we took paxton to his GI specialist in atlanta yesterday. they're going to schedule another endoscopy & colonoscopy (to be done at the same time so he won't have to be put to sleep twice). :( many of you will remember us telling you how incredibly difficult this test was on paxton last year when he had it done (august 2007). i'm upset that he is having to go through this again, but the doctor did tell us last year that the only way to really monitor changes would be to periodically do these tests. since paxton is still having trouble, he feels it is necessary to take another look. if there are any changes, even subtle changes, he wants to go ahead and start treating Paxton for chrons/colitis. please keep him in your prayers. paxton is a little upset and worried about having to do these tests again, but is being such a trooper about it!! please also continue to pray for his total healing.
the ENT that i saw at emory last week about my ear called today. he told me that he's "not really sure" what to do with my "situation." at first i was a little taken back hearing the chairman of ENT at Emory tell me that he wasn't sure how to handle my "situation." but then it kind of turned to relief. i'd much rather a doctor be honest and say they aren't sure about something than to act like they know what they're doing and experiment on me. it's not only a complicated matter with my ear, but adding all of my neurological "stuff" on top of it causes my case to be a little more difficult.
i had already scheduled an appointment to go to Mayo Clinic in Jacksonville, Florida in November for all of the neurological problems I'm dealing with. I called this afternoon and made them aware of the situation with my ear and they've added ENT to my rotation of visits during my two day stay there. If we're driving all that way, we might as well go ahead and let them see the whole big picture and get their opinion on what's going on!!
still no word from my insurance company regarding the PET scan that my neurologist is wanting to do (to scan for neurosarcoidosis)...I tried calling Friday and no one has returned my call. :/
i'll keep you all posted....thanks so much for your continued prayers!!
i'm blessed indeed!!
9.30.2008
9.23.2008
17. Tuesday, September 23, 2008
i'm completely worn out...physically and mentally.
we took micah to the doctor on sunday after running high fever and coughing all weekend. turns out in addition to some type of upper respiratory infection, he has pink eye...in BOTH eyes. with his four prescriptions a day....he's feeling a lot better, but is still not himself. he's still running a little fever and is still coughing...a LOT!! needless to say, i had to reschedule his eye doctor appointment that was previously scheduled for today. he'll now go on october 15th.
paxton came home from school today with one of his fingers really swollen and turning many different shades of white, blue, purple and black. apparently during recess, he and some friends from his class were playing football....the football was thrown to him and hit him right at the knuckle of his ring finger on his left hand. he said it hurt some...but he still insisted on playing in his soccer game at 6:00pm tonight. soooo, we buddy-taped it and let him play. (his team won 9-1...and he scored one of those goals!!!) after the game we took the tape off and looked at it again...it looked a lot worse. so we ended up in the doctor's office....he fractured it!!! he'll be in a splint for about 4 to 6 weeks. :( by the time we got back home tonight, it was hurting a lot worse. the splint is really uncomfortable...but at least it's his left hand (he's right handed...except for swinging a baseball bat and golf club...which he won't be doing over the next 4 to 6 weeks!).
sometimes it really just seems like too much. but then i'm quickly reminded...while i don't necessarily deserve any of this...i definitely don't deserve any better than this. jesus suffered much worse than all that i'm going through...and He did it for me...He loves me that much! i'm also reminded of Job and the many trials he faced...mine pale in comparison. God is good. He is faithful to those who are faithful to Him. He loves me, Paxton, Micah and Philip...He knows right where we are. He will not leave us nor forsake us...He hasn't forgotten us and He will bring us out of all of this...in His timing.
we took micah to the doctor on sunday after running high fever and coughing all weekend. turns out in addition to some type of upper respiratory infection, he has pink eye...in BOTH eyes. with his four prescriptions a day....he's feeling a lot better, but is still not himself. he's still running a little fever and is still coughing...a LOT!! needless to say, i had to reschedule his eye doctor appointment that was previously scheduled for today. he'll now go on october 15th.
paxton came home from school today with one of his fingers really swollen and turning many different shades of white, blue, purple and black. apparently during recess, he and some friends from his class were playing football....the football was thrown to him and hit him right at the knuckle of his ring finger on his left hand. he said it hurt some...but he still insisted on playing in his soccer game at 6:00pm tonight. soooo, we buddy-taped it and let him play. (his team won 9-1...and he scored one of those goals!!!) after the game we took the tape off and looked at it again...it looked a lot worse. so we ended up in the doctor's office....he fractured it!!! he'll be in a splint for about 4 to 6 weeks. :( by the time we got back home tonight, it was hurting a lot worse. the splint is really uncomfortable...but at least it's his left hand (he's right handed...except for swinging a baseball bat and golf club...which he won't be doing over the next 4 to 6 weeks!).
sometimes it really just seems like too much. but then i'm quickly reminded...while i don't necessarily deserve any of this...i definitely don't deserve any better than this. jesus suffered much worse than all that i'm going through...and He did it for me...He loves me that much! i'm also reminded of Job and the many trials he faced...mine pale in comparison. God is good. He is faithful to those who are faithful to Him. He loves me, Paxton, Micah and Philip...He knows right where we are. He will not leave us nor forsake us...He hasn't forgotten us and He will bring us out of all of this...in His timing.
9.19.2008
16. Friday, September 19, 2008.....edited 9/20/08
....i'm exhausted....this has been a long, eventful week.
on tuesday afternoon, philip and i traveled up to emory in atlanta. it was a pretty "simple" visit...didn't have to see any doctors...i just had to have an MRI. it wasn't fun, but was not a big deal either.
on wednesday morning, we traveled back up to emory to see the chairman of the ENT department about my ear.
here is what we know so far:
- i have an aneurysm in my jugular vein and it has worn down the bone in my right ear.
- i have an abonormally large sinus cavity outside my right ear.
the doctor mentioned surgery, but wants to wait until he has some CT scans from a different angle....all he had was a view through the top of my head...he wants to see the jugular vein and my ear from a side view of my neck. he says the surgery is extremely risky...they would go in through my head (just above my right ear) and clip the aneurysm, shave out the sinus cavity to make it smaller and try to build up the bone in my ear to make it thicker. there may be more involved depending on what the other CT scans show. either way, he kept stressing the severe risks involved in this surgery. philip and i will really need a lot of guidance and wisdom to make the right choice.
my hearing loss was great enough that he is recommending i get a mini hearing aid for my right ear. unfortunately, these cost anywhere from $1500 - $3000 and insurance won't cover a penny of it!!
i'm supposed to call my doctor at the end of next week after he's had time to review my other CT's and see where we're going from here.
** all of this is completely unrelated to the neurological problems i'm having (the pseudo tumor cerebri) ** on that note...we're STILL waiting on the insurance to approve the PET scan that my neurologist is wanting to do. :/
also...paxton's asthma has been a lot worse this fall. his asthma specialist just changed his inhalers, so hopefully he'll get better results. he is also struggling a lot with stomach pain (last year they told us he was possibly in the early stages of chron's). he has to go back to atlanta next monday (september 29th) to see his specialist there. he's very worried that by telling the doctor he's hurting a lot, they'll put him through the painful, invasive tests that they put him through a year ago. :( please keep him in your prayers!!
and...micah is going to the eye doctor this tuesday (september 23rd...which is also mine and philip's 13 year anniversary!!). his right eye seems to cross in at times and he complains often of his eye hurting. his asthma has also flared up a little more this fall as well. he's using the nebulizer (or as he calls it, "breathing machine") each day. right now i think he may actually be coming down with something....his eyes were really red tonight and he kept complaining about his throat hurting. :( please keep my little micah in your prayers as well!!
thanks so much for your continual prayers and encouragement!! i'm so blessed to have you all in my life! i love you all!
on tuesday afternoon, philip and i traveled up to emory in atlanta. it was a pretty "simple" visit...didn't have to see any doctors...i just had to have an MRI. it wasn't fun, but was not a big deal either.
on wednesday morning, we traveled back up to emory to see the chairman of the ENT department about my ear.
here is what we know so far:
- i have an aneurysm in my jugular vein and it has worn down the bone in my right ear.
- i have an abonormally large sinus cavity outside my right ear.
the doctor mentioned surgery, but wants to wait until he has some CT scans from a different angle....all he had was a view through the top of my head...he wants to see the jugular vein and my ear from a side view of my neck. he says the surgery is extremely risky...they would go in through my head (just above my right ear) and clip the aneurysm, shave out the sinus cavity to make it smaller and try to build up the bone in my ear to make it thicker. there may be more involved depending on what the other CT scans show. either way, he kept stressing the severe risks involved in this surgery. philip and i will really need a lot of guidance and wisdom to make the right choice.
my hearing loss was great enough that he is recommending i get a mini hearing aid for my right ear. unfortunately, these cost anywhere from $1500 - $3000 and insurance won't cover a penny of it!!
i'm supposed to call my doctor at the end of next week after he's had time to review my other CT's and see where we're going from here.
** all of this is completely unrelated to the neurological problems i'm having (the pseudo tumor cerebri) ** on that note...we're STILL waiting on the insurance to approve the PET scan that my neurologist is wanting to do. :/
also...paxton's asthma has been a lot worse this fall. his asthma specialist just changed his inhalers, so hopefully he'll get better results. he is also struggling a lot with stomach pain (last year they told us he was possibly in the early stages of chron's). he has to go back to atlanta next monday (september 29th) to see his specialist there. he's very worried that by telling the doctor he's hurting a lot, they'll put him through the painful, invasive tests that they put him through a year ago. :( please keep him in your prayers!!
and...micah is going to the eye doctor this tuesday (september 23rd...which is also mine and philip's 13 year anniversary!!). his right eye seems to cross in at times and he complains often of his eye hurting. his asthma has also flared up a little more this fall as well. he's using the nebulizer (or as he calls it, "breathing machine") each day. right now i think he may actually be coming down with something....his eyes were really red tonight and he kept complaining about his throat hurting. :( please keep my little micah in your prayers as well!!
thanks so much for your continual prayers and encouragement!! i'm so blessed to have you all in my life! i love you all!
9.04.2008
15. Thursday, September 4, 2008
i went to emory today to see my neuro-opthamalogist and my neurologist.
* my eyes are stable - PRAISE THE LORD!!! my doc said everything was pretty much the same since she saw me last (july 2007)....no changes....yay!!!
* my neurologist is doubling my diamox dosage (diamox is the medicine i take for the pseudo tumor cerebri...it makes me feel really bad, and causes my hands and feet to hurt a lot!). i'm not very excited about this, but it seems to be necessary, so i'll do it...and i'll cling to the fact that god is giving me supernatural strength to face each day....and each day that passes means i'm one day closer to the day he will heal my body completely. :) hallelujah!!!
* concerning the possible neurosarcoidosis...my neurologist received the letter from the insurance company today saying they need some more information from him before they will approve the PET scan he wants to do. he'll send in what they asked for and wait for a response.
* my doctor also needs me to have my potassium levels checked (because of the medication i'm on) and may need to start prescribing potassium supplements.
* i'm going back to emory on tuesday, september 16th for another MRI :/
* then i'll go back to emory on wednesday, september 17th to see an ENT that my neurologist referred me to about the situation with my ear (my jugular vein is going through my middle ear...causing LOTS of pain and hearing loss)
* these two new appointments are in addition to the many other appointments the boys and I have that i mentioned in the post from august 26th. philip and i are both feeling pretty overwhelmed right now with medical stuff!! i really appreciate your prayers.
i received a really sweet card today from someone in our church. it touched me and blessed me far more than she'll ever know. she said i was an inspiration to her. i have to say...i've never, ever in a million years thought i could be an inspiration to anyone else. please know, it is not by my own strength that i get up each day...it is the strength God gives me (new every morning) that enables me to do all that i'm doing. it is the joy of the Lord that enables me to keep a smile on my face. it is remembering who He is and all that He has done for me that enables me to praise Him so freely. i'm so thankful to God!! He's richly blessed me in so many ways...and i've never deserved any of it!!
i can't say this enough: thank you all for your prayers, your hugs, and the sweet words of encouragement that you are pouring out over me. i'm so blessed to have each of you in my life!!! i love you all and will continue to keep you posted!
god bless!
* my eyes are stable - PRAISE THE LORD!!! my doc said everything was pretty much the same since she saw me last (july 2007)....no changes....yay!!!
* my neurologist is doubling my diamox dosage (diamox is the medicine i take for the pseudo tumor cerebri...it makes me feel really bad, and causes my hands and feet to hurt a lot!). i'm not very excited about this, but it seems to be necessary, so i'll do it...and i'll cling to the fact that god is giving me supernatural strength to face each day....and each day that passes means i'm one day closer to the day he will heal my body completely. :) hallelujah!!!
* concerning the possible neurosarcoidosis...my neurologist received the letter from the insurance company today saying they need some more information from him before they will approve the PET scan he wants to do. he'll send in what they asked for and wait for a response.
* my doctor also needs me to have my potassium levels checked (because of the medication i'm on) and may need to start prescribing potassium supplements.
* i'm going back to emory on tuesday, september 16th for another MRI :/
* then i'll go back to emory on wednesday, september 17th to see an ENT that my neurologist referred me to about the situation with my ear (my jugular vein is going through my middle ear...causing LOTS of pain and hearing loss)
* these two new appointments are in addition to the many other appointments the boys and I have that i mentioned in the post from august 26th. philip and i are both feeling pretty overwhelmed right now with medical stuff!! i really appreciate your prayers.
i received a really sweet card today from someone in our church. it touched me and blessed me far more than she'll ever know. she said i was an inspiration to her. i have to say...i've never, ever in a million years thought i could be an inspiration to anyone else. please know, it is not by my own strength that i get up each day...it is the strength God gives me (new every morning) that enables me to do all that i'm doing. it is the joy of the Lord that enables me to keep a smile on my face. it is remembering who He is and all that He has done for me that enables me to praise Him so freely. i'm so thankful to God!! He's richly blessed me in so many ways...and i've never deserved any of it!!
i can't say this enough: thank you all for your prayers, your hugs, and the sweet words of encouragement that you are pouring out over me. i'm so blessed to have each of you in my life!!! i love you all and will continue to keep you posted!
god bless!
9.01.2008
14. Monday, September 1, 2008
it's monday....it's raining...praise the lord...i get to spend the day with my boys...that makes me very happy!! :)
i'm feeling ok so far today. yesterday was a pretty good day. we had GREAT services at church yesterday. i'm so thankful for my church family...the love and support and prayers they offer up for me are almost overwhelming! i feel so loved.
i'm still in a lot of pain every day...mostly my head, my neck, my hands and my feet. Yesterday morning while on the platform, my entire left leg felt like it was asleep...it was hurting so bad, yet at the same time felt like it was completely numb...it was a strange feeling.
with that being said...i'm actually feeling somewhat better! :) the medicine that i was on had really bad cognitive (mind) effects. my neurologist referred to it as "the stupid drug." it really affected my short term memory and my overall thought process....it truly did make me feel stupid (yes...even more stupid than normal!!). i really didn't like the way it made me feel. the medicine he switched me too (diamox) has basically the same painful, physical side effects, but doesn't affect me cognitively the way the other one did. hallelujah!!! :)
i go back to emory on thursday...i'll keep you guys posted!!
thanks for you prayers! god bless you all!
and happy labor day! :)
i'm feeling ok so far today. yesterday was a pretty good day. we had GREAT services at church yesterday. i'm so thankful for my church family...the love and support and prayers they offer up for me are almost overwhelming! i feel so loved.
i'm still in a lot of pain every day...mostly my head, my neck, my hands and my feet. Yesterday morning while on the platform, my entire left leg felt like it was asleep...it was hurting so bad, yet at the same time felt like it was completely numb...it was a strange feeling.
with that being said...i'm actually feeling somewhat better! :) the medicine that i was on had really bad cognitive (mind) effects. my neurologist referred to it as "the stupid drug." it really affected my short term memory and my overall thought process....it truly did make me feel stupid (yes...even more stupid than normal!!). i really didn't like the way it made me feel. the medicine he switched me too (diamox) has basically the same painful, physical side effects, but doesn't affect me cognitively the way the other one did. hallelujah!!! :)
i go back to emory on thursday...i'll keep you guys posted!!
thanks for you prayers! god bless you all!
and happy labor day! :)
8.26.2008
13. Tuesday, August 26, 2008
health insurance...
i'm really, really frustrated with my health insurance (which we get through MCSD - Philip's employer - chosen by the state of georgia)!
we're STILL waiting on them to approve the PET scan that my doctor wants me to have done.
they (the insurance company) also decided that the medicine my neurologist switched me to (diamox) is "not a preferred prescription"....meaning they won't cover it. :(
next week i go back to emory for TWO different doctor appointments, the next week paxton and micah both have appointments with their asthma specialist...the next week micah has an appointment with the eye doctor because of problems he's having with his eyes....and later that week, i have another doctor's appointment...and the next week paxton has an appointment with his GI specialist in atlanta!!
it's so tempting sometimes to just say, "NO MORE DOCTORS, NO MORE PRESCRIPTIONS!" ultimately i know that God is my healer...he is the great physician. however, i also know that often times he works through "earthly physicians." i'm praying DAILY for total healing (for my illnesses and for my boys')...i know it will come...in his timing. until then, i need to stay on the course that all of my doctor's have put me on, stay focused on the lord and hold on to the faith and hope that he gives me. (and try to have patience with the stinkin' insurance company!!!)
:)
i'm really, really frustrated with my health insurance (which we get through MCSD - Philip's employer - chosen by the state of georgia)!
we're STILL waiting on them to approve the PET scan that my doctor wants me to have done.
they (the insurance company) also decided that the medicine my neurologist switched me to (diamox) is "not a preferred prescription"....meaning they won't cover it. :(
next week i go back to emory for TWO different doctor appointments, the next week paxton and micah both have appointments with their asthma specialist...the next week micah has an appointment with the eye doctor because of problems he's having with his eyes....and later that week, i have another doctor's appointment...and the next week paxton has an appointment with his GI specialist in atlanta!!
it's so tempting sometimes to just say, "NO MORE DOCTORS, NO MORE PRESCRIPTIONS!" ultimately i know that God is my healer...he is the great physician. however, i also know that often times he works through "earthly physicians." i'm praying DAILY for total healing (for my illnesses and for my boys')...i know it will come...in his timing. until then, i need to stay on the course that all of my doctor's have put me on, stay focused on the lord and hold on to the faith and hope that he gives me. (and try to have patience with the stinkin' insurance company!!!)
:)
8.24.2008
12. Sunday, August 24, 2008
no real updates...
i haven't felt very good the past few days. my headaches have been MUCH worse the past couple of days...my neurologist mentioned this might happen though. he referred to it as a "rebound headache" from taking me off one medication and putting me on another. i guess it can affect the spinal fluid and the pressure in my brain coming on and off the meds like that. the headache i've experienced since yesterday feels very similar to the headaches i get whenever i have a spinal tap. :(
like i said...no real updates until i go back to emory next thursday.
thanks again for your prayers!
- michelle
i haven't felt very good the past few days. my headaches have been MUCH worse the past couple of days...my neurologist mentioned this might happen though. he referred to it as a "rebound headache" from taking me off one medication and putting me on another. i guess it can affect the spinal fluid and the pressure in my brain coming on and off the meds like that. the headache i've experienced since yesterday feels very similar to the headaches i get whenever i have a spinal tap. :(
like i said...no real updates until i go back to emory next thursday.
thanks again for your prayers!
- michelle
8.20.2008
11. Wednesday, August 20, 2008
all in all today was a pretty good day. although i was still in a lot of pain (esp. my head, neck, hands and feet)....definitely more pain than i'd like to be in...today was overall the best i've felt all week. praise the lord! :)
i got a letter from my insurance company today regarding the PET scan that my doctor is wanting to do (to scan for neurosarcoidosis). the insurance company "needs more information"....health history (that'll be a "few" pages), doctor's notes, etc....in other words....more delays. it's hard not to get frustrated...i really am trying to be patient...i'm just ready for answers.
i will be heading back to emory in 2 weeks (on september 4th) for a previously scheduled follow up appointment with my neurologist and an appointment with my neuro-opthamologist (to make sure there hasn't been further damage to my eyes).
until then....i wait.
i got a letter from my insurance company today regarding the PET scan that my doctor is wanting to do (to scan for neurosarcoidosis). the insurance company "needs more information"....health history (that'll be a "few" pages), doctor's notes, etc....in other words....more delays. it's hard not to get frustrated...i really am trying to be patient...i'm just ready for answers.
i will be heading back to emory in 2 weeks (on september 4th) for a previously scheduled follow up appointment with my neurologist and an appointment with my neuro-opthamologist (to make sure there hasn't been further damage to my eyes).
until then....i wait.
8.18.2008
10. Monday, August 18, 2008
"pain"
sometimes it's really hard being in so much pain. other times, if i can just keep going and stay busy, i can sometimes distract my mind somewhat from the intense headaches, the burning pain radiating down my neck, the needle-like pain piercing the heels of my feet, the overall throbbing pain in my hands, and the pain and dysfunction in my ear.
this past sunday was really difficult. i had been in more pain than normal all weekend, but had not let it slow me down...i didn't really have time to let it slow me down....but i felt the effects on sunday!
when the alarm went off sunday morning, philip patted my arm. i opened my eyes and tears immediately came. i told him, "i'm hurting so bad and i haven't even moved yet, much less stood up." philip said i should just stay home and stay in bed all day and rest. i didn't have to think twice before i responded, "nope! not gonna do it!"
as hard as it was to go on with my day, i knew that it was what i needed to do. first of all, i long for our church services...i want to be there....i need to be there. [Lord, empty me of me so I can be filled with more of You!]
second, i refuse to allow this illness to make me weak. i will not surrender. i will not lie down in defeat. if i stay home to rest one day, it will become easier and easier to do it everyday.
god gives me strength...new every morning to get out of bed. he is giving me strength throughout each and every day to accomplish many things that i shouldn't have the strength to do. he is with me and is sustaining me.
with that being said, i am in a tremendous amount of pain. please continue to keep me in your prayers. i have peace and joy...my hope endures...my faith is strong...God is good!
sometimes it's really hard being in so much pain. other times, if i can just keep going and stay busy, i can sometimes distract my mind somewhat from the intense headaches, the burning pain radiating down my neck, the needle-like pain piercing the heels of my feet, the overall throbbing pain in my hands, and the pain and dysfunction in my ear.
this past sunday was really difficult. i had been in more pain than normal all weekend, but had not let it slow me down...i didn't really have time to let it slow me down....but i felt the effects on sunday!
when the alarm went off sunday morning, philip patted my arm. i opened my eyes and tears immediately came. i told him, "i'm hurting so bad and i haven't even moved yet, much less stood up." philip said i should just stay home and stay in bed all day and rest. i didn't have to think twice before i responded, "nope! not gonna do it!"
as hard as it was to go on with my day, i knew that it was what i needed to do. first of all, i long for our church services...i want to be there....i need to be there. [Lord, empty me of me so I can be filled with more of You!]
second, i refuse to allow this illness to make me weak. i will not surrender. i will not lie down in defeat. if i stay home to rest one day, it will become easier and easier to do it everyday.
god gives me strength...new every morning to get out of bed. he is giving me strength throughout each and every day to accomplish many things that i shouldn't have the strength to do. he is with me and is sustaining me.
with that being said, i am in a tremendous amount of pain. please continue to keep me in your prayers. i have peace and joy...my hope endures...my faith is strong...God is good!
8.15.2008
9. Friday, August 15, 2008
"new post...latest health update..."
ok....try to follow me...i'm going to give a "full run down" of where we stand and what we know so far....
- pseudo tumor cerebri...my spinal fluid leaks and causes increased pressure in my brain (this is also what caused my vision loss in 2003). Right now we're managing it with strong medication (with very painful side effects). I'm going back to emory on September 4th to see my neurologist for a check-up and I will also see my neuro-opthamologist that same day to make sure there haven't been any changes with my eyes.
- blood clots...my last blog mentioned concern about possible blood clots in my brain. PRAISE THE LORD the CT scan of my brain revealed i do NOT have any blood clots in my brain!! my neurologist said that i have very small veins in my brain which can slow blood flow (and may even be the cause of my pseudo tumor cerebri), but NO BLOOD CLOTS!!! HALLELUJAH!
- neurosarcoidosis...it is a form of lupus and apparently is very serious. i need several very expensive tests to diagnose this disease, but we are waiting on my insurance company to approve them before we proceed. soooo....we still don't know much here....
- my ear...many of you have heard me complain about my right ear for the past several years. i have a "whooshing" noise that is almost constant. it drives me insane. my doctors have gone back and forth as to whether or not they thought it was related to the pseudo tumor cerebri. Then just recently, I've had some hearing loss in my right ear. well...my neurologist from emory called and said he spoted something unusual on my ct scan of my brain related to my EAR! Long story short - he says my right jugular vein is "riding high and wearing down on the bone" and is running THROUGH my middle ear!! he says it looks very painful!!! (IT IS!!!) he is referring me to the chairman of the ENT department of Emory to see what can be done. crazy!!!
these are the only updates we have right now.
as far as how i'm feeling...most of the time...pretty rotten. some days are better than others....some times are better than others. mornings and late in the day are hardest for me.
i spoke with my neurologist yesterday and he is changing my medicine (taking me off the topamax and putting me back on diamoxx). probably won't affect how i feel too much...the side effects are very similar for both of the medicines....but hopefully it will help my headaches by relieving the pressure from the spinal fluid.
i will continue to keep you all posted. thank you so much for your faithful prayers! they mean so much to me! god bless!
ok....try to follow me...i'm going to give a "full run down" of where we stand and what we know so far....
- pseudo tumor cerebri...my spinal fluid leaks and causes increased pressure in my brain (this is also what caused my vision loss in 2003). Right now we're managing it with strong medication (with very painful side effects). I'm going back to emory on September 4th to see my neurologist for a check-up and I will also see my neuro-opthamologist that same day to make sure there haven't been any changes with my eyes.
- blood clots...my last blog mentioned concern about possible blood clots in my brain. PRAISE THE LORD the CT scan of my brain revealed i do NOT have any blood clots in my brain!! my neurologist said that i have very small veins in my brain which can slow blood flow (and may even be the cause of my pseudo tumor cerebri), but NO BLOOD CLOTS!!! HALLELUJAH!
- neurosarcoidosis...it is a form of lupus and apparently is very serious. i need several very expensive tests to diagnose this disease, but we are waiting on my insurance company to approve them before we proceed. soooo....we still don't know much here....
- my ear...many of you have heard me complain about my right ear for the past several years. i have a "whooshing" noise that is almost constant. it drives me insane. my doctors have gone back and forth as to whether or not they thought it was related to the pseudo tumor cerebri. Then just recently, I've had some hearing loss in my right ear. well...my neurologist from emory called and said he spoted something unusual on my ct scan of my brain related to my EAR! Long story short - he says my right jugular vein is "riding high and wearing down on the bone" and is running THROUGH my middle ear!! he says it looks very painful!!! (IT IS!!!) he is referring me to the chairman of the ENT department of Emory to see what can be done. crazy!!!
these are the only updates we have right now.
as far as how i'm feeling...most of the time...pretty rotten. some days are better than others....some times are better than others. mornings and late in the day are hardest for me.
i spoke with my neurologist yesterday and he is changing my medicine (taking me off the topamax and putting me back on diamoxx). probably won't affect how i feel too much...the side effects are very similar for both of the medicines....but hopefully it will help my headaches by relieving the pressure from the spinal fluid.
i will continue to keep you all posted. thank you so much for your faithful prayers! they mean so much to me! god bless!
8. Thursday, July 17, 2008
"health update...."
my neurologist from emory called me last week. i have to go back for more tests. he is now specifically looking for neurosarcoidosis (similar to lupus, but affecting my brain). he says it's very serious. unfortuntately we're waiting on "red tape" from the insurance company before we can proceed with the needed testing. this is in addition to the pseudo tumor cerebri that he is currently treating me for.
my doctor is also concerned that i may have some blood clots in the veins of my brain. i'm going back to emory this friday to scan for that.
i'm in a lot of pain. if you see me, i more than likely will have a smile on my face...although i don't always feel like smiling, it is not a forced or "fake"smile....it is the joy of the Lord....He is my strength and the song in my heart.
thanks for all of your prayers!!!
my neurologist from emory called me last week. i have to go back for more tests. he is now specifically looking for neurosarcoidosis (similar to lupus, but affecting my brain). he says it's very serious. unfortuntately we're waiting on "red tape" from the insurance company before we can proceed with the needed testing. this is in addition to the pseudo tumor cerebri that he is currently treating me for.
my doctor is also concerned that i may have some blood clots in the veins of my brain. i'm going back to emory this friday to scan for that.
i'm in a lot of pain. if you see me, i more than likely will have a smile on my face...although i don't always feel like smiling, it is not a forced or "fake"smile....it is the joy of the Lord....He is my strength and the song in my heart.
thanks for all of your prayers!!!
7. Friday, June 20, 2008
My neurologist from Emory called me this afternoon to tell me that there were some abnormalities with the spinal fluid that he collected when he did the spinal tap on me this past Monday.I have to go back to Emory and have several more tests to confirm whether or not I have Sarcoidosis.....and auto immune disease that is in the same family as Lupus.Please pray for me! I'm naturally a little concerned, but ultimately comforted knowing that I have friends like you lifting me up. I know God has a plan for my life...Jeremiah 29:11 reminds me: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
I'm also still battling a severe headache from the spinal tap. I have to go back to the hospital on Monday to have a Blood patch to close up the hole that the spinal tap left in my spinal column. Hopefully that will help the pain!!! I'll keep you all posted!! Thanks so much for all of your prayers and many words of encouragement!
6. Thursday, June 19, 2008
"prayer...and MORE prayer..."
ok, prayer warriors! I need you once again!
I had to go back to Emory this past Monday (June 16th, 2008) to see the neurologist. He talked me in to doing another spinal tap (this was my EIGHTH) and although I strongly protested it, I'm glad I let him do it. The spinal tap showed the pressure in my brain was elevated again. What this means is the illness I had 4 years ago when I was pregnant with Micah has flared back up. It is called psuedo tumor cerebri and basically means spinal fluid is leaking and causing high pressure in my brain. This illness is what caused my vision loss in 2003. So now I'm back to making lots of trips to Emory....I already have 3 more appointments scheduled in the next 3 months for various tests and visits with the neurologist and my neuro-opthomalogist. That's a LOT of traveling...and a LOT of GAS MONEY!!! :/
Anyway....the good news is they've caught it early this time, so they should be able to get it under control with medication and I should not have any additional vision loss.
Bad news is, the medication that I will be on has a lot of really bad side affects. Lots of people with this illness are on permanent disability solely due to the side effects of this medication.
So.....I am first and foremost praying for TOTAL HEALING from this illness. I know that God can and will heal me....with that being said, I also know that it will be in HIS TIMING, not my own. In the meantime, I'm praying that the medication will not be as difficult to deal with as it has been in the past.
I appreciate all of you joining me in prayer!
On a side note...I have a praise!! In March of 2000 I had malignant melanoma (a very serious type of skin cancer) on my back. Since then, I have to go every 6 months for "cancer checks." Last week I had two spots that the doctor thought looked suspicious, so he cut them off and had them biopsied. I got a call from him yesterday letting me know they were NORMAL! YAY!!! I actually had a medical test that came back NORMAL!!! Praise the Lord! :)
ok, prayer warriors! I need you once again!
I had to go back to Emory this past Monday (June 16th, 2008) to see the neurologist. He talked me in to doing another spinal tap (this was my EIGHTH) and although I strongly protested it, I'm glad I let him do it. The spinal tap showed the pressure in my brain was elevated again. What this means is the illness I had 4 years ago when I was pregnant with Micah has flared back up. It is called psuedo tumor cerebri and basically means spinal fluid is leaking and causing high pressure in my brain. This illness is what caused my vision loss in 2003. So now I'm back to making lots of trips to Emory....I already have 3 more appointments scheduled in the next 3 months for various tests and visits with the neurologist and my neuro-opthomalogist. That's a LOT of traveling...and a LOT of GAS MONEY!!! :/
Anyway....the good news is they've caught it early this time, so they should be able to get it under control with medication and I should not have any additional vision loss.
Bad news is, the medication that I will be on has a lot of really bad side affects. Lots of people with this illness are on permanent disability solely due to the side effects of this medication.
So.....I am first and foremost praying for TOTAL HEALING from this illness. I know that God can and will heal me....with that being said, I also know that it will be in HIS TIMING, not my own. In the meantime, I'm praying that the medication will not be as difficult to deal with as it has been in the past.
I appreciate all of you joining me in prayer!
On a side note...I have a praise!! In March of 2000 I had malignant melanoma (a very serious type of skin cancer) on my back. Since then, I have to go every 6 months for "cancer checks." Last week I had two spots that the doctor thought looked suspicious, so he cut them off and had them biopsied. I got a call from him yesterday letting me know they were NORMAL! YAY!!! I actually had a medical test that came back NORMAL!!! Praise the Lord! :)
5. Monday, December 31, 2007
"my eyes are filled with tears..."
My "baby" boy, Micah, turned FOUR YEARS OLD today.
My "baby" boy, Micah, turned FOUR YEARS OLD today.
I can't help thinking about where I was four years ago. Not just "at the hospital"....that's kind of a given! :) But what I was feeling and thinking....how terrified I was because of all of the complications and all of the problems I was having throughout the pregnancy. We weren't sure if Micah and I would make it to that point....to the point of delivery...and yet on December 31, 2003 we were there...at the Medical Center being told that they were taking Micah....almost four weeks earlier than planned....but Micah was ready!
I was told halfway through my pregnancy that I would have to have a c-section because of all the turmoil going on within my body (specifically with my brain and spinal cord). With no "sugar coating" I was bluntly told that giving birth could cause the already elevated pressure in my brain to increase even more and cause me to have a stroke.
I was so relieved, excited, anxious and amazed that I was there at the hospital, about to have Micah...that we had both actually made it to that point. Yet I was terrified at what the ultimate outcome would be.
The next thing I remember is waking up (a few hours after Micah was born) and seeing this beautiful, healthy 7 pound, 13 oz. little miracle lying in my arms. We were both living and breathing......and instantly I had peace. Although I was still concerned about my health (and my vision) and knew that I had a long road ahead of me...I knew I was in God's hands, just as Micah was being held in mine!
As I sit and type this, many, many friends...prayer warriors...come to mind. You all know who you are and I thank God everytime I think of you! Thank you for your many prayers! How blessed I am to have such faithful, loving, and caring friends!
God is so good. Both of my boys are miracles (because of other health issues I have, I was told at a very young age that I would probably never have children of my own...and God gave me TWO amazing sons!!!) He has richly blessed me....far beyond measure....far more than I deserve....far more than I could ever repay Him....I am blessed, indeed.
4. Monday, September 17, 2007
"no more than we can handle..."
I just finished reading Jeremia 29:11-14a:
11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD, "and will bring you back from captivity.
You have no idea how tightly I am clinging to that scripture right now. God promises to never put on us any more than we can handle....I'm keeping hold of that promise and keeping my eyes on Him!
God is constant. Family and friends may come and go, but He is always there...sustaining me, holding me, loving me, forgiving me, cleansing me, healing me and showing me mercy and grace even though I don't come close to deserving it. He loves me....despite myself, He loves me....the real me....just as I am.
I just finished reading Jeremia 29:11-14a:
11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD, "and will bring you back from captivity.
You have no idea how tightly I am clinging to that scripture right now. God promises to never put on us any more than we can handle....I'm keeping hold of that promise and keeping my eyes on Him!
God is constant. Family and friends may come and go, but He is always there...sustaining me, holding me, loving me, forgiving me, cleansing me, healing me and showing me mercy and grace even though I don't come close to deserving it. He loves me....despite myself, He loves me....the real me....just as I am.
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