Posted on 01/23/2002 12:49:08 AM PST by Beep
I really didn't want to bother FR with this; I thought everything was under control, but it isn't. It isn't at all. I'm trying to stop shaking, but my hands are trembling, and -- I'm just at the end of my rope! I've tried to convince Bob (my fiance) that everything is fine, but now he's calming down and I'm a wreck.
This is such a long story. I don't even know where to start! Some of you know a little of my medical history already. For those who don't, I'll try to keep this brief and as concise as possible. I found out, in early 2000 (after years and years of being undiagnosed and misdiagnosed) that I have Arnold-Chiari malformation (ACM). Basically, that means that my cerebellar tonsils have slipped down my spinal canal beyond the foramen magnum, and are pressing on my brainstem, as well as causing cerebrospinal fluid (CSF) blockage. This causes severe headaches, extreme bodywide pain, various neurological deficits, bad eyesight, and a myriad of other symptoms that aren't pleasant. I've had one decompression surgery already, where part of my skull was removed, as well as part of my first two vertebrae (craniectomy and cervical laminectomies), in order to make more room for the cerebellar tonsils to retract back up into the skull where they belong. (As well as relieving the blockage of the CSF.) Instead of replacing the skull, my neurosurgeon used a bovine patch instead, to make even more room for my cerebellar tonsils. Unfortunately, the surgery didn't produce the needed results, and I am supposed to have a second surgery, where my neurosurgeon will completely remove my cerebellar tonsils.
Okay. Bear with me here. *deep sigh* With ACM comes a number of related conditions (all congenital, or caused by something congenital), and I definitely got my fair share -- dextroscoliosis, significant spina bifida occulta, temperomandibular joint dysfunction (TMJD), fibromyalgia, myofascial pain syndrome, dysautonomia, auto-immune deficiencies, etc, etc, etc. The ACM also alters the pH of my saliva, which causes the erosion of my tooth enamel. The medications I've been prescribed for my symptoms also dries out my mouth, which is not very healthy for my teeth either. No matter what I did to keep them healthy (which was considerably more than the average person does for their teeth -- everyone always laughed at me for all of my dental appliances and dental hygiene products!), they have continued to decay at an alarming rate.
Before I had the first ACM surgery, I had to have a root canal and a cap placed on the offending tooth before the neurosurgeon would operate. (Abscessing teeth are a no-no when having brain surgery.) I was scheduled to have my second brain surgery last October, but it had to be put off until this coming March because of the state of my teeth. Even before the delay, my ACM was already on a steady decline. Thanks to the pain and neurological problems, I've been bedridden for months now. I was looking forward to the brain surgery, as well as dreading it, because I've heard of people having really good results when their cerebellar tonsils were completely removed. (Depending on how much permanent damage has been done, which is affected by time.)
Even though my parents, and my two sisters and their families, live only 30 minutes away, none of my family has come to visit me since I've been disabled. In fact, in the five years that I've been in this house, I can count the number of visits from anyone in my family on one hand. And that's inclusive. I can barely walk, and I can't bathe myself, or dress myself, or do much of anything that requires getting out of bed. Bob tries to help, but he gets frustrated because he doesn't know what he's doing. My own mother is an RN and an ordained Methodist minister, but she doesn't come over and help me. No one in my family even calls to check on me. This year, they didn't even bother to call on Thanksgiving or Christmas! My mother told my aunt (her sister) that they would be bringing us Thanksgiving dinner, so Bob and I didn't make any other arrangements. But by 8pm Thanksgiving night, we basically gave up on them making good on that promise. (And while Bob had had Thanksgiving dinner with his mother at her assisted living home, I had stale mashed potatoes from a box for Thanksgiving.) Christmas? No dinner, no gifts, no phone call -- they didn't even send me a Christmas card! Not even an email!
That hurts, but I try not to let it keep me down for long. I can't afford to. Okay -- **another deep breath** -- since my teeth are in such horrible shape (literally breaking apart in my mouth), the only thing we can do now is to have all my teeth surgically removed and have dentures put in. My oral surgeon thinks I should have that performed in the hospital (outpatient) because of all my other health problems, and I agree wholeheartedly. They abscess almost all the time, and I'm either on an antibiotic, just stopping one, or just getting ready to start another round, at all times. (I'm also scared out of my mind, although I don't really know why!) So -- the plan was to get the dentures made by my dentist, and then my oral surgeon would place them, after removing what's left of the teeth in my mouth. I don't have dental insurance that has kicked in yet (and it will be months before it does kick in enough to cover anything like this!), but we were fairly sure that Medicare and TennCare would cover most of the surgery and doctor bills. Bob and I used every cent and every bit of credit we had left to buy the dentures, which are now made and sitting in the next room. They have to be placed, though, and soon! My mother had promised my aunt that she had $3,000 in a bank account, expressly to help with this. But I kept telling Bob that I didn't believe it, something would go wrong, and somehow I just knew we couldn't count on it.
Today (actually yesterday), everything came crumbling apart. First, my mother reneged on the $3,000 in an email to Bob. Then my oral surgeon's office called, and Medicare/TennCare will not cover any of my oral surgery. Nothing. $10,000 worth of nothing! And if I don't get those dentures placed very quickly, they will be useless, and we'll still have to keep paying on them for years to come! Not to mention that I won't be able to eat before long, as one tooth after another crumbles from decay, leaving me open to infection after infection, and God only knows what all else. . . .
I don't know what to do. I'm out of strength to fight. I'm constantly sick; believe me, having a mouth full of rotten teeth makes you very, very ill! It's completely disgusting. None of my relatives have the kind of money I'd need to have this done. I don't know what to do now. I just don't!
On top of that, the second brain surgery is still looming over me; I need to have that surgery ASAP, or I'll suffer more and more permanent neurological damage. All I know to do is pray, and hope that God has mercy on me. So I am asking -- I am begging -- please pray for my situation?? Please??
I don't even have the strength to ping anyone; typing all of that wore me out! So I'm just going to post this, and let God take care of everything else. I'm out of steam. I. Give. Up.
Thank you for reading this. God bless you.
Prayers and best wishes go out to you SLJP, I hope to see you FReeping for many years to come...JFK
God Bless.
When we all fail you... I understand God's word won't.
Faith comes by hearing .. .. .. and that kind of hearing comes ONLY from God's word. HE is feeling your pain. Cast your pain, worry and fear over on Him.
Think about this continuously for the next few days EVEN if you think you are dying... "I shall not die, but live, and declare the works of the LORD. The LORD hath chastened me sore: but he hath not given me over unto death. Open to me the gates of righteousness: I will go into them, and I will praise the LORD:"
Better to face death leaning on the everlasting arms, and more often than not find a way to recover, than to suffer without hope.
Jesus is EASILY touched by the pains you are experincing. "WE do not have a high priest which is not easily touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need."
My prayer is that God gives you some hope. That you find hope in Him... the resource that cannot be exhausted by your frailties. God Almighty is RIGHT where you are. When HE seems the farthest away, is EXACTLY when He is closer than your very next breath.
Be well.
Bump
Got ya covered in prayer, brother :-)
SLJP,
May The Holy One Of Israel Bless You, Touch You and Heal You from the Top of Your Head to the Bottom of Your Feet!
And may He give to You His Strength, His Grace, His Provision, His Love and His Shalom...His Perfect and Abiding Peace.
In The Name That Is Above ALL Names ~ Yeshua HaMoshiach - Jesus The Christ!
Amen & Amen.
Don't give up and please know you're not alone. You will be in my prayers.
Here in Louisiana we have several charity hospitals. If there are none in your state maybe you could check your neighboring states. If there is a residency requirement, maybe it would be worthwhile to rent a small apartment for a few months in order to qualify to use that state's charity hospital system.
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