the trip to Mayo Clinic in Jacksonville, Florida was long and exhausting. We arrived in Jacksonville around 2:25am on Monday night. I had to be at Mayo at 6:30am Tuesday. We were there through Thursday afternoon.
I went through three days of appointments and tests (some extremely painful and some that were just annoying). I'll spare you all of the details of the various tests and procedures and just give you a brief run-down on what we know so far from each of the doctors I saw.
- the primary neurologist I saw says he does NOT believe I have neurosarcoidosis. PRAISE THE LORD!!! We didn't get much more information from him because he was the very first doctor we saw on Tuesday and he wanted to review the results from all the tests I was having done and the notes from the other doctors I would see on Tuesday and Wednesday before he gave us any more opinions, etc.
- the pulmonologist (lung doc) says I have some abnormalities around the lining of my lungs, most likely due to damage from asthma and recurring pneumonia. He put me through some lung function tests (one of which was a Methacholine Challenge Test...they gave me methacholine to induce an asthma attack...NOT FUN!!!) which went ok, other than my normal limitations from asthma. He also heard a heart murmur....says this could be nothing....but just to be on the safe side he ordered an echocardiogram for Thursday morning (which is why we had to stay a third day.)
- the neuro-ophthamologist I saw was very concerned about my vision and the damage that my pseudo tumor cerebri has done. Although everything was basically the same as it has been for years, he said that Philip and I were "too cavalier" about it and needed to be more pro-active and aggressive preserving what little vision I have left since my optic nerves have "really taken such a big hit" and are so damaged. He recommends me going to Emory to see my neuro-opthamologist every 3 to 4 months.
All in all, I feel like we got some encouraging news!! I have to go back to Mayo on Monday, December 1st to see my primary neurologist to discuss all of the results and to see where we go from here.
Thanks again for your many prayers and sweet encouraging words!
Love and blessings to you all!
11.22.2008
11.14.2008
23. November 14, 2008
i'm not feeling well today...i've had a really bad headache all morning. i'm also having more and more trouble with my hands...not sure if the cold weather is a factor, but it kind of seems like it.
philip and i will leave late monday night (after drama rehearsal for "I'll Be Home for Christmas") to drive to Jacksonville, Florida for my appointments at Mayo Clinic. My first appointment is 7am Tuesday...i'll have appointments and tests all day tuesday and wednesday. i'm not looking forward to the actual appointments, but am looking forward to the prospect of getting more answers and figuring out where we go from here.
we should be home late wednesday night, unless they (Mayo) decide to keep me longer. i will have access to a computer while i'm there, so i'll keep you all posted on how everything is going.
thanks for your prayers!!! pray for philip to be able to stay awake monday night!!! :)
philip and i will leave late monday night (after drama rehearsal for "I'll Be Home for Christmas") to drive to Jacksonville, Florida for my appointments at Mayo Clinic. My first appointment is 7am Tuesday...i'll have appointments and tests all day tuesday and wednesday. i'm not looking forward to the actual appointments, but am looking forward to the prospect of getting more answers and figuring out where we go from here.
we should be home late wednesday night, unless they (Mayo) decide to keep me longer. i will have access to a computer while i'm there, so i'll keep you all posted on how everything is going.
thanks for your prayers!!! pray for philip to be able to stay awake monday night!!! :)
11.06.2008
22. November 6, 2008
today is Paxton's day for a miracle!!
we just got back from atlanta. we went to see paxton's GI specialist to get the results from his endoscopy & colonoscopy.
1. the colitis that was all through paxton's colon & other parts of his lower GI system when we did these biopsies a year ago....was G-O-N-E!!! the doctor was completely puzzled!!! he kept repeating how it was "everywhere" before (a year ago when we had these same tests) and there were "sheets and sheets" (meaning...a lot) of these colitis cells and that they were even at the "moderate stage" (in between mild and severe)....but that this time there were NONE!!!
HALLELUJAH!! i'm so thankful for a God who hears our cries and answers prayers!! paxton's doctor was not as quick as i was to rejoice...he was a bit more skeptical and did say that "we still have to keep an eye on this, because it could come back"...but i'm clinging tight to the promise that paxton is fearfully and wonderfully made and that God has a plan for paxton's life...a plan to prosper and not to harm him, plans for a hope and a future...
2. the lining of paxton's stomach still looks really bad and has patches of blood all through it. his doctor says this is primarily from acid damage. he wants to keep him on the prevacid and hopes that will eventually help him more.
3. we found out today that paxton is lactose intolerent!! his doctor said his lactose level was significantly low. so....we have to change his diet a bit (paxton is a HUGE milk drinker and eats LOTS of cheese and yogurt) and he has to begin taking lactaid with every meal (1 before the meal, and then another one half way through the meal).
hopefully all of this will go a long way towards getting paxton a lot more comfortable!!
thank you all sooooo much for your prayers, support and encouragement!! we love you!!
we just got back from atlanta. we went to see paxton's GI specialist to get the results from his endoscopy & colonoscopy.
1. the colitis that was all through paxton's colon & other parts of his lower GI system when we did these biopsies a year ago....was G-O-N-E!!! the doctor was completely puzzled!!! he kept repeating how it was "everywhere" before (a year ago when we had these same tests) and there were "sheets and sheets" (meaning...a lot) of these colitis cells and that they were even at the "moderate stage" (in between mild and severe)....but that this time there were NONE!!!
HALLELUJAH!! i'm so thankful for a God who hears our cries and answers prayers!! paxton's doctor was not as quick as i was to rejoice...he was a bit more skeptical and did say that "we still have to keep an eye on this, because it could come back"...but i'm clinging tight to the promise that paxton is fearfully and wonderfully made and that God has a plan for paxton's life...a plan to prosper and not to harm him, plans for a hope and a future...
2. the lining of paxton's stomach still looks really bad and has patches of blood all through it. his doctor says this is primarily from acid damage. he wants to keep him on the prevacid and hopes that will eventually help him more.
3. we found out today that paxton is lactose intolerent!! his doctor said his lactose level was significantly low. so....we have to change his diet a bit (paxton is a HUGE milk drinker and eats LOTS of cheese and yogurt) and he has to begin taking lactaid with every meal (1 before the meal, and then another one half way through the meal).
hopefully all of this will go a long way towards getting paxton a lot more comfortable!!
thank you all sooooo much for your prayers, support and encouragement!! we love you!!
10.30.2008
21. October 30, 2008
we got a call from Paxton's specialist in Atlanta. His nurse told me that "everything looks good" he just wants us to go back up to Atlanta to "discuss Paxton's biopsies further." We're going next Thursday, November 6th.
Micah had to make another trip to the ER yesterday (he went to the ER during the night a week or two ago because of a bad case of bronchitis.). I was enjoying a field trip with one of my classes at the River Center (Scrap Arts Music...it was really cool!! my 5th & 6th graders LOVED it!!) when I got a call from Philip. The school called him after not being able to get in touch with me (due to the field trip). Philip let me know that Micah had fallen and cut his chin in the school bathroom and they were on their way to the ER.
Ended up not being a very traumatic ordeal at all, praise the Lord! Micah never cried at school when he got hurt, and was so strong and brave at the hospital!! Not only did he not cry (not even as the doctor stuck a q-tip of betadine in the cut to clean it out), but he was cheerfully talking and entertaining the doctor who was working on him. :)
They were able to use liquid stitches - or as Micah called it - SUPER GLUE! Then they placed some white strips over that to keep it tight and secure - to which Micah responded, "this is like DUCK TAPE!" And finally, a large band-aid over all of that. So Micah tells everyone that the hospital fixed his boo-boo with super glue and duck tape!! :) If I had known it was that easy...I would've saved several hundred dollars and done it at home!! :)
I'm battling a severe headache today...one of the worst I've had in a while...and I've had it since yesterday afternoon. Praying it goes away soon!!
Hopefully we can stay out of the ER for at least another week.....
Micah had to make another trip to the ER yesterday (he went to the ER during the night a week or two ago because of a bad case of bronchitis.). I was enjoying a field trip with one of my classes at the River Center (Scrap Arts Music...it was really cool!! my 5th & 6th graders LOVED it!!) when I got a call from Philip. The school called him after not being able to get in touch with me (due to the field trip). Philip let me know that Micah had fallen and cut his chin in the school bathroom and they were on their way to the ER.
Ended up not being a very traumatic ordeal at all, praise the Lord! Micah never cried at school when he got hurt, and was so strong and brave at the hospital!! Not only did he not cry (not even as the doctor stuck a q-tip of betadine in the cut to clean it out), but he was cheerfully talking and entertaining the doctor who was working on him. :)
They were able to use liquid stitches - or as Micah called it - SUPER GLUE! Then they placed some white strips over that to keep it tight and secure - to which Micah responded, "this is like DUCK TAPE!" And finally, a large band-aid over all of that. So Micah tells everyone that the hospital fixed his boo-boo with super glue and duck tape!! :) If I had known it was that easy...I would've saved several hundred dollars and done it at home!! :)
I'm battling a severe headache today...one of the worst I've had in a while...and I've had it since yesterday afternoon. Praying it goes away soon!!
Hopefully we can stay out of the ER for at least another week.....
10.24.2008
20. Friday, October 24, 2008
Paxton's tests went well on Wednesday, though the preps Sunday through Tuesday were extremely difficult on him and made him really sick. His doctor says we should have all of the biopsies back sometime next week. Thank you so much for all of your prayers!!! He's feeling MUCH better!!
I'm doing ok. Just taking it one day at a time! I'm anxiously awaiting our trip to Mayo Clinic in a few weeks. I'll keep you all posted on any changes!
I'm doing ok. Just taking it one day at a time! I'm anxiously awaiting our trip to Mayo Clinic in a few weeks. I'll keep you all posted on any changes!
10.14.2008
19. Tuesday, October 14, 2008
just a quick update....
paxton will have his endoscopy & colonoscopy next wednesday. please remember him in your prayers next week. he'll have some challenging days sunday, monday and tuesday in preparation for wednesday and will really need the strength of the Lord!!
philip and i are still planning our trip to jacksonville for my appointments at mayo clinic in november. i'm nervous, but excited about having a fresh, new team of doctors looking at my case.
on an exciting note....paxton had a really incredible experience last week. many of you know that paxton is a huge NASCAR fan....specifically a big Jimmie Johnson fan!! he got to go to a fan club breakfast in charlotte last thursday. they asked him to come early to be interviewed for a FOX news station there in charlotte. (here is a link where you can watch the segment... http://www.myfoxcharlotte.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7621609&version=1&locale=EN-US) when we arrived, kendra (a great friend we made in charlotte) met us in the parking lot with more good news!! paxton got to unveil Jimmie Johnson's 2009 car, which hadn't been seen by anyone (other that Jimmie and his people, of course!). paxton was beyond excited!! after being on tv, he was able to watch a pit crew practice. the guys were great to paxton. Greg Morin (Hendrick Motorsports Pit Crew Trainer) invited paxton to come over the fence with the guys. they let him change a tire...and then put him inside the practice car while they did a pit stop!! Greg let paxton keep three lugnuts from the tire he changed, and Mike Lingerfelt (Jimmie Johnson's front tire changer) gave paxton his gloves to keep. :) paxton was also able to meet Jimmie, take his picture with him and get a few things autographed. it was an incredible experience...one i'm sure he'll never forget!!! i have posted some pictures online at: http://www.facebook.com/album.php?aid=57044&l=c7c1f&id=606151192
p.s. i have to thank my friend, cindi mixon, for driving paxton and i to charlotte (philip had a conference to go to for work), videoing everything throughout the day, and for having fun with us!! :) cindi...you're awesome!!
paxton will have his endoscopy & colonoscopy next wednesday. please remember him in your prayers next week. he'll have some challenging days sunday, monday and tuesday in preparation for wednesday and will really need the strength of the Lord!!
philip and i are still planning our trip to jacksonville for my appointments at mayo clinic in november. i'm nervous, but excited about having a fresh, new team of doctors looking at my case.
on an exciting note....paxton had a really incredible experience last week. many of you know that paxton is a huge NASCAR fan....specifically a big Jimmie Johnson fan!! he got to go to a fan club breakfast in charlotte last thursday. they asked him to come early to be interviewed for a FOX news station there in charlotte. (here is a link where you can watch the segment... http://www.myfoxcharlotte.com/myfox/MyFox/pages/sidebar_video.jsp?contentId=7621609&version=1&locale=EN-US) when we arrived, kendra (a great friend we made in charlotte) met us in the parking lot with more good news!! paxton got to unveil Jimmie Johnson's 2009 car, which hadn't been seen by anyone (other that Jimmie and his people, of course!). paxton was beyond excited!! after being on tv, he was able to watch a pit crew practice. the guys were great to paxton. Greg Morin (Hendrick Motorsports Pit Crew Trainer) invited paxton to come over the fence with the guys. they let him change a tire...and then put him inside the practice car while they did a pit stop!! Greg let paxton keep three lugnuts from the tire he changed, and Mike Lingerfelt (Jimmie Johnson's front tire changer) gave paxton his gloves to keep. :) paxton was also able to meet Jimmie, take his picture with him and get a few things autographed. it was an incredible experience...one i'm sure he'll never forget!!! i have posted some pictures online at: http://www.facebook.com/album.php?aid=57044&l=c7c1f&id=606151192
p.s. i have to thank my friend, cindi mixon, for driving paxton and i to charlotte (philip had a conference to go to for work), videoing everything throughout the day, and for having fun with us!! :) cindi...you're awesome!!
9.30.2008
18. September 30, 2008
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!!
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!!
9.23.2008
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!
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