Holding on…Just Barely

It’s been over three months since my last entry, and like every other time, I don’t know quite where to start.  Being a published author and writer is great, but being a published writer with OCD AND a foggy mind due to a million medications running through my body for anxiety and pain is fairly difficult.  I’ve spent years of my life trying to find just the right words when I am writing.  I spend hours writing a paragraph because I don’t like how it sounds; I feel I can do better – find just the right words to reach perfection.  I never do of course.  It isn’t attainable.  So, I put off writing because it becomes a whole endeavor that I, oftentimes, strip of its fun and catharsis.  I go long intervals between writing when much has happened, so it becomes too overwhelming to recall every detail.  That is why I’m finally promising myself to not let that happen anymore.  I am going to make myself (maybe kicking and screaming) write at least once a week in this blog.  I write not only because despite everything, it is my passion, but because I hope that somehow my words, my story, my struggles, and my resilience will help someone else.  And if, some days, all I can do is complain and share how awful things are, I hope my words will bring comfort to someone else who feels alone in this journey of battling multiple invisible illnesses.

The Comings and Goings of the Last Three Months

So much has happened, and I’m sure you don’t want to read a novel, so I’ll try to keep this as short as I can (which face it, probably isn’t very short, if you know me), and build upon it and fill in the gaps it in the coming weeks.

A couple weeks after my “official diagnosis” of Complex Regional Pain Syndrome (CRPS), despite having it for the last year-and-a-half or so.  I underwent the first of two lumbar sympathetic nerve blocks, which are generally the first course of treatment to if lasting relief is found by blocking the sympathetic nerves, and ultimately, help put you into remission.  With my high anxiety, I was freaking out, seeing as I had to go to a surgery center, be in hospital attire, in a hospital bed, given oxygen, and have my vitals monitored.  The doctor, his fellow, and nurses were all shocked at how much colder my affected foot was than the other.  If I remember correctly, it was 78 degrees.  So that wasn’t a great, hopeful feeling as that’s a tell-tale sign that the CRPS has progressed to the point where it’s harder to treat and achieve remission.

I have always had a high pain tolerance, which I suppose serves me well living with CRPS, but the procedure hurt.  Lying on your stomach, having 6 – 7” sharp needles inserted past your tissues, fat, and blood vessels, until it reaches cluster of sympathetic nerves in your spine, and then having your nerves injected with anesthesia is rough.  Oh yeah, and they do it on two different levels of the spine, so you get to have that done twice.  I can’t quite describe the feeling of such intense pressure, but let’s just say it was not one of the most pleasant experiences I’ve been through.  I pushed through it, and actually was told by the nurses and fellow that I was the “best patient they had seen all day.”  Um, thanks?

My foot rose a few degrees after the block, which is positive, but I didn’t feel any less pain like they had promised I would.  While waiting in the recovery room, others were exclaiming how they were in less pain, so the fact that I wasn’t, was pretty crummy feeling.  I was hoping I’d feel the relief in the coming hours, but that night, I had the worst burning I had ever had, and for at least a week after the procedure could barely move because the referred pain in my back was so severe.  There were days it hurt to even breathe.  Supposedly, the doctor had hit a blood vessel, which may have been why it hurt so much.  I can’t really tell you if it helped much.  About a week later I left on a week cruise with my family, and I did do a lot of walking that I otherwise may not have been able to do, but overall the pain wasn’t much better.

The Second Nerve Block

The doctor assured me that the block had helped since I was able to walk more on the cruise, but I was still skeptical.  I’m not a doctor, but I do know my own body.  Too bad I don’t get paid the big bucks.  Anyway, it’s standard to do a series of three blocks, so I ambivalently agreed to undergo a second nerve block in early July in hopes of finding lasting relief.  This time around was so much more traumatic than the first one.  I had to wait a long time waiting in the hospital bed before being brought back into the OR because the facility had not done as many of these procedures with my doctor, so they didn’t have the right needles, etc.  It’s so reassuring to hear your doctor yelling at them inside the OR that they don’t have the right solution and needle length. (That’s sarcasm if you didn’t catch on).  This time hurt so much worse than the first, and he hit at least two blood vessels, and had to keep repositioning the needle.  All the while, I was tearing up because not only did I feel the blood squirting and running down my back, but I felt so damn helpless strapped to the bed on my stomach, and metaphorically strapped by this damn disease.  When the procedure was complete, the radiologist told me that I was the best patient he’s seen.  What is this theme? Haha.  They had to lift me up and change my gown because blood had gotten all over it, and it’s not comforting when your doctor doesn’t have any bedside manner.  But he’s the leading specialist for CRPS and there are so few doctors that know about, let alone will treat it, so you tell yourself knowledge and experience is worth no empathy.  By the time I got wheeled into the recovery room, my whole leg was burning and hot (which, despite how uncomfortable it was,  I had a glimmer of hope that it meant it worked).  My back was hurting and the nurse told me to go home and ice it.  Her comment made me more upset because icing is a big no-no with CRPS and can do a lot of harm.  So, begrudgingly amongst the tears and pain, I had to educate her so she didn’t give these harmful instructions to someone else.

It’s hard to know I will have to educate so many in the medical field about my disease my whole life, so they don’t cause more harm.

As I mentioned in my last entry, any surgery or injury can spread your CRPS.  Or it can just spread for no reason, as the disease is progressive.  Something like 70% of people have it spread to multiple limbs, and many others have it progress into full body and into their internal organs.  This is the absolute last thing I have wanted.  It’s such a beast of a disease (the highest ranked on the McGill pain scale – over amputation, childbirth, nonterminal cancer, etc.), that to have it in one area was more than enough pain and suffering.  Well, a few days after this nerve block, I started getting pain, burning, and a horrible electric-type feeling (there’s a name but I can’t think of it right now) in my other foot, both legs, under my butt, and both arms. My foot would suddenly get ice cold (as it often does), but now it felt like someone was stabbing me at the same time.  I was in so much pain for a good week or two that I could not sit or function.  All I could do was cry.  Cry not only because of the unrelenting pain, but because that fear of it spreading had come to fruition and the level of hopelessness and depression I felt reached an all-time high.  I got an emergency appointment with my doctor a few days later, but he was adamant that the block hadn’t caused the spread.  I know from extensive knowledge and others who have received blocks, that it can indeed cause a spread.  It wasn’t just a coincidence as much as the doctor wanted me to believe it was.

At this point, you’re probably bored of reading (or maybe you were bored after the first two paragraphs), so I will leave the rest for another day.

Stay strong, my fellow CRPS warriors.  Keep moving forward, even if it’s slow.  Keep hoping that someday soon there will be more awareness, more allocated funds for research, more treatment options, and ultimately, a cure for this awful rare disease.

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The Official Diagnois

“There’s a lot of people that come here that don’t have ‘it,’ but you actually do.”

I’m sure those words will stay with me for as long as I live.

I wish I had a clever, punny title, but I don’t.

I’m not sure where to start, really, and I’m not in the right frame of mind, but writing usually helps.   Then again, if I write it; if I expose this, it makes it a little more real.  The five stages of grief don’t just apply to losing someone you love.  They also smack you in the face when you lose your old self with a confirmed diagnosis that will forever change your life and the way you live. Denial, anger, bargaining, depression, and the one that I’m not sure I’ll ever get to: acceptance.  You grieve for your old life, even if it was messy, and not always the ideal one you wished it could have been.  You realize that one day you will have to learn how to accept the new you.  Not just accept, but love.  If you’re going to make it, you are going to have to find a way to love this broken, dysfunctional part of you that right now seems so unlovable that it repulses you.  I spent over half my life getting to a point in my mental illness journey where I could love myself (well most of the time anyway).  Not that every day wasn’t a struggle with differing levels of obsessive thoughts and anxiety.  I came to the acceptance, however, that it was my cross to bear, my albatross so to speak, and I would try to fight and live my life to the best of my ability with the tools I’ve gathered over the many years and help others suffering along the way.  I never in a million years thought I’d have to deal with this too.  It’s hard to imagine life with something you had never even heard of until a year-and-a-half ago.

The term, Complex Regional Pain Syndrome (CRPS/RSD), was first brought up to me by my Podiatrist, after reinjurying my foot a few months after I broke it.  I thought for sure that I was just taking longer than expected to heal from two traumatic injuries.  Seems plausible, right?  It couldn’t be this rare, debilitating disorder I spent many nights researching.  I mean I did fit a lot of the symptoms, but surely, it could not be that and I would get better, right?  Different doctors I saw and sought out answers from had mixed opinions on if it was that or not.  I was put on nerve medication, in physical therapy, trying acupuncture, the list goes on.  I think I made some progress since it started, but each time I thought it had gotten better and it surely couldn’t be CRPS, I was soberly mistaken.  The level of pain, burning, etc. just varied day-to-day, week-to-week, month-to-month, but it was still there, despite having a high pain tolerance.  As time went on and I went to a second pain management doctor, they believed it was CRPS.  I was still on the fence, as it is a disease that is not well understood (hence the complex part) or really studied.  I thought once I told a doctor that’s what another thought I had, they would just run with it as an easy scapegoat.

Denial.

It was pretty easy to be in denial, and still is to a degree, since there is no one diagnostic test that can prove you have CRPS for sure.  There is no blood test that comes back positive.  There are ways to diagnose it, but it’s not as clear cut as a majority of physical diseases are.  Many doctors either do not know anything about it, or are unwilling to treat it due to its negative stigma and complexity.

I decided I was finally fed up and tired after a year-and-a-half of surviving in this gray area.  I just wanted to know if I had it or not, and I knew the only way I’d be able to find this out was to see someone who had a lot of established knowledge about it.  I was told about Dr. Prager, a doctor out of UCLA that has been a pioneer in the research and treatment of CRPS for well over 20 years, and decided to send my 300 page medical record over to see if I was a candidate for a consultation.  Thankfully (or not – depending on how you/I look at it) I was, and I drove to LA for my consultation yesterday.  It was very hard, but that’s an understatement.  The staff was very thorough and kind, but I couldn’t help but feel like a guinea pig at times.  They pointed out things/signs pretty quickly that I either didn’t see or know I had, or had no idea what they were even talking about.  Turns out my inability to spread my toes like I used to be able to do was an interesting sign.  I sat there trying as hard as I could to splay my toes apart when asked to, and couldn’t.  I didn’t even know I couldn’t do that anymore or that it was a sign of anything.  Finding out you’re not able to  control something you once could is pretty difficult to digest.  Seems silly, I guess, yet I keep trying to.  Also turns out the temperature in my left foot is different than my right.  You can drive yourself crazy wondering if maybe that’s just you and how your body is, and maybe those aren’t signs at all.

I thought that I’d feel more relief knowing for sure, but instead all I feel is devastated, broken, hopeless, and very depressed. Knowing you are part of a rare group that has something that there is no cure for is pretty daunting.  It’s referred to as the “suicide disease,” because many succumb to the pain.  CRPS is rated as having the most severe level of pain on the McGill University Pain Scale, above any chronic pain condition.

Encouraging and hopeful, isn’t?

Going from shredding down mountains on my bike to sometimes not being able to walk more than a block without feeling like your foot is on fire is devastating.  The pain, burning, cramps, spasms, aching, electrical pulses aren’t even as painful and depressing as the realization that there is no cure, that this will be my life.  Caught early enough (usually within 3 months), some treatments may offer short-term or long-term remission, but any injection, surgery, or injury at any time in my life can make the pain spread to other areas of the body and render me completely disabled.  It’s even possible to spread with no trauma.  So any surgery I have to undergo, my doctor has to be consulted beforehand so they can inject something first to try to deter it from spreading or getting worse.

For someone with anxiety, how do you really live and enjoy life even if it were to go into remission?  How do you not fear that any activity you do could get you hurt and risk spreading?  I never thought I’d break my bone falling off the front porch step as it is.  I’ve always been athletic and had a high pain tolerance (and still do actually).  I was in jujitsu for many years.  I got hurt.  I healed.  I was resilient.  Now there are risks with even walking and twisting my ankle.  If my doctor would have given me physical therapy after breaking my foot, would I even be in this situation?  I’m supposed to use my foot and ankle and keep as active as possible so that it doesn’t get worse or atrophy, but I can’t take risks.  Isn’t life a risk?  How do you live a fulfilling life when you are constantly in fear and guarded?  I just want to go hiking with friends, go mountain biking with my husband, take my dogs jogging.  I want to travel.  I want to walk more than a few blocks or a mile.  I want to be out of pain.  I want to have a clear mind, and not have brain fog from meds.  I want to live the life I was finally starting to learn to love.  Now it’s been stolen from me, and I have to somehow find a way to accept and enjoy a new normal, but  damnit, I don’t want to.  I want my old life back.

For now I am in the high-mild bracket, and the doctor wants to do a series of spinal nerve blocks to see if he can help reprogram my nerves and put me into remission. I won’t even get into the price of each one, or how much different experimental treatments cost for this awful disease and how fucked up our insurance and medical system is.  I’ll leave that for another day.  I want to get to a place where I can be positive and hopeful that it can get better, and will not get worse like so many people’s do, but I’m not there.

Maybe one day I can finally write my memoir, be an encouragement for others, or start my own nonprofit, but right now I’m beyond terrified, depressed, pissed, and quite frankly hate myself and my body right now.  I’m not going to apologize for how I feel, and I’ll try not to beat myself up for it too much.

When Your Mind and Body are Broken

While waiting in line at the coffee shop this morning, as part of our Saturday morning routine, one of the questions on one of the tip jars really made me think…after the fact.  Every week they set out two cups, each with its own engaging question for customers to put money in whichever they agree more with.  They are usually pretty silly and lighthearted, but this week, the two cups asked, “Would you rather eat whatever you wanted and not gain weight?” or “Would you rather never feel pain?”  I thought it was pretty ironic considering what I’ve been going through, and mentioned to Lenny that of course I’d rather never feel pain, seeing as I believe I’ve dealt with enough pain for a lifetime the last year plus.  I didn’t think about it again until I sat down to write this, however.  Pain.  It’s a common physiological and emotional response that almost every human feels on a fairly consistent basis, expect for those with Congenital Analgesia (yes, I just looked that up, because I knew there was a condition where people don’t, and have never felt physical pain), and maybe those with specific psychopathologies.  When we are unable to feel physical or emotional pain, it can be dangerous – even life-threatening.  Pain warns our body and mind that oftentimes something is wrong.  It’s an innate response to stimuli we feel and are introduced to it from the moment we are born.  We touch the stove, it burns, we feel pain, so we pull our hand away.  Pain helps us learn our physical boundaries, helps us distinguish safe from unsafe.  We all have our own unique pain thresholds – some high, some not so high.   Some pain is indeed necessary to our survival.  Physical and emotional pain shapes us into who we are, and the painful circumstances we encounter in our lives help to build our strength and character.  A little bit of pain can actually be a good thing.  The key word here is “a little bit.”

Now, what happens when our body or mind’s response to stimuli isn’t normal, but instead “broken” and excessive?  When, we don’t just feel pain, or say, fear, for a minute, an hour, a month, but we feel it for months, years, and perhaps even a lifetime?  When the nerves in our brains and bodies misfire, sending the wrong signals to our brain and body that we are in perceived danger or are feeling pain for longer than we should be?  That my friends is where chronic pain and chronic anxiety come in, and that is the not-so-fun space I’ve been functioning in for quite some time.  Chronic anxiety for a lifetime, and pain for over a year.  I really didn’t intend to ramble on about this, or even write about it, but it made me think (some hours later) about how any emotion or physical response actually has a purpose, until it gets out of hand and becomes chronic and/or uncontrollable.  The chronic physical pain is still a relatively new territory for me that I can’t seem to adjust to or accept, but the emotional pain is not new.

I’ve lived my whole life with misfiring neurotransmitters in my brain that make me obsess and worry tirelessly day in and day out.  It’s not new, and I’ve grown a lot the past few years to where it doesn’t completely control and ruin my life like it did in the past, but the past couple weeks it’s back (not that it ever fully went away, but you get the idea) with a vengeance, and even after 33 years of living with OCD, I can’t control or cope with it when it gets this bad.  I know the cause, but I can’t escape the cause or its grasp right now.  Since 80% of my OCD symptoms center around the fear of getting sick, and the whole world seems to be getting sick with the flu right now, I am an absolute anxious mess. I’ve come into contact with sick people at work, and God knows I’ve come into contact with even more without knowing it.  Now, it’s to the point where I can barely go anywhere because I don’t want to be exposed.  I haven’t been to yoga in 3 weeks, and I refuse to go many places.  I’m trying to hold it together and affirm that I’m healthy and will remain healthy, but everywhere I turn, I either hear, see, or read about how sick everyone is getting and what a horrible flu and flu season it is this year.  I decided today after the millionth post about someone getting sick, to take some time off Facebook, because just reading about it is triggering.  I’ve always hated the winter for this very reason, but this winter is a hundred times worse.  I feel like a prisoner in my own mind, and I know I need to push myself but the worrying and obsessing about being around germs outweighs any fun I may have.  It’s just not worth it.  I worry about not only myself, but Lenny getting sick, because he’s the closest to me and I can’t escape it.  I will be a prisoner in my own home, and will likely get sick as well.  I don’t know how I’m going to escape this winter without a) getting sick, and/or b) losing my mind and having a complete breakdown that I feel I’m just about on the brink of right now.

Pain.  Fear.  It feels so harmless and fleeting to others, but for me, it may never be.

The Good, The Bad, and The Ugly

No, I’m not referring to the movie from the 90’s, because this post is going to be nowhere as entertaining as that movie was.  I just couldn’t think of a better title to sum up my year.  Unfortunately, “ugly” could easily sum it all up, but I can’t overlook the few good things that did happen.  It’s been almost a year since my last post, and there have been so many times I’ve told myself I was going to post something, but avoidance is sometimes easier when you fear writing about what’s been happening will cause you to fall apart further.  For me, there has always been something so vulnerable about writing, and I haven’t let myself fully pour out the vulnerability, pain, and fear onto the screen this year, although I know, more often than not, it’s cathartic. I’m not sure I’m ready to write or that I have anything clever to say, but I’m going to push myself, and that’s the first step, right?

Many of us have had, or will have, a day (or days) throughout our lives that completely change the course of our lives.  Some for the better, and some for the worse.  I’d like to believe that all the circumstances that change our lives for the worse also teach us a lesson; whether it be learning to give up control we so desperately cling to, appreciating what we have (or had), and the opportunity to gain strength and realize just how resilient we really are.  I’ve struggled with finding a lesson this year, however, because I thought I had learned my lessons late last year and I’m not sure what else there is to be learned at this point.  With that said, I will digress and recap the last few months of 2016, so what I’m saying makes more sense.

I didn’t know it at the time, or even months after, but September 25, 2016 was one of those days that completely changed my life…for the worse.  I stepped off our front porch step while taking out the trash, and tripped, causing me to twist my ankle as I came down off the step and land on the side of my left foot in the rock bed that lines our house.  Apparently, I either hit my foot hard enough on the side of the house and rocks, or the force of my body landing on my foot was enough to break my 5th metatarsal.  I was in shock at first as it all happened so fast.  I was unable to walk or put any weight or pressure on my foot, and although I have a fairly high pain tolerance, the pain was unimaginable.  I was put into a non-weight bearing cast for 6 weeks, and after crutching everywhere, relying on others way more than I was accustomed to, learning how to shower sitting down with a bag over my leg (which is way harder than it seems), and contemplating just how amazing two working feet really were, I was finally put into a walking boot for the next 5 weeks.  I had to wean myself off the crutches and learn to literally walk again, which was quite a sobering experience.  As time went on, the easier it became, and the more freedom I gained back.  The pain and bruises that overtook my foot lingered longer than the doctor or I thought it would, but I was making progress, as slow as it seemed.  Finally, after almost 2 months, the pain was manageable enough to start walking in hard-soled shoes.  My foot was far from 100%, which I learned early on that 100% could take up to a year, since breaking that bone is one of two bones in the body that heal the slowest due to lack of blood flow to the area.  There was hope then, however.  I was over the worst, right?  Wrong.

Fast forward to 2017.  I was eager to get back to life as I knew it and get back on the bike, but unfortunately, that was short-lived.  On March 27, 2017, just 6 months after breaking my foot, I re-injured the same foot and ankle. I had not built up enough strength, and since my doctor felt I didn’t need physical therapy after getting out of the boot, my ankle gave out and I twisted it on the little slope in our front yard while walking to the car.  This time I didn’t fall on my foot, but my foot rolled over the cement divider separating our lawn from our driveway.  While I could put some pressure on my foot this time, it was limited and the pain and swelling signaled that it was probably not something that would be better the following morning.  Thankfully, I had not re-broken my foot, and my doctor believed that I had sprained my ankle and instructed me to use crutches for the next week and then wear my walking boot again.  After a week, the pain was still too great to fully walk on it, so we decided it was best to use the crutches for another week.  After two weeks, I could finally walk a little on it, but I was still having issues, so the doctor ordered a MRI because he said it wasn’t normal to be rolling my ankle this often and wanted to check to see if the ligaments in my ankle were loose, which would cause re-injuries like this.  Results from the MRI showed that my ligaments were not loose, but instead, I had a tendon strain near my break (which still had not fully healed), an ankle sprain, and a trabecular injury (which is basically a fancy way of saying a deep bone bruise that is one step away from a fracture).  It became evident that there was no surgical fix that would help me, only time, and physical therapy which was finally given to me this time.

Time, however, has not been my friend this year.  It hasn’t provided the relief and healing that doctors believed it would.  While some of the initial pain improved, I still had pain, and it started moving to other areas in my foot and ankle, despite physical therapy. I also developed nerve issues in both my feet.  I could not be on my feet for longer than a minute before my foot turned bright red and both of the bottoms of my feet burned.  The number of doctors I’ve seen and tests I’ve had performed this year have been overwhelming and exhausting.  Podiatrist, Neurologist, Orthopedic Surgeon, Physical Therapists, Pain Management doctor, and Rheumatologist. A million X-rays, 2 MRIs, a CT Scan, 2 cortisone shots (which only made things worse), an ultrasound, a nerve conductor test, and a million blood tests.  My home away from home is basically the doctor’s, and it’s not only exhausting, but depressing.  No doctor has been able to really help me, and the possible diagnoses I get from 2 doctors, the other 2 don’t seem convinced.  My Podiatrist and Orthopedic Surgeon believe that I may have Chronic Regional Pain Syndrome, which I suggest you don’t Google and research unless you want to be even more depressed.  It’s basically a life-long pain condition you develop after trauma or being restricted in a cast, in which your nerves send pain signals to the affected area (or areas as it can spread in some cases) of the body long after you should be healed.  There is no diagnostic test, besides symptoms, and no cure.  I haven’t talked about it to many people, because I don’t want it to be true.  I don’t want to believe it.  At the same time, it may be easier to have a diagnosis that all doctors agree on, rather than just have “chronic pain.”  The jury is still out on that one, but I hope it is not CRPS.  In October, I started getting bad knee and hip pain, and was referred to the Rheumatologist to check for autoimmune illnesses, like RA.  Thankfully, I don’t have any, although the pain management doctor told me that if I don’t “get a hold of my pain” it could develop into Fibromyalgia.  I’ve been going to a different physical therapy place to work on strengthening my legs and hips, as well as working on my IT Band Syndrome because I have no strength from lack of exercise, etc.  I learned that since I’ve walked differently on my foot because of the pain, my hips are out of alignment and drop as I walk, which could be the cause of my severe knee pain.  I’d like to say physical therapy is helping, but sadly it is not…at least not yet.  I have developed inflammation in the head of my 5th metatarsal which could be what’s called a Tailor’s Bunion, and it has been very difficult and painful to walk on my foot.  My doctor said I could get the bone shaved down, but he’s nervous to do any kind of surgery on my foot because of my nerve issues and pain.  If it continues to bother me, however, it may be worth it, but then I run the risk of starting all over, and what if it makes things worse?

Anyway, I could go on and on about all my pain and health issues that have completely consumed my year.  It’s such a hard journey and it really messes with your mental health when pain is chronic and you see no end in sight.  Depression has weighed heavy on me this year, and I’ve truly gained a deeper understanding of how fragile life (and our bodies) can be.  I always knew my cross to bear was my mental illness, but I always had a pretty strong, resilient body.  To see your body fall apart and fail you is extremely difficult.  I never thought I’d be 33 and dealing with chronic pain that interferes with my life.  You really do mourn the life you had before and the activities you enjoyed doing that are harder to do now. Somehow, I have to find a way to accept and deal with it though.

I wish that this was the end of the “ugly” 2017 presented to me, but sadly it was not.  The hardest, most painful thing I’ve ever had to experience happened this year.  It’s still too raw and painful to write much about, but we had to put my baby to sleep on July 15th.  For the last year or so his health really declined.  He was having problems walking and getting up, and became incontinent.  It’s never easy to see someone or something you love decline before your eyes, but it’s even harder when you have OCD and you have spent the last few years worrying and obsessing that he was going to die.  Although his health was rapidly declining, and the anxiety and pain I felt was excruciating, we felt that he wasn’t in too much pain; not enough to warrant putting him to sleep just yet, and we made many sacrifices to make his life more comfortable.  There were many long, agonizing nights we discussed (and cried over) the options, but always hoped that he would let us know when he was ready to go.  I didn’t want to make that choice and then live the rest of my life worrying that it was not the right one.  Thankfully, I didn’t have to make the choice really, as he let us know when he was ready.  It happened suddenly one evening when I got home from the doctor’s.  He had been okay that morning, but when I got home, he was unable to walk or get up on his own, and in the course of a few hours was clearly dying before our very eyes.  He couldn’t lift his head, and I could tell by looking in his eyes that his time had come.  Seeing him cry and suffer was the absolute worst pain I have ever felt, and I knew that I had to let him go.  I couldn’t see him suffer, and I knew that there was no coming back from this. Saying goodbye was the ultimate hell.  Leaving the vet without him was a pain like nothing I had ever felt before.  He’s been my best friend since I got him at 4 months and has been through the deepest pits and highest peaks with me.  He slept by my side the many times I thought I couldn’t go on any longer, and shared in many fun adventures with me.  People say some people are blessed with one soul dog in your life, and he was mine.  He wasn’t just a dog to me, he was my child.  We were spiritually connected, and I know that he waited until he knew things had finally fallen into place in my life, to cross the rainbow bridge.  I had finished college, started a great job and got promoted, and was finally in a place where my mental illnesses didn’t completely control me.  I was healthier, and he knew, and waited, and for that I will always be eternally grateful.

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It’s been a very rough 5 ½ months without him, and I still cry and miss him like crazy.  It seems like so long ago and yet just yesterday that he was here with us.  I wish he was here to snuggle, make me laugh, and comfort me on my darkest days, like he was always able to do.  I know he’s in a better place, out of pain, rolling and tramping through the snow, but selfishly, there’s not a day that goes by that I don’t yearn for him.  He will always have a very large piece of my heart that will never be filled, and that’s okay.  That hole, that pain, is the price we pay for loving something so fiercely, and I wouldn’t trade any of my 14 years spent with him for anything.  For years I believed that when he died I would die too, and I truly feared that, knowing my history of being suicidal, but like I said in the beginning, pain really shows us how resilient we are.  Life has continued on, whether I want it to without him or not sometimes, and I must live on for him, because I know he’d be pissed if I ended my life.  We live on despite the pain, and learn to make the best of awful situations as best we can.  I’ll write another post about this soon, because I feel too drained now.

Despite the “ugly,” some good things did happen.  I started a great job at the beginning of the year that I really enjoy and am grateful for, and got promoted after only 5 months.  It feels great to be doing something I like, feel appreciated, to work with such an amazing team, and grow my skills and knowledge.  I have faith that there are more good things on the horizon at work this coming year.

My brother got married to a wonderful woman, whom I am happy to call not only my sister-in-law but good friend.

My dad got married in June, to a great woman, who treats us like her own, and makes my dad very happy.  My Dad and Stepmom moved to Utah in November, which is very hard because my dad has always been 5 minutes away, but I am happy for them, and glad we got to spend Christmas together again this year.

I don’t know what 2018 has in store for me, but I can only hope and pray that it is less pain, both physical and mental, less doctor’s appointments, more answers, more healing, and more time spent doing the things I enjoy with loved ones.

When OCD Attacks the Things You Love Most in Life

OCD, a three-letter acronym that many throw around and perceive as harmless; a mere minor annoyance, is anything but that.  It stands for so much more.  So much intense pain, tears cried, anxiety-ridden days and nights, battles waged in your mind, lost moments, and lost memories.  It’s an acronym that hides how utterly insidious this disorder is; lurking beneath the surface, waiting for the least opportune time to strike and rip any amount of available fight you had left within you from the last battle.  You’re left beaten and bloody, devoid of strength, but still you rise, clean yourself up as best you can, and wait.  You wait, riddled with anxiety, a lacerated heart pounding a million beats per minute, and on guard, for the next time it grabs hold of you.  It might be seconds, hours, or days later, but it’s guaranteed to come back and play its sinister game with you again.  You’ll think you’re ready, armed with years of tools and knowledge, but it always has the upper hand, no matter how many times you’ve engaged with it.

The thing about OCD few realize, is that it has this innate characteristic of attacking the things you love most in life.  For me, OCD has morphed itself into many forms throughout the years, but the most agonizing is the intense anxiety and fear that my dog is going to die.  It mutated into this crippling obsession several years ago, while my dog was still healthy and relatively young.  I’m not sure where or why these thoughts came about, but I couldn’t stop them, and I still can’t.  There were periods of time they weren’t as penetrating, where I could more easily push them away, and other times, I’d randomly break down crying for an hour at a time, overcome with obsessions and anxieties that he was on his way out.  To lose him has always been my biggest fear.  They say a dog is man’s best friend, but for me this is an understatement.  He’s my life, the reason I’ve made it through so many periods I swore I’d never pull through.  He’s the source of so much happiness and laughter, a soft, furry, warm place to cuddle, and a healing source for my soul.  I feel, we’ve always been kindred spirits, and that he “gets” and loves me just the way I am—scars and all.  Being his mom has never been a chore—it’s always come quite easily to me.

Here in lies the complexity and depravity of OCD. It exploited all the love and wonderful memories my dog and I have shared, and transformed them into such intense, painful obsessions.  The fear of him dying has taken me out of the moment; the moment I should be spending with him, too many times to count.  It’s robbed and tainted the last few years of his life with such relentless, tormenting obsessions and anxieties.  Now, he’s years older, his health has rapidly declined the last eight months, and my OCD has intensified to the point of becoming almost paralyzing.  I analyze and obsess about every move he makes.  It’s hard enough watching someone you love deteriorate right before your eyes, but I dread coming home after work or waking up in the morning, for fear I will find him unable to get up on his own, or worse, dead.  I find it hard to leave the house, go to work, or partake in any fun activities with friends, for fear he will be all alone suffering, and not be alive when I return.  Almost every day now is spent in tears, because it simply becomes too painful and intense to think about constantly, too much to fight against, and too depressing and exhausting to feel like every day you’re losing the war and another day with him. It continues to rob the time I still have left with him, and I know when his time does come, I will never forgive myself for all the moments we could have shared and the memories we could have created if I weren’t busy obsessing about losing him.  How ironic, counterproductive, and absurd, but hey, that’s the nature of this disorder.  How beautiful and freeing it must feel to simply enjoy and be present in a moment, without being attacked, without fighting endlessly with your mind day-in-and-day-out.

After a lifetime of therapy, I know I’m supposed to fight against my obsessions and anxiety, by changing and reframing my thoughts, but old habits don’t die easily, mental battles rarely are won on this front, and some days it gets so bad that I guiltily think that I’d rather he die, so I wouldn’t have to obsess about it anymore.  Maybe I could have some of my life back.  Maybe I wouldn’t live in a constant state of anxiety. Of course, that’s the last thing I want, because I don’t know how I’ll be able to go on without him, but when you’re in your own private hell, the thought seems comforting at times. It’s like grieving a loss years before it’s even happened.  It’s losing someone you love so much every day, without them ever having left, and then waking up and doing it all over again.

The good moments and memories are hard to find amidst the heart wrenching pain, anxiety, and obsessions.  They are hidden, like an old chest tucked away for years in the attic.  They rest beneath layers of old ratty cloths, dust, and dirt, rendering them disguised and difficult to excavate, but I’ll keep searching, and I’ll tirelessly continue trying to uncover what should never be forgotten.

I won’t wave the white flag just yet.  I’ll keep fighting for my sake, and for my dog’s sake, for I owe him that, seeing how greatly he’s enriched my life these past fourteen years.

 

Looking Back in Contemplation and Forward with Hope

Most people are probably out celebrating New Year’s Eve with friends, but that doesn’t really interest me at this stage in my life.  Instead, my tradition is to sit down, contemplate, and write down my thoughts about the year.  It seems that all I’ve been reading lately is how awful 2016 has been, and while I’m sure it’s been difficult for many, it was actually a pretty good year for me compared to years past.  There were definitely many challenging days, weeks, and months, as there always will be.  I believe, however, it’s important to acknowledge the hard times so we can learn and grow from them.

I’ve struggled a lot this year with my obsessions and anxiety regarding Sully dying.  At times they’ve been debilitating, especially since he’s seemed to have had a lot of problems and unfortunately, has really aged a lot in the past six-to-seven months (which further feeds into my obsessions, anxiety, and depression).  I struggled with school coming to an end–feeling that void.  I watched with a heavy heart as my grandma’s precious belongings were sold to complete strangers, and felt the longing and sadness as the one year anniversary of her passing came and went.  A couple good friends moved away, and I miss them.  I broke my fifth metatarsal on my left foot in late September, and was in a non-weight bearing cast for six weeks, a walking boot for another five weeks, and continue to deal with pain and problems from my break. I got close, but not close enough on many job interviews I was hoping to land.  However, despite my struggles, positive aspects have come from my hardships, and plenty of good things have happened this year.

I’m sure I will miss many things, but here are a few highlights that come to mind as I look back on the year:

  • I finally graduated with my BA, and not only that, but I graduated with honors. Walking across that stage to receive my diploma and honor’s medallion was probably one of the best days of my life, second only to my wedding and engagement.  All my hard work finally paid off, and I accomplished something I wasn’t sure I was ever going to be healthy enough to accomplish.  Those two-and-a-half years were some of the hardest of my life, but they helped me grow and realize my true strength like never before.  Knowing my grandma would have been so proud of me, and getting a visible sign that she was watching, was icing on the cake.
  • I am blessed to have celebrated another year with my amazing husband and dogs, as well as many fun times spent with family and close friends.  Over the summer, I spent a day riding downhill for the first time at Big Bear with a friend and a big group of fellow lady mountain bikers, and had a blast.  A good friend introduced me to a lot of new adventures and our friendship has bloomed into something beautiful.  I try to never take for granted all the dinners, fun, and deep conversations I spent with those I am close to, and I look forward to many more in 2017.
  • I went on an amazing vacation with some family to Hawaii in June, experienced some amazing new adventures, had quality time with those I love, and witnessed my little brother get engaged to a great woman all in the span of a week.
  • I was gifted an awesome new mountain bike from a friend, which I am eager to ride again (since I broke my foot shortly after).
  • A family health crisis turned out to be the very thing that saved their life, and the outcome was a blessing.
  • I started freelance copy writing, and had an article published in The Mighty.
  • Breaking my foot forced me to try to learn how to be more patient and reliant on people for help (since I couldn’t walk and had to use crutches for five weeks).  It helped me continue to learn never to take anything for granted–especially the huge blessing of being able to walk, which I had to relearn, and am still working on.
  • I was offered and accepted a job in early December, which I start on January 3rd. This will be a huge change for me, and I won’t lie and say it isn’t terrifying, but I am so grateful for the opportunity to grow in my career, as well as personally.  Leaving my job and friends of seven years was not easy, but I know it was what I needed.  I put myself out there, got turned down numerous times, but kept trying, and consequently landed a great opportunity that I hope will be nothing but positive.
  • I’ve grown and progressed in my mental health and continue to realize how strong and resilient I am.  There were many days I was so anxious and/or depressed that I wanted to crawl into bed and hide forever, but I didn’t.  I still have a long way to go, but each year I continue to grow, and for that I am incredibly grateful.

I’m sure there are a lot more positive highlights I am forgetting, but that’s part of life.  We tend to forget and take a lot of our blessings and positive experiences for granted, instead focusing on all the negative and painful moments.  I hope that in 2017, I can live more in the moment and remain more grateful for all the good times with family and friends.  I pray for continued strength to weather the hard times, growth so that more of my days can be spent without crippling anxiety and obsessions, precious memories and time spent with loved ones, and good health for the coming year.

What Winter Months Are Like With Contamination OCD

Ever since I was around the age of nine, I’ve been terrified of, and extremely anxious about, getting sick.  I wish such simple adjectives could adequately describe its hold on me, but words are never able to effectively communicate what goes on in the mind of someone with Obsessive-Compulsive Disorder.  As much as I adhere to the idea that words are powerful agents, (after all, I am a writer), words always fall short when trying to articulate the irrational obsessions and compulsions to others, especially while in the midst of an intense anxiety attack.  Especially during the winter.  This obsession and fear of getting sick was the first of many obsessions that I’ve been unable to fully overcome. Contamination OCD is perhaps one of the most popular and visible forms of OCD broadcasted in our media today.  Almost everyone attributes extreme hand washing to OCD, which is true, however, this also stigmatizes this debilitating disorder. Not everyone with OCD, or contamination OCD, wash their hands for hours at a time.  For me, I’m most worried about catching the stomach flu, and to a bit lesser degree, a flu or cold. It’s kind of ironic that as I sit writing this, I currently have had a cold for the past week.

Not a day goes by that I don’t obsess, worry, and get anxious about getting sick to varying levels, but it’s especially difficult and anxiety-provoking during the winter months.  As soon as I see advertisements that flu shots are available, I know that I am in for a rough few months ahead.  I worry about getting sick even when I don’t personally know that anyone around me is sick, but that obsession drastically increases when I come into contact with someone that is sick.   Unfortunately, this happens to occur most during the winter. Don’t even get me started on the hell the OCD puts not only me, but my husband through, if he happens to get sick, which thankfully is not often.  If someone I am around is/was sick, I will bother them with endless questions until I annoy not only the other person, but myself in the process.  I am aware I am doing this; that it is irrational and extreme, but I cannot stop.  I cannot let it go.  I cannot just move on and forget it like others do.  Sure, no one likes getting sick or being around someone that is sick, but it doesn’t infiltrate their brain and make them unable to think of anything else.  The anxiety and fear doesn’t paralyze them, rendering them hopeless and distraught.

Unlike the media portrays, I can shake hands, hug friends (if they aren’t sick of course), and I don’t spend endless hours washing my hands and showering.  I do, however, ask and plead for reassurance that I am not sick, or that I’m not going to get sick (which is frustrating for not only the recipient, but me as well, since I know that no one knows the future). I use a substantial amount of hand sanitizer, avoid crowds, and perform a variety of other compulsions to try to ease the debilitating obsessions.  It eases the anxiety for a very brief instant, but like clockwork, the anxiety always comes back.

Yesterday, I spent all day in stores and at the mall, shopping for clothes for my new job I start in a few days, and I must have used a whole bottle of hand sanitizer.  All the stores were crowded, being as it’s near the holidays, and I am almost certain I heard every cough, every sneeze, every conversation (I was not even a part of) between others, discussing how sick they were.  I don’t want to have this radar that hears and sees all the sick people that no one else even notices.  Sometimes it’s better to know so I can avoid them, but sometimes, ignorance is less debilitating.  I not only left my shopping trip with very few things, which means I have to try to build up the mental and physical strength to brave the crowds full of germs and sick people yet again.  I also left feeling mentally exhausted, riddled with anxiety and obsessions, and frustrated with myself that I allowed this seemingly “normal” activity for others to completely destroy me.  I didn’t just go to bed and forget what happened; I woke up today just as anxious, calculating the expected day that these germs would attack my immune system and cause me to get sick. Cause me to miss my first day of my new job.  Cause me to get fired.  You see, OCD is similar to playing a game of dominos.  Tapping that first domino doesn’t just cause that single domino to fall.  That one domino hits the next, which hits the next, until they all lay scattered and astray.  That’s how my brain works.  One obsession rapidly leads to the next until the end result is drastic and oftentimes absurd.  I know it’s not rational, but convincing my brain to believe that and actually listen is another story entirely.

Winter months are wrought with germs and sick people, and for me , wrought with worsened Obsessive-Compulsive Disorder and anxiety.  Coincidentally I never seem to make it through winter without getting sick. I have improved throughout the years, but winter always seems to push me back to periods when it was its worst during my childhood.

At my worst, I wish I could avoid everyone and everything and live in a bubble, but also know I’d miss out on all the positive experiences life brings as well.  I’ve already missed out on so many opportunities, lost friends, and caused it to completely overwhelm my life, despite twenty-three years of therapy and medication.

I must, despite my tremendous amount of anxiety, push myself to keep fighting, keep challenging my anxiety and obsessions, keep moving forward.  I need to not let it rule my life, and take my power back.  It’s a struggle I will fight the rest of my life, because I know it will never fully go away, but I hold out the hope that one day it won’t have so much control over my life.  In the meantime, Spring can’t come soon enough.