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!!!)

🙂

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

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.

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!

9. Friday, August 15, 2008

“new post…latest health update…”

ok….try to follow me…i’m going to give a “full run down” of where we stand and what we know so far….

– pseudo tumor cerebri…my spinal fluid leaks and causes increased pressure in my brain (this is also what caused my vision loss in 2003). Right now we’re managing it with strong medication (with very painful side effects). I’m going back to emory on September 4th to see my neurologist for a check-up and I will also see my neuro-opthamologist that same day to make sure there haven’t been any changes with my eyes.

– blood clots…my last blog mentioned concern about possible blood clots in my brain. PRAISE THE LORD the CT scan of my brain revealed i do NOT have any blood clots in my brain!! my neurologist said that i have very small veins in my brain which can slow blood flow (and may even be the cause of my pseudo tumor cerebri), but NO BLOOD CLOTS!!! HALLELUJAH!

– neurosarcoidosis…it is a form of lupus and apparently is very serious. i need several very expensive tests to diagnose this disease, but we are waiting on my insurance company to approve them before we proceed. soooo….we still don’t know much here….

– my ear…many of you have heard me complain about my right ear for the past several years. i have a “whooshing” noise that is almost constant. it drives me insane. my doctors have gone back and forth as to whether or not they thought it was related to the pseudo tumor cerebri. Then just recently, I’ve had some hearing loss in my right ear. well…my neurologist from emory called and said he spoted something unusual on my ct scan of my brain related to my EAR! Long story short – he says my right jugular vein is “riding high and wearing down on the bone” and is running THROUGH my middle ear!! he says it looks very painful!!! (IT IS!!!) he is referring me to the chairman of the ENT department of Emory to see what can be done. crazy!!!

these are the only updates we have right now.

as far as how i’m feeling…most of the time…pretty rotten. some days are better than others….some times are better than others. mornings and late in the day are hardest for me.

i spoke with my neurologist yesterday and he is changing my medicine (taking me off the topamax and putting me back on diamoxx). probably won’t affect how i feel too much…the side effects are very similar for both of the medicines….but hopefully it will help my headaches by relieving the pressure from the spinal fluid.

i will continue to keep you all posted. thank you so much for your faithful prayers! they mean so much to me! god bless!

8. Thursday, July 17, 2008

“health update….”

my neurologist from emory called me last week. i have to go back for more tests. he is now specifically looking for neurosarcoidosis (similar to lupus, but affecting my brain). he says it’s very serious. unfortuntately we’re waiting on “red tape” from the insurance company before we can proceed with the needed testing. this is in addition to the pseudo tumor cerebri that he is currently treating me for.

my doctor is also concerned that i may have some blood clots in the veins of my brain. i’m going back to emory this friday to scan for that.

i’m in a lot of pain. if you see me, i more than likely will have a smile on my face…although i don’t always feel like smiling, it is not a forced or “fake”smile….it is the joy of the Lord….He is my strength and the song in my heart.

thanks for all of your prayers!!!

7. Friday, June 20, 2008

My neurologist from Emory called me this afternoon to tell me that there were some abnormalities with the spinal fluid that he collected when he did the spinal tap on me this past Monday.I have to go back to Emory and have several more tests to confirm whether or not I have Sarcoidosis…..and auto immune disease that is in the same family as Lupus.Please pray for me! I’m naturally a little concerned, but ultimately comforted knowing that I have friends like you lifting me up. I know God has a plan for my life…Jeremiah 29:11 reminds me: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

I’m also still battling a severe headache from the spinal tap. I have to go back to the hospital on Monday to have a Blood patch to close up the hole that the spinal tap left in my spinal column. Hopefully that will help the pain!!! I’ll keep you all posted!! Thanks so much for all of your prayers and many words of encouragement!

6. Thursday, June 19, 2008

“prayer…and MORE prayer…”

ok, prayer warriors! I need you once again!

I had to go back to Emory this past Monday (June 16th, 2008) to see the neurologist. He talked me in to doing another spinal tap (this was my EIGHTH) and although I strongly protested it, I’m glad I let him do it. The spinal tap showed the pressure in my brain was elevated again. What this means is the illness I had 4 years ago when I was pregnant with Micah has flared back up. It is called psuedo tumor cerebri and basically means spinal fluid is leaking and causing high pressure in my brain. This illness is what caused my vision loss in 2003. So now I’m back to making lots of trips to Emory….I already have 3 more appointments scheduled in the next 3 months for various tests and visits with the neurologist and my neuro-opthomalogist. That’s a LOT of traveling…and a LOT of GAS MONEY!!!

Anyway….the good news is they’ve caught it early this time, so they should be able to get it under control with medication and I should not have any additional vision loss.
Bad news is, the medication that I will be on has a lot of really bad side affects. Lots of people with this illness are on permanent disability solely due to the side effects of this medication.

So…..I am first and foremost praying for TOTAL HEALING from this illness. I know that God can and will heal me….with that being said, I also know that it will be in HIS TIMING, not my own. In the meantime, I’m praying that the medication will not be as difficult to deal with as it has been in the past.

I appreciate all of you joining me in prayer!

On a side note…I have a praise!! In March of 2000 I had malignant melanoma (a very serious type of skin cancer) on my back. Since then, I have to go every 6 months for “cancer checks.” Last week I had two spots that the doctor thought looked suspicious, so he cut them off and had them biopsied. I got a call from him yesterday letting me know they were NORMAL! YAY!!! I actually had a medical test that came back NORMAL!!! Praise the Lord! 🙂

5. Monday, December 31, 2007

“my eyes are filled with tears…”

My “baby” boy, Micah, turned FOUR YEARS OLD today.

I can’t help thinking about where I was four years ago. Not just “at the hospital”….that’s kind of a given! 🙂 But what I was feeling and thinking….how terrified I was because of all of the complications and all of the problems I was having throughout the pregnancy. We weren’t sure if Micah and I would make it to that point….to the point of delivery…and yet on December 31, 2003 we were there…at the Medical Center being told that they were taking Micah….almost four weeks earlier than planned….but Micah was ready!

I was told halfway through my pregnancy that I would have to have a c-section because of all the turmoil going on within my body (specifically with my brain and spinal cord). With no “sugar coating” I was bluntly told that giving birth could cause the already elevated pressure in my brain to increase even more and cause me to have a stroke.

I was so relieved, excited, anxious and amazed that I was there at the hospital, about to have Micah…that we had both actually made it to that point. Yet I was terrified at what the ultimate outcome would be.

The next thing I remember is waking up (a few hours after Micah was born) and seeing this beautiful, healthy 7 pound, 13 oz. little miracle lying in my arms. We were both living and breathing……and instantly I had peace. Although I was still concerned about my health (and my vision) and knew that I had a long road ahead of me…I knew I was in God’s hands, just as Micah was being held in mine!

As I sit and type this, many, many friends…prayer warriors…come to mind. You all know who you are and I thank God everytime I think of you! Thank you for your many prayers! How blessed I am to have such faithful, loving, and caring friends!

God is so good. Both of my boys are miracles (because of other health issues I have, I was told at a very young age that I would probably never have children of my own…and God gave me TWO amazing sons!!!) He has richly blessed me….far beyond measure….far more than I deserve….far more than I could ever repay Him….I am blessed, indeed.

4. Monday, September 17, 2007

“no more than we can handle…”

I just finished reading Jeremia 29:11-14a:
11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the LORD, “and will bring you back from captivity.

You have no idea how tightly I am clinging to that scripture right now. God promises to never put on us any more than we can handle….I’m keeping hold of that promise and keeping my eyes on Him!

God is constant. Family and friends may come and go, but He is always there…sustaining me, holding me, loving me, forgiving me, cleansing me, healing me and showing me mercy and grace even though I don’t come close to deserving it. He loves me….despite myself, He loves me….the real me….just as I am.