Yes... I am a stay at home mom, and I STILL matter

Today I had someone ask me if Jacob is going to be in kindergarten next year, and after I said yes she asked with a hint malice," Well, what are you going to do with yourself then?"

You see, I am a stay at home mom. Not because I believe I am better than anyone else, or find that though we have sacrificed greatly for me to stay at home with our babies that my sacrifices are greater than those of anyone else. I simply did what I thought was best for MY kids.

So many things ran through my mind in a matter of seconds. I want to snap back that I would probably CONTINUE to do the thousands of things I do every day, you know like laundry, cooking and general cleaning up for 4 other people. I would continue with the tedium of clipping coupons to scrimp since we are on one income, shopping for the best deals and sales to stretch our income, agonizing over bills and sticking to a budget to buy those groceries, spend bits and pieces of time with my kids, fretting over my jewelry business and struggling to make time for it... day dreaming about creating something with my hands like painting or drawing.

On top of all of those things struggling to get out of bed in the morning because of unbreakable cycle of insomnia... which makes my debilitating fibromyalgia pain and chronic fatigue syndrome much worse. Developing a new heart problem which contributes to the fatigue. Grappling with system crippling allergies that keep me locked inside on the most beautiful of days, and knowing that because of all of these illnesses that I can no longer work and contribute to supporting my family causing depression and anxiety. Knowing that if a dear friend of mine with most of the same illness as me (only worse) is having a hard time getting disability so my chances are very slim... hating that I once was a nurse but can no longer do the job I loved even if I really wanted to and that this was NOT how I planned the last half of my life going...

In mere moments I was knocked down and belittled, angry and confused as to why this person that I haven't seen in almost 6 months would want to verbally snipe me... if only she knew, CARED to retain or bothered to read my status updates, (though I guess honestly despite all this I try not complain on Facebook much because who wants to read that?).

I have been working in some capacity since I was 10 (family business, paper routes, ice cream stands, groceries stores all before I was 18), I have paid my dues as a productive member of society until 14 years ago when I became a stay at home mom. I don't deserve the implications that I sit on my ass all day eating fritos and watching soap operas.

I wanted to respond in kind, I wanted to hurt her back but as unhappy as I felt at that moment and have been feeling for over a year I realized she was probably so much more unhappy than me for wanting to make me feel less than for staying home with my kids at first by choice... and then later out of necessity for health reasons.

I did not glean an ounce of joy from realizing that she was more than likely jealous of the lifestyle she THOUGHT I was living. It didn't make me feel superior that she was most likely very unhappy.

I don't need to match someone else's guidelines or validate my choices... and I certainly do not matter less because I do not or can not hold a job outside of the home. Despite all my unhappiness and longings I still would have left a very lucrative job as a licensed practical nurse in California  14 years ago to move back to John's hometown in Iowa to stay at home to raise Anna myself. I matter, I have and will continue to make a difference if only for my family.

In those moments that probably only took up 30 seconds I replied with a slight smile, in a soft voice, "Yeah, who knows." I let it go.

Long story short  (TL;DR) , not every circumstance is an opportunity to level the playing field. Sometimes we need to show a little kindness and walk in someone else's shoes. And sometimes the kindest thing we can do is keep our mouths shut. I really wish for a time when women lift and support one another instead of "sweeping the legs" out from under them Karate Kid style, for very personal choices and very valid reasons that are diminished to presumptions. I hope we can be kinder to each other as humans as a whole because we really never know what is going on behind closed doors and closed hearts.

It's been a year

One year ago today I was diagnosed with fibromyalgia, and it's been one roller coaster of a year for sure. It's been a long, dark and scary back alley of a year in some respects; an alley that I thought I was destined to walk alone, desperately looking over my shoulder as I scrambled to find an exit or some safe haven from the horrible unknown that skittered in the dark closely behind me.

Then around a week later my best friend in the whole world was diagnosed, and in the most odd/bizarre/tragic/morbid/comical way... suddenly I was not alone. We traveled  together, huddled in the dark while taking turns shining a flashlight for each other; shedding light on pitfalls and outright stumbling blocks in our path.

We have laughed and cried together out of grief and terror, we have fallen silent and morose. We have joked about the possibilities of the illness, and have related to each other in ways that even our loved ones fail to comprehend. Monique and I both have a better understanding of what we are dealing with, and we have shared a wealth of knowledge with each other.

In these ways, my life has somehow become richer. Through common ground and despair, we have connected on a level I never thought was possible. We had discovered mere months before being diagnosed that we were best friends, already a friendship deeper than ANY friendship I have ever had outside of my marriage. So deep in fact that she asked that I be the godmother to her unborn daughter. :) We have so many similarities, so many odd things in common that it's mind boggling... then to have this happen?

The most mind blowing thing from all of this is that we have not met in person yet. In just 14 days I get to meet my other soul mate, my sister from another mister... my life doppelganger.

I am so thankful and utterly grateful to have her in my life. We have gotten each other through so many rough spots in the last 12 months, and have created a relationship bound (and gagged) in love and laughter since July 2011.

Simply put, I could not have gotten through this last year without her*.

I cannot wait to see where this road goes next, Monique "Bella Boo"!
I'm positive. *wink*





*Of course it goes without saying that I could not have gotten through this year without my loving and supportive husband, who is the yin to my yang. Love you MISU!

Fibromyalgia and vitamin D

Well... Back when I was diagnosed in April my doc wanted to check my vitamin D levels. I was asked to sign a waiver since my insurance most likely wouldn't cover the cost of the lab test, costing me 200.00 out of pocket that I didn't have. I did NOT take the test. I just could afford it.

My best friend (oddly and eerily) was diagnosed only 2 weeks after I was, and her doctor put her on a really high dose of vitamin D. It seems that according to a few studies (Google Vitamin D and Fibromyalgia) the majority of people suffering with fibro are deficient in vitamin D, or are on the low end.

I finally broke down and bought some since the MISU has a new, better paying job. Yes, I splurged on vitamin D ;) I have taken it 2 days now at bedtime (2,000 IUs) with a snack and children's gummy vitamins (with 400 IUs) since I haven't found an adult multivitamin yet that doesn't make me have nausea and vomiting.

So far so good! I am happy to report that I wake up almost pain free, where as I normally wake up with pain in a 4-5 out of 10 (max pain) or will develop that level or more throughout the day. Today we went shopping and I didn't have any significant pain until about 530 or 6pm. AMAZING.

Also I was able to enjoy the day and not feel continuously fatigued today and yesterday.

If you suffer from fibromyalgia and have not checked your vitamin D levels , it's worth asking your doctor about it and how much you should take.

Hair loss and fibromyalgia

It's been awhile since I have posted, and my goodness it's been busy here. My oldest just started middle school and my middle child was transferred to a different school because of zoning. Because of where we live, our street always seems to be where the cut off is so my kids get shuffled around every 1-3 years. It can be frustrating. Luckily my kids adapt well.

On top of all that we are trying to introduce our 2 yr old little man to potty training. We are literally taking baby steps. He has tried about 10 times to go, and has gone once!!! Slow but steady, that's ok with me. It's about all I can handle right now.

As far as the FM goes, I am up to 20mg a day of nortriptyline. It helps a lot usually but there are days when I have breakthrough pain, irritable bowel symptoms, fatigue, and heavy limbs. Today I am struggling with  a bit of all three but I am keeping positive because I have so much to be thankful for.

Some of the side effects of the medicine are possible hair loss and depression. (Yay ME!!!)  I definitely am having both but I am reluctant to switch meds again since nortriptyline seems to keep most of the pain at bay. I can handle the fatigue by taking naps and letting my family know I am having a rough day, so I would much rather have fatigue than pain- that may or may not respond to NSAIDS.

The hair loss is kind of bothering me but it's not so bad that I have huge bald spots. It started a little over 2 weeks ago. I googled "hair loss+ stress" and found that hair tends to fall out from stress about 3-4 months AFTER a stressful event. I was diagnosed with FM about 4 months from when my hair started falling out noticeably.

I decided to get my long hair bobbed (which resulted in a choppy hair cut I had to try to fix myself LOL!!! And now have to get refixed *SIGH),  alleviating stress my pony tails probably have caused on my scalp, but I am also going to make an appointment with my doc to make sure it's not a thyroid issue. I only have my left thyroid after having the right side removed over 8 yrs ago for a large benign mass. I will probably need to really start looking into vitamins as well since deficiencies can also contribute to hair loss.

I have had some weird changes in relationships lately, so I hope I wont be having more fallout in 4 months. YIKES. Overall though I have a family that loves and understands me, supports me on the bad days to the best of their abilities, and I have comic relief in everyday life from some new friends who enjoy Breaking Bad as much as I do... meaning we are all completely OBSSESSED. Comic relief from my family is a given ;)

It feels as though I have weights on my arms and hands as I type this but I'm staying positive by focusing on the positive. I'm also jumping back in to jewelry making and nurturing my little business as I have been too tired to deal with it in the last 2 months.

 Found this today, so appropriate! Love!!!

So much to look forward to and to be hopeful for. *Yawn* I need a nap.

Keep your head up folks!!!

Much love,

Mary

Excuse the dust, this body is under construction

Well, let's see... I'm on dose 4 of Nortriptyline for the new ball and chain in my life, fibromyalgia. I wouldn't say life is better per se, just a little different. I know, I know. I'm only on day 4. I need to give it time to build to a therapeutic level.

Some days have been good and some days have been meh. I'm lucky that so far I haven't really felt any adverse reactions from the medication except for a mild dizziness at times. I did have some nausea this morning but very mild in comparison to what I normally have been feeling every morning for almost a year now.

Yesterday and today my knees are bothering me, and I was unable to make it up the stairs to wake my daughters up for school today. Luckily I was able to coax my oldest out of bed by telling her I couldn't come up this morning.

Otherwise I have hours where I feel pretty good overall. Then I will have a chunk of time where I ache, but not severe pain in more than 6-7 spots like before I started this medication. For the most part I'm back to having 3-4 level pain (out of 10) at times in several spots of my body, but I have been living with that for many years so it's manageable.

Emotionally I feel very isolated, I have had a few people tell me they are available if I need to talk. As with the pain of my childhood, I know from experience that my life is unrelatable for the most part. I have struggled with having been physically and mentally abused by my mother, sexually abused by my father, infertility...

 I understand that most people cannot grasp what I explain. I get the general feeling that the things in my past are too crazy, too horrific for most people... and fibromyalgia has made me feel this way once again.

In the end, people ask the questions but rarely really want to hear the answers. So I have learned to plaster on a happy face. Not many people get to see behind the curtain to the real me which is fluffed, powdered and painted for the general masses... for public consumption. I self deprecate and joke to hide my pain, but I have been doing this for so long it is my song and dance, my vaudeville production. I find myself hovering just at the edge of despair and try to go about my day as I would have before my pain was given a name.

What I find hilarious on a cosmic level is this: I have for many, many years swallowed my pain, distracted myself from the depths of depression, avoided "professional help" because I do not want to be lumped in with the likes of my mother. I do not want to be diagnosed with mental illness. I do not want to be told I have problems and that I need to be on medication. I most certainly have never wanted to walk around in a drug induced haze to numb the pain.

And yet here I am... on an antidepressant for this. I have laughed bitterly about this to myself. I can do nothing but cry out to God for some sort of solace and relief, and even though I know ( and have known in my 42 years, and the knowing has kept me from falling into the blackest of  depressions) that there are all sorts of people out there in this world- especially little ones- that are going through so much worse than what I have experienced in my life.

It makes me sad and thankful. It makes me pray on occasion, especially when I happen to hear the unspeakable things going on outside my little bubble.

It brings me to my knees and I thank God for the breath I draw, for this life that I have, for a man that loves me even though I have fallen short in so many ways, for children that I was told I would never have.

So excuse me for a moment, pardon my dust while I sort through the storm. I will find a place of quiet safety, I will be glad for all that I have... mostly. :) It's not going to be rainbows and Disney animals all the time folks but even now I am swimming my way to the surface for a breath of air.

Excuse me while I let love and light build to therapeutic levels.

 I am still trying to change my point of view, one positive thought at a time.

I passed the test...Do I get a prize?

Today I had my doctors appointment, and let me first say that I am so blessed to have a family doc that listens and does not patronize me. He truly cares. I suppose it helps that he and John go to the same men's group at church on Saturdays and that they are kind of friends.

Knowing me and my medical history can be overwhelming so I took some time this morning to type up a brief history of complaints specifically related to what I think is going on with me. Call it OCD, call it odd... You would be right. I am nothing if not prepared.

After listening to me, and letting me know he had read my semi-exhausting exhaustive history, he told me that there were pressure points he wanted to check. I nodded in agreement, wincing internally, already knowing where those points were from my Google searches on Fibromyalgia.

It went a little something like this:

Doc, while pressing on my hips: Here...

Me: Yeh-ESSS!!!

Doc, pressing my lower back: Herrrrre...

Me: YUP!!!!!

Doc, pressing my right inner elbow: HERRREEE...

Me: Ummmm no...

Doc: Really? *he moves his fingers slightly*

Me: OK. Yes. YESSS!! YUUUUUUUP!!! *begging and pleading with my eyes and inflection for him to stop*

It went on like this until he had checked all 18 points, apologizing profusely as he went. He then told me that I had all 18 out of 18. My doc told me, "Yes, I believe you do have Fibromyalgia. You have all the classic symptoms."

 He wants to try the lowest dose of Nortriptyline one pill at bed time, then to see me in 4 weeks.

Having been a nurse I already knew that serotonin plays a big part in a lot of disorders and illnesses like OCD, depression, altered pain pathways and excessive pain. I also already knew that depression meds have been helpful in these instances so I was not surprised to find that I would be on a med that was normally prescribed for depression.

He is also having me try a new medication for reflux. I have had a sensitivity  and allergic reactions to many medications in the past, including recently Prilosec. I have taken Cymbalta in the past and only stayed on for 5 days because it made me feel nauseated and sick, loopy and apathetic. I hope I do ok on these new meds. I guess I'll try the Nortriptyline first, taking two new meds would be just stupid in my case.

I did cry briefly when he gave it a name. I'll be honest. It was a mix of relief and sadness that washed over me, but he was very sweet and that made such a huge difference. He reassured me we would try what we needed to until we found something that worked for me.

On a lighter note!!! (wait for it... )

He told me to stay away from caffeine, chocolate, greasy food and spicy food. I gave him a grumpy face and "harrumphed", and he laughed.  I told a dear friend today that my doctor had basically cut out my whole diet.

What happened in the next few minutes is typically what you can expect from me. I always use humor to make people laugh, deflect pain, lighten the mood. It's one of my strongest survival skills. My doc asked my how on earth I had gone this long without being diagnosed, why I had never brought up fibromyalgia before. I told him again how I lived most of my life in pain, pain was just a fact of everyday life for me. Being that I have not spoken to my mother in eight years, it had not ever entered my mind until I started having MORE pain, and more pain simultaneously.

Doc, shaking his head and chuckling: Well, you have 18 out of 18...

Me: I'm an over-achiever... you should already know this about me!!! I had 30 gallstones for Pete's sake, I don't do anything halfway!

When I told my husband what my doc had taken out of my diet, he nearly fell over laughing hysterically. I pleaded with my husband, "What the -insert expletive here- am I supposed to eat then? RICE???"

I guess I'm going on the Survivor diet.

This is the face of Fibromyalgia :)

 One day it will be this again...

Until then ...


I hope and dream.

~Mary

Hoping

I'm hoping there is a light at the end of this tunnel; I know tomorrow's doctor visit is just the beginning of finding out what is going on with my body.

I wonder if he will send me to a rheumatologist?

I basically feel like I have the flu[s]. I am so tired, my body aches in different spots, sometimes all at once. I have lower stomach aches every time I need to use the restroom, and I often become nauseated. That coupled with CONSTANT heartburn and the fact that I fell yesterday (I am feeling the affects of that on the right side, the side I fell on)...

I can feel myself slipping into a depression. I do not want to live like this for the rest of my life, but it's not my choice.

I feel like my constant complaining is annoying to my family, and they tune me out. So I choose to suffer in silence. They ask me what's wrong. I say "nothing".

My 20 month old is going through an extremely clingy phase just like the other 2 did. I find I cannot walk 5 feet, let alone leave the room for a few minutes without him whining, crying or going full tilt. It makes me more anxious... I feel so trapped in so many ways.

The things I choose to concentrate on  are giving my kids hugs and telling them I love them, thanking them for helping me when I ask- even if they help me begrudgingly. I have been trying to be affectionate with my husband but I'm not sure he notices (or cares) , which makes me desperately sad. BUT... my kids accept my love and soak it in. That will have to do for now :)

Tonight I get to polish some jewelry I have up for sale in a salon in town, bring in a table for the vintage teacup candles I have made and a table to display them on. I also hope to get in a few new pieces as well.

I'm hanging on to the glimmers and glimpses of hope, and in the meantime I try not to be too anxious about wondering what my doc will have to say.

I hope you have a peaceful day, wherever you are.

~Mary

What is this pain? Could it be fibromyalgia?

I have been living with physical pain for quite some time, I believe my first chronic pain started when I was 11. I can remember falling onto my back from a great height for the second time in my life, the first time being when I was probably only 4. Since the 6th grade I have had back problems.

Everyday I have pain. Sometimes aches, sometimes a tremendous amount of joint pain after sitting for 1/2 hour. This has been my life for the last 31 of my 42 years, until recently.

Let me just say that having a baby at the age of 40 was hard on me, I strongly recommend you do NOT try it unless you are of sound body! I was very sick most of the pregnancy, living from my recliner and just standing for a few minutes had me contracting. This son of mine took me down, literally. I shrunk a whole inch while pregnant with Jacob. I ached, I struggled to move from my trusty recliner just to use the restroom or get a drink.

Nearly two years later, still feeling so very sick after he was born my surgeon discovered a whopping 30 gallstones in my gallbladder. But why I am I still nauseated most mornings? Surely I cannot live like this after being told that I would feel so much better after having my gallbladder removed.

And now, two weeks ago I started having aches and pains in my left shoulder which gradually escalated to full on fire and tenderness. Just gently wrapping a towel around my shoulders after a shower brought tears to my eyes just a few days ago.

The pain seems to have started in my left shoulder and each day after moved across my torso a little more. I don't mean that the pain was only in the new spot, I mean I was and am having simultaneous pain firing off at the same time throughout my body. It brought me to tears. It has worked it's way to my right shoulder now and my lower right back.

In the midst of this I realized that my mother had told me many years ago that she was diagnosed with fibromyalgia. I Googled symptoms and I seemed to have the almost all of them, which is unsettling and yet comforting at the same time. The cause of my pain now (possibly) has a name, yet the thought of living with this for the rest of my life is very depressing.

From WebMD:
Common symptoms of fibromyalgia -- also known as fibromyalgia syndrome or FMS -- may include:

• Pain
• Anxiety
• Concentration and memory problems -- known as "fibro fog"
• Depression
• Fatigue
• Headaches
• Irritable bowel syndrome
• Morning stiffness
• Painful menstrual cramps
• Sleep problems
• Swelling, numbness, and tingling in hands, arms, feet, and legs
• Tender points
• Urinary symptoms

I once again am sequestered to my trusty recliner while my house work and jewelry to do list seems to grow to unmanageable levels. I take care of my kids and do the basics like dishes, while the laundry piles up.

In the meantime, I have an appointment this next week with my family doctor. I am axious to hear what he has to say. 

If you have a history of FMS and you have some tips for me or websites that you would like to share, I would be grateful! Tell me what you are doing to ease your symptoms and what you are doing to cope.

Thanks for reading!
 Keeping it real, keeping it honest with a glimmer of hope,
Mary