Diagnosed Fianally

Fibromyalgia with Seizures, it's not common for these two to go together but if Fibro is left untreated over the years you can start to have seizures because of the stress it puts on your body, or so my doctor tells me. I'm still researching.

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.

Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue.. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities

Fibromyalgia causes you to ache all over. You may have symptoms of crippling fatigue -- even on arising. Specific trigger points or tender points on the body may be painful to touch.

Some patients with FMS have pain and achiness around the joints in the neck, shoulder, back, and hips, mine occur in the neck, shoulder, arms and shins accompanied by a burning pain almost as if my skin is on fire. Other fibromyalgia symptoms include:

abdominal pain
anxiety and depression
chronic headaches
difficulty maintaining sleep or light sleep
dryness in mouth, nose, and eyes
fatigue upon arising
hypersensitivity to cold and/or heat
inability to concentrate (called "fibro fog")
Memory difficulties and cognitive difficulties
numbness or tingling in the fingers and feet
painful menstrual cramps
poor circulation in hands and feet (called Raynaud's phenomenon)
restless legs syndrome
stiffness
Multiple tender areas (muscle and joint pain) on the back of the neck, shoulders, sternum, lower back, hips, shins, elbows, knees

For some patients, pain improves during the day and increases again during the evening, though many patients with fibromyalgia have day-long, unrelenting pain. Pain can increase with activity, cold or damp weather, anxiety, and stress. For me My pain is not so bad in the mornings but does increase throughout the day and depending on what activities I do.

It can be severely crippling if left untreated for years which is exactly what happened to me in April. In the past I have been diagnosed with RLS, restless leg syndrome, chronic migraine headaches and have has on going periods of numbness in my hands and feet and had a really bad seizure in 2001.

FINALLY, it all makes senses to me. I've had Fibromyalgia for a really long time but just ignored it until all the stress we went through in Jan with the ice storm where my mom lives and having to get her out of there and then deciding they would live here. My husband and I had to pack up their very big house by ourselves, the house was big and stuff with as much stuff at is possible could be some rooms were floor to ceiling. Hubby and I went through, boxed packed and moved it all except for help wit the major appliances. Then the stress of caring for my mom, using the Hoyer lift to get her up each day my body could not handle it and the Fribo symptoms came on full force, crippling even until the pain brought on my tremors and seizures.

I was relieved to get a diagnosis finally, but there is no cure, well man made cure, that is. I just have to take my meds, which seems to be increasing by the month, and watch how hard I push myself.
I had come across this in my research but didn't think I was right about it because I didn't think Fibro could be so very painful. Doc said it can be one of the most painful things out there.

Unfortunately , because there is no specific tests some doctors don't even believe it exists. I think this is becoming less of the case, with more education and more medications coming out that have been shown to help people control the symptoms of Fibrymyalgia.

Would love to hear from you if you have dealt with this or know someone that has.
Thank you to all those who have followed me on this journey, it's only just beginning and I know you guys will be there to hear my praise reports, rants, and whatever else God has in store for my family.

Hopefully Waiting

I did not write this but I very well could have. I feel every word of this from time to time when my symptoms come back and take over my life. And some of you out there may feel the same. Thank God that my good days in the last month have far out numbered and outweighed my bad days.

Hopefully Waiting

Day after day she asks herself,
Why does it have to be?
She sees others that are healthy
They're living her fantasy
Working, buying homes, raising families
All the things she’d be at thirty-three
Instead she spends her days searching the net
Searching for every cure in the alphabet

Until she finds it, she'll keep hopefully waiting

Hopefully waiting for the day to come
When they’ll find the answers and she can become
The girl she used to be before this heartache, can’t ya see
That girl is lost somewhere, but she’s waiting to be free
But for now she’ll keep hopefully waiting

Everyone says she must have faith
She's given no more than she can take
She's got to remain strong and brave
For the life she wants to make
She tries hard to believe that better days are ahead
Then the pain hits her so hard and then she forgets
She prays someday they’ll have the wisdom to say
We know how to heal you, so don't you dismay

But until then, she’ll keep hopefully waiting

Hopefully waiting for the day to come
When they’ll find the answers and I can become
The girl I used to me before this heartache, can’t ya see
That girl is lost in me, but she’s waiting to be free
But for now I’ll keep hopefully waiting

This battle is not over yet
Not till God says it is
Somehow she will get through this
She’ll find a new road to take
Then, if it doesn’t last, she will not forsake
The doctors say it’s tentative and not guaranteed to cure
But, she won't let them take away her hope
Her strength to endure

She's gonna keep hopefully waiting

Hopefully waiting for the day to come
When she’ll have the answers and she’ll be the one
To win this battle she never wanted to fight
But for now, she’ll keep hopefully waiting, hopefully waiting, waiting
For that day is in sight

Author Unknown

The Truth

Ok, so I would rather write about how wonderful life is right now but this blog is about being honest, and I'm just not a good liar.

So here it goes,
I'm tired, so very tired.

...tired of the pain, the tremors, and the seizures.
Tired of not knowing if I will be able to use my legs when I wake up every morning.
Frustrated that I can't play with my kids the way I want to. That I can't be the wife I want to be, that I can't grocery shop and plan meals and cook for my family.

Frustrated that when I went to Roo's school to volunteer I had to go in another room because I started shaking and had to be watched by someone until it was under control.

I know it could be worse and I know it will get better. I do have good days and I am so grateful for those but the bad days leave me exhausted, frustrated, and just so very tired of it all.

Though I May Question, His Timing is Always Perfect

I haven't posted lately. I've had so many things swimming in my head and it's been hard to make it into any kind of cohesive post.

I went to the doctor this past Friday, since he has had me on Depakote, I have been so much better. I've been driving some, going grocery shopping and some things around the house. I have to make sure I don't over do it though.

So the doc kept me on all my medicines, gave me something to help me sleep at night but it makes me feel drugged in the mornings so I'm gonna see if he will switch it.

Roo starts kindergarten on Aug 8th, I could do a whole post about how I feel about that and probably will soon.

He will be going to the private school that is associated with the church we go to. This is where he attended preschool and he loved it. I loved it because it's small and I know most of the teachers and parents already.

However, my monthly medicine is equal to the cost of Roo's monthly tuition. So for the last week or so I thought we would have to choose one. Don't get me wrong, I have nothing against public schools but the ones in our area rank at the bottom in our state and I feel better about Roo going to a place where I know the people well.

I couldn't see me sending him to public school but I couldn't stop my meds because I would be right back where I was and of help to no one.

That's when God stepped in.

The secretary at the school called and asked if I thought I felt well enough work one or two days a week at school as a teachers aide. We would not have to pay anything except a one time book few. I thought it was awesome but was not sure I could make it a whole day. I do best in the mornings for a few hours at a time.

She said she would see what she could do. Later she called me back and told me that Roo's preschool teacher said she would love for me to be her aide. That way I only work 4 hours two days a week and she said she would give me paperwork and tasks that involved me siting if I needed to.

God is awesome. He continues to amaze me.

Beautifully Broken

I have mentioned a lot lately of how I have not been able to pray. I know some will not understand because it seems so very simple, you just say the words, talk to God. How hard can that be, right? However, my view lately has been, if your heart is not in it what is the point?

I have been stuck because I have been frustrated with God and even a little angry but not willing to admit to either of those feelings.

I've been confused and like a child and throwing tantrums because things have not been going according to my plans. I've questioned why I had to go through all of this again, after I went through the whole learning to walk again, having people bathe me for months and having to relearn how to do everything as a teenager. In my mind I felt like I had endured enough and should not have to go through this again.

(For those of you who don't know the whole story I am working on writing it and posting it on the sidebar because I refer to it so much because it's such a part of who I am now)
Well, today God has really been dealing with me and I have felt his presence in a way that I have not in a very long time. Not because He has not been there, but because I have not been receptive to Him.

You see, I learned not to take all the little things for granted at the early age of 16 when I was in a car accident and lost my sister. I went through years of physical therapy, with the doctors telling me I would never be able to do the normal day to day things that I had done before. I learned that your life can change in a instant. I learned to live every moment to the fullest because you do not know what tomorrow will bring.

I learned all these things, so I did not understand why I have been going through all these medical issues for the last few months. Not being able to walk, or care for my children, or even get out of bed on some days has been harder on me than I imagined and has affected my relationship with God in ways I never thought possible.

I was broken, I tried to be strong for those around me but inside I was scared and confused and just broken. I felt forsaken. Why did I have to go through this again? I just want to raise my children, to clean my house, to cook dinner to be a good wife and care for my mom.

I couldn't pray because I shut myself off from God, but I would not admit this to myself, my friends, or even here, my safe place to pour everything out and be completely honest.

Today, I realized all those lessons I learned so young did not last very long. Oh yeah, I learned how fleeting life can be and not to take all the little things for granted but it only lasted so long until I was back living as I had before complaining and taking everything for granted.

I complained about house work, about being a stay at home mom, just about everything in my life. I had forgotten all the hard learned lessons. I didn't appreciate that I could walk, that I had two beautiful, healthy children, a christian husband, that I didn't have to worry about the necessities of life.

All of those things were my main focus until I couldn't walk, play with my kids, do household chores, cook, even bathe and dress myself. Then those lessons came back and I now I stand humbled. God loves me so much that He has taken the time to reteach me those lessons.

I know it sounds a bit crazy to look at it that way but it's so true for me and really hit me today because
1 Corinthians 13: 4-8
love is patient, love is kind and is not jealous; love does not brag and is not arrogant,does not act unbecomingly; it does not seek its own, is not provoked, does not take into account a wrong suffered, does not rejoice in unrighteousness, but rejoices with the truth;bears all things, believes all things, hopes all things, endures all things.Love never fails

I have always linked those verses to romantic love for some reason, I guess because I have heard them recited at weddings and linked to discussions of marriage.

Today, however I saw it in a different light. Actually, I heard it on the radio as I was driving to walmart thinking about the lessons I have been learning or refusing to learn. I felt God's love in a way that I had not in a very long time, it surrounded me in the car and I realized God's love is patient and it never fails. So if He has to continue to teach me a lesson that He knows I need to learn He will, over and over because He loves me that much.

Now I know that today it is easier to say all of this because, minus my abbess tooth, I have been having good days for the last week. I haven't been bed bound, have been able to take showers on my own with no shower chair, have cooked and played with my children and even moved furniture and mopped the floors and went shopping by myself without having to ride in an electronic cart today.

On days like today it is easier to see the lessons, to understand, and to feel God. I'm not blocked by the pain, despair and hopelessness. I hope that I can use these days to get closer to God, to build my strength and faith so when the bad days hit I won't get frustrated and angry with Him. I can rest in His arms and know it will be OK.

I know that my battle is not over but I also know I have had a break through. I was able to pray today, and see things a bit clearer. I was able to feel His presence and let go of some of the negative feelings I have been clutching to with both hands.

I have been broken once again, and sometimes that is what we need. It is by His grace that we are put back together again and we learn from the cracks and are reminded who He is because of where we have been. As painful as it was, as much as it hurt, I needed to be broken. I needed to be made aware of the cracks again, I needed to let Him pick up the pieces. I needed to be broken, and where some see the cracks and scars to Him, I've been beautifully broken and am beginning to be made whole again.

Batteries Recharged

Jose has to go to a seminar for 4 days at a State Resort Park, 4
hours away. We had not talked about me or the kids going with
him until last night but decided against it. So I went ahead and sent Roo to VBC this morning. When I got home mom and DD were pushing me to go. I felt quilty leaving the kids and thought it would be too hard on DD to do it all herself.

I asked Roo to come because he loves hotels and swimming but he chose VBC instead. I was hurt a little but then again who can resist VBC even if you just went to one last week.

Hubby was worried about me being able to make the trip and about my symptoms coming back, But, a wonderul friend I have met in blog land has taught me that you can't live your life in fear waiting for your symptoms to come and knock you off your feet. You have to live in the moment. Check her blog out on my side bar, The Perch,if you haven't already.
Thank you Sheryl, God put you in my life at just the right time.

So in this moment, I am symptom free and in the ca

This is How Feeling Better Looks

I am cherishing each day that I can stay out of bed, get dressed and play with my kids. It's all the things I used to take for granted but pray I never do again. Today was Ruben's last day of VBS and I was able to go and see their program, no walker or wheel chair. I walked in by myself and walked out, seems so simple but it was really awesome. And the first time in 3 months I've been able to do this.

I wasn't able to get good pictures inside, it was too dark, so here are some of me and the kids when we got home. I'm feeling great but part of me is just waiting for my symptoms to knock me off my feet again. I can't let fear run my life and I know that when or if they come back God is big enough to take care of them and me.

It's Going to be Ok, Maybe not What I Want but It Will Be Ok

I have been away for awhile, there was a week straight that I was having seizures close to twice a day and in bed the entire day. Those were dark days for me so I spared you all from what would have been some very negative postings. Today and yesterday have been pain and seizure free, I haven't had that in a very long time so I have been enjoying it more than I could ever explain.

I went to my nero doc last Wed. and the EEG was normal, which made me go into my emotional crying spell because I thought for sure something would show up. I'm definitely having some type of seizures but he's not sure why my EEG would be normal. He put me on a seizure medication Depekote, and even the generic is ridiculously expensive so we have been buying a week supply at a time. But thank God we found out about a program called Kentucky Home, they help get your prescriptions directly from the pharmacy companies when you have no insurance. So I met with the worker from there yesterday and took the forms to my doctor today and he filled them out and this program will pay for that medication for a year then I have to re apply. That will save us $2088 a year. Thank you Jesus.

As for me not being able to walk some days, my nero has no idea why that is. He was very busy and only spent 5 min with us this time. His waiting room was full and I am hoping the next visit will be better. The meds he has me on now seem to be working together and I have been having good days lately. I'm hoping they will last and that I can go back to my 'normal life' or the way it used to be but I have a feeling I am going to have to adjust to this new normal and if I just could have more good days than bad I could be ok with that. Tonight I cooked for the second time since I have been home, it was such a great feeling, I even mopped the floors and finger painted with the kids. Boy it's the little things in life that you think you would never miss but when you can't do them those are the things that mean the most to you.

Still finding it hard to pray which is really bothering me. I'm still using music to kind of 'talk' to God but it's hard to even form a prayer out loud right now. I didn't think that would last this long. I thought I would be over that by now. But here I am.

My mom and aunt finally got a van (used of course) but found one with a pull out wheel chair ramp for my mom so now we can take her out and to her medical appointments. I say we but I really mean my aunt and Hubby. I still can't drive and went shopping for grocery's with my aunt yesterday but finally had to get in one of those motorized carts because I get so tired from walking. But I am hoping we can all go out to eat for Father's Day this weekend. My mom has not been out to eat in almost 2 years.

I am so grateful to have them here with me, but I have to be honest, there are times when I just want my house back. We just bought this house last July, our first house and I don't feel like we got to enjoy all of it enough before giving part of it up. Horrible, I know. But the minute I think that I also realize it was God's plan because I don't know how I would take care of my kids some days without my aunt here. I just hate that I can't take care of my mom like I did in those first few months of them moving in.

This may seem jumbled, that's only because that is exactly how my mind is jumbled with all these things swimming around in it. I hope you can make sense of at least some of it anyway.

Thank you, for reading, for emailing and most of all for the caring and the prayers.
It's going to be ok, maybe not what I wanted or what I envisioned for my life with small children but it's going to be ok.

Whatever You're Doing

The day before my life suddenly changed(April 18 of this year to be exact), I took Roo to his soccer game and then we went out for breakfast and I heard this song on the radio. I had heard it many times before but this time it spoke to me. I felt it in my spirit that God was doing something inside of me and in my life. I even remember telling God while the song played that I wasn't sure if I was ready for any big changes. Because usually when God changes you, brings you closer to Him, or uses you in some way to help others, the process is not always easy or what you would choose. Little did I know that the next day I would be rushed to the ER and my day to day life would change drastically.

The past day or two I haven't really been able to pray. I try but can't seem to find the words.

My hands are fine, no seizures or tremors in almost a week but my legs don't work and I'm getting spasms in them really bad. I'm back to the wheel chair full time and to bed, expect like tonight when the pain in my legs is too much to stay in bed so I wheel myself to the computer and know I will be better after getting all of this out.

To be totally honest I'm a bit angry. I wish I could say I'm handling it great and be positive and uplifting but there is no use in lying to all of you when God knows exactly how I'm feeling. And this is what this blog is all about, being honest, with myself with God and complete strangers(ok, not all complete strangers but you get the point.)

I have found that I can listen to this song and sing it to God. I know He's doing something in my life and this illness is part of that. I haven't come to total acceptance of that. Maybe once there is a definite diagnosis it will be easier. I just don't know. But I do know that God understands my feelings, my questions and my fears. And all I can do is surrender to the waves that seem to be crashing over me right now.

Whatever You're Doing (Something Heavenly)
By Sanctus Real

It's time for healing time to move on
It's time to fix what's been broken too long
Time make right what has been wrong
It's time to find my way to where I belong
There's a wave that's crashing over me
All I can do is surrender

(Chorus)
Whatever you're doing inside of me
It feels like chaos somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something heavenly

Time for a milestone
Time to begin again
Revaluate who I really am
Am I doing everything to follow your will
or just climbing aimlessly over these hills
So show me what it is you want from me
I give everything I surrender...
To...

(Chorus)

Time to face up
Clean this old house
Time to breathe in and let everything out
That I've wanted to say for so many years
Time to to release all my held back tears

Whatever you're doing inside of me
It feels like chaos but I believe
You're up to something bigger than me
Larger than life something heavenly

Whatever you're doing inside of me
It feels like chaos but now I can see
This something bigger than me
Larger than life something heavenly
Something heavenly

It's time to face up
Clean this old house
Time breathe in and let everything out

I Snuck on Here for a Quick Update....Sshhh, Don't Tell My Nurses.

Hi guys, it's been a while.

There is a lot to catch you up on and really a lot to write about. But honestly, I don't know if I have the physical strength much less emotional, to go through all of the events of the last week.

The highs were Ruben's God mommy coming for a visit. He calls her Mee Mee. She is awesome and I don't know what I ever did to deserve someone like her in my life, I'm just so grateful she is in my life after all these years (we met in college.)

Her mom came with her and that was great too, I just could not get the woman to sit down and relax she was constantly cleaning. Apparently she is happiest when cleaning, what ever works I guess :) They stayed from Wed. thru Sat.

In that time Mee Mee painted Roo's room green and blue, put up star wars decals and light fixtures, took Ruben to his last soccer game of the season, cooked breakfast every morning and gave my mom a manicure. She was determined that his room would be done before she left even if that meant her having to stay up all night on Friday night, which is what she really done.

The hardest thing for her and it was pretty hard for me too, was her having to see me like this. I was in bed most of the time they were here, in severe pain. And had several seizures in front of her. She's a nurse so she put on a brave front but I know it was hard for her. It's hard for all of them when I go into a full on seizure and all you can do is get behind me and hold my arms and tell me to slow my breathing.


I went to the Neurologist yesterday, he sees my mom and I saw him about 9 yrs ago for my migraines, so I trust him a lot more than that other doctor.

He is determined to find out what is going on. I started shaking really bad in his office and he could not believe they let me out of the hospital like this. I told him I couldn't really walk when I left but I wasn't shaking really bad. He upped some of my medications and they seem to be controlling the tremors and the seizures. He ordered an EEG test for this coming SAT. I just hope I don't have an episode in the chair, that would not be good.

I've been dealing with hospital bills today, trying to make sure I call everyone to let them know where this all stands right now.
I have got to go into the medicaid office to apply for a medicaid spendown card but every time I speak with someone there they tell me I don't qualify. So the worker at the hospital said just to take all my bills and information down and demand to fill out an application. I will at least need to rejection letter to apply for some of the charity programs the hospital offers.

I try not to let that stress me out, there's not a darn thing I can do about it. It's in God's hands and that is where I am going to try to leave it.

Some days I can walk and some days I bounce, my legs look like jello actually. I'm not driving, no heavy lifting, no sitting up for long periods of time.

For now I am realizing just how little I appreciated my life. It is so awesome to be able to walk to the bathroom by myself or load the dishwasher, wipe down the bathroom sink or just brush my own teeth.

But I can't overdo it, so I will stop here. I will try to update more on my phone, it's just the last week or so it's been to hard to even lift my hands on the keyboard or complete a thought.

But i will have to come back soon and share what my beautiful little princess did yesterday....I still can' t believe she did it, but that is another post and I have the pictures to prove it.

I'm still hanging on to you God, whether I get better or whether I don't.

Here are some photos from her visit. Don't worry I will post pictures of the finished project soon. (Oh and yes she's a red head too ;)

Ruben's last soccer game.

Roo and Mee Mee starting on his room.

Taking a break from it all to go online and play some games.

Taking it Moment by Moment (with Pics)

Thank you lord.

I called the neurologist and they will see me. Hubby had to take money to them before I could even make an appointment and will have to take more when I go for my appointment May 18, next Monday. I'm so very thankful that I was able to get in and pretty quickly at that. The money thing will be a little tough but we will figure it out because I can't continue this way.

Today I had probably the worst episode ever. My feet just curled up on me while standing and my skin felt all prickly almost like an electric current was running through me, then the convulsions started, it was not a pretty site. This time I even started making some type of strange sound, my head was going from side to side, limbs everywhere.

I honestly have never been more scared in my life than I am when I am in the middle of one of these episodes or attacks, not sure what to call them. They definitely feel like an attack on my body.

It's like I have no control over my body. And my bones ache like nothing I have ever experienced before. Thankfully this one only lasted 15 minutes but afterward I was exhausted. Then a few hours later I am ok. It's very confusing and frustrating. If you had seen me at certain times on Sunday. you would not believe anything is wrong with me.

I have identified some triggers to my symptoms. Any type of lifting, or strenuous activity will bring on an attack. I think attempting to paint my son's room and moving his furniture counts as strenuous activity, but I wanted to help do his room. It's a birthday present from his Godmother who will be coming on Wed. She lives in Ohio and I wanted to get the room ready and walls primed so she will have enough time to work her magic and create an awesome Star Wars room.

My best friend is a nurse and she has mentioned a few disorders she is concerned it might be but I'm trying not to think about them until we know for sure. I just want to know something, I want to know what this is and how it can be treated. I just want a doctor to look at me and tell me it's not in my head.
We will not be going to Nashville on Friday for the MRI. Hubby and I discussed it and decided that doctor is just not for me and all he will bring us are more medical bills.

The assistant I spoke to at the new Nero's office could not understand why they had not done an EMG since I am having a lot of numbness and tingling sensation in all my extremities. I'm not sure why they didn't do that test either. The did do every other test imaginable.

I'm just grateful I can get into this Neurologist. I used to see him many years ago for my migraines and hopefully he will be kind and do everything to try and find out what is going on. Because honestly, I'm not sure how much longer I can take this not knowing. This, whatever this is, is debilitating most days, but there are days or even just hours where I have little or no symptoms.

Here are some of those moments from Sunday.

I actually got dressed and was able to put on makeup. It's the little things these days that I appreciate more than ever before.

I will never outgrow this and I know the whole raw egg thing is not good but I have done this for 20 plus years and it is just so darn good.

My princess.

Mom was thrilled about getting a green purse, again, the little things in life :)

They had to deliver the cake to me in bed because when they started on the cake I was fine licking beaters and posing for pictures but by the time the cake was done I had to be in bed to deal with another attack.

I'm just trying to take this moment by moment, get through the bad ones and enjoy every second of the good ones.

I just have to add that God is so good and knows exactly what we need, today was tough but he sent someone to me who can relate somewhat to what I am going through and it was great to talk to someone who has been there.

Prayer Request

Today was a wonderful celebration of mothers Day and my birthday. I will post pics and write more about it later.

Tonight I'm here asking for your prayers once again. Today was not a good day for me physically, I've had muscle spasms, my entire body is filled with pins and needle sensations and the pain has been pretty severe but has eased up tonight.

I don't understand because yesterday I had hardly any symptoms. I even crawled around the garden and pulled weeds and clipped plants.

We are scheduled to go back to Nashville this Friday for an MRI of my head. I really don't want to see that doctor ever ever again. And I don't really think he will really look at these tests because he only ordered them to appease me.

So, I'm going to call a Neurologist in the morning here in town. My Mom goes to him and I used to see him about 8 years ago for my migraines. So I thought maybe that connection could get me in the office. I don't have insurance, we can pay some up front but not sure how much they will ask for.

So here are my prayer requests:
*Please pray that I can get out of bed tomorrow, I will be the only one here with Marissa all morning so I need to be in full control of my body.

*Pray for God to start working on the heart of the person I will be speaking to at the doctors office now.

*Pray that I can get all the information out to the person on the other side of the phone without breaking down. This has taken such an emotional toll on me and it's hard to explain it over and over. I am writing everything down tonight so with that and God I'll be OK.

*Pray that he will see me and can get me in soon. And lastly that we will find out for certain what is wrong so we can start treatment (whatever it may be) and I can get back to taking care of my babies and my mama.

Thank you all and hope you all had an amazing day with your families.
Oh and if you get a minute go over here, my friend Nicole aka Girl Child is having a give away.

Frustrated and Disheartened

The appt. did not go well & I am so upset that this will be short.

He basically did not listen when I described the stroke like symptoms I have been having, he said it was due to all the pain I was having but yet he won't give me anything for the pain, not even for my migraines.

He refused to write anything to social services to help me get a medical card. He said my family doc had to do that. I don't have a family doctor u niwit (I could say alot worse but I won't.)
After basically hounding him and almost arguing with him, he ordered another MRI to see if it is strokes or seizures I have been having. See these episodes happened after getting out of hodspital so it would not have shown up on those tests if it is mini strokes.
He did give me ativan which the Er Doc had given me and hasscontolled my tremors completly. He also prescribed another medicine to help me sleep.

He was rude, arrogant and I was in tears in his office.

I'm tired and want this to be over, I am in bed and I'gonna pull the covers over my head and maybe stay here for days.

Please Pray

The same thing that happened to me on sunday when we went to ER has happened 4 times since then. last night was the worst,it happened at 3am.

My head started hurting,I had neck pain & then the scary symptoms started. I couldn't feel my face, left arm was numb and I could not move it for 5 minutes & then when I did, I had no control over it, & no coordination at all. my speech was slurred & I couldn't stop drooling. This lasted for for 45minutes, the longest one so far. Then it goes away and I just feel exhausted. It happened again this afternoon, this one lasted 30 min.

These episodes did not happen before or during, my stay in the hospital.

We have a few nurses in our family and they seem to think i have the symptoms of TIA, mini strokes. And Hubby researched it and I do have all the symptoms of TIA.

Nero doc appointment is tomorrow in Nashville.

Please pray he can diagnose this, which i was told today by medicaid worker, would go along way and also if he would write out that i will be incapacitated, that would be helpful to.

Please pray for my mom, she was diagnosed with Parkinson Disease yesterday and severe nerve damage in both legs.

Please pray for a safe trip tomorrow and for peace for all of us.

Thank u all for your prayers and concerns. It gives me strength to make it through the day. I thank God for giving me each one of u.

oh and please look over all the grammatical errors. I have no strength to proofread this.

Back From ER

After spending most of the day at the ER we are home.

I talked hubby in to letting me go to church this morning, I was feeling better and went in Speedy, that's my pet name for my wheel chair.

I was feeling OK until we pulled in the driveway and without any warning, my left arm went numb and limp. I could not move it. I started slurring my speech and drooling. Then my uncontrollable tremors started so hubby went straight to ER.

Not surprisingly, the doc didn't know much more than the others. He stopped the tremors with iv Ativan and sent me home with a prescription for it.All he said was I was having neurological tremors and the numbness can be caused by severe stress on your body.I feel better now, I'm medicated too and the tremors have stopped.

The walker has been taken away from me because I fell in the kitchen after getting back. So I am stuck with Speedy for now.

I will be honest and say I'm so scared,I have lost control of my body and I never know when it will hit.The scary part is I don't know what is wrong with me. If I just knew, I could come up with a plan and do what I needed to do to get over or through it. That's how my mind works. But I guess God has a different plan and wants me to trust Him completely but that is so very hard for me.

It breaks my heart that my kids are having to watch me lose control of my body and it really scares them.

I try to hide the fear and be strong for all of them because I know they are worried, especially my mom and she can't get out of bed to take care of me and I can't imagine how hard that is on her.

It's when I am alone that the fear takes over and the tears fall and I let it all out to God. It's strange but even when I'm scared and can't stop the tears I still feel like Jesus has me safely wrapped in His arms.

Please pray that I can get some rest and sleep tonight. Please pray for my family, hubby is so exhausted and I think he's coming down with something.

Mom has a doctors appointment tomorrow and I will be here with the kids for a couple of hours by myself, which worries me a little because I can't stand not being able to take care of them like I always have. But I guess if we can keep the tremors under control we can ride around in Speedy until the grown ups get back and put me back to bed. :)

Well speaking of adults I have just been ordered to put the phone up and take my meds and go to bed. I better do it because if they take my phone I will surely lose my mind.

We R Moving Into the ER

We R back in the ER at Jennie Stuart Medical Center again. Docs arw running some blood work but he seems to think her limp arms, legs, numbness, numb and tingly mouth, is caused by anxiety.

They've given her something to relax her, for her oncoming migraine headache, and I guess we'll wait and see.

--Hubby

Info on My States Medical Coverage

Thank you for all your comments, concerns and links concerning medical coverage in my state.

Here is a run down, which I hope makes sense because I'm a little medicated at the moment....but feeling no pain. :)

The kids are covered through a program called KCHIP, Kentucky's Children's Health Insurance program. We pay a monthly premium for this and co pays but its nothing what we would pay if we had to get private insurance. They don't qualify for Medicaid because my husband makes too much, which I find laughable. They don't offer insurance at my hubby's work which is also laughable to me because he is a director of a senior center.

We can't count my mom and DD in the number of people because their income would also have to be counted, they know they live here but we have to fix meals separately and all that good stuff.

I did talk to the kids medicaid worker today and she said I would possibly qualify for a medicaid spend down if my bills are more than hubby makes in a month, which made me have to stifle my laughter because they are more than he makes in a year. But it would only cover the month I was in the hospital and I would probably not qualify for anything else.

We have looked into private insurance for me but with my past health issues it was astronomical and there was no way we could afford it. We also used to use the free medical clinic here a year or so ago but now hubby makes a few thousand over so we don't qualify for that either.

I am trusting God with it all, He can make a way when there looks like there is not one. I just have my weak moments where it gets so overwhelming, so I come here and always feel better.

Thank each of you for visiting, for leaving comments and even the many that visit and do not leave comments. I know you are there and it means more than I can say.

Not a Good Day

Today I am tired and frustrated. I got up to pour Marissa a cup of milk and my right side started shaking uncontrollably and milk went everywhere. My kids saw this and I think they were scared, that broke my heart.

On days like today it's hard to understand why this is happening and why my body is turning on me. I just want to be able to take are of my kids and I'm so sick of being in this bed.

The bills are pouring in already and I have no idea how we are going to pay them, much less get a doctor to see me for follow up care and my medicines when I have no insurance. And without the medication I have almost no control over my body.

They are pretty sure that I can get a medical card for April but not beyond that for my follow up care.

It's in God's hands and I'm trying my best to trust in Him with all my heart.
I know He has it all under control but I also know He understands my confusion and frustration.

Not My Will But Thine

Just FYI, you may get tired of my constant blogging but there is not much I can do right now and this seems to help so hang in there with me :)

I've been thinning about what lessons God may be trying to teach me out of all of this. I mean I have gone through the whole physical recovery process before, had to learn to walk again, learn how to get by with only one full functioning hand for almost a year and went throughout 11 surgeries and a year of out patient physically therapy.

So I just assumed that this was something I would never have to go through again. I felt like I paid my dues so to speak and it was someone elses turn (not a very Christian way of looking at it but I'm just being honest here, which is the only place I feel I can be totally honest right now.

I'm sure I'm not the only one who has faced tragedy in life and look at others who seem to have not gone through many hardships in their lives and feel like it should be their turn. Again, not a very Christian attitude but bear with me and I will get to the point of all of this.

But what I have learned through this recent set back in my health is that while we sometimes feel entitled to live a tragedy free life or once we have faced one or two tragedies we feel we should be exempt from any other major ones and that my friends, is just not true.

I have lost a lot of people in my life, my sister, my father, two best friends and my best friend's 4 yr old daughter. I had a crappy abusive childhood and watched my father die a horrible death from AIDS.I've watched my mother suffer for the last 2 yrs and now she's completely bed bound and has not walked in over a year.

Yet, this in no way means I am exempt from going through anymore tragedies. It just doesn't work that way. God is God and is plan His much bigger than we can ever wrap our brains around.

And yes, I have had my temper tantrums with God asking how much more God, how much more can I go through.

But what I have discovered or what God has revealed to me in a way He never has before, is that God does not promise that I will never face another tragedy in my life even if I do feel like I have faced quite enough.

I'm not promised tomorrow or the use of my legs or even to watch my children grow up. I'm not promised that my children will remain healthy. I pray for these things but I'm not entitled to them just because I feel I have gone through quite enough, or because I love Jesus with all my heart and try my best to live the life He wants me to.

All He promises me is that He will not give me more than I can bear and He will never leave or forsake me. I can honestly say for the first time in my life, I'm ok with that. Because He works all things together for the Good for those that love Him. And I am who I am because of every trial and tragedy I have had to go through.

And though I may have my temper tantrums with God from time to time, He understands that too.

This is just one more chapter in my journey and I will continue to trust Him and pray for His strength, mercy and wisdom.

Just an update, today I woke up feeling better but as the day wears on, I get tired and the pain increases. I'm still having some tremors but not has severe has before I have an appointment with my neurologist in May who isn't really wanting to see me without insurance but says he will at least once.
I also go in may to see if I can get a medicaid card to cover my bills for April.
So please pray for these things, and if you have pray lists at churches I would be honored if you would put me and my family on them. Some have already done this and it is a great encouragement to have people we don't know and may never meet praying for us.

Finding the Strength

Today was a good day but tonight the uncontrollable tremors have started and it's hard to control my body movements. It feels at times that my body is turning on me.
I found this song earlier and it has really spoken to me tonight.
(Don't forget to pause the music player at the bottom)