Ma Compagne Ininterrompu...

...Douleur.

Ma Compagne Ininterrompu...Douleur

Doesn't that sound so much nicer than "My constant companion...pain." Makes being in pain at least sound more glamorous.

Sadly, I don't really speak French...I'd had plans/dreams once of going to the Loire region in France to study it for a year or so. But those have gone on hold (probably permanently) because of ma maladie (my illnesses), so I dont even know if this (Ma Compagne Ininterrompu: Douleur) is even correct.

Regardless, the statement itself is true. And the past three days have been filled with more pain than usual. I had a fibro flare-up on Monday, probably caused by the inconvenience of one of my teeth breaking, falling out, disappearing last Tuesday. And then needing to wait for a custom crown to be made, during which time, the temporary cap fell out (on Sat). And then my dentist was out of town & his fill-in had the flu...so I had to fix it myself.

That pain probably triggered the fibro/neuropathy flare up on Monday which then cause excruciating mouth pain on Tuesday when my freakin' cap fell out (again). The pain radiated up into my sinuses, my ears, my neck. I wanted to blow my head off, thinking that wouldn't hurt as much (yes, I know that's illogical). I practically ODed on pain killers trying to keep the pain in check (which obviously it didn't).

But now my mouth is nicely numb again with a new temp cap in it while we wait to see if I can have the crown put in or if I'll have to have a root canal first.

Sadly, the intense pain I was in yesterday was most likely exacerbated by my constant "maladies": my hypersensitive nerves that send pain signals out with great gusto.

Because I find complaining about being in some form of constant pain boring/irritating (both for me and the listener), I really try not to complain too much. I actually try not to even think about it too much. Yesterday, however, it took every bit of conscious energy to not cry out in pain, vomit from pain, or become a total freakin' bitch to my mom who (being a saint) took even more special care of me than she already does on a regular basis.

Side-note: Seriously, my mom is awesome: she totally supports me emotionally, financially, and in every other way: cooking, cleaning, helping me with paperwork (which I have trouble with since suffering from not-so-temporary temporary encephalopathy-which is a nice word for brain damage) and on and on and on.

Anyway: this posting is one big complaint: I hate being in constant pain. I hate having dreams dashed. I hate living a limited lifestyle.

And then I remind myself that
a) my physical pain isn't as bad as other peoples'
b) physical pain is easier to deal with than emotional pain~especially grief
...So I should just suck it up and deal with it.

And I will.

Tomorrow.

I found this on Google Images. It's pretty good illustration of my life...I added the items in pale green (smaller font).

It's Official...

I'm really truly having surgery on Monday, March 22nd! Probably around 10am.

Now that it is for real happening, I'm a little nervous! But the idea of never having another period ever again is thrilling! And no more crazy hormones or cysts or tumors. Ah~now that's a lovely thought!!!

My new Medicare PPO insurance came through big-time: that's right, I even get the robotic surgery described here rather than the old-fashioned "open surgery" hysterectomy.

It's only supposed to be a 3 hr surgery (max) and hopefully only 24 hours in the hospital recovering. Now we just have pray the surgery doesn't trigger to horrible of a pain flare-up with my other conditions.

Can I Just Say...

...how much I detest being in pain? Today I want to scream in agony. Nothing has helped. I hate days like this.

This is how my body feels....

Dontcha just hate it when...

....you totally mis-diagnose your self & spend hours at the Urgent Care when you should have been at the ER?

I do.

Totally thought I had a kidney infection. I mean, after having had 7 of them in the past 10 years, I should know, right??? Apparently not!!!

So now the question is: kidney stones or ovarian cysts.

Now, as already stated, I apparently suck at this self-diagnostic stuff, but I'm going to go with ovarian cyst. Why? 'Cause I've already had  surgery for these twice...and have thought that another was in the works...

So, why am I blogging instead of sitting at the ER? Well, I have an OBGYN appointment tomorrow & already have a pelvic MRI ordered so why go today when I can sit at home in comfortable agony versus being miserable at the ER. And with any luck (finger's crossed) I'll be scheduled for a full hysterectomy for sometime soon. (Yes, you read correctly: I want a hysterectomy!!!)

And because of my other health issues (see labels, below), I have plenty of pain meds on hand, so I'm pumped full of those, with orders from the Urgent Care doc to head to the ER if the pain becomes unbearable.

In the meantime, I have the joy of watching my darling niece wander about in the most adorable golfing outfit. SO much better than watching le miserable in the ER!

And now, since this is my blog, I'm totally going to post the grossest picture I could find of an ovarian cyst!

How gross was that?!?!

And now, I will have to leave you in suspense until I know more.....

Blur of Pain

I try not to complain too much or really even mention the pain I live with day in and day out, but today is one of those all-consuming pain days…every joint hurts. In fact my whole body hurts so much that it’s been making me nauseous. My wrists & hands can barely move to type. It’s hard to focus on anything but the pain…I hate days like this.

While I am in pain of some sort every day, days like this have been fewer and farther between. But as for today, I just want to curl up and die. Figuratively of course. But being pain free would be so very wonderful. I can honestly say I don’t remember those care-free days of being pain free. But I know they existed. I hope someday I will experience them again…if not forever then at least for a couple days at a time.
I knew this would happen. I had to fly to CA for a couple days to see my doctors and did really well while there—maybe cuz the trip was so brief. But any sort of stressor, like travel or change in schedule or even emotional ups and downs can be debilitating.

Hoping I feel better tomorrow, cuz I have some funny stories from my brief trip in CA…at least I found them funny. In the meantime, I’m taking more pain meds and am curling up with my saintly mom waiting on me. Bless her heart. My mom is so very supportive of me. I really wouldn't be able to make it without her!
Right now she is doing dishes and washing the towels and rugs from my bathroom…poor things met a terrible plight involving a 5 year old nephew and a tube of toothpaste! But I’ll have to leave that story for another day. Let’s just say Sid the Science Kid probably won’t be viewed in my house or my sister’s for a while as it seems to inspire Van to make his own experiments! Ha ha!!!

In the meantime, this photo may give those of you with keen eyes a clue as to one of my future "funny" stories. Hint: I do not have freckles on my ears and only have one piercing. Can you guess what's going on here???

Thanks Tash!

So while I was with the Posey clan, I got yet another great haircut from Natasha. Not only does it look great straight (which Tash did but I probably won't due to stupid physical issues), but I can go from showered to bouncy curls in just 30 seconds.

Which is great since getting ready in the morning is rather tough right now...

While the move to WA has (overall) been good for my health in relation to the peripheral polyneuropathy (way fewer flare ups), my fibromyalgia has been acting up with the onset of cold weather & rain. It been taking me longer to get up & get going in the morning.

Due to pain & stiffness, it has typically been taking me 1-2 hours to really be able to move after getting up each morning. Today, however, was classic: mom litterally had to pull me out of bed. I think my 12 hour drive through torrential rain on Saturday, kinda screwed me up a bit! I was in so much pain & so stiff I really couldn't get out of bed. Which sucked cuz I had to return the rental car I'd used for my CA trip. (Figures--usually not being able to move wouldn't be such a big deal: I have a very boring life, but the one day I've gotta be somewhere early, I have a completely non-functioning body!)

But at least I look good while immobile, right? Always a bright side! Thanks again, Tash, for doing my hair...you rock!

What Is Wrong with You, Anyway

People often ask me what exactly is going on with me medically...besides the technical terms of peripheral polyneuropathy, fibromyalga, and encephalopathy that I've learned to rattle off my tongue with ease. You can go back & read my original post on this or you can read the following "brief" synopsis of my conditions courtesy of wikipedia:

Ok, so peripheral polyneuropathy is a neurological disorder that occurs when many peripheral nerves throughout the body malfunction simultaneously. It may be acute and appear without warning, or chronic and develop gradually over a longer period of time. Mine occurred slowly over time.

Mine was triggered by severe (like radically severe) deficiencies of vitamins B12 and B1. Many polyneuropathies have both motor and sensory involvement and some have autonomic dysfunction. Symptoms depend on the type of nerves affected; motor, sensory, autonomic, and where the nerves are located in the body. One or more types of nerves may be affected.

Common symptoms associated with such damage are muscle weakness, cramps, and spasms. Loss of balance and coordination may also occur. Damage to the sensory nerve can produce tingling, numbness, and pain. Pain associated with this nerve is described in various ways such as the following: sensation of wearing an invisible "glove" or "sock", burning, freezing, or electric-like, extreme sensitivity to touch.

Under normal circumstances, pain sensations are carried by unmyelinated and thinly myelinated nerve fibers. Guess what huge components of myelin are? You got it, B12 & B1! Guess what your body just sort of needs in general? Right again, B12 & B1.

So my poor body was desperate for this vitamins & decided to “borrow” them from my nerves’ myelin. This caused lesions or holes to occur in the myeline. And after a peripheral nerve lesion (or hole), a neuroma (or nerve swelling) may develop at the stump.

The neurons then become unusually sensitive and develop spontaneous pathological activity, abnormal excitability, and elevated sensitivity to chemical, thermal and mechanical stimuli. This phenomenon is called "peripheral sensitization”. More simply put: my nerves just kind wig out of their own accord.

Moving on: Fibromyalgia, basically means muscle and connective tissue pain. FMS is a disorder classified by the presence of what is often termed “medically unexplained symptoms” that include chronic widespread pain and a heightened and painful response to gentle touch. Other delightful features of FMS include debilitating fatigue, sleep disturbance, and joint stiffness. In addition, people with FMS also frequently experience a range of other symptoms that involve multiple body systems, that include sensations of numbness and tingling abnormal motor activity and cognitive dysfunction. An increased prevalence of affective and anxiety-related symptoms is also well known. Our guess is that the peripheral polyneuropathy was the trigger for my FMS.

Then there’s the Encephalopathy, which literally means disorder or disease of the brain. In modern usage, encephalopathy does not refer to a single disease, but rather to a syndrome of global brain dysfunction; this syndrome can be caused by many different illnesses. To put it bluntly, it’s brain damage. Mine was caused by the stress of the first 2 conditions & involves the loss of my executive skills, low attention span, and some other stuff, that is hopefully reversible.

So there you have it. Simple, right?

Yeah, right! So, basically...I am always in pain. Sometimes it’s not so bad—I can function like a fairly normal person. Yesterday & today the pain just about takes my breath away. Some days I can walk like a fairly normal person. At other times I must rely on a cane to get around; other times it’s a wheelchair; at others I just stay in bed or sit in a recliner. Sometimes I shake. There is always a tremor running through my right leg & often in my left hand. My eye twitches. I don’t notice it so much any more—it’s just one of those things.

Too much stimulus (like a large group of people all carrying on conversations or my precious nieces & nephews running around playing) can make me feel overwhelmed and on edge. Sometimes I can read or watch a movie; on other days I can’t concentrate on anything for more than a couple minutes at a time. I now feel blessed when I’m able to read—it’s always been one of my favorite past-times & I hate it when I am unable to do so.

On really bad days, it takes everything in my power to try to concentrate on anything other than the pain. Trying to take part in a conversation takes every ounce of power I have.

As I said in this post, thank God for my mom...I couldn’t make it without her! So, today, being one of those not so great days, means that this post may not make sense or read smoothly. But at least you know why!

In order for this to not be totally depressing, how freakin' cute is my niece?!?!

And guess who is now eating peas??

Reality Check

If you just casually peruse my blog, you might think my life is pretty easy…and I guess, in a way, it’s true. But only because I have the best support system ever: my mom.


My mom takes care of me physically when I need it; she takes care of the house & all its needs all of time; she does all the shopping; all the cooking; and she pays for everything: rent, utilities, my doctors’ co-pays; my monthly medications (which ain’t cheap!); pays for the car’s upkeep & gas. But most of all, she is a great emotional support, a wonderful friend & confidant.

We can truly laugh & cry together & be silly or (on rare occasions) totally bitchy to each other…cuz let’s face it: I can be a true pain in the butt! And it's not as though she hasn't been through a rather painful past 2 years on top of all of my stuff. But she truly walks in the grace of God.


So if you think that my life is peachy, you're right: thanks to my mom.


So here’s to my mom: I love you, mama!

Oh the Pain of it All

As I've mentioned before, I have fibromyalgia and peripheral polyneuropathy...and some days are good and some days are bad. Today has pretty much sucked. I am racked with pain. I am nauseated from the pain. The pain makes it difficult to even take a deep breath. I can't think well. And I feel guilty about. Ridiculous! The thing is, even when I'm having a good day there is this underlying guilt that I grapple with. It's weird.....But it turns out (thanks, Google!) that guilt (of all things!) often walks hand-in-hand with fibromyalgia & peripheral polyneuropathies~and I have both. So, I guess I have double the guilt! ;-)

So last night, while on Google, I found the following letter written by a fibro sufferer to "normals" (those who don't have this dibilitating disease). Thought I'd share it...

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,
Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.
I want to talk to you about Fibromyalgia (FM). Many have never heard of this condition and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM has assaulted not only my life but those whom I love as well.
You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you won’t see my scars as you would a person who, say, had suffered a car accident. You won’t see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....
Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....
Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.
I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose” the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn. Please try to understand….
Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.
And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!” “What is your problem today?” The hurt I experience at those words scars me so deeply: that I have let my family down again; and still they don’t understand….
On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.
So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….
Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand…. Copyright of www.fibrohugs.org Written by Ronald J. Waller

There is so much in this letter that I emphatize with. I am ever so grateful that I haven't been abandoned by the majority of my friends & family and that most are sympathetic without being overt pity. But I have noticed that I don't tend to make plans too far in advance because I never know how I might feel. I also shy away from meeting in larger group and/or noisy settings because I get confused easily & find it harder to make conversation in those settings. I hate not understanding or not making sense when I talk. I also shy away from meeting new people because I'm afraid of appearing stupid or clumsy or I don't want to bore people with my medical problems by monopolizing the conversation trying to explain my issues...and I don't want people to think I am reaching out for pity or sympathy....Hmmmmmmmmm....sensing that vague underlying guilt-thing going on in this paragraph.

Oh well~just cuz I know it's part of my condition(s) doesn't mean it's going to go away, right?

C'est la vie....(insert big French shrug here).

Bon Soir ~ M

Who am I?

Everyone has been telling me I should start my own blog..."Why?" I've wondered...My life is boring! Maybe it's cuz I overwhelm them with email notices from Snapfish? (I do take a lot of pictures!) Maybe my friends actually think I'm interesting! Or maybe they don't realize how boring my life actually is? Never-the-less, friends kept encouraging, so here it is: Mixed Up Musings from Auntie M. Perhaps if I just think of it as talking to myself~which I do anyway~it won't be so weird feeling. Who knows?! Guess we'll find out!

OK... So who am I? Hmmm...how to start? I am a (nearly) 39-year-old single woman who has seen her fair share of triumphs & tragedies and is fervently hoping the former out-weigh the latter! Hoping the triumphs shine through and the tragedies~while molding a part of who I am~will never define who I am. (Guess that sounds ok...????)

(Some of) the Hard Stuff:

I was once a career(ish) woman (let's keep this real!) who kept hoping love, marriage, & children would eventually come. Guess what? They haven't! I've always wanted children~both natural & adopted, but the fates of time (and health) have intervened. Several years ago I started noticing that something was amiss with my health. But I couldn't quite put my finger on what it was and as things progressed (downhill) neither could doctors. I began falling a lot (not realizing that I had really lost feeling in my feet & lower legs). I felt sick all the time--I bought about a gillion thermometers convinced I was running high fevers and none of those freakin' thermometers worked! But I knew I had fevers: I was flushed, my body ached & tingled. I couldn't concentrate. I was gaining weight rapidly despite eating healthy. I'd had to quit exercising due to all of the above, but still!

Eventually I was forced to go to doctors...but only because I fell once again (over nothing) & managed to break my foot & sprain both ankles. Then the truth came out~I could no longer deny that something was wrong with me. While the search was on for a diagnosis, things just got worse & worse...I lost feeling in my hands & arms, had tremors in my extremities, was increasingly unable to walk, and was even experiencing temporary paralysis. I had pain throughout my entire body~muscle & joint aches, the feeling of pins, needles, knives across my skin & through my entire body. I began to lose my language & executive skills.

I went through multiple doctors (including a neurologist who told me I was crazy & it was all in my head). As I searched for answers, I slowly built up a team of good doctors: I already had a great OBGYN, and soon added a new GP, a rheumatologist, and~finally~a great neurologist. Later a neuropsychiatrist & an endocrinologist also joined the team.

The results: I have fibromyalgia that was most likely triggered by the peripheral polyneuropathy that had been caused by a SEVERE lack of vitamin B12 as well as a lack of B1. Lacking B12 turns out to be a fairly BAD thing!! The stress of all this caused (hopefully) temporary encephalopathy. Basically: my body gave out on itself. I had to quit my job. My mother moved in to take care of me. (*Note~if you truly want to know what some of those medical terms mean, go to Wikipedia & search them out...I'm not going to really bore you w/all those details!!

The good news is that while I may never fully recover, I am getting better. My balance & walking have slowly improved. Some days are really great~I feel almost normal. Some days are really rotten~either being racked with pain and/or trouble speaking/thinking. I am in some sort of pain every day. I take a ton of medications to keep me from trembling, to reduce pain, to help my brain function. I do weekly B12 injections to keep my body balanced.

The biggest blows~for me~were:

1) losing my independence

2) Dealing with loss of brain function (I like to think I was pretty damn smart, so not always being able to remember words, speak fluently, or concentrate well really pretty much sucks)

3) Never being able to have children of my own (being pregnant can kill me~my brain is too fragile to handle the hormones) or being able to adopt (there's no way I could take care of a child because of my health).

To be honest, number 3 hit me the hardest.

(Some of) the Great Stuff:

OK~enough of all that crap...who wants to hear about all that?!?!

Now for the biggest joy in my life: Being an Aunt! I am proud to say that I am the aunt of 3 wonderful nephews and 3 wonderful neices...with another little one on the way.

Those who know me, may ask where did she get all those kids from? Didn't her sister & brother-in-law just have their 1st child a mere 8 weeks ago? And aren't her brother & sister-in-law just now pregnant? True...however I am proud to also be called auntie by 4 other wonderful children.

I am the oh-so-proud Auntie M to my wonderful, adorable, brilliant niece: My little Tea~Rose who was born February 24th to my sister & her husband...

Yes, that's us! :-)

I am also proud to be an aunt-in-waiting to my brother & his wife's little one who should be here shortly before Thanksgiving:

Wonder who he or she will be!

I also get to play auntie to my brother-in-law's incredible neice & nephew, Kenyan & Van. I adore them & love spending time with them. I am so blessed to now live only 5 minutes away from them (and my Tea~Rose).

Aren't they cute?!

I am also auntie to my sister-in-law's neice, Ava. I've known her since she was 2 & now she is such a grown up girl of nearly 10 years old! Gracious!!

A & her Auntie D, my sis-in-law

And one of my dearest friends, Natasha lets me be auntie to her 2 beautiful boys. Thanks, Tash! I miss Jackson & Sawyer....a visit from Auntie M is long overdue!!

Adorable, I know!

So there you have it...the beginnings of a blog from someone who, while thinking her life is fairly boring, knows that it is over-filled with love!