Thursday, July 31, 2008
Tomorrow is the 6 month anniversary of my shunt removal, that means, if they were right, any nerve damage I have left may very well be permanent damage.
Saturday I have an MRI to see if its orthopedic or neurological that my knee is still not working, today it scared me the most in a long time, it locked and actually gave out and I fell, fortunately, We have too much furniture and I just fell into the love seat...I had made it less than 3 steps from where I started.
Chris called at lunch, he hates his job, I hate his job because he hates it. I feel bad for him, he has to work til I can work full time and support our family. I am hoping that my August 18th appointment will shed some light as to when that will be a reality.
He is so stressed by every little thing that I don't see a different job being any help to him though.
My emotions have been all over the place, and I mean seriously ALL over the place. I have cried, screamed, contemplated calling the shrink they sent to me in the hospital, its been that bad. I am upset at every little thing now. My head hurts even more with the meds I am on to control the headaches, I don't think there is much more frustrating than to discover that while one area of headaches improved two others got significantly worse.
Lauren and I painted some butterflies, dragonflies, and flowers today that were made out of wood from Michael's for her room. She was very excited and they turned out cute. I was hoping making them with her would help me feel better, but it didn't work that way.
Well I think I am going to take a nap while Lauren plays on here, hopefully I will feel better later.
Monday, July 28, 2008
We will be doing some school today and resting. I have to make a few phone calls today and will probably try unpacking one box between rest times.
Saturday, July 26, 2008
It was a very busy day that started off on the WRONG foot altogether. I am glad God gives us grace and works through our stupidity though.
We woke up crabby, and fought pretty much til about 6:15 in the morning on our trip into town, not a good start to the day.
Chris was temperamental and broke my dustpan and I was yelling because no one was listening at all, just not a good morning, but stuff still needed to be done.
We got into town, slowed things down and felt a bit better.
We dropped Chris off to work, went to Meijer to fill the gas tank, I don't remember when the last time we spent so little to fill the car was, we had a $10 coupon to use on Gas because I filled my script, and gas prices have gone down quite a bit as well. We paid a mere 3.69 a gallon.
After that, we went in to the store and mailed off a couple of bills.
Then headed off to WalMart to get an oil change...we walked around the store for about an hour, stopping to sit at all open benches. About 45 minutes in I realized how much pain I was in, my knee started buckling over and over again, we were done.
We got the car, went outside and sat for about 20 minutes, then went back in to get the groceries, you see we had a whole day to waste being in town. These trips are very hard on Lauren since we don't really have anywhere to go between stops.
We got the groceries, didn't take more than probably another 10-15 minutes then we headed to the bank, deposited the check, its in WalMart too, but they don't open til 10, see why we had to waste time?
Went across to Aldi's bought the rest of our staples then off to lunch with Chris, then to K-Mart to cancel our layaway. I had planned on paying it off, but money is just too tight right now for that kind of spending.
Then we went and sat in the parking lot waiting for Chris to get off work. We took a nap because we still had two hours and Lauren and I were both exhausted.
I need to be much more careful about how much I use my knee, and remember when it hurts I NEED to rest, I am wondering if I caused more damage because I am always go go going on it til it hurts.
Back to town today to get the last of our stuff (I am sure we will be making a few more trips, but not sure when, so long as they are before September 15th)
Thursday, July 24, 2008
Yesterday I finalized my registration for school. As of August 11th, I will once again be a College Student, granted I am going through a technical school, but still, the ball is now rolling.
I did change programs but not to the one I was hoping for. Because my leg has not fully healed yet, and there are no real guarantees that is will, the admissions counselor would not let me do the pharmacy tech program, but we also didn't feel MA was the best choice either so we switched to Medical Administration and Billing.
Wish me luck. I am hoping to be able to return to work within 12 months or so. This would give me an office style job which would be good with my bad leg as well as the rest of the health problems I have.
I started the 120mg Inderal LA last night, I am not sure how much it helped, but we will give it some time. I didn't wake up every hour, but that could have been sheer exhaustion, after all I was up from 5am til midnight...working towards being able to stay up til 12 daily is REALLY hard. I have been going to bed at 9 or earlier for the last 6 months because I was up at least 6 times per night, I still wake up often, but not as bad. Last night I got 4 1/2straight hours of sleep before I woke up, then I took a nap at about 8am. We will get it straight eventually. I hope.
Tuesday, July 22, 2008
We have only lived here two weeks and I have already discovered that I do not care for the stray kids from across the street. They keep picking at Lauren for not being allowed to leave the yard without an adult, and constantly doing things that we don't allow.
I am teaching her to resist temptation and not disobey no matter what, but its so hard on her when our rules are alot more strict than theirs...how do you explain that to a 6 year old?
These kids have no real rules, you can tell by the way they act and that you never see the parents out at all (they live right across the street) and we are very strict because I do not believe that a 6 year old needs to run rampant without supervision.
Call me old fashioned, but I would rather know where my kid is and what they are doing than not.
I am scheduled for another annoying MRI on Saturday August 2nd. This time for my knee. He also scheduled a 3 phase bone scan to check for stress fractures that is August 12th and an all day procedure, yuck. I return to see him on August 26th.
I got so emotional in the office trying to explain how hard it is to not be able to function as a normal human being. I never realized it would be so hard when I told him...I didn't even realize how much it bothered me.
Sunday, July 20, 2008
In that time he allowed me or gave me dreams that showed this walk in mostly black and white with very little color or sound, it was like watching old silent movies.
I have been watching these dreams come true since I was 13. I have met people, prayed with people, and watched people renew their faith in Christ through suffering since the walk he was carrying me though was the headaches.
For almost 13 years now, I have known that this battle will end with brain surgery. I had accepted that, especially after I had the PTC diagnosis, since I knew one of its treatments was a Ventricular Shunt.
Many people do not understand how I can accept that God will not just "miraculously" heal me, our faith says otherwise. The bible however does tell us that we must suffer sometimes. James talks about Counting it a joy to be in the midst of a trial, Paul mentions a thorn in his flesh, Job suffered A LOT. Why do we modern Christians seem to think that its a horrible thing to suffer once in a while.
This morning I was sitting in church. I felt absolutely horrible as I have for several weeks now, if I am not in ice cold air conditioning, I feel like my head is just going to explode.
The holy spirit fell like you would NOT believe, I mean, we serve an awesome God but this was just so amazing to experience, and I have been there before, but I and many others at my church REALLY needed that today.
While I was praying I began to beg God yet again. He stopped me mid prayer, and corrected my request, reminded me that I have to walk through this to do his will...I am so curious as to what that is right now. The corrected request was as if he told me, you do not NEED healing, you need strength to get through this, and Remember that Fear is not of God.
I hadn't realized how afraid I truly was of what is coming. When I was diagnosed with the PTC I was ok with brain surgery being the final outcome because a Ventricular shunt while not an easy procedure, for a neurosurgeon its a fairly simple surgery.
With the new diagnosis or Chiari, the chiropractor giving up on me and my leg NOT working right, I kinda freaked out....a decompression surgery that the new neurosurgeon thinks is more necessary than the VP shunt, is a LOT more serious. I told God that I didn't think I was capable of going through that, I think I heard him laugh.
Needless to say, I am no longer afraid, God will be there no matter what it is he chooses to allow me to go through. I need to feel honored that he knows I will hold firm to him no matter what comes my way. He reminded me that he did not give me the details that it would be a "simple" surgery, he never promised it would be easy....he just promised he would be there and take care of me.
The words to the Ray Boltz song, I will praise the Lord have been running rampant in my head since this morning, NO matter what tomorrow brings, I know I will serve the Lord.
Friday, July 18, 2008
This morning the chiropractor basically told me that I was not improving like he expected, and that there is something holding my lower back out of whack, he has been stretching me since May, we had rapid improvement at first, but over the last 3 weeks or so, it has almost stopped completely, today I actually left the office feeling worse than when I came in...I am wondering if its not all connected somehow, since the headaches and back return to extreme pain within hours or less of leaving his office. I decided to hold off any more appointments with him for a month, Chris thinks two weeks would probably be better though, we shall see. He did suggest either decompression (a different kind of stretching for the back) or an inversion table to stretch it, both options are VERY costly though.
I actually feel stressed because of all the pain, its getting to the point where I have trouble sitting or standing for any length of time, and the headaches are stretching into my neck, shoulders and the shooting pains in my leg get worse if I don't keep it at just the right angle....I guess I have a lot of questions to ask the Orthopedist, then the neurosurgeon next month....getting progressively sicker is not my idea of fun though
Tuesday, July 15, 2008
Yesterday homeschooling was reaffirmed an a very real way for me. We do not homeschool specifically for religious reasons or academic reasons but mostly to limit the bad influences of children who seem to think that rules are not meant to be followed and their respective mouths.
We met a few kids that live directly across the street, AHHH, I am going to have to be doing a LOT of supervising...I know its my job, and I am not upset by it, but these are older kids and I am not sure how excited I am....
They go home everytime they see me watching so far, but I am not going to let my 6 year old play unsupervised. Today she got in trouble for being behind the neighbors house, she does not belong that far away, and they went off upset because she was told she couldn't play over there.
This is not their house they were playing behind, but the one on the other side of the empty lot to our North. I don't need the neighbors getting upset with us this soon after we moved in, just because they aren't behaving.
Monday, July 14, 2008
Today has been busy, I saw the neurologist this morning....he upped my inderal to see if the other headaches respond or not.
Basically he isn't so positive that these are or were PTC headaches but we are pretty sure I was also having migraines since the inderal controlled the left sided headaches, not the right and the back of the head and neck ones have been much much worse.
I go back again in 5 weeks to see how the increased dose of inderal works and after I have seen the Neuroopthamologist and the Neurosurgeon again. I will also be having my reports from my knee sent to him as well since he I told him about the orthopedist appointment that's next week.
My itinerary to get through the next appointments
- Chiropractor 1-2x per week
- July 22, Orthopedic Surgeon for Knee
- July 30, Pulmonologist for Sleep Apnea
- August 4, Neuro-Opthamologist for PTC-Chiari optic nerve damage check
- August 18, Neurosurgeon Follow up
- August 22, Neurology follow up
School, Monday, Wednesday and Thursdays starting August 11
I think I am going to need a vacation.
Friday, July 11, 2008
Well, this morning, I took the letter in to him to see what he thought, fortunately he has other chiari patients and he was able to do a different kind of neck adjustment, I had about 2 hours worth of relief from the headache, it didn't go away, but it was MUCH better. The great part though, was turning my head without feeling like I was going to throw up. WOW, what a difference.
It lasted several hours before my neck and shoulders started to hurt again. Any relief at this point is wonderful, I will be asking my neurologist what another part of the report meant since I see him on Monday. Here is hoping he can shed a little light for me.
Next, I am hoping to get some answers on the swollen, twitchy foot, as well as the uncooperative knee. That appointment is 2 weeks away.
Thursday, July 10, 2008
Its funny, 10 years ago, it was "just" Pseudotumor Cerebri
7 years ago, I got the LP shunt put in, helped the headaches for about 4 years
2 years ago now, the headaches came back with a vengance, the dizziness, balance issues, pain in the back and neck, coordination problems (I always had these, so I just thought I was a klutz) and brain malfunctions (friends even noticed that I was having trouble) There are many more issues, but they weren't life altering all at once.
In February, when I went in to have my shunt replaced because of the pressure being up....I had a heart attack and was diagnosed with Sleep Apnea
I had a second opinion on my shunt in April after the surgeon that couldn't get it in the second time blew off the issues...
In May, I was blessed with a diagnosis of Chiari, and people wonder why I don't like doctors.
Now, after reading a lot of blogs and links to other people who actually have this massive mess of a....hmmm? Is it really a disease since its actually a malformation? Anyhow, reading the stories of others was really encouraging. While I am still really emotional, I am tired of not feeling good, but at least now I know why.
I am realizing that not only are these all connected, but they could potentially be made better. When the headaches started 19 years ago, I never expected them to go away, when I had the shunt put in, it was 4 years of heaven, but it would be so nice to lose the rest of the issues as well.
I am so greatful that God is in control and not me, I am sure I would mangle his plan especially since for the first time in ages, I was not prepared for what he has going on....those dreams helped immensely, it relieved the fears.
This is new territory not knowing whats going on.
I guess I need to end this, I keep losing my train of thought. Have a good night, and to those out there who suffer from PTC or Chiari, or both, learning you aren't alone is probably the biggest thing to help you get through this.
Wednesday, July 9, 2008
I sat down and cried, while he told me about the chiari, I didn't realize he thinks its the main cause of my problems and not the PTC.
I read and re-read the report. I am a complicated case and he feels I will probably end up needing the Posterior Fossa Decompression.
So, I went and looked up a side by side comparison of the symptoms of the two different diseases. Ugh, he is likely right, from the get go, at least a few years ago when the original shunt was put in, this has likely been more Chiari than PTC.
See the symptoms are VERY similar, unfortunately, the only one the shunt really relieved was the headaches. I still had a good portion of the symptoms that I had just figured were a side effect from all of the meds I was on to keep the pressure in check, or the result of the stress of getting sick. Those things were all livable until the headaches came back.
The Chiari though, has a few that are not direct PTC symptoms, and those are actually the ones I was having the biggest issue with over the last two years.
Aside from the headaches, I had had numerous times where I needed to hold a wall to walk across a room from dizziness and I have had the worst brain fog in a LONG time, I screw up even simple thoughts now, sometimes having to say them 3-4 times before I get it out right. I have also had numerous issues with hearing troubles, those are not ptc but rather Chiari issues.
God will really need to give me some serious strength for me to get through all of this this time around.
I like this area MUCH better than where we were, although I hear traffic on the main road behind us, the neighborhood is really nice and the people seem a lot different than where we were before.
Ironically the main road behind us is a state Highway and we only have traffic during before work hours and after work, not much during the day or evening at all.
A 5 mile trip in town took us more than 20 minutes, now it takes about 6...its so different.
Today we are heading into town with Chris, I have a chiropractor appointment this morning and then we are going to go do laundry and check on lots of little things while we are out, I am hoping to get some more kitchen stuff out here to the new house then hopefully Friday we can get a little more then be just about done.
Friday, July 4, 2008
Today I just wanted to wish My darling Husband a very Happy Birthday.
He gets to share it with our nation, and always gets Fireworks for his birthday, how cool.
Anyhow, we are just going out to lunch and we will be packing the rest of the day. Tomorrow is the big move day.
Thursday, July 3, 2008
Yesterday I got lots accomplished but most of it was on the phone, at least it got done. I did get my cane yesterday as well, its nice not needing the walker just to get from here to there.
Today I plan on packing up a box or two, collecting pop cans to go back to the store and picking up papers and laundry. I also think I am going to pack up the remaining groceries in my pantry and get them ready to go to the new house. Tonight we are having spaghetti and Meatballs, hopefully that will kill off my bag of meatballs.
Saturday, I will be at the new house most of the day since I have to be there at noon for the phone to be installed, I will be leaving here at 11am, hopefully the truck will be leaving about the same time since it should be loaded then or close to it.
Since we are not taking everything, some stuff just doesn't need to come, we don't use it now and I have learned a lot of what we REALLY need this year, so we are leaving a dresser behind, whoever gets the house can have it, its a nice one, but really too big for our needs. We will likely purchase Lauren a VERY small one for her room after we get settled in though.
So all thats left to go, 2 sets of pantry shelves, one will go in my kitchen (that one holds my appliances, my microwave, my gravity water filter, and my pots and pans)The other set will go in the computer room closet to make that closet a bit more useful.
We have two desks, two dressers, two toy chests, two beds, two air conditioners, the loveseat and couch, two night stands, the kitchen table, chest freezer, two entertainment centers (my sister will be at some point taking the one to her new house)and our fish tank stand, that may one day hold an actual fish tank, lol.
Wow I just realized we have LOTS of pairs of stuff. Most make sense because they are for Lauren and us, but the two toy chests sound really weird. One was Chris's when he was little, that will actually function as a blanket box in the livingroom, we keep our house set really cool during the winter and like to just grab a blanket and cuddle rather than turning up the heat, the other is one of these, the big bins hold books and the smaller bins hold lincoln logs, play food, art stuff, puzzles, cars and small things that would be ALL over the house without them.
I think it will all be moved fairly easily and quickly in just two trips since we are renting a UHaul trailer for two days to take care of it as well. $60 that will save us probably close to $200 in moving costs or more, money well spent. Since the car will just be taking the shelves and groceries, and the slip covers for the couch and loveseat, we will be loading those things on Friday night...It feels good to have a plan in place especially since my next post will be coming from the other house.
Tuesday, July 1, 2008
It was amazing to see it all finished.
We started off with a chiropractor appointment, then a trip to the new house where we got our cable and internet, they will be installing the phone at a later time, I will be calling them this afternoon to check on the when.
After that, I stopped at the post office, got our keys for the mailbox, then off to Secretary of State to get our tabs for the car, phew, I was exhausted, so we stopped to visit the inlaws before we headed home since they live right there.
Today is supposed to be a LOT less busy, my big thing today will be cleaning and packing, packing and cleaning.
I am taking it off in bites, since I can't work straight through without getting sick....I am working for 5 minutes at a time, you would be suprised how much you can get done in JUST 5 minutes.