Another week gone by

This has been a very eventful week.

Today we filled out Laurens SS app, she won't get anything yet, but will be eligible based off of cost of living til she is 18 so long as I am still disabled.

Overall, things are ok, my head has been constant pain for what feels like FOREVER. Its extremely weather oriented, yesterday it was 80 and I was sick enough to take my med trio, usually I stick with JUST my Klonopin, but last night I added a flexeril and a vicodin just to sleep, still took me almost 3 hours, grr.

Today is much cooler (about 20 degrees) and I needed that to break the pain cycle again.

I am seriously thinking of adding Central AC to the house.

And so Ends the Semester

This has been a whirlwind of a 2009

I have been sick and in constant pain for more than a year

I decided I was going to TRY to live life anyhow, and for me, I saw huge successes amongst the struggles.

In January I started school again, College was not easy for me since my pain does not allow me to sit or stand for long periods of time without movement.

I took 3 classes, Anatomy and Physiology (the school I went does this as one class most universities do it in 2-3 semesters)
I struggled like crazy to pass this class, missing a week from my Emergency Room run did not help in any way, but I got a 2 week reprieve since Easter was around the corner...nice recovery time, but missing that one class hurt big time.
I wound up struggling to carry a C- all semester, then at the end, Wowzers, I did it, I only needed to average a 70 on the final two tests to get a C without the minus...but I was thrilled when I checked grades, I got a C PLUS, yes, I did, I screamed, raised my pressure and made my self sick, but it was good to be sick cause I was happy not cause I had some stress that set my system off.

I was perfectly happy to go rest, I had NO plans on the agenda, we were done and it was ok to feel weak and worn down I had done it, I passed A&P in ONE class...yes, I am proud, with the fact that my memory has been getting significantly worse as my pain increases my brain power seems to be decreasing...hopefully we will be able to see pain management soon though.

I passed my other two classes with A's I had Medical Terminology (kinda an easy class for someone with all my medical problems), there were only 2 chapters where I did not see the specialist that was covered, that made me sad, but still, it was an easy A.
The other class I took was Business Communications, a required class for most majors...I learned alot, mostly confidence from this class.
I thought at first it was going to be AWFUL, it was speeches and papers, neither of which I like...but I made it.
I got a great teacher who really felt that the learning was more about the experience than the assignment, it was a practice class for the real world, by doing the work, and having perfect attendance, I got an A there too, if I had missed a class I would have had an A-
It was in this class that I went to class so sick I could not function and went to the hospital AFTER class, that day I got my spinal tap and have been functioning about 20-30% better ever since.

Also during this semester, I applied for and was approved for disability. PTC is very damaging to the medical resistant patient, my neurologist wants me to have surgery but the surgeons say I am too high risk and so we wait.
Currently, I am doing my follow up and maintaining a minor drug regimen ( I have muscle relaxants and pain meds that I take when the pain is unbearable, and an anti anxiety muscle relaxant that I take nightly to help me sleep through the pain, plus my B12)

I am still planning on staying in school, I will be taking 3-4 classes next semester depending on how I feel when registration rolls around. My goal is to get enough pain relief where I can get through my certificate program, but if I can't pass the physical, I will switch back to HHIT which I could then potentially do from home or part time or if I improve enough, full time.

Pain

Today I finished up classes for the semester, my pain levels have been through the roof this semester. I am proud to say I made it through with at least a 3.0 gpa but I have suffered alot too.

My head pain is averaging an 8 most days and I sleep almost more than I am awake.
My leg is improving SLOWLY, but when my head gets bad it quits entirely.

I see Dr. Turner in just over 2 weeks, and am hoping he can give me some sense of what to do next.
My medicare will kick in in February or March I believe, at that point I am sure he is going to send me to see a neurosurgeon. Either way I am struggling to have confidence in much of anything.

I did make it through the semester with only 2 ER runs, but I am fearing more may be on the way.

Disability Stage 2 complete

Well I received documentation today, I will start receiving payments for May, first deposit will be in June, I will be evaluated every 3 years, hopefully this does not last that long, I am hoping to see another surgeon when I get insurance and HOPEFULLY, that will help ME get better, instead of keep on fighting this.

Disability Stage 1 complete

Today I received the letter, I met the medical requirements for disability.

According to research that is a very good thing, I move on to stage 2, deciding if I am capable of working.

My disability date was actually September 1, 2007, which tentatively gives me 15 months back pay as of RIGHT NOW.

Praying hard that we get through the next step as easily since I need medicare, it will kick in effective February 1, 2010, once I make stage 2.

No Nap, and Pain returned

Ugh, I was doing so well, Tonight my back, neck, and shoulders feel like I don't know what Hurts like all get out.

I am nearly in tears if I move my head at all...

My leg, My goodness, Uhm, I am tired of this, VERY tired.

Go figure, most of my day is great so my pain decides that its goin to RUIN my day.

Heading to bed, and I am prayin for some GOOD hard sleep.

Positivity

This has been a rollercoaster of a week, and its only Tuesday...yesterday I finished my Medical Terminology class, YAY Me.

My head can't make up its mind and has been floating around a 6 for so long its gettin annoying.

I feel like its stuck.

Lauren has been better the last couple days, I think its cause she konws I am tottally serious and wont be puttin up with her crap.

I am worn out though I have to go pick up a script and some groceries this afternoon but I need a nap first.

FIFTEEN MONTHS

Thats how long it has been since I have taken a bath, walked without pain, played on the FLOOR with my daughter, or played with her in any truly effective way.

Thats how long it has been since I have known that My PTC won't be going away anytime soon, and if you take away 3.5 months away from how long I have known about the Chiari, and the road that I have been living learning about why I feel the way I feel.

Its amazing how much I have grown in these 15 months, I trust God more, I lean on him more. My husband and daughter...well they have come quite a ways too, this has been emotionally harder on them as they don't understand how I feel or what to do to make it better.

Laurens maturity has gone the wrong direction, she is growing down instead of up...its too stressful on a baby girl.

I have applied for disability, I have had more medical appointments that I ever thought was possible. Ironically, this all started TEN years after diagnosis.

Thank Goodness for Packaged Curriculum

Oh MY goodness, life is KILLING me.
I am so worn out ALL the time, I average a nap a day and my headaches have not been letting up.

My leg is swollen beyond belief and I don't know what to do to fix it.

I know God has a plan, BUT I want to know what it is...I WANT TO UNDERSTAND.

I am not handling this very graciously this week.

I want to be Human again

Ok, I am tired of this, I feel whiney and crabby.

On the outside, noone can tell the raging emotions til I burst. I am extremely stressed out, I know God is in control and that he will get me through this. He gives me the strength I need one day at a time.

He gives the peace that passeth all understanding which is good because I have NO understanding left.

I am ever so grateful for a family who God put in my life that went through this before though, She has been such an inspiration to me, God gave her to me just when I needed it most.

Her daughter has Chiari and everything I have learned makes me feel less crazy, no I am not fully completely in the situation her daughter was in...but I do need to get through this in babysteps.

Rain and Pain

And Swelling
Its rained almost all day today, My head has totally agreed that rain is BAD
My leg has agreed Rain is BAD
My balance has agreed Rain is BAD

Tomorrow is church, and I am still up waiting for my meds to kick in, this is nuts.

Presentation Day

Glad yesterday is over, I can't wait til the end of the semester I am worn out and my leg is acting up too often.

I have needed my cane for all but 2-3 steps all day and the bad pain is crazy.

Tomorrow is my Biology Exam, I am tired and ready for it to be done.

Update

Well, I thought it was a good day, My leg started acting up when I was showering tonight, balance is back to being gone...I am in a lot of pain, I am going to make a flowering Tea and then hit the hay early.

Very Sore.

Yesterday

I slept almost all day, between head and balance it wasn't worth getting up for.
I homeschooled from the couch, I love being able to do that.

Today I feel middle of the road, balance isn't as far off today and my head is behaving somewhat, I can handle a 6 headache.

maybe its 3 steps back

I am going to start charting better, my balance is off I fell in my kitchen today, I was trying to sit on a chair, I am tired of poor balance and dizzy spells. I am having major issues with turnin my head and my arm and leg are acting up really bad.

I think I am going to take a vicodin and do my homework then my Clonazepam, and go to bed. My head cant take this...its unbearable.

one step forward two steps Back

AHHHHHHHHHH

Ok now that I got that out.
Its been a good few days. Thursday I felt mostly ok, Friday I felt GOOD for most of the day, a REAL treat....then BOOM, Friday evening I realized I had overdone it significantly when before 8pm I was in Massive amounts of pain.

Saturday I woke up feeling once again like I had been hit by that freight train, My God will this NEVER end?

I took two vicodin (which I had avoided the last two days) BEFORE noon, I left class early because I was not able to function at all.

I feel so awful, If I thought another Spinal Tap would help I would go back to the hospital...its THAT bad.
I didn't get enough relief to go through that again.

I will be dealing with this til June, but I now officially think its time to call the lawyer in hopes that I don't NEED to appeal.

How can I function like this?

Mediocre Day

I have had a fair day Mostly moderate pain in the afternoon and I have gotten lots done today.

My head is starting to bug me more and more. Its not been too horrible though. I am glad of that, I am hopin for another good nights sleep. Only 4 weeks left til School is done.
Counting down.

Mostly Great Day

Today has been very long.

I got to go to Church this morning. I love my church and being sick last week I missed and oh man, I missed it big time.

Lauren and Faith had a bickerment (not quite a fight, but Laurens feelings got hurt)

I came home and made my last non raw meal for the next 10 days, we had a spiral sliced ham and mashed twice baked potatoes.

I have taken 3 half doses of Vicodin (it doesn't last 6 hours, so I take half doses so I can take it more often) Anyhow, usualy a half dose will last me about 3 ho(where a whole dose only lasts me 4.5 hours) So I took my first one when I started having major blind spots in my vision, my head was KILLING me, but I took my meds.

About 2 hours later, still has not kicked in, crap, Take another pill, that was an hour short of what I usually get...took over an hour to kick in, and only worked about an hour, Ok, now I am irritated...wait, wait, wait...its now been 3 hours, lets take another one, and Hope....that was 3 hours ago, I took the Klonopin to knock me out 2 hours ago and guess what I am still awake and still in pain.

Gives a new appreciation for what Christ went through on the Cross, Today was resurrection sunday...and Christ died on the cross for our sins, the ultimate sufffering, but I dont know how much suffering I can handle.

Tomorrow I see Dr. G, I hope he has ANSWERS for me, and not just lets slice and dice .

You Tube has play lists

I have much music that I would love to own, but have not yet bought.

I have typically found them on Rhapsody (only allows 25 plays per month) or You Tube, Today I found I can actually make a play list of my favorites on You Tube, I was so happy, I now have nearly 20 songs set on a play list, and I can listen to my music before I buy my CDs, I still plan on buying Kari Jobe, Jessie Rogers, and Matt Redmond, but I have some of the others already, so I am excited to be able to listen to them until I can get them.

Good Visit with MIL

Today was my mother in laws birthday, we don't usually get along and with the way I have been feeling I was hesitant to go see her.

I am trying VERY hard though.

It was well worth it, she gave me the name of her Lawyer so I can finish filing for disability.
She showed us about a new pasta thats ZERO carb and Zero Calorie, its pure fiber, I will try it, if I like it, I will order some...when a pasta craving comes, I would love to fill it with a healthy alternative, she has Celiacs, so I know it has to be good for her to get it.

We talked alot about where she has been and where I have been, I am thinking she may have the CHiari too, her symptoms are the same as mine almost exactly, she is going to talk to her doctor tomorrow and see if she has any experience treating with Cranial Sacral therapy. I have also talked to her about whats wrong with me...it was a really good visit, I am glad my pain meds got filled because I wouldn't have made it without them...my pain is not very happy with not being taken care of.

TOday I have been in quite a bit of pain, I filled my vicodin this morning, I have taken only 2 caplets, but I want them to last, so I won't take more til the pain is unbearable again.

Maybe about an hour from now, when I am taking my Clonazapam, that ought to really help me sleep good.

Opthamology

Well I visited opthamology today.
My vision has gone done significantly, I lost some more color vision as well.

My nerves are fine and my visual fields are stable as well.

So, now we ask, is it really the PTC or is it the Chiari?

I will learn more on Monday afternoon at Dr. Guthikondas appointment.

Home from Detroit

Well, lets see, we have two known diagnoses, I had them before I walked in so I knew they were there.

We had three Neurosurgical consults, don't know why I had to schedule an appointment with my neurosurgeon if I had all these consults, but I was told to, so I am going.

I also have an appointment with opthamology, my vision has been affected with this latest bout of PTC, so I have to have an eye exam to see how much and why.

My manual fields were not that great, so I have to have regular fields.YUCK.
My head is getting a wee bit better, but I have been on Morphine all day and tomorrow I am going to pick up a script of Vicodin.

I am tired now, and I will be taking my Clonazapam, and going to sleep early, hoping for about 7 hours tonight.

I will know more Tomorrow and Monday on whats going on with my brain.

Heading to DMC

We are leaving at about 11am tomorrow

A 4 hour night

Well we are rotating between 3-4 hours of sleep, I still feel like I have been run over by a freight train, this afternoon I see Dr. Butler.
I have lost 14lbs in 5 days I feel really week but I do feel hopeful and full of peace now.

I emailed my friend to thank her for calling my church and having them pray. Her husband had lifted me up at their mens prayer breakfast, and later that day I started to have peace with whatever God's will is in this.

Thursday and Friday I had no peace about it whatsoever.

So now I finally feel if I am told to go to the hospital and referred for surgery, I feel it will be the right time.

Why Don't I feel better

Well that tap lasted not nearly long enough.
I follow up with family doc on Monday, and I am scared he is going to send me to Detroit anyhow, my pain is TOTALLY out of control, if I am sitting up or laying down, it doesn't matter.

If I cough or sneeze my right arm goes numb, I can't turn my head and I am in absolutely unbearable pain still yet.

The Clonazapam, I thought helped me sleep, now I think it was more from being up for 24 hours straight first. I got 3 hours last night, I am in the worst pain of my life and I have to make my puter screen big to see what I am typin.

Reading is challenging and the nausea and pain are just nuts.

I am starting to worry that this is more than just a ptc flare.

My Trip to Henry Ford

Last night I lost my battle to wait this out.
I gave up.
I felt like such a failure....hold it, who did I fail?
I did not fail myself...in reality, by waiting, I would have been failing myself more.

I headed up to Henry Ford after school last night. I thought it was going to be a long wait to get in since the ER waiting room was quite full.

I waited all of 5 minutes or so.

I was seen by a nurse, she took my medical history. I was in unbearable pain.
I was seen just a little bit later by the ER doc.
He walks in and says someone has a headache...well DUH. He was great though.
He got me all set for a tap almost no questions asked, then he had lots of questions.
When was your last CT, who is your Neurologist, when did you see him last, etc
The first one was hard, I don't recall, the second one was EASY Isaac Turner, the BEST Neurologist in South East Michigan. and Obviously the third was easy too, Uhm, yesterday.
He called Dr. Turner to get his blessing to do the tap. There was a miscommunication between Dr. Turner and I in his office, but he will get over it...I make my medical decisions, he just helps...I trust him alot, but the decision he was making in that case, I didn't feel comfortable with at all.
Dr. Turner did order the Spinal tap for me, with orders to bring my pressure down to 18, that reduced my pressure by half...made me a bit dizzy am still light headed and nauseas.

Up in Anesthesiology, the Dr was absolutely amazing. He got the needle in first try, used lots of anesthetic so I didn't feel any thing til he took the needle back out. Talked while draining it and he and the nurse Shawne were just great to be around, I felt a sense of relief...confidence...trust...peace.

God really truly brought me on THIS day, because I needed THIS staff, the nurse who was my nurse upstairs doesn't usually work nights, but last night she worked a double shift. The doc in the ER did not question my certainty that I knew what I needed and wanted, and that it was going to be OK.
I am so glad I didn't wait.

I feel better knowing I am taking care of myself. Even if its hard.

Not What I expected my 300th post to be about

I took my first dose of clonazepam last night.

It did what Dr. Turner Promised...I slept 4 1/2 hours thats 2 hours more than Tuesday night and 1 1/2 more than Monday.

There is absolutely no pain relief though.

Today has been really rough

I saw Dr. Turner this morning, He is Amazing.
However...
Reality hits
The topamax is NOT working, so he took me off of that
The Flexeril is not working, so I only need to take that when I REALLY need it
He gave me Clonazepam to try so I can get some sleep, HOPEFULLY

He told me to make up what I remember about what I was told for restrictions based off of the headaches, its not really in reacords anyhow.

If I go to the ER, He wants me to be sure that I get a Spinal tap in the proper position (duh, sorry, that made me laugh, and it hurts to laugh) He wont order it because he knows our financial concerns, and he is willing to wait til we have medicaid otherwise...even though he doesn't want to.
He was willing to have me go to the ER in Detroit and just see residents, however, they turned me away WITH insurance...and he was furious.

THe docs he is going to recommend for after I get disability (and or insurance) don't accept medicaid, so it will have to wait til after we have medicare. I am totally stressed over waiting.

Tomorrow is the Big day

Ok this is a multi faceted post
I am THRILLED I dot have to wait any longer for my appointment, My head has thoroughally gotten the better of me.
I have felt aweful all day.
The only think keeping me home is that I know I go in tomorrow to Dr. Turner.

I also found a PTC support group the other day on Daily Strength, Its been great.
I needed it Oh how I have needed it...I May not feel better, but at least I dont feel so alone anymore.

count down

Ok, I nearly made a pitstop on the way home from school tonight, make it 7 near trips to er, I can NOT deal with this anymore.

Pain on 1-10 is not fair, 25? higher?

Every day it seems like Wednesday is further and further away.
Watch I will feel good on Wednesday morning when I go in...just watch.

Ok, Its gonna be a rough go

I am counting down til Wednesday.

I see Dr. Turner Wednesday morning, and I am so tired of feeling like crap, I actually feel worse this month than I did last time I saw him, it keeps getting worse, I am ready for a trip to the ER, and I haven't been there in a year.

I am totally overwhelmed, I just want a break.

I need a pain vacation.

Still sick

Ok, I am getting so tired of this.
I am ready to go to the emergency room, I will talk to Dr. Turner next week, this makes 6 times in 5 weeks I have contemplated a trip in and I have 5 days to go, AHHH!!!

I am so stressed out its not even funny.

Rain makes me miserable

And today is a rainy day.
I slept til 10am, got up and my head is just throbbing, I hurt all the way down my right side, we wont mention that my left leg is hurting too.

I am working on my business paper too, its driving me insane, I cant think straight, because thinking hurts. breathing hurts, I see Dr. Turner in ONE week, and I have to let him know that I have contemplated a trip to the ER on at least 4 occasions in the last 5 weeks, thats too often.

I am praying for the disability to go through soon. I am so tired of being in constnat pain. Praying CHris gets a job with good insurance if I get full disability because unless I get a VP shunt, and the Chiari fixed 2 good days a week is not enough to carry a full time job.

Next Neuro App scheduled

The queen of procrastination has scheduled her next appointment.
I had been having issues with not wanting to schedule it, fear is a great motivator lately, pain has been really bad and I know I need another tap.

I called the office this morning, my appointment is April 1st at 8:20am I am trying to not be nervous, I liked him last time but I dont know if I want the higher dose of Topamax either, the last round made me so sick, I spend 10 days down.

I am just getting tired of this mess its been too long now.
I have been having worse headaches than usual and am always tired too, I will be asking for anti nausea meds too, something I have never asked for since I have been sick in a long time.

feeling somewhat optimistic

Someone with PTC was approved for disability this week.

I survived

The appointment this morning took almost 2 hours, I left hurting so bad, from sitting so long, half of my problem is that I can't sit that long, and moving to start over felt good, but I had to go sit again I actually had an hour long appointment and a 45 minute long appointment, oh did I hurt.

Now its time to pray but I am not even sure how to pray anymore.

On one hand, if they declare me disabled before September of 2008 I will get significantly more money, but wont qualify for SSI which means no insurance. THAT DOES NOT HELP me get better.
On the Other hand, If I am disabled AFTER September 2008, I will only be qualified for SSI, which gives medicaid, but less money.

Since I left my job back in 2003 because I was sick all the time and being a mom was more important than trying to fight it, I don't know what will happen. I am trying to get training so it looks good, but now its a waiting game.

If I qualify for disability on the PTC, which is what is getting the better of me RIGHT NOW, even more than my leg has been....its what wakes me up, its whats making me sick all the time, and its what at least one of my meds is treating... or trying to treat, anyhow. Its whats limiting my ability, and its whats giving me my vivid dreams again. Maybe another post, we shall see, maybe. Anyhow...THat has been ongoing since 1998 with ONE remission, but several times with lack of treatment because I learned to live with it...or was stubborn and scared...but it has been being treated and monitored thoroughally for going on two years now, I can't afford to NOT take care of it for Lauren's sake.

If I get it based on that I will need Chris to get a GOOD job with insurance, because we will not qualify for medicaid at all. We will likely lose all of our assistance. In the end it will work out ok, but the wait will be really rough.

At this rate, I feel like I let my family down. I have never gotten to this point, I have always taken care of them and this was REALLY hard for me, now I wait, we will likely have a psych eval and many other appointments, I will work through it and try not to put cover it, Its very hard for me, I am used to bein strong for my family and right now I feel so vulnerable.

Stressed Out

I was up late last night, My heart was aching, my head was aching, my back pain is spreading, it is crawling both up and down, it has made it up past my bra and the low back has been in constant pain especially when I breathe.

I found a Caring Bridge page last night for a lady who has PTC, it made me cry since she has had so many shunt procedures, many less spinal taps than I have and much lower pressure, and very little visual damage. I am so happy she has been through so little but at the same time I am so frustrated because my docs refuse to do anything until I lose my vision so I suffer constantly, it was a very hard read, I have learned to live with this for so long.

I am quite grateful that I gave up on pain medications when they quit working since I am afraid that the amount of pain I would be in would be significantly greater if I was on them, my drug tolerance is so high anyhow. Tomorrow I go for my SSI Appointment they called this morning to remind me, I can't believe how real it is, I JUST want the insurance, I NEED a spinal tap so bad its not funny.

I have been researching the gastric bypass stuff, and honestly I doubt I would even be able to have one since the hospital that the neurosurgeon wants me to have it at does not do them on people who have had a heart attack, so when they overdosed me on the dilaudid, they may have cost me that opportunity too....I will have to play a nice long waiting game and see.

I am scared, emotionally, a wreck and not sleeping well anymore. I would hate to think I may qualify for the SSI on my sleep apnea based off of the mental case, that is quite neve wracking, but whatever it takes. Lauren is taking a break from school for a moment before she starts her phonics lesson, I can't believe she actually finished her math on time, she had to do two lessons today because we got grocery shopping done yesterday morning while I was feeling pretty good, we don't waste time when I am feeling good since we never know when it will happen again anymore.

Touch of the Masters Hand

Well it was battered and scared,
And the auctioneer felt it was hardly worth his while,
To waste much time on the old violin but he held it up with a smile,
Well it sure aint much but its all we got left I guess we aught to sell it to,
Oh, now wholl start the bid on this old violin?
Just one more and well be through.

And then he cried one give me one dollar,
Wholl make it two only two dollars wholl make it three,
Three dollars twice now thats a good price,
Now whos gonna bid for me?
Raise up your hand now dont wait any longer the auctions about to end,
Whos got four Just one dollar more to bid on this old violin?

Well the air was hot and the people stood around as the sun was setting low,
From the back of the crowd a gray haired man,
Came forward and picked up the bow,
He wiped the dust from the old violin then he tightened up the strings,
Then he played out a melody pure and sweet, sweeter than the Angels sing,
And then the music stopped and the auctioneer,
With a voice that was quiet and low he said now what am I bid,
For this old violin and he held it up with a bow.

And then he cried out one give me one thousand,
Wholl make it two only two thousand wholl make it three,
Three thousand twice you know thats a good price,
Common whos gonna to bid for me?
And the people cried out what made the change we dont understand,
Then the auctioneer stopped and he said with a smile,
It was the touch of the Masters hand.

You know threes many a man with his life out of tune,
Battered and scared with sin and hes auctioned cheap,
To a thankless world much like that old violin,
Oh, but then the Master comes,
And that old foolish crowd they never understand

Song lyrics Wayne Watson, Best song written when we don't understand WHY?

So Much on My mind

Oh I don't even know where to start today.
Its been interesting,
We went shopping, God blessed us with all sorts of really good deals.
I love being frugal and having it work out where we would have literally spend nearly twice as much.

Lauren ACTUALLY behaved today.

I have been on the 200mgs of Topamax a day for 2 weeks now, and officially can say I DO NOT LIKE the higher dose, my headaches got worse, my pain in my leg decreased, my nausea, tinnitis, intestinal issues, and dizziness all increased, and now I can't focus on anything, I am tired all the time but I have trouble sleeping.

Uhm, We have to work on Laurens Pinewood Derby Car tomorrow, no weights for her, its all about participation, long story short, we ran out of time to get it to Mr. Steve to get it weighted before next Friday.

I have to work on my paper for Business Communication, not to hard seeing as I have my work online already just have to print it off and type it up.

I have my interview for disability on Wednesday, I am praying really hard that that goes smoothly since we have 10 YEARS of this mess. I hope they take it all into concideration and do not deny it automatically.

I am drained, physically, mentally, emotionally, financially.
Spiritually, though, I know God is working, somehow, somewhere, God is working his hand in this...what appears to be a disorganized mess is a well organized planned orchestrated event, and he knows exactly what he is doing.

My Defective Brain HELPED Me

For once I am totally GRATEFUL for my not so healthy brain.

Ok, I was totally terrified when I was diagnosed with PTC back in 1998, the thought of having to see a neurologist for the rest of my life scared me to death, and the opthalmologist scared me even more since I saw all the blind people on my first visit, and to be honest, I quit going at least twice.

Then I learned all I could because being sick stunk, I got my shunt put in and I went into a shunt induced remission, HEAVEN, Til it failed and I was right back where I started, staring at all those charts of brains and eyeballs made my head spin, I knew them inside out. Those models in the offices could not possibly be parts of my body.

Or could they? Hmm...I wanted to go into nursing til my nerve decided it was going to quit working PERIOD.
SO I decided Medical Assisting, I could be up and down and it gives me my medical environment. It still required Anatomy and Physiology (or a generic equivalent) I chose to take the AP class in case I wanted more later....Ahh, that first test was MURDER Muscles and bones, bones werent bad, but muscles and the skull were just too much...
this time
THE Brain, Ear, and Eye, Hey, I know this stuff. Mine does not work quite right, or at least some of it has been fixed, lets see the optic nerve is here, the cerebellum is here Oh look thats where those cereberllar tonsills are SUPPOSED TO BE (Chiari malformation) Look, Thats where all that extra spinal fluid is made (the choroid plexus) Identifying the ventricle was actually fun to me, It all made sense. It actually scared me a little how much I understood because I could explain it to my classmates medically to help them understand it but hey, I understood it and when it came to the lab practical, I got an 88, which for someone who does not test well is really good, I did not do as well on the lecture, but I was within 10% of my classmates which made me happy.

And for my fellow PTC patients Guess what we discussed in class today, the blood and of all things Carbonic Anhydrase, and what are Diamox and Topamax, but Carbonic Anhydrase Inhibitors, so I am actually going to learn how our meds work and what they are supposed to do...I say supposed to do since my pressure has not gone down, my headaches are still horrid, the diamox NEVER worked and the 200mgs daily of topamax is just helping with the nerve pain in my leg it has not touched the pressure, I can feel it daily and my eyes and ears water to tell me its high, so we shall see when I get my tap, it wont be too long now. My docs are finally helping me.
Now that I finally have a doc that is much better, I did some homework on him the other day, I have a friend that may know him from residency rotation too, Dr. Turner graduated from University of Maryland Medical School in 2002 and Josh graduated from Wayne State University Medical School in 2002, so they would have both been on staff doing residency at Childrens at the same time because I know Josh did a Pediatric Neurology rotation... Hmmm Maybe thats why my brain hurts, I think too much, anyhow my new neurologist is my age, and maybe thats why he cares more, its easier to see a patient who is significanly different in age as just someone else, but when its closer to home it brings it more to life, it could happen to your family, thats why younger docs tend to be more compassionate as of late....just my observation.

Why I am Glad we Homeschool

It has been a very rough year for my family, between me being very sick for over a year, my husband losing his job, and us moving...our lives have been turned upside down.

Lauren is currently working at a 1st grade level in all but reading, there she is reading at almost a 4th grade level, her comprehension is remarkable.

If we had put her in school when we were pushed to, I am afraid she would have missed a lot of time, I could have never gotten her to the bus or to the school when I was so sick, Chris had to be to work way before our public schools started and I could barely get out of the house to get to doctors appointments.

Now when I was all dopey, we did school on my bed, she climbed up and we did our lessons right there, she never got behind and things kept going. When we moved, she did not get behind, when we got all the obnoxious snow this year she did not get snow days, or it was converted into school lessons, she learned about its formation and about the weather patterns.

I would not trade homeschooling. Even when I get better, we will still homeschool, we all find it much better to take the time to teach her at home she is learning far more than she would and we are happier with this choice.

its back

headache back full force leg pain joined it today, no clue why.

Meds are finally kicking in

The higher dose of topamax is FINALLY kicking in.
It is not penetrating the headache, but it is helping with the leg pain a bit. I was researching how it works and I discovered that it shuts the pain signals off.
I learned that and also noticed it when I missed a driveway on my way out today. Uhm, Oops.
We shall see the headache is about a 10 average, but I am getting used to that, it seems that its what it normally is though. I rarely get lower than that and when I do it goes no lower than an 8 or 9 anymore. It spiked after they took the shunt out and I have only had a few good days since.

Ministry?

How do you know if you are called into the ministry?
One of the biggest clues to knowing is if your calling is correct is if when you pray for someone and the prayers actually match their needs.

I got a strange message from someone this week. They feel called into ministry, yet time after time I see something totally different.
I have been a Christian for more than half my life, I have worked in ministry, been active in many many ministries, and never once had someone tell me that what I prayed for them was inaccurate towards their circumstances.

We have been having a lot of struggles recently but God has continued to bless our family, anyone who has read my blog can see that, He has been my strength time and again. This week was very very rough for me, but yesterday I saw a bright spot and shared the positive....I thought it was a good thing to do since this "friend" has been struggling in her own life.

Well, she comes back to me in a text that she sees a dark cloud over my life and that I cant see the silver lining and cant see Gods blessings, HUH? Say what? I have been sharing with her how God has been my strenght and provisions all along, I have shared with people even in the hospital how he has been the only reason I've been able to stay hopeful.
Say WHAT?
Ok, I lost it, I did write back but How can you go into ministry and be so off? She has written me many times in deep despair about how she is struggling to trust God in her problems? is she seeing her and translating to me? I don't know, but this is not referring to me.
I know God is in control, our financial situation brought me a close friend in church, my health situation has been a testimony to many people over many years.
God has always used it...I am not afraid of the next steps, as he has directed this for almost 20 years now, what is there to be afraid of.

God is in control...I am not, nor would I want to be. I would mess things up, I like things to be in order, his order is perfect, mine is not necessarily perfect in his way. I am confident that whatever happens will happen for the reasons he has guided.

As someone going into the ministry, I would hope that people would thoroughally pray and make sure that they are sure that they are in the whole will of God when they speak to someone else, making sure that what they are saying is for that person. I know I am in no way what that was for this is not the first time someone has done this to me. As a matter of fact someone out of the will of God just like that drove me out of church many years ago questioning my faith because I trusted God to go through my first surgery with my PTC...Hmm, God was in control then, used me right there in the hospital to witness to the nurse who needed to be brought back to him...I don't think it was a coincidence that he kept me overnight, he needed me to speak to THAT nurse...no I didn't push God, I just said that I wasn't afraid that God was going to make everything ok, and she asked how I knew, and I answered. When I was in the hospital last February each different floor had a purpose, an aide wanted to know why I was crying, I was singing praise songs because I was praying I was so stressed out, I was singing Matt Redmonds song You Never Let Go, She understood the maker and we talked for almost an hour about how great God really is, even in a hospital room after a heart attack I was more than happy to share Gods love.
He is amazing anywhere.

How much sleep does one person need?

I guess I should not ask how much sleep does one need, lest one thinks I am depressed.

I am far from depressed, miserable is more like it.

I am definitely experiencing some of the side effects of the higher dose of Topamax, for one I have had the worst headaches in the world since last Saturday,

I can feel my pressure is higher than usual, which is either Chiari related (I am guessing that because the rain came yesterday, and atmospheric pressures trigger Chiari headaches) or PTC headaches either way its definitely pressure because my eyes and ears are draining and have been for a week now.

My CPAP pressure was raised last Friday and the headaches kicked in Saturday afternoon, by Sunday I was feeling awful, and Patti could see it, but she always can tell, she is good like that.

Sunday afternoon I filled the Topamax and took the first 100mg tablet, because the headaches were so bad I figured the higher dose might help kill the darn thing faster, boy was I wrong, here it is 7 full days later, I missed church today because I was SO sick, yesterday I was sent home from class by my instructor because you could see how miserable I was.


I go in on the 18th of March for my SSI interview.

I am hoping for immediate Medicaid so I can get a spinal tap scheduled ASAP.

So far I have taken 6 naps in 3 days plus nighttime sleeping. I am still tired and it hurts to hold my head up.

I have not felt this weak since Lauren was born.

saw new doc

digging up old records
pain 10+
waitin on next step

extremely discouraged

yesterday and today I had some bleeding issues I bleed for 15 minutes from a scab and I called the rehab doc, scared me to death. then today I had the same thing happen from a different one for 10 minutes.

My headaches have been totally out of control for the last 4 days, I feel so aweful, I don't know if its from the change in the cpap pressure, or the upped dose of topamax, but its just getting the better of me.

Chris says he hasnt seen me this sick since 2001 when I had the shunt put IN. I know my pressure is UP and I feel totally awful. I am getting to the point of going to the er, and I don't want to. I don't know how much more I can take. Today even the pillows hurt my head.

CPAP Stinks

Ok, it doesn't stink, this new pressure does, and if I don't adjust soon, I am calling and they are going to have to adjust it again, 17 it very high, and its hard to breath, my headaches have been much worse at the higher pressure and I am not sure if its due to the pressure of the machine, the stress level of disability process, or the fact that its just plain getting to be about the time for another spinal tap.

I am praying I don't need to seek an attorney (I already have one) to get the disability, I am sick and tired of not feeling good and I just need a break.

Tonight I start the higher dose of Topamax, I am so nervous, I have read so much about side effects and I had nasty side effects on diamox to the point of having to be taken back off right away (less than 2 months) but if it helps the headaches, I am almost willing to endure side effects to not feel like death warmed over daily.

ssi appointment set pain untollerable

Yup, I finished the paperwork, and guess what, I get to do it ALLOVER again. I have to put it online, I nearly flipped out when she said that and cried, I can't sit to do it, so Chris lovingly volunteered to try to do it for me.

My appointment is for March 18th at 9am.

Today the pain has been beyond control, I know my pressure is way up and if I had insurance, I would have called and asked for a spinal tap as soon as possible, it has been that bad today.

I am so tired of this being sick sucks.

I know God has a plan but its so hard. In the morning we are going to get my CPAP adjusted lets hope I can deal with the change 17 is almost double what I am at now.

for some odd reason the last post wont allow me to edit or type anymore, so I have to finish here, weird

After we get insurance through disability we are to aim for a spinal tap and probably a consult with yet another neurosurgeon to get a ventricular shunt placed where we can control the pressure.
We need a doc that isn't just going to wait til I go blind to do so though. I am tired of being sick all the time and the PTC is having just as strong of an effect on who I am as my leg is....but its been a year since I have been able to walk.

Headaches, Drs, Visits, and Disability OH MY

This morning was very hectic.
Today marked a new milestone, we are OFFICIALLY applying for disability.
I saw a new neurologist this morning. I liked him alot, he was very intelligent and literally seemed to know more about what I am going through than ANY other neurologist I have ever seen before. He didn't act like it was a big deal, and truly seemed concerned.
He is coordinating care with my rehab doctor to get me on disability and to get me insurance through the state. Once that is happening we have lots to do, but hopefully we can get this mess under control and FAST. I am tired of being sick all the time.

He is upping my Topamax from 50mgs a day to 200mgs a day for a month than 400mgs a day in a month.
That is where we can start because I get that from patient assistance.
After that we will aim for a

What a week its been

I know I have not been posting often this month, its been crazy, between school, doctors, errands, and homeschooling and studying and trying to squeeze in family time my schedule has been a bit tight.

Headaches have been bad several days, leg has been giving me grief too, but I am having the occational good day it gives me hope.

one of those is better

Lauren isn't still sick, thank GOD. I was afraid we were going to have to make a trip to the doctors, she has not been since she was 9 months old, she is never sick.

She was complaining about a headache and I was stressed out about her having my headaches, its been almost 20 years and I will not have my child go through what I have been though.

My headaches and back, neck, and leg have been killing me today.

We did get a new computer today. Its helped me be able to study for school, and catch up on stuff I am behind on.

study, rest, clean up after sick child, prop leg, take pain meds, study, rest, help sick child feel better, prop leg, take pain meds, try to take a nap whilst sick child naps...

I am stuck in a loop and its not working well. Lauren had 3 days of not feeling well, she scared me to death having a bad headache for two days, needless to say since my problems revolve around debilitating headaches, I was super stressed out... fortunately today she is feeling much better.

I have been studying and trying to stay off my leg but off my bottom too, sitting and standing are killing me, but laying down isnt any better.

Next step---

Today I saw the rheumatologist.

The pain in my leg has been absolutely unbearable lately, and she encouraged me to apply for disability and ssi as well.

Tomorrow I will call to check on my rehab appointment (and likely make it for next week instead of whenever it was)

After we get the ssi approval and medicaid that goes with it, she wants to send me to pain management since that may help me recover...I am willing to try just about anything.

She did up my muscle relaxant to 3x a day and she did give me 2 more refills. The headaches have been quite bad too, but pain management deals with ALL pain, not just the leg and back.

She told me there is little that Social Security can do to disqualify me since I cant walk or sit or stand without being in lots of pain.

No Insurance sucks

Well, I had my Neurosurgeon follow up today, absolutely nothing going to happen, I come back when I need to if my vision deteriorates or if my doctors say I need to.

He would like me to have gastric bypass, to keep working towards disability and full medicaid for my leg. He did write off my bill for today though.

not a good idea

It is NOT a good idea to stretch your medicines to make them last longer.
I have THREE yes, just 3 muscle relaxant pills left to last until I see my doctor again on Tuesday, then I have to come up with the money to pay for a refill that just takes the edge off the pain, but thats another post.

Since I have been having mega amounts of pain after my classes I had decided I was going to save those last three for my class days because I can't handle those days without them...tonight I will take one, but in the meantime I hurt really bad and may not make it through class in the first place. Had I not skipped the doeses when I wasn't in class, I would be out by now anyhow, so I would still be in this much intense pain.

Hopefully she has answers for me when I get there Tuesday morning.

worn out

I am to the point I am not sure how much more I can take.
Pain, Maximum allotment for lifetime
snow, We, have exceeded my winters allotment of snow and winter is only 1/3 over
Cold, my house says its 73, I don't believe it, its usually set to 65, but I am FREEZING
Nausea, headaches, diziness, Had enough

Altogether I have just plain had enough.
I need disability, I need to not worry if all I do is homeschool Lauren and sleep, right now thats about all the energy I have.

I guess it wasn't meant to be

But God has much wiser plans, Right now, I just wish I knew what they were :-)

In a way I think its good that I didn't get the job, my pain has been completely unbelievable this last week and I am absolutely in shock at how bad its been, I never expected it to make me have trouble sitting for mere minutes or standing that long either. My still time has been limited to less than a half hour without multiple ups and downs and wiggles and the pain is just rediculous.

I am learning lots in school, unfortunately now I doubt I would get a full time job after graduation without some major changes in my health, its been that bad.

In my Biology class I am actually above average, YAY.
In my other classes we havent gotten grades yet.

Next week is the first time to call the attorney about disability, I will talk to my Rheumatologist about it Tuesday.

Outside of pain, life has been busy, Lauren had a playdate with a family from church, I am so grateful for them, this family is going through lots of struggles too and I feel so bad for them, but Gods grace is sufficient for us both. Her mom and I have become good friends and Lauren and Faith are as close as I have ever seen two little girls, its amazing. I love seeing them together.

Chris has an interview today.

And thats where our family stands this week, oh and we may be adding some school curriculum for Lauren, I saw a handwriting program up close and really liked it, so we shall see.

My interview went well

I am still listed as being in the running for the job, I REALLY want this job.

My head has hurt really bad this week, but I think its just been overwhelmed by school.
I am studying hard, but not as hard as Chris, My classes arent as overwhelming, or I dont need to stress over them as much, not quite sure which.

I am excited and happy.

Please pray though, my friends son was hit by a car on Sunday and is in really rough shape he is 5 years old and while he is expected to have a full recovery it will be a long road for him.

Happy Dance

I have an Interview, I have an interview. I have been so stressed out, its cold here and things have been rather dreary....but I am so excited about this interview, I have been trying to get into this company for a long time but the funny part, I don't even know what position I am interviewing for.

I am tired of hurting

The pain has been out of control for too long, I am tired and weak and feel totally drained, and to top it off, today, our furnace went out...praise God we had an extended warranty on the house because it only cost us $50 to get heat again, but waking up to 55 degrees this morning didn't help me much.

Tomorrow I go in and try to get some information on our medicaid coverage, My worker has me very frustrated and I don't know what else to do. Emotionally I can't handle being ignored, its very stressful to me and with all else going on...its just too much.

What? School on a Saturday?

This week has been a bit hectic, not uncommon for us lately. We had things going on Wednesday and Friday, so Lauren did not do real school those two days, she did basic things but we did not sit down and do school.

Well since we homeschool, we are using a calendar to count our days, in Michigan there is no reporting, so I just like to keep track of what we do with a sticker chart for my peace of mind (and I save almost all her work) anyhow, she wanted to put a sticker on her calendar, to do that, she needed to do school, so she did her daily amount of work to earn a sticker and got a Saturday sticker.

I was amazed that she wanted to do school at all most days its like pulling teeth to get her to do what is required let alone offer to do it of her own volition.

It felt good.

I have been feeling really rundown lately and the extra 6 inches of snow in two days isn't helping my aching body at all. My leg has required a hand to help guide it into place too much and the pain is rediculous.
I don't know how much longer I can deal with this, its been hard, but is getting harder by the day.

2013

Thats when my sticker expires, I am hoping to be walking before that, the pain has been rediculous lately and I have contacted an old friend about applying for disability this is beyond rediculous.

Status Permanent

Ok, I don't know whether to laugh or cry, I am both happy and sad at this momentous occasion.

Today I got the paperwork for my newest handicap sticker before the current one expires (we didn't actually pick up the sticker because secretary of state had about a million people inside). My disability is now listed as Permanent Nerve Damage with paralysis.
I will now get a blue sticker, and in June we will likely go for a plate. I feel better knowing that its not going to get better, its kind of a relief, not that it wont improve, but at least now I am not waiting for it to improve, I am adjusting to a new normal and learning how to do things within the scope of my limitations.

I was a bit sad though, since its permanent, I know it may never heal beyond where it is, and all I will be able to do is learn to live with it. I am glad I am seeing a rehab doc since they do help you adjust to the differences. I will now be seeing the neurologist in his office as well, that will help immensely since almost all of my doctors will now be in one place, or at least they will all be sending the referrals and reports to the same place.

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.

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.

I AM ANGRY

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.

Struggles

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.

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.

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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

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.

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.

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.

I AM NOT LIKE YOU

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.

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.

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.

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.

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.

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.

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?

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.
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.

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.

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.

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.

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.

Hushhhhh

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.

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.