Inspire Me…

I actually Googled “How to be inspired”.  To say I got an interesting variety of horsesh!t would be an understatement.  Everyone claiming to know the ins and outs of Inspiration.  Well don’t look at me.  Simply as a human I’ve had moments of inspiration, as a mother, as a friend, a wife, a woman and even as an artist.  They give you “the 5 steps to being inspired every day…”  ”How to get inspired…” “How to become INSPIRED…” Everyone knows that if you put it in capital letters it means it is more important, more earnest, more truth.

I think that inspiration, true inspiration has to come from within.  The spark of that inspiration can come from anything, there are no limits.  It could be by simply varying your daily routine, stopping to talk to someone you’ve don’t know, or asking a outrageous question to someone you thought you knew so well. It could be from stubbing your toe — even creative language counts.  I’ve hear some awe inspiring successions of curses when someone is emotionally compromised weather it is the coffee table or road rage.  I believe I’ve had a few of those inspiring moments often once the initial inspiration is over it has ended in laughter for me.  Which is always inspiring.  You see what I mean.  Inspiration is in the moment.

Although this is something that is with us every second of every day it is extremely [you know when you say extreme it is the hardest -- lol] … it is extremely easy to loose sight of that inspiration when doing the daily grind, or when stress or health overwhelm you.  I seem to have fallen in this rut.  I call it a rut because that is just what it is, a grove that has been worn by time into the road that you are journeying on. Wow that was almost poetic.

Illness sucks.  Chronic Illness blows.  Once when I opened my eyes it felt as if the force of my passion and inspiration was there waiting for me and everything was in the way until the moment I could grab it and put it on paper, canvas — anything that would stay still long enough for me to scribble, doodle or draw on.  Now when even before my eyes are open the first sensation I feel is pain.

Pain can inspire but carting it around with you with every cell is daunting.  Upon waking I have to take stock on how my body is working — or if it is working — there are days where taking my arm and nudging my husband is all I can do.  No speaking no moving no anything.  I literally shake my head and he knows.  He brings me my cell so I can text my boss… that I won’t be in.  I also have a very understanding boss, the day they offered me the job I explained my medical conditions.  There are a few  but the Fibromyaglia is the one that is the most overwhelming.  I was lucky and she had a passing knowledge on Fibromyalgia because she has a friend with it.  She was concerned but taking the job at a bit of a pay grade less than I am worth got me in.  I’ve only called in maybe a handful of times like that and again I am fortunate that I can work via remote. Which means that after the meds [pain killers] kick in I can sit at my computer and work from home.

Usually it takes a few minutes to move – more a grin and bare it instead of any real heroic effort.  I have mastered the art of stretching in bed without waking the hubby. Although I have fallen asleep in a yoga pose … that’s funny to jerk awake in some sort of contorted position, disoriented and usually an appendage is now numb to add to the fun. I have a heck of a commute to the gym, I roll of the bed to the floor.  After a few stretches and a little more of my dad in my head [he was a Marine Drill Instructor] saying “insert any funny raunchy inappropriate drill instructor quote from any movie here’ – yep that’s my dad. Or maybe my mom, who was raised by a single mom during WWII in the middle of the nowhere South — yep no whimpy quotes come to mind.  And its off to start my day.

See you can be inspired by a string of creative language.  So you think this is taking forever, its not even 7am yet.  This is my block… this is what hindering me.  I was a faithful blogger for some years then life naturally got in the way.  If that stops then the whole possibility of blogging is kind of a moot point don’t you think? Anyway, I push myself and struggle  through the day — yeah can’t take my ‘real’ meds at work  they make me really blonde… like an etch-a-sketch with broken handles.  It’s part ignore it, part mind over matter and part no choice grin and bare it.  My job isn’t helping, its more technical than creative so there really isn’t any inspiration happening there.  Might be the constant hum that I feel from concentrating so hard on what I am doing so that I am not feeling the sharp, dull, hot, cold edge of pain, but I could be wrong.

I digress… I am wandering to much through my running commentary.  My intention was to start to inpsire myself.  I’ve started a new painting.  Even going so far as to post the ‘work in progress’ in a group I opened on facebook, inviting a few artists I feel impressed by to join and share some feedback on the work.  Basically I am going to attempt to jump start my own inspiration again.  Hopefully, I will post regularly and maybe between the two I will by guilt or mere routine inspire myself.

If you have actually read this entire post you are nuts and I like you so leave a comment and share with me.  Who knows you may cause some inspiration.

Dreading Dr Appt

Dr. Appt Today.  I had to change doctors because I changed insurance.  Unfortunately, with Fibromyalgia, you have to go to a Rheumatologist.  However, the disease is not widely accepted, despite the advertising campaign.  I’ve had some horrible experiences dealing with doctors whom do not accept the condition, even though it is a documented illness in the medical journals.  Then you have to account for the fact that not all Rheumatologists treat the illness, followed up by a good portion of those just want to medicate you into a walking coma.  So I estimate that maybe 15% of Rheumatologists actually treat the illness, with a smaller portion educating themselves and their patients on the best ways to deal.  With quite a bit of reading on local doctors that actually took my insurance I called and asked the nurse at the new Dr. Office about Fibromyalgia and how they treated the illness.  So while I was dreading this appointment – you have to do the whole new patient thing – I might have lucked out.  The appointment went well, the doctor was, kind, educated on the latest for the disease and we agreed on the illness management regime.  Hopefully, this means I will start feeling better soon.

Theory of Indestructibility

Well as most know who read my blog, they have heard of my youngest son’s ongoing testing into the theory of indestructibility. Tuesday last week he went another round. He was playing street basketball and was fouled which landed him at a funny angle on to the asphalt which promptly broke his foot.

C went and picked him up from the friend’s house. This not being my first round with injuries, no one panicked. Bryan took a shower to get the blood and scrapes cleaned up, ate dinner, then we did the ice then heat treatment for about an hour. The swelling went down enough so that I could really inspect the injury – yep – straight to the ER. We arrived at the ER about 9:15pm – went through the motions – paperwork – however being that this wasn’t my first time – I asked the nurse to get an x-ray done so that when the doc talked to us the films would be back.

Another mother in the waiting room, we had been chatting while we waited – didn’t know you could ask – she didn’t so when we were leaving later that night they had just ordered her daughters x-rays – we left the ER at 1:15am. I don’t’ even want to think how long they were there.

Anyway, they checked it out yes its broke – they only put temporary casts on now you have to go to an orthopedic surgeon to get the brace or cast now. I requested the films to go with us from the ER, instead of having them sent to the surgeons office – can’t tell you how many times they have lost paperwork and other things. Now I just take it with me. When we went to the surgeons office he told us a brace would be best – great – oh but guess what he doesn’t do the braces or casts we have to go to a orthopedic/prosthetics place. So we make another appointment and when we get there – they are not in our network for our insurance – so I have to go home do some digging and make a few calls get another appointment and take him to an in network place. Thursday is when we got the freakin brace – he had to wear that temporary cast for three freakin days. ARRRGH!

Finally we get the brace and Wham! Our deductible hasn’t been met so $200 for that then a % of the remaining cost 39.80 = totaled out to $239.80 plus $20.00 for each freakin doctor we saw. The price for the brace without insurance is over a $1000.00 – thank you insurance. Check out the hardware….

Well – Bry’s Theory of Indestructibility is not gone but it has a shaky foundation. I am to aware of this scientific exploration to assume this is the last test gone wrong. So for now things will hopefully be a little more quiet – well at least until the freakin brace comes off.

The Dangers of trying something new…

The dangers of trying something new are that it can come back and bite you in the ass. As of my last post I had been to the doctor and we decided that my medication was not working as well as we would have liked. As with any newer diseases/diagnosis the doctors like to try the latest and greatest from time to time. Because Fibromyalgia has only been on the books medically speaking for about 10 years there is still a lot of experimentation and studies being conducted.

Doc told me of Effexor, a new SSRI that has had several studies done on the effectiveness of this medication on Fibromyalgia patients. The studies have had excellent results. I was taking a similar medication so – we decided to give it a try. We planned on starting out at 37mg, then after a week moving to 75mg then finally to 150 mg a day.

Well after the doctor visit a few days later the boys came down with a small virus, it went from one to the other. During that time I started to have flu like symptoms and just over all feeling pretty shitty. I figured I caught what the boys had been sharing [teach them to share and all the do is share the bad stuff…lol].

By the end of the week I was feeling worse but with my health issues sometimes it takes and extra few days to recover from viruses and such, so we thought nothing of it. By the 3^rd day of taking the new meds at the 75mg dose, I started having muscles spasms, my hearing and vision deteriorated, and my virus symptoms became aggravated. I didn’t take the 4^th night’s dose and left a message for the nurse at the doctor’s office. I received a call from the doctor, get to the ER – we think you might have internal bleeding – call us as soon as you have any word. I didn’t call 911 for an ambulance – I called C what a phone call — I don’t even think he asked to leave he just called on his way out the door.

We got to the hospital and they rushed me into a room shoved IV fluids into me and took a CAT scan… yeah no panic yet… besides my Doc in the ER had the bedside manner of a toad and the personality to match…. What a jackass. Anyway, several hours later, a tox-screen was done and the meds were flushed out of my system. The boys were ok, a little upset but I had a friend come stay at the house so that – if the worst case scenario and I had to stay for longer than overnight we were covered. They are old enough to stay alone I just felt better that an adult was there – just in case.

The determination is that I am allergic to the medication – apparently very allergic. They had not pin pointed what exactly in the meds are the problem but I am not willing to play guinea pig to figure it out. Avoidance it the method I choose for this little quandary.

I was completely house ridden for two weeks. ARRGH! I do not like to be down like that but I felt so horrible that I could do nothing but sit on my fanny. C stayed with me for the rest of the week – had to use all his vacation time to do it. Feel pretty awful about that, it wasn’t exactly a vacation. My hearing and vision cleared up by the end of the week but my speech was still a little sluggish. My coordination was way off and to tell the truth – it scared the crap out of me. I was and am still worried I did permanent damage to myself.

It has been over three weeks now and I just had my first full day of work today. I have sporadically gone in a little bit here and there but I was unable to drive until the doctors cleared me for it. Can’t drive if your vision, hearing and coordination is off – not and survive the trip. My office sent a caterer over once I was home, so that all I would have to do is get better. The standard fried chicken, potato salad, and fixings dinner. It was totally unexpected and appreciated more than be expressed. Although I do think I need to stop joking about how much the boys can eat… they went a little overboard and I think we could have actually feed an army with the amount they sent.

I am still a little off, I can tell and those who really know me can tell as well. The doctors think it might be a few weeks before my system actually reboots itself fully. My only worry is that I unintentionally did damage that I can’t not repair, and that is no small concern. Either way I am not on any medications now, I want to be fully back to at least my normal subpar before I do anything. I am just playing it close to the vest and day by day for now.

 

 

FM Days

What really pisses me off about being chronically ill – it is when I get a relapse of my Fibromyalgia without knowing what the trigger is?

 

You have your average every day stresses: family, work, home, and your own interests. Then you get to add the exterior triggers; catching a regular virus, smells, temperature [cold especially], hydration, sounds, light and numerous other factors that you don’t have to be aware of. Then you get to add in the fact that your illness does not have any distinct sign or markings that allow others to see and understand, that you having a bad day mean you also get to have it with searing pain. The most used response when someone finds out that I am sick is, ‘You don’t look sick’. 

 

So if I don’t look like death or at least that I am crawling on my last legs toward death, I can’t be hurting.  I guess if I laid down and played martyr for you, tell you every time my head, neck, shoulders, hips or any other trigger point decided to zing me with a surge of pain – you would understand what I go through in an average day.  I have to tell you that would not work – all you would hear is me saying ‘ouch’ and cussing. Then all you would feel for me would be pity or sorrow for me – not understanding. I don’t want or need that.

 

In conclusion, I guess that it is hard for anyone to see another’s pain, let alone a pain that is invisible to all but the one who has it.  The only thing that is requested for the loved ones around us, whether family or friends, is that you don’t have to understand what it feels like,  you just have to acknowledge that it is a reality for the survivor of the disease and one that we carry always.

 

There is no time out, even on good days; because the minute the survivor over does that good day – is the minute that survivor set themselves up for a relapse.  The trigger could have been any one or many things.  I have maintained a life style that keeps me pretty well grounded and I try to always keep a strong insight on how my physical, mental and emotional levels are at. 

 

Yet somehow I still had a relapse, it started Saturday night and caused me to stay home today from work.  Which pisses me off; our household is a two income kinda home.  I have to work and I will tomorrow, better or not.  I will make sure I take the necessary steps to get myself back to my base-line of pain and go on, just like the other almost ten million other sufferers of this illness.

 

 

 

 

Fibro Flare

 

I’ve been in a bad fibromyalgia flare for the last week or so, pain that at a average person would rate a 7 close 8 on the 1 to 10 pain scale.  The painkillers are only marginally effective.  I have stronger drugs that I take when these ‘Flare Ups’ happen however sometimes it is the equal  to taking a sugar pill.  I don’t take the ‘strong pain killers’ during the day because I work and I’d rather not take stronger or more drugs than I absolutely need to.  

I am not moaning as such and I do not throw a pity party for myself.  This is simply a part of my everyday life and I feel the need to pound it into submission.  If you had a migraine or an allergy attack, you discussing the affliction with someone would be termed as an everyman issue and shared, compared, even discussed comparing trial and error for fixing the problem.  These condition awards individuals whom have Fibromyalgia an equal to a migraine or allergy attack – it is called a Fibro Flare.

A ‘Fibro Flare’ is basically when all of your symptoms exacerbate.  If your major ‘Trigger Points’ [main pain areas where your everyday symptoms manifest the majority of the time] are your shoulders or arms or your hips and legs then during a Flare the pain is intense in those spots.  Some Flares last a short time…a few days…some flares can go on for months. Gradually, at some point, things calm down and you know your fibro flare is ending, and you go back to "baseline", whatever is "normal" for you.

The hardest thing to come to terms with is the amount of pain you are in for no discernable reason.  I work, go to class, be a mom and wife even when my condition, in pain, exhausted and frustrated, even depressed would put others down flat on their backs.  I know other individuals with this condition do so as well.  Ask anyone who suffers from fibromyalgia, chronic fatigue syndrome, or any chronic condition and the worst complaint you will get is the frustration in the reason they have this disease and the way it severely limits amount of work and play they are able to do.  Where just living your life means you do so in continuous physical pain.

Despite the tag for the fun filled feature for Fibro patients — the ‘Fibro Flare’ — is not a sparkler or a new brand of fireworks.  It is however a burst of burning, sharp pain for the handler.  I am hoping the round of ‘fun’ is running out of steam and will let go soon.  I feel like I am loosing my grip on everyday life — the pain is just getting insistent on being felt.  I am doing the prerequisites and resting as much as possible, taking my meds, herbal supplements and trying to stay up with my exercise routine. Unfortunately there is nothing more I can do.  I am not looking for a quick fix – they simply do not exist. 

Another Yellow Texas Rose

Peter Dejong / AP Lance Armstrong holds the winner’s trophy after winning his seventh straight Tour de France on Sunday. Armstrong credited Tiger Woods, Wayne Gretzky, Michael Jordan and Andre Agassi as personal inspirations. quote from msn "Armstrong has no stronger fan base than in the capital of Texas, where locals can sometimes spot him eating in restaurants or on training rides in the hills west of town. He was here in 1996, when he announced his diagnosis of testicular cancer that had spread to the lungs and brain. The Lance Armstrong Foundation for cancer research and survivorship programs is based in the city."   I admire his courage and strength to achieve his destiny without holding back. I take solice in the idea that there is power in the mind and heart that helps us achieve greatness – weather it is for small steps witch take maxium effort or the large steps that often surprisingly take litte effort.  Congradulations Lance!

FM Moments!

I had a study group on Friday night — and yes I know how lame that is, Friday nights should be for naughty, exciting and ‘I may regret this  moments’ – however this past Friday I had a study group.  One of the participants was someone known to me and she brought up my FM, remarking "I don’t know how you do it".

Now this is not the first time anyone has said that to me however this time I actually had a sort of answer.  I told her " I just do".  While glib, it does sort of sum it up.  The only way I can explain is this. 

Many years ago I didn’t have a choice or anyone to help me out.  My mother was terminally ill and my father was not the most capable one and he had to handle my mother.  The rest of my family had their own issues.  Not wanting to be a burden and probably to prideful I handled it by taking the reigns and went for it.

Being a single mom for years, t[here is a lot of story] the basic facts was that I was the only one whom my boys could count on, so I just did what I had to do.  Wheather that was working three jobs to take care of us or simply playing cards to reading endlessly the same bedtime story over and over.  It needed to be done so I found a way to make it happen. I simply choose to llive life.  Besides the fact that I feel that I am responsible for myself, what I do in my life is a conscious decision.  It may not be the right or best decision but I choose to accept it no matter what

I take that approach with everything.  Why should my medical condtion be any different.  I have decided that Fibromyalgia will not be the defining thing for my life, and I make sure it is not.  This is not to say it is not hard for me, that would be a lie.  Every morning I wake up in pain, I think ‘I just want to go back to sleep and forget, sleep through the pain’.  If I took all the medication the doctors tell me to take that is just what would happen.  Instead I set my alarm  15 to 20 minutes early, give myself one honorary slap of the snooze, then I spend several minutes convincing my body to listen to my head.  This is accomplished with slowly sitting up and often sitting, indian style then trying to stretch out my back by leaning forward.  Streching out my head and neck as well as any other body part that needs it. All the time thinking of the man laying by my side and the two sleeping boys in their rooms, they need me and once I convince myself, I get up and go.  The rest of the day just kind of goes from there.

One thing for sure, I never get back into the bed.  The few times I have — #$%% — everyone ends up late and the day just sucks.  It kind of feels liike you are trying to catch time and unlike Alice, the Q#$^%^ bunny jumped into a different whole than the one you dove into.

I am not special or any different than anyone.  For myself, I just can’t see why I would want to waste all the special time life offers us by lying in bed feeling sorry for myself.  Once I get moving and at least semi-motivated, even if I am in pain – at least I am living.  I have had a few days where there is no way that I am going to move — impossible is a mild statement.  My goal is to keep those days to a bare minimum. 

Fibromyalgia is something that if all the so called experts are right – I will have for the rest of my life.  I have hopes, dreams and goals none of which I can achieve in bed [unfortunately] so I stand by my statement – How do I do it? " I just do."

A Dose of Life with Fibromyalgia.

In 1997 my medical problems started to multiply. I went to doctor after doctor and had every known test they could throw at me. Finally I found a Doctor willing to listen to me and go with my ideas on my medical problems. In July of 2000 I had to have a hysterectomy, the cause; endometriosis, adhesions, lacerations and cysts. Gee I wonder why I felt like crap! My uterus was so damaged that the entire back wall was stiff and unmaliable. Whenever I moved I literally was bruising other organs inside. They could not do the surgery laproscopically, so I have a permanent smile. They used a laser to burn off the endometriosis off adjoining organs, they saved my right ovary but the left and my uterus was removed.

Afterwards, pre-menopausal was the explanation to the discomfort and pain. I needed to heal and it would take time before they could pin point what was the best way to deal with my issues, hormones. After about a year a friend mentioned Fibromyalgia, I spoke with my Doctor and he said I had to see a specialist for that. I started looking into a Rheumatologist and I researched online but before I could get into see one other another medical problem took precedent.

In Jan. of 2004 I found a lump in my breast, a large one which turned into two. A third was found above my right breast in the area below my collarbone. They were not cancerous. Three biopsy later I go in for a check up because my stomach started to cause severe pain; this was cancer, my gall bladder. This could be removed laproscopically, you should see my scars — I feel like the Milky Way is imprinted on my stomach and chest. Anyway the last surgery was done in December of 2004. I am cancer free; they caught it in plenty of time. I have to be under watch for a year- just to make sure.

Mid-year of last year during the medical nightmare the pain became unbearable. I have literally been in pain since before 1997 but was slowly loosing ground on how to cope with the fact it seemed it was never going to end. I saw the Rheumatologist let’s just say it took all of 5 minutes for a complete yes diagnosis for my FM. The final tally ends up being, FM with TMJ, IBS w/ constipation, and Hypoglycemia mixed in with a few other items. I have been on so much medication the last few years that I feel almost surreal in my own life. The Doctors I have dealt with have expressed that I have a high threshold of pain. But how high is high and why does that not make me feel any better.

I have been trying what the doctors prescribe and what I research but I know that I need to have an outlet. I needed an outlet so I thought that I could reach people who are familiar with my situation through a personal blog. This way if they comment or email me we can alternating pat each other on the back or get a kick in the butt. I have tried to speak to family and friends about my condition, they give me sympathy and I believe they try to understand but forget quickly. Not because they don’t care but because they do not have comprehension of the meaning of "continious chronic pain".

I have cut back on school [dropped one course – any more and I loose my scholarship], on housework [husband & kids pitch in more and I care less if it’s messy], and even work [actually have a boss who cares]. Numerous other changes such as diet and exercise but sometimes it still feels as if it is not enough. Please do not misread this post as a pity-party. I hate pity parties and never plan on attending one, I will certainly never host one myself. All the individuals around me are defintely supportive and I make it a point to have a positive attitude and manner but even Mary Sunshine has a rainy day or two. If you are interested in learning about Fibromyalgia I will place a few links on my Web’s of Interest List. Thanks for reading.