Tuesday, December 30, 2008

That went over like a lead balloon

Well, I had my appointment yesterday.
I was hoping for answers, I was disappointed, I got NONE.

I am changing over to the neurologist in their office, I Love my rehab doctor, he is so honest with me, we know where we stand with whats going on. I am discouraged though that the MRI was clear, well, it showed swelling, DUH, I can see that much, lol.

They recommeded a doppler, so we had that run immediately, it showed nothing.

I am still in lots and lots and lots of pain. No answers isn't helping with that though.
I am tired all the time and the suffering just makes it harder.
I am praying we get the medicaid without questions so I can deal with that for my Feb appointments.

Sunday, December 28, 2008

Been SO Busy

We had a play date this weekend, Lauren had a blast.

We had Christmas with family, I am tired, it was good, but overwhelming. My body rebelled and I have been in almost constant pain since.

Tomorrow I see the Rehab doctor. I have LOTS of questions for him. Hope he has time to answer them.

I have been tired and in a lot of pain for the last week or so, I do not know what to expect next. My swelling has gone down significantly with the prednisone, but it didn't help with the pain or anything else, and it caused mood swings that scared my family.

Church is amazing, I feel so at home here.

Lauren had a blast at her party, there were 4 other girls there, they played really well together but she has a real bond with the one that is closest to her age, its pretty remarkable. I am amazed.

Sunday, December 21, 2008


A friend of mine's spouse was accused of doing something very wrong, while he did as accused, things are not as they seem.

We were told the other side of the story today in church, I am heartbroken for this family. My prayers go out to them.

Her husband has been charged with a five year felony for being unable to deliver a product it made front page news in our little town newspaper. The church is standing behind them because they know the whole situation, but it just sucks that this had to happen to them.

His business has already suffered because the manufacturer he used went under, hence the failure to deliver charges, and now, he is going through these struggles. His wife was the first friend I made in this church, so I truly feel for them. I do not feel that people should just walk away from their obligations in any way, but at times, it isn't always clear cut like that.

Please join me in prayer for this family, that God will bless them in their finances to allow him to get the financing to finish up these contracts and be done with these customers that have had these issues. Also I ask that God will allow him customers in the future that realize that Michigan is in a VERY bad economic downturn that does not just affect the customer but also the businesses.

Saturday, December 20, 2008


This has been a rough couple of days. I need to admit it openly because if I don't, when I look back, I will have forgotten the tough times.

We got a beautiful foot of snow Friday morning, I tried to be my old self and shovel just a little, I knew I couldn't do it, but I had to try. I did not hear back on the library job I am PERFECTLY qualified to do. The depression sinks in. The cane got in the way again.

Its hard to say the least. The pain today has been horrendous, it was bad yesterday too, almost like a one step forward two steps back process.

I did see some light in my dim day, I made a batch of Peppermint Crunch Fudge. It tastes GREAT. Life has been extremely overwhelming. Its been Hard. I see things around me and sometimes it just speeds around in circles making me dizzy.

I am tired and I can't keep up. I think the hardest part is that its been nearly a year now, and its very overwhelming to not be normal. I miss playing with my daughter, I miss taking baths, I miss sitting on the floor, I miss being me.

Friday, December 19, 2008

Well, I Didn't Hear back on the job, Oh well

We are snowed in this morning, The entire lower part of Michigan is pretty much snowed in. Its beautiful (so long as you are Inside and not out)

We are averaging about an inch of snow an hour right now, its beautiful, blowing snow, no rain mixed in up here. Lauren is not blessed with a snowday however, she has schoolwork to finish before we bake her angel cookies for her Sunday School Christmas Party.

Todays ToDo List:
Make a Pot of Chili for Lunch/Dinner
Make 2 Ingredient Fudge For The Family gatherings next week
Make Chocolate Covered Cherry mice For Family coming tomorrow if the roads are plowed in time. (since the snow should be done today they probably will be)
Make about 18 Sugar cookie angels for Lauren's Sunday School Class and decorate them,

Obviously this list is not in order, the Chili is first, but the Cookies are second since I will be using the leftover frosting for a half a batch of fudge, I am making 3 batches of fudge, 1 Chocolate, 1 Peanut Butter, and 1 Peppermint Crunch (and an extra half a batch of peppermint crunch for me)

Next Wednesday I will make a sugar cookie wreath for my mother in law since Chris got laid off gifts will be very cheap this year. We will likely throw in a pretty jar of loose leaf teas if I can find a nice brand for a nice price, to go with it before then.

Monday, December 15, 2008

When All Looks Lost, Remember that He who Created it doesn't need a compass

Well things are going rather groggily along.
The topamax is definitely controlling the migraines, how can I tell this will daily still mind numbing headaches? well there are definitely differences in the headaches I have now and the ones I was having before, I hate to say this but I was likely having PTC, CHIARI and Migraines all wrapped up into one day making my days a lot worse. I am more tired now and food is repulsive but thats all good because I am definitely seeing some relief albeit not much.

I scheduled my mri, its tomorrow at 1:30, I have another interview at the school tomorrow too, this isn't a job I applied for though, I have LOTS of experience, but the hours didn't work for my schedule, but she called me, as she had some schedule changes. See God provides.

After that I changed my first drs appointment of the year to make it a tad easier than fighting the medicaid battle in the first 6 days of the year. Dh is still job hunting without much success.

Thursday, December 11, 2008

Lets play catch up

Lets try again :-) this time I won't hit enter BEFORE I type.

Thank goodness for Edit buttons.

Its Thursday, I am exhausted, its been a busy week and today is yet another busy day.
As for Tuesdays post, a little more detail.

I went to the Rheumatologist in the morning, my ANA and ESR blood tests were still high all other lupus bloodwork came back negative. She was suprised thinking maybe the high ANA the first time was a fluke, the swelling and nerve issues are still really bothering me.

We are trying prednisone and going to go for an MRI after I get it scheduled I will call today.

After that I had an interview, I do not feel all that confident, I am not a marketing person and thats what this job is.

Then I went SHOPPING. I came home with $150 worth of groceries (plus a HUGE bag of free Buffalo from the inlaws)
We have a Huge selection at least for dinners, lunches are a bit trickier, and I still need to shop for breakfast and a few select ingredients.

Tuesday, December 9, 2008

interview went ok, not holding my breath, Drs appointment, not so hot

Well, we are off to yet ANOTHER MRI, hmm, that makes, what 1 spine, 3 brain, 1 knee, and 1 ankle, hmm, altogether, 6 this YEAR.

I am also going on 90 days of prednisone (I believe its 90 days) if all else fails we are going invasive with a muscle and nerve biopsy.

Monday, December 8, 2008

My head hurts

Well, I have been on Topamax 3 days, I am not sure how it does at preventing the headaches but its not helped yet, but its only been THREE days, I have to give it time, I know it has to build in the system to work right.

In other news, tomottow will be Menu Plan day as I have to go grocery shopping, I have No earthly clue what I am buying since I am going to Aldi in the morning, we shall see what we come home with to see whats for meals.

Its been interesting having Chris home, complicated a bit too since, Well, uhm, I don't normally make REAL lunches here...and he is ALWAYS hungry.

Saturday, December 6, 2008

Busy week

Well its been totally chaotic this week. Monday Chris was laid off, Tuesday he went in to Michigan works for Unemployment, then we had my Neuro-opthalmologist appointment, he released me to a regular opthalmologist.
Wednesday, We STAYED HOME.
Thursday, He had an appointment at Michigan works then I had an appointment to see my Counselor there too, I had to drop off paperwork that was missing.
Friday, Low and behold my comp card came in and I was BACK to MI works yet again.
When I got back home, we got another call, I got an interview Tuesday for workstudy, so I am hoping I can get that job.

Last night, I got hit with some of the worst pain in the world. I was in agony.

Monday, December 1, 2008

And here we go to meet MARVIN

M ichigan's A utomated R esponse V oice I nteractive N etwork
Chris got laid off this week, he will get two weeks pay as well as his unemployment, we have insurance through the month and everything will be ok but tight

God is Mighty and in conrol of everything.

Saturday, November 29, 2008

The Battle of Wills that I am not sure WHO won

Today was a REALLY bad day.

We had an okay Thanksgiving, We had dinner at Chris's Dad's on Wednesday than we had our Thanksgiving here Thursday, Friday we were back at the inlaws for a long boring day of Chris learning tax stuff.

Then comes Friday night, Lauren spent the night in our room, she was overtired and clingy so we okayed it. BIG mistake....All day today has been a battle, from the MOMENT she woke up til the moment she went to bed.

Normally in a battle of wills of this magnitude, someone gives up, usually her. Today having daddy home it was about a thousand times worse than usual, and my oh my am I miserable.

My head hurts, my neck hurts, my leg hurts and my brain is totally fried.

She eventually decided it was in her best interest to behave but it took her ALL day to learn.

All in all, today was NOT a good day.

Monday, November 24, 2008

so tired

Things are going ok here, but I am totally exhausted and have been for about two days now.

Todays has been a long day, my head has hurt all day, but God is good, we went to church yesterday and I really REALLY REALLY like this church, its Amazing, I haven't liked a church like this one since I started at Evangel Temple.

Its open and honest and I have met families there that actually do things we do. I love how Lauren interacts with the other children and how at home we seem to feel while there.

Its not even 9pm and I think I am going to take my meds and hit the hay, I am not going to make it til 9.
Good Night

Wednesday, November 19, 2008

Quickie Update

Things are going here, its gotten COLD, and my body is rebelling something horrible.

Stress is running high as things KEEP going wrong.

God is still in control regardless of what happens.

Monday, November 17, 2008

That wasn't half as bad as I expected it to be

Today was the Rheumatology appointment, I was nervous, and it showed, my blood pressure is normally 136/80 or so, Today, 196/72 a bit high, she laughed when I told her it was nerves.

She doesn't seem to think its Lupus but rather Neuro-Muscular. She is running a bunch of blood work anyhow, I didn't ask what, it just makes me think too much and worry more.

She gave me a steroid shot to help decrease the inflammation and tenderness in the office, how fun is that. Woo Hoo, blech, yuck, lol. Then she wrote out a couple scripts, one for a muscle relaxant and the other an NSAID that is supposed to work a bit differently than the others I have tried.

She did mention that quite a few muscles are really tender not just the ones we thought about, she said there was quite a bit of tenderness in the chest muscles as well as back, neck, thigh, shoulders, and leg.

I go back on December 9th for the follow up.

As for how I have been feeling, tired about sums it up, all I want to do is sleep. I am in lots of pain, but all I want to do is sleep and sleep and sleep, and NO, I am not depressed, I am just exhausted.
I do things around the house, I teach Lauren, we play, but mostly I rest, by body is draining me of all energy.

Wednesday, November 12, 2008

Bits and Bytes

I am still puttering about getting things done incredibly slowly.

My brain hurts to even think, and once again, I seem to have slept or rested way more than I feel I should need in a given day.

Lauren worked on Nutritious November worksheets and is going to be working on how to find healthier choices among what we really want. Lucky Charms isn't a healthy choice regardless of how yummy they taste.

www.mypyramid.gov has some really cool links for preschoolers that we printed off to help us choose the perfect amounts per meal. Since I will be working my way down to her serving size, it should be pretty good for both of us.

Friday I have my appointment with my Michigan Works counselor, I need to call the transcript lady tomorrow to make sure that everything gets in the system (or I will have to go back again)
Yesterday I called and my blood work was being faxed over to the rheumatologist, that appointment is on Monday and I am VERY nervous at this point. Maybe if I felt a bit better I wouldn't be half as anxious.

My thoughts aren't making much sense right now so I better stop writing before I scramble something important.

Good Night

Tuesday, November 11, 2008

Miserable but functioning

Well, I am determined not to stop functioning despite feeling as bad as I do.
I am sleeping more and resting more but still aiming to get SOMETHING done every day. Its a long road when you don't know what's ahead.

My appointment with the Rheumatologist is in SIX days, its been a long 7 weeks to get here.

This morning I registered for classes at the local community college. Applied Math for Medical Assistants, Business Communications, Human Anatomy and Physiology (hopefully) and Medical Terminology.

This afternoon we are doing school and probably some chores. My goal is to work in bits since I can't seem to manage bites at this point.

My head is getting to the point where I am ready to request a spinal tap or a new medicine...and I am just tired of feeling lousy, and Chris hates his job which isn't helping, he is always angry and stressed out. Grumble

Wednesday, November 5, 2008

My Aching Me

I would love to say that I feel really good about things, but right now I have been in a lot of pain for two days.
Voting turned out to be long lines even in the morning and I should have gone absentee since by the time we were done with all of our Tuesday activities I was in SOOOO much pain. I will live, but I am sore.

I can't even isolate what hurts, but today Lauren took care of me, did her school and was a Huge help. I am so glad we home school, on days like today, there is no way I could handle her being in school...I couldn't get her to a bus, or back off. Days like today, she takes care of me, and learns....She learns compassion and how to care for others, she learns how to be self sufficient, and she learns how to make sure that she stays OUT of trouble.

Sunday, November 2, 2008

Today we Visited a New Church

I didn't want to change churches, but the drive has just gotten to be too much to do it when there are churches around here that share my beliefs.

We had visited one, and while I felt welcomed, it didn't feel like home.
Today we visited another, a little closer, and it was just amazing.
I haven't felt that welcomed since I was in the church we were at before we moved.
They have children...and they are mostly HOME SCHOOLED an added plus.
They have an adult and children's Sunday School, something I find important.

I was just so amazed to actually find a potential home less than 3 miles away. There are no lights between my home and the church...it is a straight shot down M-19...I will go throughout the months of November and December and make a final decision if its home in January.

Wednesday, October 29, 2008

Another Interview

This time its one I got off the schools website.

I will be going to bed early and resting throughout the day tomorrow so that it goes over well.
I have been abnormally tired today and that doesn't encourage me....but this is an office job where I shouldn't need to be on my feet hardly at all.

Monday, October 27, 2008


Just because something is similar does not make my circumstances the same.
I am not like you.
We walk the same path, yet differently.
I am not like you.
We choose the same career, but yet...
I am not like you.

We went to the same school.
I went my way, you went yours.
We worked at the same job.
I did mine and you did yours.
Just because the footprints walked down the same path
does not make me like you.

When trials affect
I am not like you.
I see the positive, you the negative.
I am not like you.

The same trials often affect two very similar people in very different ways.
I see a lot of people who compare apples to oranges. Two different people will endure many things the same, but there is always one thing that keeps us different. Our perceptions.

Yesterday a lot of bad things were pointed out to me, but I didn't view ANY of them as being negative.
My father is a truck driver, right now it is a very lean time in that industry and he doesn't get many loads....God is keeping him home safe....yes, money is tight for them, but DHS is helping them get things that if he was working more he still wouldn't be able to afford because of their cost, but because he isn't getting the income they are helping him get his furnace fixed.
I see that as a positive....if he had more money, they wouldn't help...and the proportions are way off.

My mom had the flu, she also had a flu shot, they do that, that's how you get the antibodies, sounds pretty good to me, if she didn't get the flu from the shot, she would likely get it from a person later and be much sicker....sounds more like a positive than a negative to me.

My grandmother had a stroke, ok this isn't really a negative turned positive, but think about it this way....she is 90 years old, she had a good long life. She isn't dead yet. When my mom had her stroke it was a bit different, she was 48, not 90, at 90 I don't see it as a bat thing, there is a time to stay and a time to go. She isn't going to live forever, and why would anyone want to exist solely in a nursing home in this day and age...her life was full and its not over just a bit harder right now...she isn't really suffering it even took them a while to figure out that it had even happened. While it isn't a positive, its part of life.

My daughter got scolded for interrupting, ok this is the norm in my house, she has my total attention MOST of the time, so when the phone rings, she wants my attention. I don't appreciate the interruptions, but I do find it positive that she isn't afraid to come to me because she knows I won't hurt her just because I am on the phone.
If anything, maybe I shouldn't be on the phone while she is awake since she needs me more than whoever is on the phone if they are irritated by her needing my attention. I am her MOM, that means she is my job.

I have been sick, very sick....But God has not yet abandoned me. When I feel really bad, God shows me what I need to get through. When I am depressed he shows me why that's not what he wants for me. I have been able to talk to my husband more since I got sick than the entirety of the rest of our marriage. We have found several potentially life threatening conditions before they became life threatening. No, I can't walk on my own, but I am not wheelchair bound.
I had a heart attack nearly 10 months ago, but I am not dead. There are many people who are much sicker than I am....and I don't see most of them trying to off themselves because "life's too hard now" So I am just grateful that God has given me another day...I am grateful that Romans 8:28 says he will use ALL THINGS, to his Glory....that means the negative things too...and if God uses them, than how can it be a bad thing.

Needless to say, I am not like you. I choose to see the positive since the negative helps no one.
When I share my negatives with others, its not cause I want you to feel bad, but because I want you to pray for God to continue to give me strength to survive the trials.

Sunday, October 26, 2008

Weird Day

Today has been different.
We dealt with many issues of varying intensities.

I had a rough go with Lauren this afternoon, she wound up in time out for half an hour due to hitting...came out with a better attitude.

Chris and I dealt with Keys for Kids issues today as they dealt with blaming others for actions that neither party controlled.

then my sister and I got into it, over I am not quite sure what exactly, since I don't think it was what the blow up seemed to be about. Basically she was upset because Lauren acts up while we are on the phone and she only hears the negatives....I don't know really.

Then I talked to my dad, which helped calm me down, I have been so blessed with an AWESOME family, even through tough times.

God blessed me with Ecclesiastes Chapter 3, a time for everything, yes, right now it seems EVERYONE is having a tough time, but you know what, God works through those tough times. He blesses us when we don't deserve it, he provides our needs, not necessarily our wants, but our needs are always met.

Today we were blessed with curriculum in the mail Borrowed from a friend, but it didn't cost me a dime.
Yesterday Chris and I were blessed with some alone time, a date of sorts, something we needed to reconnect.
Today I was able to rearrange some furniture, it was a cool bonding time for Lauren and I, she had a blast helping me move things.

ya, its been rough, but its all good, because Romans 8:28 says ALL THINGS work together for good to them that love God, to them who are the called according to his purpose.

It doesn't say some, it says ALL. And yes, all includes the bad things too.

Friday, October 24, 2008

What a Week!!

Well, its been a roller coaster of a ride.

My headaches have been truly out of control, What used to be a little scab on my leg from the itching is now almost the entire side (about 6 inches square) my eyes hurt and every inch of my body aches.

I sat this morning praying, crying out for some relief. I realized I am approaching an anniversary (in just a few weeks I will have been seeing Dr. Silverman for a full year) then I look back, I just passed the anniversary of when I realized that I was REALLY sick again. This week would have been the week I had the MRI, CT and X-Rays to verify the shunt wasn't working.

But that's not what overwhelmed me. What got me, was the fact that I was trying to prevent a problem from getting worse (my pressures were 36cm in December) and ended up with a lot of problems being worse.
Before I had the surgery in February, I had daily headaches that would keep me in bed, ringing in the ears and nausea that was enough to incapacitate me....after the surgery, I found out I had sleep apnea, Chiari Malformation, and my leg stopped working due to nerve damage...supposedly TEMPORARY nerve damage...now we are finding that that TEMPORARY damage may be permanent and 10 months later I STILL have all the original problems only exacerbated quite a bit.

I am scared, frustrated, hurt, in constant pain and just getting tired of trying to get better.
I have been fighting this battle uphill both ways for too long and its worn me out.

Sunday, October 19, 2008

Rough Weekend

Well, I am not sure if it was the stress over the interview or what, but this weekend has been the roughest period of time I have had since July.

The headaches have been excruciating and if I didn't have my appointment in just 5 weeks with the neurologist, I would be calling...it makes no sense to call when it would likely take more than half that time just to get in (and even if it didn't when the headaches calm down, I don't have what it takes to get something done...when I am not hurting, I don't like to remember the ROUGH parts)

My right side has been really bad along with my neck and the base of my skull--and of all the nerve, my leg nerves have been really causing a great deal of pain. I needed my cane most of the weekend til just a few hours ago. I still should be using the cane since my balance is still really off, but I tripped over it twice while trying to move so I gave up. My back and neck are also in a great deal of pain. I am not used to hurting all over, this is the first time in several months its been this bad and I DO NOT LIKE IT.

Every sound has seem amplified, even the sound of my typing seems extremely loud and painful. The ringing (wooshing and buzzing) in my ears is driving me mad. The flashing lights are enough to cause me to despise anything but pure darkness. And between the dizziness and nausea, I just don't have the energy to do much.

I think I am going nuts. I really just want this to go away.

Friday, October 17, 2008

That was a Waste of time

Ok, even if I do get offered this job, we wont be taking it, training is nearly an hour and a half drive or more and will last 4 weeks....40 hours a week for a part time position. Blech.

Feeling especially cruddy today, I am guessing its due to all the stress. Too tired to really post but I can't sleep yet, my brain is running on overdrive.

Thursday, October 16, 2008

Another Interview

Wow today turned out to be a busy day.

I thought I was just going to be dropping off paperwork for my work study, that turned into a visit to career services and an awesome conversation, for once I actually feel somewhat confident that I will get a job.

Then we came home, we had barely walked in the door when we had a phone call from our bank....wow this can't be good (I had just deposited Chris's paycheck a few hours earlier) but it was good, I had applied there because my FAVORITE service lady at our old branch said it was a great idea....and they don't check credit, lol and they called me for an Interview, Hooray.
I go in tomorrow at 4pm.

Chris will Take Lauren to see her grandmother while I am there and hopefully I will walk out with a job.

Its in Gods hands but I really REALLY want and need a job.

My PTC or whatever has been getting the better of me lately. I don't really care though, I am NOT going to let it get the better of me.

Wednesday, October 15, 2008

A Unique Gift

Last night I received a unique gift, a phone call from a VERY good friend of mine.

What's so unique about this gift? We only seem to talk when something is bothering one or the other of us, ironically, its NEVER the bothered one that makes the call.

We have been friends since 1995 when we went to college in Tennessee together. I was the Maid of Honor in her wedding in 1997, but we barely spoke during the early months of 1996....she was angry with me and all I could do was pray and wait....when I had some struggles later, she would call me just to share that she was praying.

Over time this has become our very strong bond, God lays one of us on the others heart, usually when we need that friendship most and its always right there just as if it had NEVER been apart.

A month or so ago she had a really tough time and she was on my heart two days before she lost her job....I delayed calling because she was working (or so I thought) and when I did call, we talked about lots of other stresses too that had been bothering her.
This weekend it was me on her heart, ironically it was after my most stressful week praying about the Lupus and other CTD's.

Isn't it amazing how God always gives us what we need RIGHT when we need it?

Sunday, October 12, 2008

Its been a rough week.
I was originally overwhelmed with the thought of possibly having Lupus with all the rest of my health problems, but that was just the beginning.

I ended up researching CTDs since that's what he wrote specifically even though he specifically mentioned the lupus. One of the CTDs I found just happens to have a strong connection to Chiari.

I was so upset, frustrated, scared, the whole nine yards, then I prayed.
And Prayed.

You know what, God reminded me of something....He cares about the smallest of things, the song verse, His Eye is on The sparrow, and I know he watches me, popped into my head.

Even though it seems so very overwhelming dealing with my health issues right now...I see God working. I don't quite understand what he is doing, but it is comforting to know that he is watching over me. God is going through this with me, holding my hand, watching over me and encouraging me.

I go back to James and have to remember to take joy in these rough times because God is STILL in control of what happens.

Am I less scared? not really, but I am reminded that God is in control and everything will be ok.

Fear is a tool of the enemy, but for me, its bringing me closer to God....I pray more, I witness more, I trust more.

I am this way because it helps me deal, I pray for struggling families, like Noah's family and Susanna's family....These kids are going through a much worse struggle than I am, and it brings me great joy to pray for them....and it takes my mind off of my problems.

Tuesday, October 7, 2008

Time for a New doc, AGAIN

This morning I got my blood work results back, GRRRRRRR

Ok, I do appreciate knowing whats wrong with me, I just wish we had ALL of the answers instead of just some.

He ran about 27 blood tests, and no I am not going back to verify the count.

Out of those 27 tests, most came back NORMAL...unfortunately most aren't all.

My Uric Acid is High, watch for gout (don't even know what that is, but he explained it pretty well) Early warning, not diagnosed...be aware.

Calcium-low, take a tums a day (yuck)

b-12 Very low, he wants to see it nearly triple where its at, so I am to take a supplement, 1000mcg daily.

glucose Tolerance-abnormal, reduce carbs, increase protein, no between meal snacks unless its a veggie and a protein specifically green veggies- only whole grains allowed. Move after every meal, my housework should improve since he says even that is moving.

I thought he was done, Grumble.
He ran screens for Rheumatoid Arthritis Rheumatoid Factor Negative YAY
There's more, Uh Oh... Is there a history of Lupus in your family....uhm, not to my knowledge, WHY?
ESR level 43 (should be under 20) Grrr, don't even know what that test is for, but its got something to do with Lupus
ANA titre 1:1280 Should be 1:80 or less, that's the Lupus antibody, it is concentrated out of the blood, but he says I have quite a bit of it in my blood...grrrr

In Summary, I do NOT have Gout, I need to watch it.
I do NOT have Diabetes, I need to watch it.
I do NOT know if I have Lupus, I have a referral to get a definitive diagnosis....that appointment could go something like "Charlotte, you do not have Lupus, and you will be fine" but I was warned it will probably be more like "Charlotte, We can't make a definitive diagnosis right now but we will need to keep an eye on this and we will see you back in x months" OR, and this is the one I don't want to hear....."Charlotte, with all the tests you have had done, with all the symptoms you have or have had, it is clear that you do have Lupus and this is how we are going to treat it right now"

Ok, I love, LOVE, my rehab doctor, he is great, he is calming, he is reassuring, he is just plain awesome.
He referred me to the Rheumatologist, said flat out that I won't like her, she doesn't have a good bedside manner, but that she is good at what she does. I will deal with that, I guess.
I made the appointment, I see her November 17th at 1:30pm, appointment is expected to last about 90 minutes...woo hoo.

I had Lauren with me this morning because I knew it would be a fairly quick appointment, and guess what, his kids all 5 of them are homeschooled, YES my doctor homeschools his kids (or rather his wife, who is also a doctor, homeschools their kids) Isn't that just awesome?
He is a Christian, Homeschool dad, and an awesome doctor, I think I hit the jackpot, not to mention he actually talks to me like I can understand him instead of talking down to me....answers questions if I am confused and doesn't get irritated with questions....he is actually approachable. I am SO blessed...
If I have to go through all of this, at least I am in the best hands, I feel God really provided what he knew I would need to get through this walk.

I remember ten years ago this month when I met Dr. Ing at Kresge, I was terrified, he was the same kind of doctor....someone I did not fear going to because they weren't there to criticize but rather to help. And help they did... I love looking back now and seeing how God met the needs I had right when I needed them most.

Even now, I was a bit nervous about this blood work (although the only result I was expecting was the GTT results since I haven't had a true normal test ever and I have had them for 20 years) I wasn't expecting the other abnormal results.... But rather than get depressed, I actually feel confident, a little nervous (I am always nervous when it comes to new docs) but I just know God is going to work through whatever the results may be.

Monday, October 6, 2008

Pressure is still up...

Its really bad when I have a cold, nerve pain and everything else wrong and my headaches are still the most overbearing pain I have.

Fortunately since the headaches are so bad, the rest of the pain seems relatively minor, at least I am not hurting equally all over. The headaches are only this bad when the pressure is going up, which is good, because it will come back down...eventually.

In the meantime, today the computers will be shut down until 2pm when we do a reading test for Lauren with school and we are going to work on some activities together...she will be so excited to see that we aren't doing a lot of book work today. Unfortunately for her, its because we are looking for our other books and that will mean more work in the long run.

Saturday, October 4, 2008

Feeling accomplished despite feeling like crap

Today we got a lot done. Check deposited, groceries bought, Laundry folded...now to get it put away.

My head and chest are still killing me, but I did manage to go pick up some cold medicines (vaporub and cough drops) I plan on going to bed early and sleeping HARD tonight. Hopefully this will be gone soon.

I also misstepped, I have been fairly pain free in my legs this week, probably because I have been off of them for all but very short stints....this cold has really knocked me down. This afternoon on my way to go get the vaporub and cough drops I was going down the steps of our porch...not thinking about the fact that for the last NINE months I have had to go a very particular way up and down since my Left leg will not bear weight on any uneven surface....well normal people take the steps foot step, other foot next step, and either foot can go down first, I can't.

Since I hadn't been really hurting, I didn't think about it, and went down right foot first, DUMB MOVE, I nearly ended up on my head, the left leg gave way and I have been in a ridiculous amount of pain ever since.
I feel ridiculous since I have been doing this for so long...its not a mistake I should have made.

Friday, October 3, 2008

Intracranial Hypertension

My pressure is HIGH, and I know it. While its not high enough to put me in the hospital, I am counting down the days til my neurologist appointment hoping I can make it without calling and asking for a spinal tap early.

Unfortunately I do not even know if he will approve a spinal tap with the chiari so it will probably take two phone calls to get the tap even ordered. I will give it another two weeks (or less if I feel really bad) and I will call the neurosurgeon back, maybe he will order it from the DMC and I won't have to worry about having it at one of the two hospitals I do not really trust at this time.

I so wish I knew specifically which problem was causing this so I could fix it or at the very least I could know what the next step is.

I feel like I am going crazy.

I m so glad we are working on getting me back in school because I think I need the distraction to help me make it through this mess. I am so worn out and just physically and mentally drained from this nonsense.


Well this is getting annoying, my something is flaring, I am no longer able to tell it its the PTC or not since the Chiari and PTC symptoms are so similar, but I am miserable.

My cold is not gone yet, but my headaches and the tinnitus are in full swing making me a walking zombie, at least I can walk here in the house.

Tonight when Chris gets home I am going up to Wal Mart to get some cough drops and some groceries, we only have $15 to get us through til next Thursday but fortunately we don't need much, just cheeses, ground beef and a few goodies.

I need to make a menu for next week. too, I will post that with cost on my frugal blog though.

Wednesday, October 1, 2008

Still sick

Ugh, colds are not supposed to last this long, nor are they supposed to develop stomach issues.

Yesterday I was feeling a bit better, or so I thought, today I felt like we had taken two steps backwards though and I feel more miserable than before.

I did however manage to get the local community college called today, we will be setting up to start classes in January if I get the proper financial aid, they are going to try appealing the pell grant decision as well.

We will be doing Health Information Technology, I have talked to a few people and they all say that I am not ready to do the nursing program, maybe in two years when I complete my associates I will be, but right now I am not going to try to kill myself, and who knows, I may find I LIKE the office work more than I think I will.

In the meantime, I am going to enjoy this time off, we have been focusing more on school with Lauren and I would have missed the first week anyhow as I have been SO sick.
My headaches are getting worse too, but I see no point in calling the doctors since Dr. Guthikonda just wants me to wait it out as long as I can anyhow....I see Dr. Silverman next month and if we aren't improving, I will ask for a spinal tap though....I want to give it til the end of next month though as its been so rough.

Monday, September 29, 2008

So much on my mind

Today has been a whirlwind day, I called and made it official to drop out of school, I called and dealt with our mortgage issues, I dealt with other issues...still not feeling quite up to par, but much better thanks to a good nights sleep and a LOT of sweating, lol.

I feel SO undecided about what to do...on one hand I would LOVE to enroll in the local community college, and will likely call to see about doing that tomorrow, or at the very least schedule a time to meet and talk with someone about going in the winter term.

The reason I am so torn is because I really do not want to JUST be a Medical Assistant, many years ago I was heading into nursing, as a matter of fact up until February that was the direction I was heading, and I was all set to go enroll when I came out of surgery literally crippled.

I was devastated thinking God had abandoned me and was MAKING me do something that was basically a second choice...That frustrated me to no end...but I moved on, accepting that I could not do what I wanted....now, I am improving ever so slowly but improving nonetheless....
I have a rehab appointment next Tuesday and I think I am going to ask my doctor if it is feasible for me to continue to try to pursue my dream, or if I should accept that as an impossibility.

If you remember, he is obviously a Christian man based off of his secretive witnessing at my last appointment, so I know I can trust an answer I will get....barring his shadow being there....because they always distract me.

If I don't ask him...I will still talk to the admissions director of the nursing program at MCC....It may take me a LONG time to fulfill my dream, but I do not think it is out of reach or impossible in the least.

Sunday, September 28, 2008

Everything Happens for a Reason

I have a cold, I think...
I woke up, its 1am, my throat hurts, my head hurts (different from normal, lol) my whole body just aches...

I do not get colds often, but when I do I stay sick if I don't baby myself.

We finally decided that we are just going to drop school and figure out something else for right now.
Financially we can't afford to take the risk of waiting it out and we really couldn't afford the drive in that far at this point either.

God will provide what we need and when, but with me feeling crappy with a cold, I need rest and the last thing I was getting while in there was rest, my body is killing itself slowly since I have such awful times sleeping....I need to be going to bed earlier more often and consistently.

Saturday, September 27, 2008

Today has been a BUSY day

I am still tired, its 4:30 in the afternoon.

Yesterday I had my interview, it went well, but I wont know anything for two whole WEEKS, ugh, I hate waiting. Its temporary and will last about a year at 40 hours per week.
They have you take two tests to make sure you are capable of being able to do the job, a matching test and a filing test, after spending 7 years working in libraries, I think I can file pretty darn good, they were impressed as I got 100% on both and they were timed--I sat bored while I waited for the time to run out.

After my interview, I got to visit with my nephew as Grandpa and Grandma were babysitting BOTH grandchildren yesterday.
He is absolutely adorable, he is 5 months old now and as big as Lauren was at a year.

Then Lauren got to play with her cousin Morgan, last time I saw her mom she was pregnant with her, she is 5 now and they live really close, we just always seem to miss them when we visit.

When we got home, I made dinner, setting off the smoke detectors (wouldn't be so funny if I had ACTUALLY burned something)

Then I had my sleep study, that was a fiasco and a half....first the road I took to get there was closed and it took FOREVER to get through that construction, then after I got all wired up, the CPAP machine in my room didn't work, so I got moved.
Then my breathing belt didn't work, so they had to replace that....and then my mask was leaking too much so they came and changed that out too....what a night.

Thursday, September 25, 2008

A Topsy Turvy Day

This morning I had my appointment with Financial Aid, I knew KNEW it couldn't be good, if it was good, she would have told me over the phone rather than have me drive 45 minutes to get there, grumble.

I know there has to be something positive in this, the government, US Department of Education decided that our special circumstances that granted me my Pell Grant in the first place, weren't acceptable....they accepted them originally, the school accepted them, then they changed their mind...so unless a divine miracle takes place in the next 24 hours, I will not be in school starting on Monday.

I originally felt this was pretty darn crappy news, til I realized I have a job interview in the morning....with a company....that PAYS tuition costs if you are going into a field for a job FOR them....they pay for it.
I have an excellent shot at this job...they have already seen my resume, I applied online....I go in at 9:30am and am just thrilled since I am meeting with both the lady who called and her boss, plus a pre-employment test.

Then I get home, check my voicemail, I had called the neurosurgeons office per his request on Monday to let him know how the Naprosyn was doing...its not working at all, but that doesn't surprise me in the least, anyhow, there was a message from his nurse, basically telling me what I had already planned to do almost.
Wait it out as long as I can, if it gets worse call (why?) but now he wants to see me in THREE months, I have an appointment already scheduled for February, which is 6 months from the last one, so I have to call on Monday and ask if I need to change it or what I need to do...I don't see much purpose to changing it to three months if its not truly necessary...and I can live with the pain I am dealing with now, I have on and off for almost 20 years...I should be able to handle an extra month. Actually, looking at it on the calendar, it makes no sense to reschedule it, its only 4 weeks, scheduling an appointment 3 months from now would give me an appointment first week of January, I have one February 2nd...so unless it gets worse (and even if it does, I might just request my neurologist do a spinal tap, that would be the next step anyhow.)

I haven't heard from the family practice place yet, that makes me happy, the ball is in their court now and I did my part. No feeling guilty because I haven't made an effort.

This week I have had some weird symptoms, very personal type, but please pray, that if they have meaning, that they are related to a problem I already have and not something new....I have a gut feeling they are either related to the nerve damage or the Chiari though.

Also, a Praise, I have been roaming the house and most buildings with my cane in my HAND, not on the ground....I only seem to need it getting in and out of the car and in and out of buildings, the uneven ground still gets the better of me, but other than that, its parked.

Wednesday, September 24, 2008

Another Interview

Yup, I have another one on Friday morning, I am SO excited, its for a different company, entry level, but my foot in the door, and that's what I care about, YAY ME.

I am Broken

I have been fighting finding a family doctor since February...

I have made every excuse known to man, and yes, they are all GOOD excuses, but excuses nonetheless.

We have a medical center literally right down the street, they do a sliding scale, and I have heard that the doctors are good there as well, but that did not make me want to schedule the appointment...after all, why would I want YET another doctor to have to report to?

Well, I have a neurologist, pulmonologist, neurosurgeon, orthopedist, neuro-opthamologist, and physiatrist, and no one made a really huge fuss over me not having a family doctor, all said I SHOULD have one, but no one pushed for it...til Friday.

When I saw Dr. Shanidze I was totally dumbfounded by her persistence, her concern was there too, but she was very unhappy that I see only specialists she wants me to have someone to supervise ALL of my medical care.


I called today to check on the sliding scale to see if we can afford it.
Now we wait.

It went Good, Now the wait

My interview went really well yesterday, now I wait to hear, he was overwhelmed with applications.
His receptionist now said he was expecting maybe 10 people since the job is only 12 hours a week, but he got over 300 calls.

Its really hard fighting for one position with nearly 100 other people (after the first hundred calls they stopped scheduling interviews)

Monday, September 22, 2008


I have an interview
I have an interview

ok, its only a part time position, 12 hours or so a week.
I am SO excited
Its for a podiatrist office, they are willing to train and its for billing and receptionist work....stuff I am going to school for....Oh I am so excited.

I am so excited, God I hope this is it, I need a job so badly.

Pain Pain Go Away

This week is a week off of school, and since I feel the way I am feeling right now, I am thrilled. My head is KILLING me, my foot is driving me insane. I do not like feeling rotten, its not, nor should it be considered normal to feel like crud.

Tomorrow morning I am calling the neurosurgeon, family practice, and possibly my neurologist, fortunately the appointment for the sleep study is already scheduled or I would have to call on that too.

I also need to call about yet another job, and I need to call the bank and energy company, grr, too much to do.

Good night, hopefully I will actually get some sleep.

Saturday, September 20, 2008

I am tired

...and because I am always tired, I get to go in for yet another sleep study...next Friday night, yawn, she is writing for a stronger sleep medicine so they can get a thorough reading.

She also wants me to find a family doctor, how unappealing. I will check with the clinic at the corner they do a sliding scale, I will have to see if that includes having insurance.

Other than that, she wants me to lose weight, but nothing I do seems to help that. I am hoping one of my blood tests reveals a why there. A girl can dream right?

Not much else new going on here, Chris got the washer working, it felt SO nice to do laundry at home today.

Thursday, September 18, 2008

Another Busy day

Tomorrow morning we start yet another busy day...hopefully it will be busy in a good way and I wont have to repeat my sleep study (not counting on that very positively, as she wanted to repeat it last time but because of insurance we decided to wait three months...those three turned into FIVE, I am so ashamed of myself)

I get to go put in an application for a Chiropractic assistant at 7:30AM, I am hoping being there that early I can find out a bit more of what they want before I apply.
Then I get the luxury of going to my Pulmonologist appointment at 9:40am, hopefully since I will be ridiculously early, she will be early too...Hoping?

Tonight I put in two applications for a Nursing home, watch, that's the job I will get, I was very hesitant to put them in as I have never really worked with old people outside of my friends parents, and they aren't really what I would call old.

Today's pain level has been very stable, not too much, but enough to remind me that it hasn't gone away. Its rather annoying, but I am ok with it since I know it could be much worse like it was a few days ago....this is an improvement.

Wednesday, September 17, 2008

I did it!!!

I ended the first module with 100% in Medical Terminology, ZERO mistakes on my grade
I ended with 158% in Medical Office Administration, Hoooray, unfortunately that extra 50% isn't worth anything.

Another Job Application

I am almost giddy.
Friday morning, I am going to apply for yet another job.
A Chiropractic Assistant.
A job I can DO without my cane (I just need that to get in the building for the most part)
A job I understand, I have seen Chiropractors most of my life, if you go back in my blog, you can see that I actually attest that a wonderful Chiropractor (not the one I am applying with though) is who helped get me off of my walker....I know it works.

If I am going to work for a doctors office, I would much rather work with a specialty that I have used before...that gives me.....drum roll please
Neurological Surgery
Physical Medicine and Rehabilitation
Neuro Opthalmology
add to that Physical Therapy, Occupational Therapy, Polysomnography, Respiratory Therapy, and Laboratory and I am sure I missed something in there.

I have seen dentists and pediatricians as well as primary care, but I could NEVER work at a dentist office, and am not thrilled with the others.

I have already applied at a Neurosurgeons office, no response, a Podiatrists office, waiting-they are just going over the apps today and Friday is a Chiropractors office.
I will also talk to my Pulmonologist, and send a letter to MY neurologists office as I really like him, and maybe my PMR since my first appointment they were short staffed.

I have faith that God will provide JUST the job for me. I just can't quit applying til I have it.

Tuesday, September 16, 2008

Today was a Great Day

and frankly, I am surprised.

It was not a pain free day, but I feel very accomplished, I got blood work done this morning, all 25 tests that were ordered, and only 5 pokes worth.

Lauren was Extremely well behaved at our day in the lab. Maybe that had something to do with the hundred plus gallon freshwater fish tank in the middle of the waiting room? I don't know but it was a good day for it.

We got the car cleaned out, all of it...I like seeing floor again.

When I got home, I learned I am a finalist for two jobs I applied for, I see God moving, I so desperately want to go back to work right now.

Yesterday I found out I get a Gold certificate in Medical Terminology, I got 100% throughout the entire class. I only made two mistakes in class neither of them counted towards a grade though. I missed the word Fascia in a jeopardy style game (it was misspelled, so I was confused) and in the pretest we took I missed Dacry which is tear I put Finger, Toe, which is Dactyl. Close but wrong.
On the actual test though, No mistakes, YAY.

Tomorrow is my last day in Medical Office Administration Part 1, Thursday is the last day of Medical Terminology. Then we are all done with Mod 1, Mod 2 starts Sept 29.

Sunday, September 14, 2008

Rain, Rain, Go AWAY

While we NEED rain, my body can not handle it. My head has been throbbing uncontrollably all day, my leg has given out many times and my knees are killing me.

I need a vacation from all this pain.
Hopefully we will learn more after Tuesday and be able to get some relief meds

Today I visited

A new church, I don't know how I feel. It is closer to home, MUCH closer, but very small.
It was a good service, I will give it a second chance, and probably more than that, but I am truly hoping to get a job where I Can afford to drive to MY church again.

Saturday, September 13, 2008

A new Day

I feel a wee bit better today.
I am not as upset, I got some sleep, took some meds and did some homework.

Tuesday I have an appointment to have my blood work done, There are 25 different blood tests that Dr. Seidel has ordered, basically to rule out Peripheral Neuropathy. In a way I hope one or more of them comes out abnormal, because those may explain why it has taken so long for the nerves to grow back, and since most of them are testing for deficiencies, they are treatable and we can invariably correct it and perhaps it will up my chances for a full recovery sooner.

Several of these blood tests I have never had before, for example, he ordered a T4, its a Thyroid test, more complete than the typical TSH I have had drawn a gazillion times. There is also an A1C which is a 3 month sugar reading, I have had many glucose tolerance tests, but that does not help if I am extra careful before them (which as we know, ALL people make better decisions when the know that have to have a GTT done, lol)
So we may even get answers to problems that we have suspected but the generic versions said were within normal range. And this time, I shouldn't be anemic for the tests since I am having semi normal periods now since I went on the birth control to regulate them.

Friday, September 12, 2008

Well, Its official

This morning I had the NCV and EMG tests that confirm the nerve damage.

There are no nerve signals getting past my knee at all, they stop about 2 inches above the knee.
The calf muscles and one muscle in the thigh are also completely atrophied.
There is some amount of nerve damage on the right side, but not nearly as much as the left.

I was enlightened today, I nearly cried a few times and actually did once. Its not fun to hear at 32 that you may NEVER be able to walk normal again. There is no medicine to help the nerves grow back faster, there is no surgery they can do to make this better, physical therapy is a complete waste of time (unless we start getting nerves below the knee)
They can treat the pain, and hopefully with time, we will have some of those nerves back.

The current prognosis, 50% chance of nerve regrowth, will recheck in 6 months to see if we have any progress towards that, it could take 12 months to get nerves into my feet again, but even if they do grow back, there is no guarantee that they will ever function at full capacity again.

The likely hood of always having the numbness and tingling as well as some degree of Nerve pain, about 90%....I with those numbers were backwards. I am 32, I do not want to use a cane the rest of my life, but I was told even if I do start to get better, it will probably still be a necessary part of who I am.

If we have regrowth of the nerves, we will go through physical therapy. We will have to retrain them how to work.

I am to the point where I can not handle any more stress, my head is killing me on a daily basis, the pain in my nerves is unreal, and I am just so tired of all of this mess. At this point, I don't know which end is up anymore....

Wednesday, September 10, 2008


Ok, I have questions for Friday. I am losing my marbles.

Friday I go in for my EMG and NCV tests, if I heard correctly Dr. Seidel will actually be performing them himself so we will have answers right away.

Now the questions I have to remember to ask him is why I can only sit about 5 minutes before my foot falls asleep.
When normal peoples feet, hands, legs, whatever fall asleep, they wake up with movement....not mine, the other night, I walked the entire 60 feet of our home from one end to the other holding on to the walls just to go to bed because my foot fell asleep while I was checking my email.

Usually it takes being in one position much longer to fall asleep, and it only takes a moment to wake back up....I know because before February I never had these problems...now its every time I sit down. Its driving me crazy, and its not like its just my foot, it goes all the way up past my knee. My balance is bad enough without a sleepy leg.

Monday, September 8, 2008

Naprosyn Doesn't help my Head

Well, after a week or so on the naprosyn, I have come to the conclusion that it does NOT help the headaches.
I am thinking that the inderal probably didn't help them either. They seem very governed by uncontrollable circumstances. When our humidity is up, so are the headaches. Before it rains or whenever the weather is extreme, my headaches are extreme as well.

The naprosyn however, seems to be helping my knee, the PMR doc said it probably would, I was amazed that it had any affect at all.

My legs still hurt a lot, but the pain is more intermittent and usually only after extended sitting or standing. Its also more localized. I am a bit anxious for Friday when I find out if we can pinpoint the bad nerves and muscles so that we can start to work it out so they aren't killing me anymore.

Thursday, September 4, 2008

Sheer Exhaustion

Today I went pretty much nonstop from 5am til now, its 11:30pm and I JUST got home from school.
I am so tired. Still praying pretty hard that I get a job, actually praying VERY hard that I get a job. We need the income.

Right now I am at the very top of both of my classes. 100% average in both, very exciting. So now I NEED this to pay off for me.

My pain level has been pretty bad today, but I am a bit nervous about next Friday, thats when I have the EMG and NCV done.

Tuesday, September 2, 2008

What a day

Well, This morning I met with the Physical Medicine and Rehabilitation doctor for the first time. It was a very interesting appointment, very interactive.

I learned that I have no reflexes in my left leg, the arthritis I have is actually a secondary problem to the nerve problems and I go back next Friday for a Lower EMG and NCV study.

I also learned that the Naprosyn that I have started taking for the headaches (which isn't helping those) will likely be of benefit to the arthritis in my knees and ankle.

Overall, it was a good appointment...I feel like we just may start to make some headway.

Saturday, August 30, 2008

More Changes

Well I am down to just the physiatrist appointment next week, I have a dhs appointment to hopefully get medicaid to help pay off the past medical bills and the upcoming ones, that will move my pulmonologist to September 19th.

Wednesday, August 27, 2008

Worlds fastest new appointment

I got in on Tuesday at 8:15am, makes two appointments in one week, not abnormal for me lately, but it ought to be interesting. I am quite nervous this time around, my anxiety levels are going through the roof.

Tuesday, August 26, 2008

yippee, I get a new doctor

A physiatrist, can't you see my excitement.

I saw the orthopedic surgeon today, got the results of my bone scan, which found arthritis in both knees and my left foot. It also found muscle issues below the knee in the left leg.

The results of my MRI, Fluid on the knee, degeneration of the meniscus. Basically a pretty normal result.

The reason he is sending me to a Physiatrist is because the knee needs a lot more work and he thinks this is not JUST an orthopedic issue, NOT just a muscular issue, and Not just a Neuro issue and a Physiatrist works with all three.

I call and schedule the appointment tomorrow, since by the time I had CHOSEN a doctor all of their offices are closed.

At least school is going good. I am happy and doing great. Even applied for a couple jobs already.

Sunday, August 24, 2008

Rough weeks suck

This was one of the roughest I have had in a while. My neurologist declared me stable, ugh, if stable means this is my new normal then Life isn't worth it any more.

Last night I cried myself to sleep in extreme agony as a thunderstorm rolled through, at least I can connect the worst pain to something, too bad weather isn't a controllable trigger.

I applied for another job today. praying hard I get it.

picked up my MRI from last year, shocked beyond shocked when I learned it was the Right leg, oh well, guess I didn't aggravate an old injury.

Time to take inderal and go to bed, good night.

Monday, August 18, 2008

Today was the LAST time I will take Lauren with me

Oh my goodness, he was an HOUR late, and I had the FIRST appointment.
Because of all the waiting, Lauren was a real pain in the you know where and I forgot to ask him many of the questions because I just wanted to get out of there ASAP at that point.

I did get that he thinks my headaches might be caused by inflammation (of what, I do not know) and he prescribed naprosyn lol, prescription strength aleeve, my goodness what a joke. In a month I am to call to let them know if it did anything....which I am NOT counting on and see what he wants to do next...if it does work, I am to call and they will refill the script.

I do have a follow up scheduled for February, I am seriously wondering why and what the point is...unless of course that is when he will reorder the mri's and whatnot. In the meantime I suffer.

Sunday, August 17, 2008

The big day is upon us

Tomorrow morning I see Dr. Guthikonda for the third time.
I am excited and a little scared.

Last time I went in to his office, I was calm and completely prepared for him to say we were going to do a wait and see on a Ventricular shunt.

This time, I don't know what to expect. I have been so miserable over the last 3 months its hard to believe I have gotten so much done. My stress level has been up and down, but that is life. I guess I will have to post tomorrow of what we decide.

prayers please

Ok, Finances are really tight and we put a radio up for sale today. Please pray it sells, that extra money will REALLY help us immensely right now.

It only is up for $450 but every little bit helps.

Saturday, August 16, 2008

Since I can't say this outloud...

I have to say it here, but

Monday Can't come fast enough

See Chris would have a cow if he knew I was wishing for Monday, but with being in constant unbearable pain and only wanting to sleep, I need to make a list for the neurosurgeon. I want to know why the headaches have gotten so much worse in the last three months.

I have lost 8 pounds, which was a challenge in and of itself since I am still not able to walk more than a short walk. I have been taking the Inderal LA, which reduced ONE headache but the rest just got worse to make up for the other one.

I kinda want a spinal tap but I am not feeling confident that this is all pressure, but even if it is, lol, with the chiari, the pressure would still be there and who knows which is causing my life to be a living hell?

I have been studying and doing regular routines trying to help remind me not to give up. Classes seem long and challenging, 5 hours a night for 6 weeks at a time seems impossible today, but I am sure I will learn what I need to and all will go well. I did get a 100% on my first quiz.

Friday, August 15, 2008

Weather just may be part of the culprit afterall

About 10 minutes after my last blog post we got a huge downpour, no warning at all. Today so far no rain but the headache still hasn't broken only gotten progressively worse, I will DEFINITELY be asking the Neurosurgeon on Monday its very important.

For the first time ever I actually plan on asking for pain meds. While the inderal works a bit to help with the migraine aspect, it doesn't do me a lick of good during class when I get so sick I am barely alive.

I do enjoy my school though, I am learning a lot and I am really excited about the future.

Thursday, August 14, 2008

Pain pain go away

I am so tired of hurting. Today I can not justify the pain in any way, its a cool 75 outside, the wind is blowing and the humidity is pretty low as well.

Last night when the headache started, I was in class, we were laughing and enjoying ourselves, getting to know our classmates while the teachers were all out in a meeting. However, by about 10:30pm I was having massive dizzy spells and the headache was growing out of control. I came home, read my work, sort of, I will finish reading tomorrow since I decided to work on some more of today's work.
I did more than I needed to since I was reading ahead to make sure I have the info down. I was in bed by a few after midnight, and I woke up feeling 10 times worse, yuck.

Today Lauren has been really good, I love that little munchkin behaving like she has been.
I wish it was a constant.

Hopefully Monday we will get some answers.

Wednesday, August 13, 2008

Almost caught up

Oh my has it been a hectic last few days.

On Friday I battled the doctors office, I won, sort of.
Monday was the start of school, this module I have medical terminology and Medical office Administration
Tuesday I had to go go go

I picked up my paperwork (was made late which made the rest of the day a bit stressful) then I had my bone scan, that was pure torture, then I picked up Chris and we went to secretary of state to get my handicap sticker, another 6 months, the diagnosis he used, Lumbar Disease...after taking the first day of Med terminology it made me laugh pretty hard to see it written in lay mans terms. Then it was off to do Laundry at the in laws. I got home just after 9pm, I was and still am so tired.

Tonight I have class and am actually excited I can't believe I am really doing this.

Friday, August 8, 2008

I need SLEEP

Ok, I hope that's all I need, lol.

I didn't get much more than 2 hours total last night.

I did get my stuff taken care of today, I went to Dr. Silverman's office and I go pick up my paperwork to get my handicap sticker on Tuesday morning before my bone scan.

I didn't hear from my social worker today so I will call her on Monday and try to schedule an appointment on Friday.

I am off to do a Freezer Inventory then I will be doing a frugal blog post, we are going to do a challenge and see how long we can last without spending more than $50 shopping. That is for my other blog though.

Thursday, August 7, 2008

Sorta Good day?

Ok, Sorta good doesn't sound great, lol, but the humidity FINALLY broke today and it was almost livable, a headache that only reached a 4 helped immensely...I know people who feel that a headache that is a 4 on the pain scale is still relatively bad, but to me that is just average. I can still somewhat function.

Unfortunately, I didn't get nearly as much done as I needed to.
I got to town and realized I didn't have Dr. Silverman's phone number, Grumble, so I will be driving in once again tomorrow, except this time I will be heading to his office in hopes I can get him to write it up quickly between patients. I don't anticipate any real issues with this or I wouldn't try it.

I didn't get to talk to MY social worker about applying for supplemental Medicaid because they got my case transferred to the other office...I tried to stop by that office, BUT I couldn't find it. Mapquest here I come.

I did get the check deposited and although it was much more work than it should have been, I got to talk to an old teller that came back....that made me happy.

Tonight, my leg is bothering me much more than it should be and I have another long day tomorrow, but all is good, For the first time in August, I am actually feeling optimistic. Lets hope it sticks.

Wednesday, August 6, 2008

Today was Orientataion and...

Tomorrow there is lots to do.

Monday starts school, I had orientation tonight, it was a very quick hour, I hope classes feel that quick.

Tomorrow I have to call my neurologist and see if he will renew my handicap sticker and I also need to take a paper to his office to get assistance getting my meds.

Yesterday I was in unbearable pain all day, I felt absolutely horrible trying to get through it...I hate to think I am going to have to break down and actually keep a stock of pain medicine in the house for days when I am doing that bad. Today has been MUCH better, not headache free not leg pain free, but it was at least livable.

Monday, August 4, 2008

Another Day Another Doctors Appointment

This morning was a very busy morning.
We gave ourselves some time to get to the office, Detroit can have lots of traffic if you catch it at just the right time, today that wasn't the case, we arrived a half an hour early.

After a 2 and a half hour appointment, we are in the same place we were 3 months ago. There is no new vision loss, I didn't expect to see any new damage, ideally we shouldn't see any at all because of the surgery from 10 years ago.
There is some new swelling on the right side, its slight so livable.
My visual fields are stable. Looking at them they looked down right good to me, I remember when the whole thing was almost black, now they are mostly clear with some grey and black spots. The Black are blind spots and the grey is where I have trouble seeing some of the lights but not the brightest ones.

The headaches are still REALLY bad, I have felt worse and worse each day, but I am not so certain of their cause anymore. Especially in light of the stable vision and other odd symptoms.

I don't go back for 4 months because its stable, hopefully it will get to every 6 months, but it will likely always be more than once a year.

Sunday, August 3, 2008

God is So Good

This morning was rough, I did not want to go to church, even got a few miles down the road and nearly turned around and came home. I was miserable and angry and frustrated.

But I went anyhow, and oh how great is our God. Praise and worship alone led me to tears, I just prayed and prayed. Life has been such a roller coaster this week. I have spent a good portion of time not too thrilled with whats been going on.
God has let me know that I must go through this battle, that in and of itself is VERY challenging for me. Not going through it, but knowing that I won't get a miracle healing. 19 years ago God showed where this ends, and he has reminded me time and time again when I beg for him to take it from me, that that is not his plan. I have to go through it.

Today all throughout church I just kept hearing him speak to me in different things, not really following the sermon, but stuff I needed to hear and wouldn't have had I stayed home.

I heard him remind me that if I don't go through this, how can I show people that God is with you through the tough time. I have a much different approach when it comes to praying for or with people and sharing what God has done for me. Its always been more of a testimony, if he can bring me through this, he can bring you through too.
Before this though, God has only allowed me to go through relatively small trials. Not that I am complaining about not having scary things happen, but still, lol.

God let me know today that he has bigger plans for this. He reminded me that Romans 8:28 does not say And we know that SOME things work together for good to them that love God to them who are the called according to his purpose.
it says And we know that ALL things work together for good to them that love God to them that are the called according tCheck Spellingo his purpose.

Therefore, this is not a bad thing, and God will work it out for his good. No matter how hard it is to trust him, he is still in control and he will work things out and everything will be okay.
His will will be done no matter what happens. I am not to be afraid, and even when fears creep in, I am to remember that God is still in control. He is in charge of my life, and ironically, I have a bookmark in my bible called the rainbow, that just happened to be near the scripture we read today.
It was just the encouragement I needed right on time, just like God always is, never late, but right on time.

Saturday, August 2, 2008

Editing the purpose of this blog and begining a new one

Because of all that has happened the last 6 months, I have decided to repurpose this blog, ok, I am not really changing much, just the description, and topics that were SUPPOSED to be covered.

This was originally my blog to journal our homeschool adventures, when I got sick, that kinda fell out the window with a huge thud. Our homeschooling kinda went out the window too, thank goodness that Lauren is smart and was already ahead in a lot of areas.

This blog will now officially serve as by Chiari/PTC journey and will remain Momma's Thoughts because I am still Momma and they are still my thoughts, even as scrambled as they have been this past few months.

Lauren's Homeschool Journal can be found here. We will officially begin posting there when we begin our new year. I will be tracking entries by school day and date since we are required 180 days of school.

Thursday, July 31, 2008

Depression, Confustion, Frustration, Fear

Can you tell I don't know how I feel anymore?

Tomorrow is the 6 month anniversary of my shunt removal, that means, if they were right, any nerve damage I have left may very well be permanent damage.

Saturday I have an MRI to see if its orthopedic or neurological that my knee is still not working, today it scared me the most in a long time, it locked and actually gave out and I fell, fortunately, We have too much furniture and I just fell into the love seat...I had made it less than 3 steps from where I started.

Chris called at lunch, he hates his job, I hate his job because he hates it. I feel bad for him, he has to work til I can work full time and support our family. I am hoping that my August 18th appointment will shed some light as to when that will be a reality.
He is so stressed by every little thing that I don't see a different job being any help to him though.

My emotions have been all over the place, and I mean seriously ALL over the place. I have cried, screamed, contemplated calling the shrink they sent to me in the hospital, its been that bad. I am upset at every little thing now. My head hurts even more with the meds I am on to control the headaches, I don't think there is much more frustrating than to discover that while one area of headaches improved two others got significantly worse.

Lauren and I painted some butterflies, dragonflies, and flowers today that were made out of wood from Michael's for her room. She was very excited and they turned out cute. I was hoping making them with her would help me feel better, but it didn't work that way.

Well I think I am going to take a nap while Lauren plays on here, hopefully I will feel better later.

Monday, July 28, 2008

While we got a lot done, Things didn't really improve

This was a rough weekend, with Friday's start, Saturday we moved the LAST large load from the old house and Sunday I woke up miserable, but we went and picked up a vacuum cleaner anyhow.

We will be doing some school today and resting. I have to make a few phone calls today and will probably try unpacking one box between rest times.

Saturday, July 26, 2008

I overdid it

Yesterday I did something I haven't done in a while. I over used my bad leg.

It was a very busy day that started off on the WRONG foot altogether. I am glad God gives us grace and works through our stupidity though.

We woke up crabby, and fought pretty much til about 6:15 in the morning on our trip into town, not a good start to the day.

Chris was temperamental and broke my dustpan and I was yelling because no one was listening at all, just not a good morning, but stuff still needed to be done.

We got into town, slowed things down and felt a bit better.

We dropped Chris off to work, went to Meijer to fill the gas tank, I don't remember when the last time we spent so little to fill the car was, we had a $10 coupon to use on Gas because I filled my script, and gas prices have gone down quite a bit as well. We paid a mere 3.69 a gallon.

After that, we went in to the store and mailed off a couple of bills.
Then headed off to WalMart to get an oil change...we walked around the store for about an hour, stopping to sit at all open benches. About 45 minutes in I realized how much pain I was in, my knee started buckling over and over again, we were done.

We got the car, went outside and sat for about 20 minutes, then went back in to get the groceries, you see we had a whole day to waste being in town. These trips are very hard on Lauren since we don't really have anywhere to go between stops.
We got the groceries, didn't take more than probably another 10-15 minutes then we headed to the bank, deposited the check, its in WalMart too, but they don't open til 10, see why we had to waste time?

Went across to Aldi's bought the rest of our staples then off to lunch with Chris, then to K-Mart to cancel our layaway. I had planned on paying it off, but money is just too tight right now for that kind of spending.
Then we went and sat in the parking lot waiting for Chris to get off work. We took a nap because we still had two hours and Lauren and I were both exhausted.

I need to be much more careful about how much I use my knee, and remember when it hurts I NEED to rest, I am wondering if I caused more damage because I am always go go going on it til it hurts.

Back to town today to get the last of our stuff (I am sure we will be making a few more trips, but not sure when, so long as they are before September 15th)

Thursday, July 24, 2008

A Student once Again

This has been an interesting week, and we still have one day left.

Yesterday I finalized my registration for school. As of August 11th, I will once again be a College Student, granted I am going through a technical school, but still, the ball is now rolling.

I did change programs but not to the one I was hoping for. Because my leg has not fully healed yet, and there are no real guarantees that is will, the admissions counselor would not let me do the pharmacy tech program, but we also didn't feel MA was the best choice either so we switched to Medical Administration and Billing.

Wish me luck. I am hoping to be able to return to work within 12 months or so. This would give me an office style job which would be good with my bad leg as well as the rest of the health problems I have.

I started the 120mg Inderal LA last night, I am not sure how much it helped, but we will give it some time. I didn't wake up every hour, but that could have been sheer exhaustion, after all I was up from 5am til midnight...working towards being able to stay up til 12 daily is REALLY hard. I have been going to bed at 9 or earlier for the last 6 months because I was up at least 6 times per night, I still wake up often, but not as bad. Last night I got 4 1/2straight hours of sleep before I woke up, then I took a nap at about 8am. We will get it straight eventually. I hope.

Tuesday, July 22, 2008

Stray Kids

I know, I know, kids aren't strays, they belong SOMEWHERE, but why is it they land in MY yard?

We have only lived here two weeks and I have already discovered that I do not care for the stray kids from across the street. They keep picking at Lauren for not being allowed to leave the yard without an adult, and constantly doing things that we don't allow.

I am teaching her to resist temptation and not disobey no matter what, but its so hard on her when our rules are alot more strict than theirs...how do you explain that to a 6 year old?

These kids have no real rules, you can tell by the way they act and that you never see the parents out at all (they live right across the street) and we are very strict because I do not believe that a 6 year old needs to run rampant without supervision.

Call me old fashioned, but I would rather know where my kid is and what they are doing than not.

Another Doctors appointment out of the way and more tests to come

Yep, you read that right...more TESTS, ugh.

I am scheduled for another annoying MRI on Saturday August 2nd. This time for my knee. He also scheduled a 3 phase bone scan to check for stress fractures that is August 12th and an all day procedure, yuck. I return to see him on August 26th.

I got so emotional in the office trying to explain how hard it is to not be able to function as a normal human being. I never realized it would be so hard when I told him...I didn't even realize how much it bothered me.

Sunday, July 20, 2008

What is God trying to tell you????

Many years ago, God showed me that I had a road that he was going to carry me through...at that time I had no real clue just what that meant.

In that time he allowed me or gave me dreams that showed this walk in mostly black and white with very little color or sound, it was like watching old silent movies.
I have been watching these dreams come true since I was 13. I have met people, prayed with people, and watched people renew their faith in Christ through suffering since the walk he was carrying me though was the headaches.

For almost 13 years now, I have known that this battle will end with brain surgery. I had accepted that, especially after I had the PTC diagnosis, since I knew one of its treatments was a Ventricular Shunt.

Many people do not understand how I can accept that God will not just "miraculously" heal me, our faith says otherwise. The bible however does tell us that we must suffer sometimes. James talks about Counting it a joy to be in the midst of a trial, Paul mentions a thorn in his flesh, Job suffered A LOT. Why do we modern Christians seem to think that its a horrible thing to suffer once in a while.

This morning I was sitting in church. I felt absolutely horrible as I have for several weeks now, if I am not in ice cold air conditioning, I feel like my head is just going to explode.
The holy spirit fell like you would NOT believe, I mean, we serve an awesome God but this was just so amazing to experience, and I have been there before, but I and many others at my church REALLY needed that today.

While I was praying I began to beg God yet again. He stopped me mid prayer, and corrected my request, reminded me that I have to walk through this to do his will...I am so curious as to what that is right now. The corrected request was as if he told me, you do not NEED healing, you need strength to get through this, and Remember that Fear is not of God.

I hadn't realized how afraid I truly was of what is coming. When I was diagnosed with the PTC I was ok with brain surgery being the final outcome because a Ventricular shunt while not an easy procedure, for a neurosurgeon its a fairly simple surgery.

With the new diagnosis or Chiari, the chiropractor giving up on me and my leg NOT working right, I kinda freaked out....a decompression surgery that the new neurosurgeon thinks is more necessary than the VP shunt, is a LOT more serious. I told God that I didn't think I was capable of going through that, I think I heard him laugh.
Needless to say, I am no longer afraid, God will be there no matter what it is he chooses to allow me to go through. I need to feel honored that he knows I will hold firm to him no matter what comes my way. He reminded me that he did not give me the details that it would be a "simple" surgery, he never promised it would be easy....he just promised he would be there and take care of me.

The words to the Ray Boltz song, I will praise the Lord have been running rampant in my head since this morning, NO matter what tomorrow brings, I know I will serve the Lord.