Ok, I have had it up past my eyeballs, which I wish were closed right now.
I was having issues with the headaches, but now I am on meds that are supposed to help me sleep...the problem? Well they get caught in my throat as I try to swallow them...we are not talking horse pills either we are talking oh 1mg pills, little itty bitty things.
I am SO frustrated.
My neck and shoulders are killing me too, its like my head is too heavy to sit on my neck...
I am afraid to cry, because while emotionally I am ready to...well, LOL, it hurts worse when I cry. I want to close my eyes and my eyelids hurt...I am so tired of fighting this, I am praying that Chris gets a part time job so that I can get SSI, oh they will pay my medical bills for April when I went to the ER twice, which is SO cool...but I desparately need insurance and to seek another surgeons opinion.
If I get insurance, I will ask Dr. Turner for a referral in October...I will wait that long, I think I can handle the wait...but I will have to mention the swallowing issues, it seems like more and more food is getting stuck too...but Chiari while it has swallowing issues, this almost seems like a gag reflex in overdrive, but maybe I am overthinking things so I don't put myself in a panic noticing yet another symptom related to Chiari, the bladder issues totally freaked me out....Dizziness and headaches I have had for so long they dont worry me, but my arm and leg numbness made sense...I don't need to fear, but at the same time, if its progressing...well, I don't want anything permanent to happen.
Tired, goin to try my meds and get some sleep, have to go to SSA tomorrow to drop off paperwork, then going to Thrift store to get Lauren clothes, I HOPE, then I am going to come home, go drop off paperwork for MI Works, and go grocery shopping, I hope I can stay awake through the hockey game.
Showing posts with label CHIARI. Show all posts
Showing posts with label CHIARI. Show all posts
Friday, June 12, 2009
Sunday, July 20, 2008
What is God trying to tell you????
Many years ago, God showed me that I had a road that he was going to carry me through...at that time I had no real clue just what that meant.
In that time he allowed me or gave me dreams that showed this walk in mostly black and white with very little color or sound, it was like watching old silent movies.
I have been watching these dreams come true since I was 13. I have met people, prayed with people, and watched people renew their faith in Christ through suffering since the walk he was carrying me though was the headaches.
For almost 13 years now, I have known that this battle will end with brain surgery. I had accepted that, especially after I had the PTC diagnosis, since I knew one of its treatments was a Ventricular Shunt.
Many people do not understand how I can accept that God will not just "miraculously" heal me, our faith says otherwise. The bible however does tell us that we must suffer sometimes. James talks about Counting it a joy to be in the midst of a trial, Paul mentions a thorn in his flesh, Job suffered A LOT. Why do we modern Christians seem to think that its a horrible thing to suffer once in a while.
This morning I was sitting in church. I felt absolutely horrible as I have for several weeks now, if I am not in ice cold air conditioning, I feel like my head is just going to explode.
The holy spirit fell like you would NOT believe, I mean, we serve an awesome God but this was just so amazing to experience, and I have been there before, but I and many others at my church REALLY needed that today.
While I was praying I began to beg God yet again. He stopped me mid prayer, and corrected my request, reminded me that I have to walk through this to do his will...I am so curious as to what that is right now. The corrected request was as if he told me, you do not NEED healing, you need strength to get through this, and Remember that Fear is not of God.
I hadn't realized how afraid I truly was of what is coming. When I was diagnosed with the PTC I was ok with brain surgery being the final outcome because a Ventricular shunt while not an easy procedure, for a neurosurgeon its a fairly simple surgery.
With the new diagnosis or Chiari, the chiropractor giving up on me and my leg NOT working right, I kinda freaked out....a decompression surgery that the new neurosurgeon thinks is more necessary than the VP shunt, is a LOT more serious. I told God that I didn't think I was capable of going through that, I think I heard him laugh.
Needless to say, I am no longer afraid, God will be there no matter what it is he chooses to allow me to go through. I need to feel honored that he knows I will hold firm to him no matter what comes my way. He reminded me that he did not give me the details that it would be a "simple" surgery, he never promised it would be easy....he just promised he would be there and take care of me.
The words to the Ray Boltz song, I will praise the Lord have been running rampant in my head since this morning, NO matter what tomorrow brings, I know I will serve the Lord.
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.
Monday, July 14, 2008
So tired
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
The letter that changed my life gave me relief today
This morning I woke up feeling very ill yet again, except this time I was discouraged, I saw the chiropractor on Wednesday, thus far, everytime I had seen him, I left the office with a bit of relief from the headaches...not Wednesday.
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.
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
Thank You Chiarians
After Tuesdays Pitty Party, and actual responses to it, I feel a lot less stressed. Every new diagnosis has literally scared me away from doctors.
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.
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
Chiari Confusion
Yesterday, in the mail, I received a report that was sent to my neurologist from the neurosurgeon he sent me to.
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 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.
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