so sorry for not updating sooner....
...but PRAISE THE LORD!! i did NOT have to have the needle biopsy!! :) YAY!! when i got to the office, my doc did an ultrasound himself and said that he "wasn't as impressed as the radiologist" regarding my cysts. when scheduling my biopsy and giving me the report of the last ultrasound, he was reporting based on what the radiologist's report said. the radiologist expressed concern about a "complex cyst"...my doc said he disagreed. not sure who is right (which is kind of scary) but he agreed there was enough concern to keep an eye on it....so we'll do another ultrasound in 6 months and take it from there. all in all....i was just happy to escape without the needle in my neck!! :)
i had an MRI yesterday on my shoulder....going to the doc this thursday for the results. :)
blessings to you all!!
3.15.2009
2.20.2009
27. February 20, 2009
Just wanted to give a quick update....
I think the meds I'm on for the Lupus and Raynaud's phenomenon are helping...some...my days vary a great deal, but I do seem to be having a few more good days than bad days!! :) Hopefully once I get through the winter, the Raynaud's won't be aggravated quite so much...WARM WEATHER, COME QUICKLY!!! (never thought I'd hear myself say that!!)
I do have a few "bumps in the road" that have come up recently......
I have quite possibly torn my rotator cuff...I've been going to physical therapy for several weeks now, but instead of my shoulder getting better, it has only gotten worse. I will probably have an MRI in the next week or two to find out for sure. My shoulder has bothered me for MONTHS...but honestly, with all the pain I deal with...I just kind of "put it in a box" with all the other pain and tried to just deal with it and keep going. My rheumatologist (Lupus doc) got on to me and insisted I go to physical therapy for my shoulder and my knees because during an exam he could feel the inflammation and both feel AND HEAR my bones crunching and popping in my knees and in my shoulder. He didn't agree with my philosophy of "I already hurt so much anyway...what's a few more areas of pain!!" =) His opinion was, "you have enough pain to deal with, why not take care of the pain that you can easily treat?!!" Anyway....we'll see where it goes from here.....
A few weeks ago my endocrinologist (doctor I see about my thyroid...I have hypothyroidism...a common complication from Lupus) wanted to do a repeat ultrasound on my thyroid (a year or two ago he did an ultrasound and found several cysts...said they were all small, the same size...nothing to worry about). I went back today for the results of the ultrasound that was done a couple of weeks ago. I have a large nodule on my thyroid...large enough that it has made the whole left side of my thyroid larger than the right side of my thyroid. This was a "significant change" from my last ultrasound. I will go in a couple of weeks for a needle biopsy. It will take 4 to 6 weeks for the results to come back. (crazy...you can pee on a stick and find out if there is life inside of you in 90 seconds....but have to wait 6 weeks to find out if you have cancer!!) My doc said that honestly, we'll probably end up having to take my thyroid out whether it is cancer or not.....the nodule is large and with me having a history of cancer (malignant melanoma on my upper back in 2000 - melanoma has the highest rate of reoccurring / matastisizing somewhere else in your body)...sooo its better to be safe.
Just want to keep you all in the loop so you know specifically how to pray!! :) I am OK!!! Honestly...if you're reading this...please do not be worried about "how I'm handling all of this." I'M NOT.....but My Father is....there is NOTHING too big for Him...that is my hope that endures all things....I will not be shaken, but will stand firm in His Word and in His promises to take care of me!! I do greatly appreciate your prayers!! They encourage me more than you know!! I love you all!!
I think the meds I'm on for the Lupus and Raynaud's phenomenon are helping...some...my days vary a great deal, but I do seem to be having a few more good days than bad days!! :) Hopefully once I get through the winter, the Raynaud's won't be aggravated quite so much...WARM WEATHER, COME QUICKLY!!! (never thought I'd hear myself say that!!)
I do have a few "bumps in the road" that have come up recently......
I have quite possibly torn my rotator cuff...I've been going to physical therapy for several weeks now, but instead of my shoulder getting better, it has only gotten worse. I will probably have an MRI in the next week or two to find out for sure. My shoulder has bothered me for MONTHS...but honestly, with all the pain I deal with...I just kind of "put it in a box" with all the other pain and tried to just deal with it and keep going. My rheumatologist (Lupus doc) got on to me and insisted I go to physical therapy for my shoulder and my knees because during an exam he could feel the inflammation and both feel AND HEAR my bones crunching and popping in my knees and in my shoulder. He didn't agree with my philosophy of "I already hurt so much anyway...what's a few more areas of pain!!" =) His opinion was, "you have enough pain to deal with, why not take care of the pain that you can easily treat?!!" Anyway....we'll see where it goes from here.....
A few weeks ago my endocrinologist (doctor I see about my thyroid...I have hypothyroidism...a common complication from Lupus) wanted to do a repeat ultrasound on my thyroid (a year or two ago he did an ultrasound and found several cysts...said they were all small, the same size...nothing to worry about). I went back today for the results of the ultrasound that was done a couple of weeks ago. I have a large nodule on my thyroid...large enough that it has made the whole left side of my thyroid larger than the right side of my thyroid. This was a "significant change" from my last ultrasound. I will go in a couple of weeks for a needle biopsy. It will take 4 to 6 weeks for the results to come back. (crazy...you can pee on a stick and find out if there is life inside of you in 90 seconds....but have to wait 6 weeks to find out if you have cancer!!) My doc said that honestly, we'll probably end up having to take my thyroid out whether it is cancer or not.....the nodule is large and with me having a history of cancer (malignant melanoma on my upper back in 2000 - melanoma has the highest rate of reoccurring / matastisizing somewhere else in your body)...sooo its better to be safe.
Just want to keep you all in the loop so you know specifically how to pray!! :) I am OK!!! Honestly...if you're reading this...please do not be worried about "how I'm handling all of this." I'M NOT.....but My Father is....there is NOTHING too big for Him...that is my hope that endures all things....I will not be shaken, but will stand firm in His Word and in His promises to take care of me!! I do greatly appreciate your prayers!! They encourage me more than you know!! I love you all!!
1.03.2009
26. January 3, 2009
I have a few new updates....as the weather has gotten colder...the pain in my hands and feet has gotten a lot worse and a lot harder to manage. My neurologist from Mayo contacted me a few weeks ago (which was good timing...Philip and I had just been discussing the situation with my hands & feet and what we should do) after finally reviewing my entire case and recommended I see a rheumatologist to look into the possibility of Raynaud's phenomenon and Lupus.
I went this past week to a local rheumatologist. He did a full exam, a series of tests (including one where he was able to look at the blood vessels under my fingernails), and a full panel of bloodwork. He has diagnosed me with Raynaud's phenomenon (http://www.raynauds.org for more info) and started me on medication to help manage it. I've had trouble with my hands and feet for several years and assumed it was somehow related to my pseudo tumor cerebri. It started getting a lot worse over the last 6 months or so and as the weather has changed, its become quite unbareable at times. My hands have become extremely weak...sometimes I'm not even able to turn door knobs or open bottles and jars. For those of you who know me well, you know I've been very hot natured my entire life....well, not any more. I stay cold. I went to the grocery store yesterday and even though I was layered with two shirts, a ski coat, hat and gloves (YES, I looked like a complete idiot walking through the store) when I got to the frozen foods, I was so cold my bones ached and next thing I knew I was leaving the store with only a few items and tears running down my face. The medicine will not prevent attacks, but hopefully will minimize them. Once the weather gets warmer, that will help...but even the cool air of an air conditioner or opening a refrigerator or freezer can cause a spasm/attack.
My doctor also ordered a full lupus screening and although it has not come back yet, he wanted to go ahead and start me on a low dosage of medication to begin treating me for Lupus (http://www.lupus.org/) because he feels pretty certain that I have it based on some things in my medical history, things he found in my exam, and the fact that Raynaud's and Lupus often times go hand in hand.
I have to be honest, while I was relieved to finally have some answers, it was also frustrating....more "labels" for my already long list under "medical history"....more prescriptions....more doctors.... When I left the grocery store the other night, I was upset....crying.....I didn't ask, "why?" or anything like that....I just cried and felt frustrated. My radio was on a commercial....then a song came on....it was "Bring the Rain" by MercyMe (which my sister-in-law, Adelaide has sung beautifully at church).....
I went this past week to a local rheumatologist. He did a full exam, a series of tests (including one where he was able to look at the blood vessels under my fingernails), and a full panel of bloodwork. He has diagnosed me with Raynaud's phenomenon (http://www.raynauds.org for more info) and started me on medication to help manage it. I've had trouble with my hands and feet for several years and assumed it was somehow related to my pseudo tumor cerebri. It started getting a lot worse over the last 6 months or so and as the weather has changed, its become quite unbareable at times. My hands have become extremely weak...sometimes I'm not even able to turn door knobs or open bottles and jars. For those of you who know me well, you know I've been very hot natured my entire life....well, not any more. I stay cold. I went to the grocery store yesterday and even though I was layered with two shirts, a ski coat, hat and gloves (YES, I looked like a complete idiot walking through the store) when I got to the frozen foods, I was so cold my bones ached and next thing I knew I was leaving the store with only a few items and tears running down my face. The medicine will not prevent attacks, but hopefully will minimize them. Once the weather gets warmer, that will help...but even the cool air of an air conditioner or opening a refrigerator or freezer can cause a spasm/attack.
My doctor also ordered a full lupus screening and although it has not come back yet, he wanted to go ahead and start me on a low dosage of medication to begin treating me for Lupus (http://www.lupus.org/) because he feels pretty certain that I have it based on some things in my medical history, things he found in my exam, and the fact that Raynaud's and Lupus often times go hand in hand.
I have to be honest, while I was relieved to finally have some answers, it was also frustrating....more "labels" for my already long list under "medical history"....more prescriptions....more doctors.... When I left the grocery store the other night, I was upset....crying.....I didn't ask, "why?" or anything like that....I just cried and felt frustrated. My radio was on a commercial....then a song came on....it was "Bring the Rain" by MercyMe (which my sister-in-law, Adelaide has sung beautifully at church).....
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You?
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray...
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray...
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
Holy, holy, holyIs the Lord God Almighty
It was a gentle reminder for me...immediately I had God's peace. Whatever it takes, God...I'm a willing vessel!! I know that His strength can carry me through anything!!
I will keep you all updated as I find out any new information and will also keep you updated on any changes in how I'm doing. I really appreciate your prayers!!!
Please continue to keep Paxton in your prayers also. He's had a rough couple of weeks with his stomach. We thought we would see a more significant improvement, instead he seems worse. He's lost a few more pounds. Most folks won't notice much of a change in him because he is such a trouper and keeps a smile on his face and keeps pressing on (although I do feel like its becoming a slightly more visible in his little face)....but Philip and I see a big difference and are worried about him. Thank you for your continued prayers!!
I will keep you all updated as I find out any new information and will also keep you updated on any changes in how I'm doing. I really appreciate your prayers!!!
Please continue to keep Paxton in your prayers also. He's had a rough couple of weeks with his stomach. We thought we would see a more significant improvement, instead he seems worse. He's lost a few more pounds. Most folks won't notice much of a change in him because he is such a trouper and keeps a smile on his face and keeps pressing on (although I do feel like its becoming a slightly more visible in his little face)....but Philip and I see a big difference and are worried about him. Thank you for your continued prayers!!
12.02.2008
25. December 2, 2008
we went back to Mayo Clinic in Jacksonville, Florida yesterday. 11 hours in the car is more than anyone should ever drive in one day....but we listened to LOTS and LOTS of Christmas music!! :)
Basically the doctors at Mayo agree that we should "continue doing what we're doing" regarding the pseudo tumor cerebri. Continue on the meds and see my neuro-opthamologist at Emory every 3 to 4 months. He really gave us great comfort by telling us that Emory has one of (if not THE) best neuro-opthamology departments in the country and that they are the ones that specialize in my illness. They did mention that there are surgeries available to help better control the pressure and fluid to my brain...it may be something worth looking into in the future, but for right now the medicine I take is keeping it under control (even though it has really bad side effects) so we'll stay the course and keep pressing on. As far as dealing with the pain (specifically the severe headaches) there really isn't much they can do other than put me on prescription pain meds......and I've chosen not to do that.
The good news is that all of my lab work came back with good reports. They felt comfortable finally ruling out neuro-sarcoidosis....PRAISE THE LORD!!! That is no longer a concern.
My echocardiogram of my heart (ordered after they heard a heart murmur) was "basically normal"...not sure exactly what that means....doc says they will send me a full report in a couple of weeks. I may need to follow up with a cardiologist here in town.
As far as the problem with my jugular vein going through my right, middle ear and the anuerysm on my jugular vein, they are recommending we simply leave it alone. It has caused some hearing loss (and I may finally be able to get a mini-hearing aid in January because of a new insurnace policy Philip and I will be on) but hopefully will not continue to cause any more loss. The docs feel it would be much greater risk to do surgery than to just leave it alone.
They did not have any of the reports back from radiology (readings on my MRI's or CT scans of my brain and neck) so they are supposed to call me as soon as those come in.
All in all, Philip and I both feel like this was a successful endeavor. Just finding out that I do NOT have neurosarcoidosis and being reassured that we're on the right track in how we're dealing with the pseudo tumor cerebri made it well worth the trips to Jacksonville. We are still dealing with the issues with my hands which we thought were possibly related to the neurological problems but the doctor didn't seem to think it was, so now we're not sure what is causing it. It may be coming from the fact that I have two bulging discs in my neck (which I've had for several years)...but we're not sure.
I'll keep you posted on any further developments! :) Thank you, thank you, thank you for your faithful prayers and for your sweet words of encouragement!!
Love and blessings to you all!
Michelle
Basically the doctors at Mayo agree that we should "continue doing what we're doing" regarding the pseudo tumor cerebri. Continue on the meds and see my neuro-opthamologist at Emory every 3 to 4 months. He really gave us great comfort by telling us that Emory has one of (if not THE) best neuro-opthamology departments in the country and that they are the ones that specialize in my illness. They did mention that there are surgeries available to help better control the pressure and fluid to my brain...it may be something worth looking into in the future, but for right now the medicine I take is keeping it under control (even though it has really bad side effects) so we'll stay the course and keep pressing on. As far as dealing with the pain (specifically the severe headaches) there really isn't much they can do other than put me on prescription pain meds......and I've chosen not to do that.
The good news is that all of my lab work came back with good reports. They felt comfortable finally ruling out neuro-sarcoidosis....PRAISE THE LORD!!! That is no longer a concern.
My echocardiogram of my heart (ordered after they heard a heart murmur) was "basically normal"...not sure exactly what that means....doc says they will send me a full report in a couple of weeks. I may need to follow up with a cardiologist here in town.
As far as the problem with my jugular vein going through my right, middle ear and the anuerysm on my jugular vein, they are recommending we simply leave it alone. It has caused some hearing loss (and I may finally be able to get a mini-hearing aid in January because of a new insurnace policy Philip and I will be on) but hopefully will not continue to cause any more loss. The docs feel it would be much greater risk to do surgery than to just leave it alone.
They did not have any of the reports back from radiology (readings on my MRI's or CT scans of my brain and neck) so they are supposed to call me as soon as those come in.
All in all, Philip and I both feel like this was a successful endeavor. Just finding out that I do NOT have neurosarcoidosis and being reassured that we're on the right track in how we're dealing with the pseudo tumor cerebri made it well worth the trips to Jacksonville. We are still dealing with the issues with my hands which we thought were possibly related to the neurological problems but the doctor didn't seem to think it was, so now we're not sure what is causing it. It may be coming from the fact that I have two bulging discs in my neck (which I've had for several years)...but we're not sure.
I'll keep you posted on any further developments! :) Thank you, thank you, thank you for your faithful prayers and for your sweet words of encouragement!!
Love and blessings to you all!
Michelle
11.22.2008
24. November 22, 2008
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!
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!
11.14.2008
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! :)
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