More Changes

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

Worlds fastest new appointment

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

yippee, I get a new doctor

A physiatrist, can't you see my excitement.

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

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

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

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

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

Rough weeks suck

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

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

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

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

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

Today was the LAST time I will take Lauren with me

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

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

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

The big day is upon us

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

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

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

prayers please

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

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

Since I can't say this outloud...

I have to say it here, but

Monday Can't come fast enough

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

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

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

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

Weather just may be part of the culprit afterall

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

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

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

Pain pain go away

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

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

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

Hopefully Monday we will get some answers.

Almost caught up

Oh my has it been a hectic last few days.

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

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

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

I need SLEEP

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

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

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

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

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

Sorta Good day?

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

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

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

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

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

Today was Orientataion and...

Tomorrow there is lots to do.

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

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

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

Another Day Another Doctors Appointment

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

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

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

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

God is So Good

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

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

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

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

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

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

Editing the purpose of this blog and begining a new one

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

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

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

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

Depression, Confustion, Frustration, Fear

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

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

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

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

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

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

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

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

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

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

I overdid it

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

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

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

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

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

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

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

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

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

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

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