chemo and it just wasn’t enough.  When he was at home dying he would be talking to his Dad and  look up saying “those are the good guys up there!”

People have always said that I have an “old soul”.  It gets older with life experience, I try to be more of a listener than a talker.  Sometimes, I talk too much!

Learning that my life has changed forever a couple of months ago has really set in as to how fragile life is.  I’ve always worried about losing the ones  love.  Now, I am grieving the loss of what my life was, of what I thought it was going to be.  Unless there is some significant medical breakthrough, my life, life as I knew it for almost 41 years is gone.  I am grieving and I am angry and this makes me feel a whole lot of the emotions I felt when my Grandpa died.  I am angry at the part of my life I feel I wasted.

I continue to grieve for him and I don’t know how long this grief will last.  Maybe this will be never ending.  I feel frustrated & these frustrations and ups and downs are never going to go away.  My independence is lost, I will never be able to work again, be the same Mom I used to be, he the same wife, daughter, sister, aunt…  I have to adapt to asking for help, which I hate to do.  When I want something done, I just want to do it!

So, today in my painfully perfect life, I pray for all of us who suffer with chronic pain.  For all of us who have lost a part of who they used to be.  I pray for an end to this grief I fear will never end.  I remain thankful for the life I do have, for the pain which is much less than some endure.  I am blessed with a supportive family and knowing they will never abandon me.

Perfect isn’t perfect

I got to the point of realizing my house is never going to be a perfect show home some years ago.  Honestly, I’m not sure why I ever really wanted that because I really don’t like to entertain.  We don’t have people over aside from family,  I don’t have girls night playing bunco or talking about books we’ve all read.  My husband & I both prefer it just be us, the kids & sometimes my parents hanging out anyways.  I have never been one that has to have people around to energize me,  I am definitely an introvert.  People exhaust me!!!  I don’t like having to worry about my bathroom being spotless or making sure that spot on the carpet has been cleaned up, so no one will notice.  I don’t care what people think about my messy/used lived in every room house.  All that matters to me is that the 4 of us living here are happy & content.

Having said all that, I want to quickly state that arachnoiditis sucks!  I took my Mom on an errand, along with my 7 year old (we do online school).  I stood and did some walking for about an hour.  I wore my TENS unit because it helps to distract from the pain.  I don’t think it makes it better, but distraction is, I believe, an accurate word for what it does for me.

When we got home, I needed to start peeling potatoes for dinner.  My husband pretty much does all the shopping, plans the meals and cooks and cleans up now.  But, he was going to be a bit late and we like to eat fairly early.  So, I peeled potatoes, he started chopping onions as soon as he got home.  I finished putting the dish together and got it in the oven.  Bending to do even this is an act I do cautiously, trying to remember to bend at the knees and lift carefully.  He said he’d empty the clean dishes when I was done, but he is very tired.  He gets up at 4:30-5 regularly as he just wakes up, he isn’t a morning person.  Anyhow, I decided to empty it, got in trouble for that as he doesn’t like me bending over a lot.  I try not to, but sometimes I feel bad he has to do so much around here and work a full time job.  So, then I organized himself pills for the week and emptied the dryer of clothes as well.  By then, my back was yelling at me to sit down & take a break.

Thankfully, having children got me partially ready for accepting my house would never ALWAYS be perfectly tidy & clean.  I’m a bit OCD about the way I like things.  I like things to be clean & organized.  I like the laundry to be caught up, the sink to be empty, the countertops clean, shower curtain tidy & closed.  I like the kitchen & bathroom counters to be wiped down and clean AND I like the towels to be hung or laid out to dry.  It drives me crazy when people leave them in a ball.  It drives me crazy when people leave soap running down the soap pump or in a puddle on the counter.  I DESPISE stepping on crumbs!!!!!

So, these seemingly unrelated paragraphs of me ranting a bit lead me to this.  I have got to accept that “things” will never be perfect or near perfect in my house.  It’s ok!  I thought when I became a stay at home Mom, I’d keep up better, nope.  Dusting is one of my downfalls, I hate dusting.  Ah, let’s see if we can set a record and get to 2”…. 🤫😏 My back hurts and my leg hurts – Arachnoiditis has taken my regular life from me.  I must do everything with caution, with a limit and I MUST ask for help.  I do not like to ask for help, I like being independent.

But, I have learned to ask for help 🙄 – I’ve slowed down significantly & I’m on the way to accepting my life will never be as it once was.  I am extremely blessed to have people who stick with me & will always support me.  That is a whole lot more than most have, I have to remind myself of this on occasion.

My house isn’t perfect, but my people are mostly happy and THAT is perfect.  Even if my perfection comes at the cost of some pain.  It’s perfectly painful!  9DF2A5DD-1A61-4DFB-98AB-4F373036BA91

Everybody wants to talk, no one wants to listen

Ever since I can remember, I have been the one people came to talk to; my Mom, my Dad, my brother.  I always enjoyed being able to be there for them, somehow comfort, give them advice and show them what I saw from my perspective!   Always being more of a listener than a talker.  You definitely learn more when you are listening than when you are talking.  My husband talks to me a lot, which I appreciate fully, because I did not have that in my first marriage.  My kids, of course…, chatter, chatter, chatter.

I find it difficult that I need to talk, not that I have a hard time saying what I need to say.  I’ve never had much of a problem with that either!  I have, however, learned that sometimes it is best to step back, be quiet & mull things over, let things sink in a bit, before I start talking.  It just feels like they don’t want to hear me talk.

Maybe this is totally unfounded, maybe it is not.  People never want to continually listen to someone’s problems or pains.  I understand this, I’ve been on that side of the fence!  Here comes that negative Nellie, whoa is me person.  Day in & day out, there is another problem or complaint.

But I’m talking about my key people here!  I lost my brothers ear years ago, we were best friends & there came a new person & suddenly everything changed – poof, and he was gone.  But I guess I have never REALLY needed then to listen so much before.  I have a singular focus now of learning and trying to do as much as possible to make my best possible life for not only myself, but for my kids & my husband.

I guess I want to talk about all this new found information, what I’m reading about, what I think the best plan of action is.  And, I want them to really be interested & offer up their perspectives as well,  but it just doesn’t seem to be happening that way.  I already feel like they are tired of hearing me talk, like here she goes again.

I may be totally off base, I know they are struggling to accept this new diagnosis as well.  Maybe it’s  difficult for them to talk about, it is still for me too on some days.  On other days, I’m on overdrive to learn and gather as much information as possible.  Some days, I’m just plain angry!

Whatever this new reality brings, I know they are in it with me to the end.  I know they will be here to support me with whatever I need, as they always have been!  I am especially blessed with a family that loves me to no end.  I will continue to listen and hopefully they will learn that sometimes, all I need, is an ear to bend too!

A New Chapter

At the end of November, my family went on a wonderful vacation to Destin, Florida.  We had done the same thing the year before and enjoyed it so much, we went again.  We did a lot of walking on the beach, the pier etc.  By the end of the week, my back was killing me and I had such an extraordinarily hellacious headache, I was nauseous and spent our last evening bedridden.  I felt slightly better the next day, but it was not a fun 2 days for me riding in a very uncomfortable rented mini van.  It took me 2-3 weeks of rest and surviving a few more of those headaches to “mostly recover!

I was supposed to have had a myelogram the week prior to going on vacation because my back & leg pain from a 2015 incident continued to get worse.  This was put off until the day after I returned home due to a machine breakdown.  I am glad for that now because it let me enjoy that time with my family.

About a week later, I went to see my Dr.’s PA (physician assistant) for the results.  I was told I have arachnoiditis!  It was all said very matter of factly!  I was told there was no treatment for this disease and it was explained that I could be put on pain meds that would have to be steadily increased in dosage over the years or they offered me a spinal cord stimulator.  I said there was no choice for me, I don’t want to be in drugs.  I was shown my images where the nerves were clumped together sent on my way with a booklet.  I just thought I had some scar tissue pressing on nerves that would need to be removed.  Little did I know, I was about to start getting the education of my life.

Well, my insurance specifically excludes spinal cord stimulators, so I set off to find out the cost and friends suggested a GoFundMe account.  I have yet to get any final numbers, but it would be around 70-80k is what I’ve heard.  Waaaaaaayyyyy beyond our means to say the least.

So, my research on this disease began…. and as it turns out, I think it was probably a good thing my insurance company will not pay for it, because it prompted me to do a lot more research.

Now, I’m searching, hoping & praying every day to find the answers for myself & so many others in pain.  At this point, I am not finding anything that is going to make a significant difference in the affect this disease has on my life.  The only things I know to do at this point is do as little as possible to keep from aggravating the membrane and find a decent balance in what I can do.

Forever Changed

I’ve suffered from back trouble for a number of years.  Usually I could go to the chiropractor and get my back & hips adjusted and feel fairly ok.  My neck has also plagued me with pain for many many years.  I carry a lot, if not all of my stress in my neck and shoulders.

In the early 2010’s, even gardening became a chore.  I would plant my flowers and the next day be in severe pain and barely able to walk.  I’d go to the chiropractor to no avail and usually 3-5 days later, I would be fairly normal again.

In 2015, little did I know, my life would change forever.  I was only about to turn 41 for heavens sakes.  In May, I rolled over in bed and felt and heard a Big Crunch.  A few days later, I had horrendous pain shooting down my left arm.  I had torn my rotator cuff in two places I would eventually find out.  After that hell healed up and life was starting to get back to normal, I got out of bed one morning and I could not stand up straight.  Terrible pain in my back and shooting down my right leg.

I thought this was one of my “spells”, but this time, it didn’t get better.  I could not do anything except sit in my chair or lay in bed.  I went to see my primary Dr. And they decided I needed physical therapy, no MRI to look at things or anything.  One look at me and the therapist said, “I’m not touching you, you have a ruptured disc and you need an MRI”.

I can’t remember how  much later, but we ended up at one of the ER’s (which in my mind now after my experience I consider an urgent care).  We finally got the Dr. To understand I was not drug seeking and he got me an MRI!  My the things they can make happen if they give a little thought and effort.  Results = herniated disc (duh) at L5/S1.  I finally got referred to a neurosurgeon, I saw his assistant the next day.  She suggested steroid injections into my spinal area.  I had 3, they may have helped me to stand a lit bit straighter, but that is it.

Just a few days after my 3rd injection, the disc blew out again.  This time it felt like electricity shot through my back and right leg as I very slightly bent over to pick up my reading glasses.  I could still sit in my chair for a day or two, then I could only lay down to get relief for a few days.  After that,  I could not even get relief by laying down.  I could not sleep, I just wanted to diet the pain was so bad.

Finally on Aug 2, 2015 my husband took me back to a different (real) ER!  I told the nurse I was not leaving until they fixes me.  She said, oh we’ll see, I said I am not kidding, I a man not leaving until you fix me.   Finally I wasn’t seen by a competent ER Dr.  He asked me if I had been having trouble peeing and I said yes, but I thought it was just because of the pain pills.  He immediately ordered an MRI and my disc had blown out even more.  A neurosurgeon was brought in to do emergency surgery that night.  The ER said we needed to fix this before I lost control permanently of my bladder due to nerve damage.

The surgery was a success.  I was out if that’s pain for a few months and some of the nerve pain started to slowly return.  I returned to the Neurologist office several times over the next couple of years and I saw physical therapists, had a couple more injections to no avail.  I could not even go to the grocery store for an hour without being in pain and recovering for the next 2-3 days by doing nothing, but sitting in my recliner.

Finally in November 2017, my Dr’s PA ordered a myelogram and BAM, there it was ARACHNOIDITIS!  I finally had an answer,  it none like I expected!  My life was going to be forever changed.