30 TRUTHS IN 30 DAYS - DAY TWELVE

Truth #12: Many times people who struggle with chronic pain become adept in covering it up. You may never see the magnitude of actual pain the person lives with daily and if you did it would shake you to your core. Chronic pain is exhausting and it touches every aspect of a person's life. Chronic pain sufferers are chronically sleep deprived. Sleep would be a welcome relief, but unless heavily medicated a chronic pain sufferer will also suffer from insomnia. Many chronic pain sufferers have addiction issues and ride that roller coaster in search of relief. Chronic pain will drain a person both mentally and physically changing a person over time which can lead to other health problems. Often times this person becomes irritable and dislikes being around people, commotion and noise. Chronic pain damages a person's concentration and makes doing even simple tasks a challenge at times. Most chronic pain sufferers try to ignore the pain and live a normal life, but doing that is next to impossible. Chronic pain damages a person's self-esteem and self-worth because the person cannot do the things they have done in the past. A chronic pain sufferer sees themselves as damaged goods thus less than everyone else around them. They are forced to accept their limitations and this causes great internal strife. Often times they feel like everyone is disppointed or mad at them for not being 100% anymore because they feel that way about themselves. Chronic pain breeds isolation and severe depression and sometimes chronic pain sufferers take their own lives when the mental and physical pain becomes unbearable. 

WHILE OTHERS SLEEP, I WEEP

Since my asthma attack that landed me in the ER a few weeks ago, I've had ongoing, daily panic attacks.  My mental state has deteriorated and sleeping has become an increasingly difficult task. In the past my bouts of insomnia always seem to cycle themselves out, but this time it seems stuck on high gear with no end in sight. I keep asking myself where did these panic attacks come from. I've never had them in the past and why I'm dwelling on death.  It never bothered me before and now I can't seem to escape its clutches. These panic attack seem to come out of the blue with no apparent trigger and when they hit, I lose all ability to calm myself down or to think rationally.  My thoughts are completely focused on the panic attack like an obsession...it's as if I'm wearing blinders and what I see is a very narrow, scary view of life.  I weep, shake and pace.  I'm overwhelmed with the fear of losing control and slipping away forever in some psychotic world. I am, however, one of the fortunate ones because I have people who love me and who will help me regardless of what that help entails.  I know it's no fun sitting with me in ER's at all hours of the day and night and at doctor's offices.  By the way, why don't any doctor's offices have comfortable chairs or better reading material?  I try very hard to keep telling myself that I'm not being a burden to anyone.  My family loves me and wants to see me get well, but it's hard not to listen to all the negative dialog going on inside my head.  I wish I had an on/off switch and since I don't I'm at the mercy of going through some rather agonizing episodes of negativity.


In the last few weeks I've learned many things...most of them are things I'd rather have been kept in the dark about than to have learned them through first hand experience. 

1. It seems anything regarding mental health facilities are a huge clusterfuck.  Shouldn't it be organized and welcoming to set the patients minds at ease? Yet the places seem oppressive and upon entering it sucks the life from you.  Everything seems so sterile right down to the color schemes and layout of the rooms. Everything about it screams, "RUN!"
2. People using mental health facilities are scared, anxious and filled with many negative things and need friendly, helpful people working at the facility they use.  While Nurse Ratched was an integral part to the One Flew Over The Cuckoos Nest story, she has no place in real life and shouldn't be working at any place involving mental illness.   
3. People using mental health facilities too easily lose their "human" status as soon as they become a patient. Why is suffering from a mental illness any different than suffering from a physical illness? The difference I believe is in the eyes and attitude of the beholder and of the caretakers.
4. Because mental illness carries such a stigma, it's easy to become just a diagnosis, a case number and nothing more.  People too easily lose their identity and become a page from the DSM-V.  Too many mentally ill people have lost their ability to fight or stand up for themselves.  When I look at myself I don't see the person I was 20 years ago...a person who had wind in her sails and was going places. 
5. Regardless of what mental state a person is in, unless they have a specific, detailed plan for suicide, the person will be sent home and referred back to their primary care doctor who in turn is supposed to refer them to a psychiatrist. The process for help is way too long and complicated!
6. Help for someone in crisis is not immediate and because it isn't immediate it makes holding on all the harder.  It makes having faith in the system nonexistent. 
7. It's difficult to believe and trust others especially strangers who don't seem sincerely interested in your welfare.
8. Things that happened 40 years ago can seem like they just happened. Grief, fear and pain comes in waves and sometimes those waves are like a tsunami.
9. While primary care doctors are good at what they do, treating mental issues is not their forte and they seem to be clueless as to what the person really needs and how to help them.
10. Public mental health facilities run by state or county agencies usually are a scene right out of One Flew Over The Cuckoos Nest.  At best, my first impression was dismal and scary and I really did keep looking for Mildred Ratched until I found her. 
11. It's very easy to feel like one of the cows being herded through a system that seems surreal at best. I kept finding myself wanting to "Moo"....really!
12. Keeping a medication diary has been a blessing for me.  It's the only way I've been able to keep track of what meds I take and when I take them. Simple tasks have become confusing and meaningless for the most part.  I'm afraid it would be too easy to take an accidental overdose because I can't think straight most of the time.
13. If you're able to find something that helps calm you down, regardless of what it is, go with it and use it...self-help sometimes is a person's strongest ally.  For me and I know this probably makes no sense, my son takes me for a drive when I'm having a panic attack.  Somehow the combination of that and an Ativan helps. 
14. I've denied, ignored and covered up being depressed for years until it's gotten to the point of me losing the ability to function normally and do daily tasks like brush my hair, get dressed, go outside (I have to force myself to go places), take a shower and interact with people face to face in a meaningful way.  I've become a hermit because it feels safe being a hermit, but I hate being a hermit because it's not who I am.

It's daylight now...it's time to go take more meds and let the dogs out.  At least they like going outside.  Maybe I need to become a dog so I can feel normal once again. 

I CAN'T BREATHE!

When dealing with a chronic illness or illnesses, that condition slowly becomes a person's entire life and effects everything a person does and doesn't do.  Sadly, it's how you identify yourself because all the other parts even the outstanding, wonderful parts seem to dwarf in its presence.  Since 2002, my list of illnesses has grown immensely.  It's as if my body and its functions have been kidnapped and ransacked by some perverse domino effect.  I jokingly tell people that I've inherited all the worst genes from both sides of my family, but the truth is that it isn't a joke at all.

A few years ago after a returning from a trip to Central America, I came down with the swine flu.  It was at a time when the flu was just gaining momentum and was in the news everywhere.  The swine flu itself wasn't that bad, but it left me with a cough so bad that it hung on for 3 months after all the other flu symptoms subsided.  After countless rounds of ineffective antibiotics, I was finally diagnosed with adult onset asthma.  I was told that sometimes a virus like the flu will bring on asthma in an adult.  Although I was relieved to find out what was wrong with me, struggling to breathe on a regular basis wasn't something I wanted to deal with, but I have to admit it was better than thinking I had something far worse than asthma.  During my 3 month fiasco, I had many breathing treatments because the cough I had was so bad at times I couldn't catch my breath.  It felt like I was trying to cough up a lung and because the cough was so severe I even broke a rib from the strain coughing put on my chest.  When this episode finally passed, I rarely had to use my inhalers and I got to the point that I questioned if my diagnosis had been accurate.

I questioned that diagnosis right up until Tuesday night.  I had gone upstairs to get ready for bed which included taking all my nighttime meds.  Shortly after doing my normal routine, I started feeling a tightness around my mid-section.  That tightness increased and as it increased my breathing became more labored.  My son and I scurried to find my inhalers.  Oh my God, (not an OMG, but a full blown OH MY GOD) where had I put them?  It had been so long since the last time I had to use them.  I religiously to carried them in my purse, but I had failed to put them in my new purse when I had bought it a few months earlier.  Thank goodness, I had unopened ones in my nightstand.  By this time, I was in a full blown panic and I was really struggling to breathe, but the 2 inhalers (Symbicort and Pro Air) didn't seem to be do anything to relive my symptoms.

It became obvious that I needed medical attention because nothing I did was helping.  As I struggled to breathe, the anxiety I felt deepened.  I had lost all ability to calm myself down.  My son finally made the decision to call 911 and by the time the EMT's arrived my heart rate was over 130 and my vision had stars in it...I'm assuming that was from lack of oxygen.  But regardless of my condition, I was unable to sit down or lay down.  All I could do was pace and walk in circles while talking and flapping my arms so nothing could get close to me.  I insisted that I walk to the ambulance because laying on a gurney seemed to be an impossible task to accomplish.  Once inside I felt trapped, but the EMT's were versed in how to deal with difficult people making little to no sense. 

They convinced me to at least sit on the gurney while they examined me, hooked me up to oxygen and started an IV.  Before reaching the ER, I received a breathing treatment which helped open everything up and improved my oxygen levels. By the time I reached the ER, I had both feet on the gurney and although I couldn't lay flat and relax, I had lost that overwhelming need to pace and act like a crazy person.  As my anxiety started to subsided, the albuterol left me wired up and dried out so I still was having trouble relaxing.  After being released from the ER in a stable condition and being told I had most likely experienced an asthma attack and a panic attack on top of it, I was left with the difficult task of winding down enough to go to sleep for the remainder of the night.  One might think after all I had been through, I'd be totally worn out and ready to sleep, but you see, leading up to this attack I hadn't slept for over 2 nights.  Insomnia and I have a quite intimate, ongoing abusive relationship.  It's not one that I like or want, but like any person in an abusive relationship, it's a situation I feel trapped in without any clear way out. 

I stayed awake until sometime into the next day when I just couldn't keep my eyes open any longer.  Since then I've struggled with sleeping, eating and staying calm.  I have to admit I'm frightened a lot of the time and start to feel anxious, but one good thing has come from this experience and that's that it's left me more in-tuned to what my body is trying to tell me. In the past, I have continually ignored all the indicators that I was doing things the wrong way.  Just call me stubborn, foolish and hard-headed! Because I have to push myself to eat now, my blood sugar has been better than it has been in awhile.  Also, actually sleeping has helped bring my blood sugar down.  Most people don't realize that many factors effect a person's blood sugar. Yes, a proper diet is essential, but stress, sleep, exercise, medications and other factors effect a person's blood sugar as well.  The trick is to get everything in harmony so your body can function normally.  Although the "N" word is normally negative, NORMAL in regards to body functions is a good thing and in this area normalcy is something I need to strive harder to obtain.  With that said, it's 9:03pm and I'm going to get ready for bed. Let the sheep counting begin...

THE BEAST WITHIN ME

As this year winds down, it's time for me to reflect on the things that affect my life the most.  In the past several years, my health issues have worsened, but I think I've finally gotten to the point of being so sick and tired of being sick and tired that it's time for me to dig down deep and grab whatever stamina I have left and try to save this slowly sinking ship.  2014 has got to be a year of change! Great things have got to happen!

Here's a list of my current health problems:

1. Insulin dependent Type ll Diabetes - uncontrolled, of course!  No doctor in the past 11 years

since I was diagnosed has been able to get my A1C in a normal range.  Trust me, EVERYTHING has been tried and it remains a mystery as to why my diabetes is so tenacious.  I wonder if it might have a genetic factor to it since my paternal grandmother had the same type of tenacity with treating her diabetes.  As an added bonus of my uncontrolled diabetes I developed diabetic neuropathy in my feet.  The burning sensation and stabbing pain is so bad at times it makes me want to cry.  Standing on my feet during these bouts is challenging and very painful.  Recently, I was put on Lyrica and that initially helped with easing the neuropathic pain in my feet and also with the "all over" pain I experience from fibromyalgia I was diagnosed as having about a decade ago.  My other diabetic related health problem is gastroparesis. Gastroparesis is another fun diabetic complication!  Food sits undigested in my stomach for long periods of time due to damaged nerves in my stomach.  It's hard to describe how good food tastes when it goes down and how putrid it is after sitting in my stomach for a day or so.  This condition causes pain in my upper gastric tract.  Needless to say, I eat A LOT of cottage cheese and applesauce which is easy to digest.  I do feel thankful that I haven't developed anything more serious as a result of my uncontrolled diabetes and hope my upcoming endocrinologist appointment will be a start to finding a solution to these problems. 

 

2. Pain - I'm lumping all my various spinal related issues into one large category called "PAIN".   In 2003, I had 2 disks in my neck fused.  At that time, I was told I had the neck of a 94 year old woman and was told I had several things going on with my back and neck.  After that surgery, I swore I'd never have another surgery because the recovery was so difficult.  "Never" lasted 9 years.  By the time I had my second neck surgery, I couldn't raise my head to eye level without it causing my arms to go completely numb.  It was next to impossible to function without the use of my arms and I knew the longer I put off surgery the more permanent the nerve damage was going to be, so it was back to the neurosurgeon to have 2 more disks fused.  From September 2012 to June 2013, a nine month period I had 3 back surgeries.  My neurosurgeon claims there isn't anything else he can do for me, so basically, I'm supposed to just grin and bear it but grinning and bearing it consists of days where I can barely walk or stand up straight due to the intense pain.  I have severe headaches from the muscles in my neck and back tightening and causing horrific muscle spasms, nausea and blurred vision.  I know I need to go get a second opinion, but I'm really afraid to do that.  I keep asking myself what I'm afraid of and I don't know if it's that someone will agree that there's nothing else that can be done for me or if someone will say I need more surgery.  Of course, I see a pain management specialist, but all that means is getting combos of potent narcotics to take.  I so hate doing that, but am forced to take the pain meds when I can't function any other way.  In 2009, I went off ALL my pain meds cold turkey because I wasn't getting the relief from them I should have been getting.  It was insane to keep filling my body with meds that were doing more harm than good.  Withdrawal took about a month of pure hell. Now 4 years later, I'm right back there again and the doctor wants to try me on what I call the "Dear Jesus" patch (Duragesic)  or Methadone because everything else I take or have taken just doesn't work.   I'm not sure how I feel about taking this next step.  I'll mull it over in the next couple of weeks before my next appointment with him and make some sort of decision. 

3.  Autoimmune hepatitis - The 3 most common autoimmune diseases are lupus, rheumatoid arthritis and Crohn's disease.  Apparently my body has decided it doesn't like my liver anymore.  Isn't that special?  Too bad it didn't decide to dislike the fat on my stomach and hips instead!  After having a complete work up (CT of the abdomen, abdominal ultrasound, labwork, etc.) followed by a liver biopsy, my doctor thought it was best that I go to Oschner's Clinic in New Orleans.  It's the closest transplant facility to where I live.  He felt it was a good idea for me to get in their system in case at some future date I need their services.  The following is a short rundown on what an autoimmune disease is if you're not familiar with it.

Our bodies have an immune system, which is a complex network of special cells and organs that defends the body from germs and other foreign invaders. At the core of the immune system is the ability to tell the difference between self and nonself: what's you and what's foreign. A flaw can make the body unable to tell the difference between self and nonself. When this happens, the body makes autoantibodies that attack normal cells by mistake. At the same time special cells called regulatory T cells fail to do their job of keeping the immune system in line. The result is a misguided attack on your own body. This causes the damage we know as autoimmune disease. The body parts that are affected depend on the type of autoimmune disease.

4. Sleep apnea -  Controlled with the use of a CPAP machine. This one I got scared into doing because my O2 stats had dropped to 73% while sleeping (anything under 90% is considered respiratory distress) and I had stopped breathing over 150 times per hour determined by a sleep study, but the good news was that I had also started breathing again over 150 times.  When the doctor reviewed the results of my sleep study, he was amazed that I hadn't had a stroke or a heart attack in my sleep.  That night I started using my CPAP machine and have used it every night since then.  I am a believer!

5. All the other "lesser" stuff - high blood pressure (controlled by meds), high cholesterol (controlled by meds), Vitamin D deficiency (in the process of being controlled by meds), GERD (controlled by meds), chronic insomnia (uncontrolled, but I do take Trazodone and it works sometimes), adult onset asthma (controlled by meds PRN)  I'm sure I've missed something, but quite frankly, my dear...I don't give a damn right now!  I'm off to take a nap because all of a sudden I desperately need one.

Update 2/19/14: I've been on 2 more rounds of 3 months of Vitamin D therapy but my lab values refuse to improve.  I have an appointment with an endocrinologist to address that and my diabetes.  I think I'm falling apart!

6. Depression and anxiety - This is something I've been in denial about for such a long time, but it's the silent, dark horse I ride.  I isolate myself so I don't have to be around people because I don't want them to see me suffer, but isolating myself is the worse thing I can do.  I know depression makes all ailments feel worse, but to treat it means taking more drugs and many of those drugs cause weigh gain and any weight gain makes my diabetes worse.  It's a vicious circle that seems to have no jumping off point.  I no longer know how to help myself.  At this point I don't know if there is any real help.

THE 4AM HEARTBURN

I drifted off for a short while and when I awoke I immediately started thinking about love. Am I in a relationship? NO! Do I want to be in a relationship? Not really! These thoughts running through my mind were quizzical ones as I taxed my memory trying to see if I could actually remember what being in love felt like. I could vaguely remember a giddy, excited sensation. I could remember a smile, a look, a touch, but then so many bad things came flooding back smothering the "almost" memory I was having. I finally had to admit to myself that I really doubt I have ever felt love and if I did, that feeling was, but a fleeting glimpse.

At this point in my life, if "it" hasn't found me, I doubt it will. And so what? Who cares? I wish someone would tell me that I'm not missing much and that there are worse things in life than being alone....like being with the wrong person (wait a minute, that's my line I say to everyone!) So here I am at almost 4am typing away about a topic that frustrates the hell out of me. Would finding love and being in love magically transform me? (Yeah, right!) Would it make me sleep? (Great sex might!) Would I feel at one with the world? With the universe? Om! nam-myoho-renge-kyo, nam-myoho-renge-kyo, nam-myoho-renge-kyo (faster and faster until life is just a blur and I fade into the cosmos)!

Gratitude statement: I'm thankful for the actual heartburn I have right now because for that I can take a couple of Tums.

FEATURED YOYO

Please allow me to introduce myself!

Any insomniac, addict, mentally or emotionally disturbed person or anyone who has ever been in dire straits and is at the end of their rope with nowhere to go is well-acquainted with temptation, self-indulgence and pleasure seeking behaviors. Satan, imaginary or not, comes in many forms and touches the lives of the most desperate. We are his army, the hedonists of the world. Even when we are not capable of feeling pleasure, there is the memory of pleasure and what a driving force that can be. To love one more time...to feel the pleasure of carnal knowledge and fleshy delights one more time, to experience whatever revs your engines and gets the juices flowing...the ultimate mind candy! Perhaps, he, the undoer of all good is the "secondary gain" (see previous post) keeping all questionable, unhealthy behaviors afloat.


Gratitude statement: I am thankful to be a survivor!