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Sunday, June 21, 2009

Dream interrupted

So I had this dream. Not a sleepytime dream where I'm chased by mannequins, but a dream for my life. A dream for my future.

I was going to finish my Master of Arts in Education; I was going to change people's lives by helping them with their education.

But I'm the one who needs the help!

I am two and a half classes away from finishing my Masters, but I have lost the motivation to continue. The thing is I still want to finish. I really, truly want to earn that degree! I just can't seem to find the will to pull myself up and finish it.

Sometimes I wonder if I'm just fooling myself into thinking I can finish it. Every day I think I couldn't feel any worse, and the following day proves me wrong. 

Maybe it's that so many things have gone wrong that I live in constant anxiety of the next anvil to drop on me. Maybe my subconscious is telling me if I drop out of school now, it will be something I chose to do and not just something else screwed up that happened to me because of my own bad luck. Maybe I just don't want to have to worry about having to write research papers, action research projects, team projects, etc. Maybe I have too much to worry about right now that school has to be put way for now and revisited sometime in the future. Maybe I'm just talking myself into dropping out.

But it's not something I want to do. I'm wondering if, at this point in my life, it's something I really do have control over.  It's not like I have control of anything else that has happened to me!

I know what you're thinking, Mom! We have control over how we react to things. We have control over what we do. But I think this deep, dark depression I've fallen into because of the constant, unrelenting pain has taken my control away from me. I don't want to live like my grandmother did (she also had FMS, among other conditions). Every year she would tell the family she wouldn't make it 'til Christmas. She lived her life waiting to die. As much as I don't want to fall into that line of thinking, I now know exactly where she was coming from. The chronic pain and depression can eat into your very core, your very being, like thermite. Your hopes, dreams, intentions, and control over your own life quickly melts away like snow in the desert sun.

Yep, I like those analogies. However, I truly hate that they can even remotely apply to me. Me, the once-type A personality; the straight-A, self-entitled "professional college student" with nearly 200 college credit hours under her belt; the one who was debating on which degree to pursue for a second Masters degree. Can that be me again? I would like it to be. She was a force to be reckoned with, and she was fun (and incredibly funny - just ask anyone!). I wonder where she went?

Will this new me allow me to fulfill my dreams? Maybe if I ask nicely...

Gentle hugs to all,
Jessica

Tuesday, June 9, 2009

A Fantasy

I have this weird fantasy.  I have normal ones, too: have my favorite Dallas Stars player (Marty Turco) fall in love with me and we run off and get married, and I get great massages from the team therapist; being incredibly successful and have everybody listen to me; attend game 7 of the Stanley Cup finals where the Dallas Stars win the cup.  Well, these are normal for me anyway.

I developed a new one very recently.  Since I went on medical leave from work in February, I have become obsessed with the TV series House.  My weird fantasy is to be treated by Dr. House, or someone closely resembling his attititude, acute observations, and absolute genius.

Why?  Because I'm sick!  And I'm sick of being sick, tired of being tired...and I want someone to find out why I am this way and fix it.  Even if he repeatedly calls me an idiot and liar.

I want someone to tell me it's not Fibromyalgia and it's not just my screwed up spine that is causing debilitating pain; constant and chronic fatigue; severe depression; headaches that are so bad that it hurts to rest my head against the pillow; muscle spasms in my neck, shoulders, upper arms, upper back, middle back, lower back, hips, buttocks, thighs, and calves...and feet; nerve pain so severe that I can trace exactly where the nerve runs through my body; etc.

Not that I don't believe in Fibromyalgia, I just want to know the underlying cause and have that treated so the rest of it goes away.

I have mentioned in a previous blog that I have ruled out a lot of other disorders and diseases.  I'm sure my doctor hates the fact that I have Internet and tend to research my symptoms to find out if my pain, and everything else, could be caused by something else.

My memory is not what it used to be, but I know we have ruled out hypothyroidism, hyperthyroidism, renal fatigue, renal failure, hormones, diabetes, food allgery, and rheumatoid conditions (arthritis, rheumatoid arthritis, etc) through blood tests.  There were others, I'm sure.  But without my medical records in front of me, I cannot remember what they were.

With Dr. House, I would be tested for every known cause of chronic pain.  I just watched an episode in which a patient was admitted for severe leg pain and it turned out she had congestive heart failure (a disease which killed my father in September 2007).  Of course, she was also bulimic and relied heavily on ipicac, causing heart damage.

If I felt well enough, I would write the entire episode right here for your reading pleasure.  However, I didn't sleep much last night and my entire body has been in horrible pain since I decided to get out of bed because good, restful sleep wasn't in the stars for me.  It never is, but the past few days have been the worst.

But anybody who has ever seen the show knows the storyline: patient is admitted, House and team run new differentials for each new presenting or discovered symptom, patient in treated for many different diseases or disorders until he or she almost dies, then House's acute observation and amazing insight discovers the last piece of the puzzle and the patient is cured forever.

Yeah, I want that.  I want to be cured forever.

Is that too much to ask?

Gentle hugs and stay tuned,
Jessica

Sunday, June 7, 2009

Savella

Anybody with FMS, ok most anybody, knows or has heard about the new drug on the market for our condition - Savella.

I had followed the clinical trials for milnacipran hydrochloride (Savella) since I was first made aware of it last year.  It seemed so promising and I was actually excited about it coming out (like a new novel from a favorite author or CD from a favorite band). Well, it's out. And I'm on it.

Of course you know that if you've been following me on Twitter, where I have been giving brief statements on the side effects I've been experiencing.  I'll recap here, but I have to say I have never been on a medication that has done what this drug has done to me.  I'm not sure I like it.  But it's like a bad relationship you stay in for the kids - you're just hoping for the best in the end.

I feel very analogous today.  Have you noticed?

Anyway, here is a recap of what's been happening to me on this drug:

May 29: Started taking Savella this morning and was unusually tired all day. Not sure if there is a connection.

Truth is, I slept nearly the entire day, then the entire night.  I wasn’t just tired, I was dead!

May 30: 2nd day on Savella. Can't stop crying for even 5 minutes. Had to stop other anti-depressant to take this, according to pharmacist.

Since the pain management “specialist” couldn’t be bothered to discuss the interactions between my then-current (oxymoron alert!) medication regiment and the addition of the Savella, and my PCP didn’t know enough about Savella, I asked the pharmacist at Walgreens.  It’s a good idea to get your medications from the same pharmacy so they can look up exactly what you’re taking and talk to you about interactions.  Anyway, she advised me not to take the anti-depressant I was on when I started Savella.

May 31 (AM): Day 3 on Savella. No crying yet but I've only been up an hour. Talking to myself a LOT, though.

I normally talk to myself anyway, because I am alone most of the time.  However, I would think something then start arguing aloud with what I just thought.  I repeat – I was arguing and talking to my thoughts. This is not the normal, “Where are my keys?” type of conversations.  It still happens. And to make myself perfectly clear, it’s like my thoughts and my voice are two totally different entities having a debate, conversation, or argument. I’m about to give my thoughts their own name so I can refer to them properly.  This is nothing like I’ve experienced before.  Very curious indeed.

May 31 (PM): Day 3 on Savella. No appetite; no change in pain or depression so far. Crying stopped for now. Head feels heavy.

I don’t even think “heavy” is the right word to describe how my head felt and feels.  I try to describe the “buzzing” to my BFF, my son, and my momma – but it’s not really a buzzing.  It’s like I can feel every neuron firing inside my brain.  Sometimes I feel a “shift” but I can’t even describe what I mean by that or how it feels.  My entire brain chemistry is changing and I think I can physically feel it. 

In addition, I completely lost my appetite on day 3. It wasn’t that I couldn’t eat, I was (and am) just never hungry anymore.  And, of course, if one is not hungry one does not eat.  That is not good!  By the end of the day I wonder why I feel weaker, worse, dizzy, actually leaning against the wall while walking (or gimping, in my case) to another area of the house.  I then realize I hadn’t eaten all day.  While I am constantly thirsty and keep myself hydrated, I just never think about food anymore because my brain is not telling me I need it.

June 1: Day 4 on Savella (AM). Still not doing well. Had to take other anti-depressant last night to stop crying uncontrollably. Dr appt today.

I was back in El Paso by this day.  The trip back from Lubbock was very hard on me physically and mentally.  I literally could not stop crying!  And this was not just a weeping cry, but an ugly-faced, hyperventilating, hard crying.  It still happens to me daily, but not with as much frequency as the first week.  While I cried a lot before I started taking this drug, it was nothing compared to what is happening to me now.  Before it was crying because of the pain, now it’s crying for no apparent reason. Late in the evening on day 3, my son, nearly in tears himself, told me I had to get off this medication because of what it was doing to me.  I ended up taking one of my other anti-depressants just to calm down, quit hyperventilating, and start breathing.  On day 4, I went to a follow up appointment with my PCP to let him know what happened in Lubbock.  I’m trying to remember if I blogged about that torturous fiasco.  I guess I’ll check when I’m done here…

June 1 (PM): Day 4 on Savella. Dr ok'd taking additional AD to control depression. No change in pain level.

So my doctor said it was ok if I took another anti-depressant while taking Savella, even though Savella is supposed to work like an anti-depressant. If anything, it was working like a depressant with me.  Savella is also supposed to control chronic pain, but it wasn’t working for that either.

June 3: Day 6 on Savella. I'm never hungry anymore so I forget to eat. Noticing an increase in anxiety attacks.

I have had anxiety attacks since I was 8 years old.  Some severe, some debilitating, and some that weren’t so bad.  These anxiety attacks, for the most part, do not have a trigger.  Before there was always a trigger.  I can just be laying in bed reading, watching TV, playing solitaire on my DS, then all of a sudden I feel anxious, terrified, the crying starts again, I’m mumbling to myself about something, my thoughts are feeding my attack (I swear my thoughts are out to get me).  When it’s over, I could not tell you what I was mumbling about or thinking.  They are just untriggered episodes and I have little to no recollection of what I was thinking about during the attacks.

These actually started happening before my doctor appointment and I told him about them. My doctor if I wanted to go back into the hospital, but I think he had a different ward in mind.  I talked him out of it stating, “I just want to be at home!!”

So now we are on June 7, day 10 on Savella.  I am feeling a slight reduction in pain in my lower back. That could just be the new muscle relaxer, though. However, I can honestly tell you that I would rather be in constant pain than experience the psychotropic effects of this drug.  At least with the pain I still had some clarity of thought.  It wouldn’t take me several hours and several revisions to write a blog.  I would be able to go back and read it and it would still make sense to me. With this drug, nothing makes sense.

The fact is, I have a bonafide reason for being in pain.  I have had back problems since I was 23, had a double-level spinal fusion at L4-L5-S1 in 2003, and was rear-ended (HARD) while at a dead stop in April 2007.  I now have scoliosis in my neck that effects my shoulders, arms, upper back, and neck (of course); and my previous lumbar spine condition was aggravated.  Well, not just aggravated, it was downright pissed!  These issues were never addressed at the pain clinic in Lubbock, which I had hoped they would be.  I wanted someone to look past the FMS diagnosis I was handed and look at the underlying cause of my constant pain.  But they didn't.  They tortured me to the point of screaming in their examination and told me I had muscle pain.  No shit! I also have a lot of nerve pain but nobody seemed to even mention THAT! Then they put me on this drug and it's changing my brain chemistry.  It's obviously not working and I think I'm going to make an appointment with my doctor this week to get off it.

If you have FMS and are taking or will be taking this medication, remember that my experiences may not be the same as your experiences.  It is important, however, to document all the side effects you experience to discuss with your doctor.  If you don't experience any side effects and the drug works for you, I will be happy for you.

As for me, I don't know what my next step is in finding relief from this constant and debilitating pain.  I'm going to be trying some water aerobics, some beginner's yoga, some sitting and stretching thingy I can't pronounce (I was given a DVD as a gift). I am trying to remind myself that I can't just lay down and wait to die in order for this pain to stop.  I need to do something to take my life back and regain my senses. 

Gentle hugs and keep on truckin'!

Jessica

Tuesday, June 2, 2009

Music therapy

Isn't there a saying about music soothing the savage beast?  Or something like that??  For music lovers, different music can elicit different emotions and feelings.  My favorite band, Blue October, elicits a feeling in me that I am not alone in my emotional pain.  Sometimes, however, I have to forego Blue October because it makes me cry uncontrollably (as I learned on the ride back from Lubbock, but I was already emotionally fragile at the time).

My long-time friend, Diane (now goes by Molly), also suffers from Fibromyalgia.  To say that she loves music is like saying we, as humans, need oxygen.  I think she has the right idea, though.  Music seems to be her lifeblood, it keeps her going.  Even if you don't suffer from debilitating pain, music should be an important component in all our lives.

I have been listening to music for as long as I can remember.  I remember that the channel that would become FOX used to just play music, like a radio station on the TV.  My brother and I would sit and listen to it, and our only rock station on the radio, for hours.  My favorite toy was my record player and I would take my momma's records and play them over and over again.  I just loved music, and that never changed.

Since going on medical leave in February, I have done little more than lay in bed and read or play my DS.  The pain was too much to ever get up and do anything other than attend doctor appointments.  Recently, however, I discovered the music channels on cable.  I knew they were there, but never paid much attention to them.  Our local rock station sucks, by the way, so I never listen to it anymore.  Being on medical leave and having no income, I couldn't keep up the payments on my satellite radio, so that was out as well.  But a few weeks ago, I started tuning into the Rock and Classic Alternative music stations on my cable box.  They were good, but not good enough.  At night, I change to the "Soundscapes" station for soothing music as I fall asleep.  Yesterday, however, I discovered the "Retro Rock" and "Classic Rock" stations.  OMG, what a change in my mood!

These two stations play the music I grew up listening to: Led Zeppelin, Beatles, Lynard Skynard, classic Aerosmith, Kansas, Electric Light Orchestra and so many others!  They play songs I haven't heard in years, but still remember the words to; songs that make me want to get up and move; songs that make me smile and make me thing, "I love this song!"; songs that, somehow, remind me that life is worth living and living well.

Honestly, if it weren't for the back pain, I would be dancing!  I actually did try to dance a little on the way to the bathroom, but my back screamed that it was not ready for such movements.

Now, I am not saying the music is curing me.  But it is sure making me feel better emotionally, which improves my mood, and may, eventually, help me with my physical pain.  I am once again tapping my feet and singing along with the music I have always loved (currently Blind Faith's "Can't find my way home").

If it weren't for the pain, I would feel almost normal!  Music does, indeed, sooth the savage beast! Give it a try...it can't hurt (unless you start dancing before your body is ready)!

Gentle hugs and rock on!
Jessica




My life as an onion

I just got home from Lubbock, where I was seen by a pain management specialist at the Texas Tech Pain Center on the recommendation from my older brother.  His wife has been suffering from FMS and other disorders and she has been treated there for quite some time and is now doing much better and functioning!

The appointment didn't go as well as I had hoped it would.  I guess I was hoping for some miracle drug or procedure that would stop the pain completely and give me a new lease on life.  Needless to say, that didn't happen.

What did happen plummeted me into hysterical, inconsolable, and uncontrollable crying.  I was actually crying before the appointment.  We had just driven to Lubbock from El Paso (my son drove, I mainly did my best to be comfortable laying in the backseat of my tiny Saturn Ion), I was nervous about the appointment, and I just was not feeling well.

I didn't have to wait long until being called into the examination room.  My brother went with me because he has so much experience dealing with the doctors there and he remembers everything. I remember nothing...ever...so it was important to have someone there to tell me what happened later.

Texas Tech is, of course, a teaching hospital.  The "fellows" at the pain clinic are actual doctors, usually anesthesiologists, who are receiving extensive training in pain management procedures.

I lay on the uncomfortable examination table for just a few minutes before one of the "fellows" comes in to do his "examination" before I am seen by the attending doctor.  He didn't examine me, he tortured me.  He contorted my back in ways it should not have been moved (I swear he used his knee in my spine to bend me), he found every painful point on my body and manipulated it until I screamed.  I felt like I was in an inquisition and being "put to the question". I almost confessed to being a heretic and would have welcomed being garroted at that point.  I cried, I cussed, I told the "fellow" I was going to have my brother kick his ass, and I told him I didn't like him and to get away from me.

My brother and the fellow assure me that this torturous examination was necessary.  I hated both of them at that time, because I could have just told them where I hurt!

But that was it.  That was my examination that told the attending doctor what was wrong with me: I have overall body pain.  No X-rays, no MRI, no blood tests, nothing else.  Of course, they had copies of my previous tests and x-ray results; they knew I had previously had a spinal fusion surgery and scoliosis in my neck due to a car accident two years ago; but they didn't try to pinpoint why I was having the overall body pain.  Once again, the diagnosis was the dreaded Fibromyalgia.

Allow me to digress.  Ever since I received that diagnosis in 2007, I have been requesting additional tests to be done to rule out FMS. I had my doctor test for hypothyroidism, hyperthyroidism, renal fatigue, renal failure, hormone imbalances, and a dozen other things I can't remember right now.  All my tests came back normal, so I was stuck with this diagnosis.  I just wanted it to be something treatable!!

Back to Lubbock: the attending came in and told me things I already knew.  I had FMS and my muscles hurt.  He suggested I start taking Savella (a new drug designed only for Fibromyalgia), find a muscle relaxer with which I won't have adverse reactions (I'm allergic to many muscle relaxers), and start aquatic therapy.  He wouldn't give me the prescriptions because I don't live in Lubbock and he won't be able to follow up with me on my progress, so he gave me a note to give to my PCP to prescribe the medications for me.  Puh.  I just called my doctor's office and told them, and the prescription was called into a Lubbock Walgreens by the end of the day.  My doc is cool like that.

As I was listening to the attending doctor reiterate what he had already told me, it dawned on me that that was it.  That is all they are going to do for me.  Torture me, then prescribe a medication my doctor was going to put me on anyway (as soon as he received information about it).  Nothing more.  I started crying while the attending was speaking to me, then I started bawling, then it turned into the ugly face, uncontrollable loud bellowing that was probably heard throughout the clinic. I couldn't help it. All I felt, besides the intense pain throughout my body, was greif. Going to Lubbock was, to me, my last hope at finding relief and I got nothing.

But why the "onion" in the blog title?  I was talking with my brother the following day about how disappointed I was with the doctors at the pain center and how I didn't feel I received the right medical treatment.

My brother used a metaphor he had learned from another doctor at the pain center when his wife was being treated there: treating someone with pain management is like peeling an onion.  There are so many layers the doctors have to go through in order to get to the heart of the problem.  After you get through the first thin layers, you really have to work at getting through the rest.

My brother told me that, despite the fact I have bonafide reasons for back pain, I have to address my severe depression before I will be able to get better.  He told me that I had been depressed almost my entire life, and for good reasons (the reasons will not be discussed here).  He told me that I have to be seen by a psychiatrist as soon as possible, not just for mental health reasons but also to have my medications reviewed and, if necessary, modified.  He told me that once I am healthy mentally, I can start working on getting healthy physically.  It was the first time he spoke to me like he actually cared, and he made some great points and observations.

So now I embark on my life as an onion.  I will start psychiatric treatments soon (just waiting for the call-back), and start working on being more physically active.  I do need someone to go to water aerobics with me.  Any takers?

I think my doctors are going to have their work cut out for them.  My layers are pretty thick, as I have built walls, posted guards, and given the command to shoot at will at anyone who attempts to access certain parts of my life from which I have worked so hard to distance myself. 

But I want to get better, so let the peeling begin.

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