Sunday, March 30, 2008

Let's Plan A Menu

Ok, I know technically Menu Plan MONDAY isn't til tomorrow, but I really need to work on this.

Tonight we are having Sloppy Joe's and Potato chips
Monday Steak, baked potatoes and Mushrooms and Onions
Tuesday Spicy Shredded Chicken and Corn
Wednesday Polish sausage and Twice Baked Potatoes and a green salad
Thursday Spaghetti and Meatballs
Friday Homemade deep dish pizza
Saturday Mexican shepherds pie, sort of

I have been planning just a few days ahead for a while now and almost always end up going out one or two nights just because things weren't thawed on time or whatnot. This time, I am striving to stay home every night this week and actually COOK the meals.
Tuesday and Thursday are easy meals, both cook all day or most of the day in the crockpot. It helps me immensely to not have to worry about things when I get home from Physical Therapy.

Friday, March 28, 2008

Up E E Down

Thats what my Lauren used to say when she wanted to be picked up. Today I feel its more of the way I feel with pain management. Up and down, round and round. Physical Therapy yesterday was HARD, not bad, but Hard. I really liked her a lot better while we were working through this. I guess I just needed to do something since I hadn't had PT in a week. Boy did she make up for it though, OUCH.

We used a COOL sitting stair stepper that I WANT to get when we can afford the payments, its only $1200, but with my legs, I think its a worthy investment when we can afford it.
Then we did many of the exercises I was used to doing at home, except we did BOTH legs. The parallel bars helped with balance as I practiced all sorts of balancing acts, then we marched in place, Thank goodness she gives breaks.
After we did standing exercises, we did some sitting exercises, those were easy since I had been doing them at home all along, or at least all but one.
Then, back exercise, THOSE HURT the worst, and I felt like I had accomplished the least on them because they were just not getting me anywhere. Needless to say, I was tired and sore when I got home.

I am really excited though as I now know she isn't going to be slow with me and we just might actually see more than a little progress (they will also call the doctor if they don't think I am ready to be done when he does)

Today Lauren decided that it was her day to misbehave ALL day long. It would have to be a bad headache day and my legs are still recouperating from PT, for her to misbehave to that magnitude, of course. And now I think she fell asleep watching Hannah Montana, Gee whiz.
I wish she would have let me take a nap today.

Thank goodness for weekends, I need the time to get through all of this. Tomorrow we get to head out to hunt down some ski's for my walker. Wish me Luck.

Wednesday, March 26, 2008

I need a vacation

Oh my goodness what a week it has been. The sad part? Today is only Wednesday.

Yesterday I had my first visit with the physical therapist in the outpatient clinic, she had no records for me so the whole visit was basically history, I have repeated it so often I could probably do it in my sleep, oh well.
She was nice, but we will see how tomorrow goes when we actually do more than just talk. Ok, I guess that wasn't fair, she did check range of motion, reflexes, pain, and swelling.

Today was a VERY hard day. I got up took Chris to work, I am NOT going to try that again for a VERY long time, my leg does not like working when I am alone. We took a trip up to the old neurosurgeons office to get them to fill out the last of the paperwork for the Lyrica. What should have taken 5 minutes took closer to 90. During that time I walked (remind me not to go on LONG walks with the walker ever again) to the hospitals Diagnostic Imaging Department to get the records Dr. Guthikonda's office wants me to bring on the 7th. Oh my. While there, Code Red, yes a fire alarm went off and I was stuck in the hospital hall ways on my way BACK to the medical building (all connected but still a VERY long walk)

I then got caught by every light along the trip to take Chris some lunch and spend an enjoyable time with him. Now I know why he HATES driving, my goodness. I was shaking so badly by the time we got to his work, we stayed there all but a half hour when I went up two miles to the corner to go to Michael's to pick up something for Lauren to do for the two hours we waited for him to get out. Then we ordered pizza for dinner, when it arrived it was 10 minutes late and they forgot to slice it...I am now ready for bed.

What a day!!! Here's to a better tomorrow.

Monday, March 24, 2008

At what point?

Ok, I am getting really frustrated. Every night or is it morning, I am not sure anymore, between 2:30 and 3:30am I am waking up in excruciating pain.
My neurologist on Friday offered a spinal tap whenever I wanted. At what point do I decide to take him up on that offer.

I am weighing my options. On one hand, a spinal tap will help with the headaches for a little bit (aproximately 4 hours or so) but the back pain has always lasted 3 days. The headaches take about 2 days to come back full force, but I seriously think its just because my back hurts too bad for me to feel the head pain again.
At least I never have to worry about low pressure headaches, though.

Today Lauren gets a very short school day since she is going to help me get all the pop cans out of the way since I keep tripping over them with the walker, then she is going to help me organize the bedroom for the CPAP machine that will be delivered later this week. However she is already fighting with me, so her short two sheet day may turn into a MUCH longer day afterall.

Friday, March 21, 2008

Here we go again

This morning I saw the neurologist, I am happy and scared all at the same time. He is sending me for a second opinion, I see a new doc through University Neurosurgeons on April 7th, that is a FAST appointment, I couldn't even get in as an established patient with my other neurosurgeon that fast.

They are sending me a packet to fill out and bring back, then I have to go pick up CT, MRI and whatnot records to take with me.

Tonight is my 3rd sleep study, the one where we titrate for the CPAP, so I haven't taken my usual nap today, wouldn't be a big deal had I not had that 8:30am appointment with the neurologist this morning, I am SO tired.

I made a mixed CD of my Favorite Praise and Worship music for the car for the drive out, This will be the first time I have driven alone since January.

And what is it with cold and my doctors appointments, I had appointments on Monday and Friday this week, Tuesday and Wednesday were pretty spring days, those two, FREEZING. Lets hope that tonight I am in a warmer room than last time, I don't need to freeze to death again.

Church called to check on me this morning, I feel so important...I have been going there a year this week (minus the time I missed for being sick, and obviously the last 8 weeks post-op) and I really know very few people there, but its still the best church I have found since I moved to SE Michigan 7 years ago.

Thursday, March 20, 2008

I lost 4 Pounds !!!

In just 3 weeks since I have been following the orders of my Pulmonologist I have lost a full 4 pounds. Ok, I have to admit, I thought her suggestions seemed rediculous since it actually meant me eating MORE than I was used to eating, A Lot more.
But, so far, after just adding in a real breakfast, actually EATING lunch, and not taking any seconds on dinner I have actually seen some real success.
Obviously exercise isn't an easy thing to accomplish right now, but I did increase my physical therapy to 3 times per day (I was doing the exercises just twice per day) but those are done in the sitting position, so I didn't think that would really help either.

The doctor is from Russia and her answer was a simple saying they use over there. To quote her directly, "In my country, they say Eat Your Breakfast, Share your Lunch, and Give your dinner to your Enemy" it sounded really funny to me, but she explained that Americans really have our meals backwards, the biggest meal should be breakfast because we have all day to burn it off, then Lunch should be a lighter meal but enough to provide the energy for the afternoon. Dinner should be a small meal because we don't have hardly any time to burn it off, and for the most part we spend that time in front of a tv or computer, so it won't get burned off at all. Oh how accurate that really is.
Unfortunately she also told me how hard change is, and that because its so hard the best thing is to just practice by starting monitoring portions...That was a big challenge to learn when to stop, but I do notice a difference and am happier. We also moved our dinner an hour earlier so we had more time to get those calories used.

Wednesday, March 19, 2008

Angel Food Ministries

Although the last several months I haven't given this much thought, the other day I got the April menu in the mail. Well worth considering if you have one local even if money is not extremely tight.

April's Menu and Specials will give us an abundance of great meals,

For a mere $68 I will be able to provide almost all of the meat I will need for more than a month and all I will need to add are sides.

We will be adding specials 1 and 3 to our basic box this month to restock the freezer.

The quality of the meat we have received in the past has been good (except one package of steaks that were too thin, next time those will be fajitas instead)
Everything else has been pretty good as well. It definitely helps stretch the tight budget quite a ways.

Due dates vary, but most hosts accept money orders, cash or EBT, the due date for the church we use is April 12th since it is not the church we attend (they also take orders on Sunday after church. They are just over a mile away which also helps when the trucks run late (the old place we went was a few miles away and making several runs got really frustrating at times) But you do get a deal and its nice seeing all the people helping others.

Monday, March 17, 2008

Menu Plan Monday

Oh how I need to do this, I am so horrible at actually comitting to my menus so I am giving posting it a try.

All of our meals are simple until I can stand longer than 15 minutes at a time.

Monday Spaghetti and Meatballs, Tossed Salad, and Garlc Toast
Tuesday Going out for Coneys and Chicken Lemon Rice soup
Wednesday Roast Chicken Breasts, Garlicky Green Beans, and Mashed Potatoes
Thursday Burrito Casserole
Friday Going out
Saturday Tater Tot Casserole.

Saturday, March 15, 2008

100th post?

Wow, I never thought I would last this long. Normally I don't stick with something like blogging long enough to hit 30 posts but this is number 100, I am shocked.
I am proud of myself for not quitting.

This blog turned out to be a lot different than I had imagined it when I first started it...I had anticipated writing about what we did for school, what we did for fun, and all of the joys life gives us. Apparently God had other plans though, its been mostly about venting and journaling a very unique journey that I did not, nor would I have planned for.

Tomorrow I am braving the store. DH and I are heading to Meijer in the morning (hoping they have nicely charged amigos first thing in the AM) I will try driving both ways as I need the practice for Friday.

Then on Tuesday I am going to attempt to go out by myself to CVS to pick up some stuff, I am sticking with a VERY small list since I just want to verify that I can drive alone and don't want to go nowhere.

I am actually excited to go to the store tomorrow though, it will only be my 3rd shopping trip with the walker... and the first TRUE grocery shop. I am tired of the bare cupboards forcing us to go out all the time. Its not good on the checkbook either.

Friday, March 14, 2008

We are in Transition

I am a bit nervous, after yesterday I know that my eyes are not that important to the next decisions. After all, my Neurologist looks at my eyes longer than the ophthalmologist did, and he refused to follow the neurosurgeons request to check my fields every 6 months, I am NOT happy with that.

Then this morning I was discharged from nursing, that's a good thing as she was just calling anyhow. Tuesday is my last day of at home physical therapy, then I move on to outpatient...that is where the nerves come in... I have grown very fond of my physical therapist, she came to my house and really helped me get to getting up and moving around. Six weeks ago I could not even stand to go to the bathroom, now, I am moving quite efficiently with the walker I cover the entire downstairs of our house. Hopefully outpatient will get me the ability to get upstairs again.

Overall though, I am really encouraged as this process has really taught me a lot about who I am in Christ and its also helping my family grow to be more unified since I am unable to do things that they used to take advantage of me doing.

Wednesday, March 12, 2008

What a Blessing

Today I realized just how blessed I am to have the medical staff I do.
I was sitting here in tears in immesnse pain this morning before the physical therapist got here, she wanted me to go to the ER, I am so not interested in that right now though, especially since I have so much going on with doctors this next week and perhaps even another appointment on top of that.

My neurologist called me this afternoon because he had just gotten the report from my Pulmonologist about my sleep study, he wanted to make sure that I was following up with that. I nearly cried because he actually CALLED me, he cared enough to call.
Then he mentioned that Dr. Pieper had also sent the report to him and wanted to see me in two weeks (this was news to me) so tomorrow when I am at the Opthamologist office I will be stopping by to see what I need to do about that appointment and I have to talk to his nurse anyhow because she is who has to fill out my paperwork for the Lyrica, that is one EXPENSIVE medicine.

I am just so happy that he cared enough to call and check on me, he didn't have to since I actually have an appointment with him next Friday. God has REALLY really Blessed me this time around.

Friday, March 7, 2008

See-Saw See-Saw Wheeeeee

Thats what my emotions have done this week. Up and down up and down Up and down.

On Wednesday I saw my neurosurgeon, he explained that the nerve damage is do to bruising from them trying to get the shunt tubing in a very cramped space, its small because there is so much scar tissue in the way.
He gave me options, not great ones since he wanted to put me back on the meds that did NOT work the first three times I couldn't even keep them down. He also said we could do serial spinal taps, I honestly wonder if he has ever had one, because that is not my idea of fun.
Then he gave me the option I liked the least, having a VP shunt put in, brain surgery is not my cup of tea right now.
I felt pretty good, he answered all of my questions, but basically said he was not comfortable with the idea of doing the VP shunt right now. I happen to agree, or at least I did til this morning, not I dont know what I want or even need anymore.

Then I proceeded to head to the pulmonologist office, she is absolutely the most amazing doctor I have EVER met in my entire life, and I have met LOTS and LOTS of doctors. She did throw me for a loop at first because she did not realize that I had not gotten the test results yet.
She starts by saying, As you know you have Severe Obstructive Sleep Apnea, Uhm, no I was unaware of that fact, lol.
Then she smiled and said well, you know now. She explained exactly what that meant. She explained that she wanted me to lose some weight, and even took the time to SET a goal with me and tell me how to go about actually LOSING the weight.
Then she talked to me about my breathing and getting winded. It was quite the learning experience. She is having me come back on March 17th for a Comprehensive Pulmonary Function Test, hooray (read all the sarcasm)
I then go back on March 21st for the second sleep study to get my CPAP regulated and ordered, maybe if I can breathe, I will start to feel better all over since I will be able To REALLY rest. I see her again on April 30th, she expects me to have lost 5-10 pounds....I know I can do it, and for the first time ever I feel like I am doing it for me and not to please someone else, God really blessed me with her.

Today, However, I went to see my neurologist...that appointment did NOT go as planned. I don't exactly know what I had planned, but I do know it did NOT happen that way, lol.
He basically asked me what Dr. Pieper had said. I told him what I had been told. He was NOT happy since I have had the symptoms since 1989 and my vision problems I did not even notice when they happened. Not to mention, since I had the Optic Nerve Sheath Fenestration done back in 1999 he said I may Never actually have the vision problems.
I thought that was cool, til he reminded me that if the meds did not work the first 3 tries, they aren't going to work now. He also reminded me that since the pressure was high in December with the shunt in, its just going to get worse without it.
Then he proceeded to remind me that this is no way to live, which I TOTALLY agree with, I am sick and tired of being sick and tired.
So, While he is letting me keep the opthamologist appointment on Thursday, he is thinking that we will probably get a second opinion on the shunt surgery, which means yet ANOTHER neurosurgeon and I am so not liking doctors offices at all anymore.

At least I can tell he cares and he isnt just going to STOP taking care of me when this is all said and done.

I do not know how I feel about all of this. On one hand, brain surgery is terrifying, on the other hand, I am barely functioning right now and basically I NEED to get better for DH and Bug, right now, they are taking care of me, that is not how it should be.

Monday, March 3, 2008

Everything is a Battle

The question that my darling (ok so she wasnt quite so darling while I was yelling at her) daughter got asked today.

She was trying to stay out of my way, since I am not moving well she is getting quite independant, UGH, not what I need.

Today she washed her own hair, using an ENTIRE bottle of shampoo. I had to put her in the shower to get it out, she HATES showers, I can't stand for long periods of time without my walker, and can not move really well, so I am standing there getting wet, trying to rinse out her hair, she is screaming like a mad woman because I am holding her in place with one hand and holding the wall with the other. By the time we finished, I sat down on the toilet and just cried. I held her close and she cried too.

I hate what this has done to her, it makse me so mad that the lawyers don't want to take my case because we do not yet know if this is permanent, but even more so, I hate that I can not take care of my baby. Instead she is taking care of me.

Today during physical therapy she was driving my therapist NUTS. I have often thought about sending her to school while I recover but then I look at it as so much more work.
Without having to go to school she already fights me on getting dressed, doing her work and then I would have to deal with school busses (which is nigh impossible seeing as it takes alot of work for me just to get in and out of the house.
I would also have to deal with the calls from school to deal with her when she misbehaves (which lately seems almost a constant).
I also have to look at the reality, what if this DOES NOT get better. What if I am always going to have some damage left. Then I sent her off to heal and I didnt heal. Then I just send my child away for NOTHING.
I can't do that either.

She may be very challenging, but she is mine, I love her regardless of how much of a monster she can be.