Last weekend the baby had a stomach bug and I felt so bad for him….  Well now I have that stomach bug and I feel bad for ME!  This is terrible.  Think all the worst parts of the flu but leave out the fever.  No fever yet (knock on wood).  I’m hoping it’s a 48 hour thing and I won’t be out of commission for too long

I’ve decided that I need to lose weight to see if that helps with my back and legs.  I’m not HUGE but I could stand to lose about 40lbs.  I want to try all the non-evasive or least-evasive things to help myself before someone suggests  a more drastic step like surgery.

All in all until this bug hit me this has been a good week.  I was able to get up both Monday and Tuesday.  Tuesday I even took the baby out shopping for a while to get some Christmas stuff.  I’ve been able to sleep a little better too 

Lately I’ve had a lot of pain in my legs, almost constant.  When they aren’t hurting then one or both of them have gone numb.  Sometimes my right arm/hand goes numb too.  So far (knock on wood) my left arm hasn’t ever gone numb.

Two times in the past week I’ve had trouble peeing.  I don’t have a problem holding it but when it’s ok to go, I have trouble with my stream.  It will be very week and I’ll just sort of “tinkle” for a few minutes.  Sorry if TMI.

I’ve also started to notice that sometime I have a hard time with my fine motor skills.  Turning the pages in a book, typing, chopping something in the kitchen all make my hands shake and make it more difficult.  It’s almost like I don’t have the muscle control that I used to.

When I’m cold my symptoms are worse.  I seem to be cold a lot lately, more than other winters.  I always have a sweater on or I’m wrapped up in a blanket.

I have no idea if these are all connected or just random.  I wish someone could help me.

Not being able to feel or move either leg is much more scary than not being able to feel my right side.  This just sucks.

When I get a migraine… what I have always thought of as a typical migraine, yes there are times that it affects my vision.  I’ll see spots or trails and a lot of times I’ll need to wear sunglasses or keep my eyes shut.  I’ll also get sick to my stomach, my sense of smell gets very heightened, and my skin will feel extremely sensitive to the point of painful.  Noise of almost any degree can send me to my knees.  That is my “normal” migraine.  I’ve had them for 10+ years and have gone through a lot of medications and therapies to figure out what works and what doesn’t.  Stress and my menstrual cycle make them worse.  A preventative medication called Propranolol ER helped a lot as a maintenance medication.

When I lose feeling in my right side and can’t move I have none of the above symptoms.  A lot of times I will wake up in that condition.  There are other times when I’ve been walking or standing for hours and then I lose feeling in my leg and will eventually start to drag my foot when I walk.  Recently we went to the zoo for a few hours and a museum for another few and both times I had issues towards the end of the trip. 

There has only been one time when I couldn’t move or feel the right side of my face.  I only noticed it because I was drooling on myself and when I wiped my mouth I couldn’t feel it and then when I talked I had a slur.  When my leg and arm won’t move I can move my shoulder and hip joint.  I can’t move my elbow, wrist, fingers, knee, ankle, or toes.  So far (knock on wood) it hasn’t affected my being able to use the bathroom properly or eating/drinking, and breathing.  Sometimes the lose of feeling will last a few hours.  One time it lasted almost 24 hours.  There have been a handful of times that when my right side was “waking up” it really hurt badly.  It wasn’t the pins and needles like when your feet fall asleep, it was more like a stabbing, burning sensation.

I just don’t agree with his assessment.  I know he went to school to be a doctor and my best reference is the Internet, but I know what my body is feeling and I can predict with some accuracy when I’ll lose feeling.  I’ve suffered with migraines for over a decade and have NEVER had this be a symptom.  I only saw my Neurologist twice and talked to him a total of 30 minutes.  I need to talk to my PCP again to see if she can help me find a new Neurologist.

There seems to be a train of thought that the lower back pain/herniated disk problems and the right side problem are two seperate issues.

Anywho…

I wish everyone a Happy and filling Thanksgiving.  Remember the good times, improve upon the bad, give thanks for what you have.

From all the research I’ve done the best things for Chronic Pain are rest, exercise, medication, reducing stress levels, and diet.

I don’t sleep all that well, I’m not getting any exercise anymore, I have started medication, stress is…  well it is what it is, and my diet has gone down hill.  I crave sugar ALL the time.

I wrote out a few lists today trying to figure out how to prioritize what I want out of my day to day life. 

• I’d like to get up at a normal time and see the kids off.
• I want to keep the house up and be able to run the errands that keep the house going.
• I want to be active with the kid’s schooling and activities.
• I want to do some exercising.
• I want to be able to rest when I get too tired.
• I’d like to not be dependant on narcotics and try to manage the pain with things that won’t alter my mental status.
• I’d like to be able to fall asleep when it’s bedtime.
• I want to spend time with my kids and husband.
• I don’t want to let anyone else define what a “mother” and “wife” is for me.  I will do the best I can.

In order for this to happen a few things need to change.  I think in the mornings I’ll take a walk around the neighborhood, after the big kids go to school, with the baby.  I’m going to do my hair and put on some makeup each day, regardless of how crappy I feel.  When the baby takes a nap, I will nap if I need it.  I will learn to let things go emotionally that I can’t change or fix.  I will take my time and not rush through the kids homework.  I will take the Cymbalta nightly and try to not take the Percocet or Vicodin unless it’s a last resort.  I will not beat myself up when I can’t do something or i’m too tired.  I will make the most out of everyday.  In the evenings after dinner sometimes as a family we can play some of the sports game on the Wii (family time AND exercise).  Lastly, and this is silly, but I will make sure the kitchen is cleaned up every night before I go to bed.  It’s always easier to wake up to a clean kitchen than a dirty one.

I will be ok.

Today I woke up late but made it to breakfast.  I am sore and it hurt walking up the steps but I wanted to eat pancakes with the family.  I just feel so tired… and things hurt.  My Hubby constantly asks me what hurts and what can he do to make me feel better, which just makes me more upset.  The baby went down for a nap and my step-son and Hubby are bonding over football so I decided to come back downstairs and try to take a nap.

I started the Cymbalta today.  Hopefully, knock on wood, it helps with the nerve pain.  I also took a Soma this morning so I’ve been taking that aboout 5 days.  I’m just looking for the right combination of things that will help me function at a close to normal pace.

I don’t want to miss my children growing up.  I don’t want to have all the happy times filled with pain and exhaustion.  I don’t know about you but when I’m tired i’m cranky.  We are approaching Thanksgiving, 2 of the kid’s birthdays, Christmas, New Years, my birthday, and the babies birthday.  Just THINKING about all that has to be done makes my head spin.  If a trip to the grocery store causes me to hurt, how and I going to handle Christmas shopping and WRAPPING all those presents??  UGH.  I. JUST. WANT. TO. FEEL. BETTER.

On days when I’m having a lot of pain or numbness I can’t pick him up.  I have a hard time getting his diaper changed.  I can’t get on the floor and play with him like I should.  He’s a really good boy and is content to bring his cars and track to me, but what about when he wants to show me something and I can’t follow him?  His new favorite things are animals.  He has tons of “amimal” toys that he carries around.  Yesterday he was putting his “amimals” to bed and since I couldn’t follow him he decided to put me to bed to.  He directed me to lay down, put a blanket over part of me, and then sang us all “Rock a Bye Baby”.  Sweet…  but pathetic on my part.  I’m his mother.  I should be able to play and wrestle and tickle him.

The older kids are a lot of help and very understanding.  Sometimes I have them come into my room where we talk, work through homework, and watch TV together.  My oldest is growing so fast and I’m afraid if I blink she will be grown and gone.

These are the years that I’m supposed to be at my best.  I’m 30 and I have a family.  I’m supposed to be able to do everything…  I used to be SuperMom (although my SM vest was cleverly hidden under my t-shirt).  I would expect to feel like this when I was 70 but by then my children would be grown and I would have had years with my husband.

I’m trying to develop a game plan so that I eat better, get my meds, get exercise, get rest, and can still be the best Mom and Wife I can be. 

Right now my little chunk of love is saying, “Hi momma. Wanna pay amimals?”  Off to “amimals” I go.

One the positive side, once I took the Soma I had NO pain.  If I can stay awake and still not have any pain for a few hours then this will be a Godsend.

Five years ago if someone would have told me that at 30 years old I’d have chronic pain, I would have thought they bumped their head on something.  Yet, here it is, 5 years later and that’s what I’ve got…. chronic pain.

Things started simply with feeling achy or stiff and chalking it up to the aches that go along with mothering 4 kids and keeping up the house.  Then people started to ask me if I was sleeping well because I didn’t look well rested.  I admitted that I wasn’t sleeping well but I did always feel exhausted.  At one point I slipped and hurt my back.  The doctor order a MRI of the lumbar spine and it showed a herniated disk.  I was told that it’s not really that big of a deal and to take some anti-inflammatory meds and go to physical therapy.  I consented and went to my appointments.

I soon noticed that something simple like doing the weeks grocery shopping caused me to take a 2 hour nap and pop a Vicodin because everything hurt.  I started having major issues with my right side about a month ago.  My arm and leg would go completely numb to the point of being paralyzed and when the feeling came back it HURT like nothing I can describe in words.  I also have this intense burning that comes and goes and sometimes makes wearing clothes unbearable.  I’m still having the achy pain all over but the right side pain is more my focus these days.

I’ve had problems with my thyroid.  Problems with my bowel.  Problems with my menstrual cycle.  I figured these things were just all part of getting older….

I’ve had a complete blood workup, seen my Primary Care Doctor, a Spine Specialist, a Neurologist, gotten an MRI of my lower lumbar spine and a separate MRI of my neck and C-spine.  I’ve had a nerve test and an EMG.  I’ve been treated for depression because me telling people I wasn’t depressed, just in pain wasn’t enough.  I’ve refused a whole slew of medications because I can’t take anything that is used as an anti-seizure medication.  I have a bad reaction to them and the reaction far out weights the problem.  I’m not lazy.  I don’t hurt because I’m overweight.  I’m not depressed.  What I’m feeling is real and I need a doctor to really treat me so I can get on with my life.

Tonight I had another appointment with a neurologist.

      “Tell me about your pain.”  Me… “Well I have a lot of pain.  My ankles and wrists always hurt.  Sometimes my shoulders hurt but that could be from carrying the baby around.  My back hurts to the point on some days where I stay in bed.  Lately I’ve been losing feeling in my right arm and leg and the burning is terrible.”  Him… “That doesn’t sound pleasant.  What have you been doing for it?”  Me… “Well… I’ve seen doctor a,b,and c.  They’ve given me medicine 1,2,and 3.  I’ve had all these tests.  Two days ago my PCP was in a panic and set up this emergency appointment so i’m here.”  Him…”Do you think you’re depressed?”  Me… “No (Grrr)”.  Him…”How’s your sleep?”  Me… “I have trouble falling asleep.  Mostly because when I start to fall asleep I feel like i’m falling and as a result I throw my arms out to stop the falling and then I hurt myself further.  I’m exhausted a lot though.”  Him… “Hmmm…  Have you ever heard of fibromyalgia?”  Me…”Yes, but I don’t know much about it (with my heart getting heavier and heavier)”.  Him…”Well I’m going to prescribe you 2 medications.  I want you to research fibromyalgia and we’ll set up another appointment for next week.”

I just want to be a good mother and wife.  I don’t want the rest of my experiences to be filled with pain.  I need help getting educated on how to not let chronic pain turn me into a bed ridden mess.

Fibromyalgia…. game on.