"... that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24
This is also the day before the day that everything is going to get better! This is my new philosophy. This is what has kept me sane since February 10th. This is what happened.
Having a headache is nothing new. I woke up with a headache one morning in mid October, and I have had a headache every day since. On Feb. 9th and 10th, the headache was getting progressively worse. After relaying this to my doctor, I was told this was more than likely it was the diagnosis they had been toying with, Hashimotos Encephalopathy, and that I should start immediately taking 60mg of prednisone. 60?!?! Seriously?!? Anyone who has ever taken prednisone can understand my hesitation. My current dosage has been 5-10mg a day. I couldn't imagine the side effects of 60?! I was going to be bouncing off the walls hyper! Goodbye, sleep, nice knowing ya! Goodbye cheekbones, again. Well, I had to do something and maybe this would get it under control. I took the 60 and sat down in my recliner waiting for it to kick in.
My heart rate increased. Here it comes. Wait, I feel strange. I can't hold my head up. My head feels like it weighs a hundred pounds. My eyelids keep closing. It is an effort to keep them open. This definitely isn't the side effects I expected. My tongue wouldn't work like I wanted it to. My speech was slow. Uh oh. Not good. Better call someone. Mom n dad were getting ready for my niece's beauty pageant, so I didn't want to call them. I didn't want anyone getting scared because this was about to pass, I was sure of it. Called my sweet friend. She confirmed what my slow mind was telling me - might better go to the hospital. Then my tongue and the right side of my face went tingly then numb. My left arm started to ache and feel strange, then my left leg. I tried to get out of my recliner and almost passed out. Yep, might better do something. Called my super sweet neighbor, who was there in an instant. She confirmed the hospital plan and loaded up myself, her 2 kids, and my 2 kids and headed to the hospital. Thank you, Lord, for good friends!
As I sat in the ER waiting room, the symptoms got worse. The headache was bad and it felt as if there was lots of pressure in my head. I did finally call my parents, who were there in record time, of course. My mom kept telling me to wake up. I was awake and aware of what going on, I just couldn't keep my eyelids open and didn't want to move. It was all too much effort. This, my friends, is a very scary feeling. Then, an even stranger feeling hit. Now, I have never passed out, and have no idea what it feels like, but I assume it felt like this. I felt as if I were losing myself, as if I were sinking into something. This something wasn't scary while it was happening. It was somewhat comforting. Like snuggling down in a deep sleep. Then I heard my moms voice and felt an extreme wave of nausea and awful headache. I snapped out of it. Ok, that was scary.
Long story short, I got admitted for 3 days of high dose IV steroids, the first treatment for Hashimotos Encephalopathy. This, of course, after nurses and doctors alike said, "Hashimotos encephalopathy?! I've never seen that!" Then when seeing me later (after I know they went and googled it) telling me how rare that diagnosis really was! Lol! They began the IV steroids and by the next night, I was feeling better. After 2 days worth, the strange symptoms were gone. Awesome! This would cure it! Wonderful! I came home just in time to help Molly get her valentines ready for her class.
Then the symptoms came back: right side of face and tongue numb, left arm and leg weakness, pressure in head, bad headache, extreme lethargy, slow thought process. This is what I began referring to as "spells." during each spell, I would always wonder if the feeling in my face and the other symptoms would subside or leave permanent damage. The spell began lasting longer. I was out of the hospital a whole 10 days (on 60mg prednisone) before my neurologist at LSU agreed to try HE treatment #2-IVIG therapy. I was admitted to LSU for 5 days of IVIG. Now, I could write a book about what happened there, but I know you don't what to hear all that. I can sum it up by saying that my symptoms were doubted, unnecessary tests ran and crazy stupid diagnoses given. The only thing that got me through that without strangling anyone was knowing that the IVIG was the next line of treatment for HE.
I did feel somewhat better while in the hospital, but don't know if it was the IVIG or that I was just laying around not doing anything. I also learned that my neurologist, not being sure of the HE diagnosis, gave me the lowest recommended dose of the IVIG. Soooooo, when I got home and the symptoms once again returned, the question was, was the IVIG not working, or was the IVIG dosage too low?!? Ugh! But, I did get home just in time for my baby's 2nd birthday! Then the symptoms returned.
I was on my own again to try to find treatment. None of my doctors here would see me with neurological symptoms. My neurologist told me she was going to call it a "simple migraine" and to follow up in 6 weeks. Really?!?! Reeeeeeally?!?! Scratch her off the list. I do research to see what doctors close to us have ever treated HE. I found a doctor in Dallas at UT Southwestern that is a neuroimmunologist and has treated HE and done research on autoimmune diseases of the brain. I called. His first appointment is June. Seriously?!? Well, if he received ALL my medical records and it was determined I needed to be seen earlier, THEN he might get me an earlier appointment. Well, that was 3 weeks ago and LSU STILL hasn't sent my medical records!
In the meantime, I am still having "spells." On a good day, only 2 or 3, on a bad day, many more. I can't drive because of the spells. If I do too much, like try to pick up the house or simply take care of an active 2 year old, the spells are worse and/or last longer. Oh, and a new symptom was thrown in a couple weeks ago - nausea. So I take nausea meds at least twice a day.
I have to say that I couldn't have made it without my sweet momma. I thank God every day for her. She has practically lived with us to take care of me and the kids! Still can't be seen by a doctor. Tried to be seen by another neurologist in town just to be told that he had to have LSU records. Well, scratch that one off cause that'll never happen.
But life goes on. I might be watching it from the couch, but life goes on. I feel bad because I am tired of complaining. I know people probably don't want to call to check on me because I sound like a broken record. Things that I had volunteered for, and had every intention of doing, I can no longer do. I know people must think I'm just making excuses. I know it's hard for people to understand that I am having multiple episodes of stroke- like symptoms every day. I mean, seriously, who has that?! Well, me. I just hope they understand.
People say, "How are you?" My response here lately, "making it." because that is what I'm doing - making it. Taking one day at a a time. Every day saying, "Tomorrow will be better." one day, I'll be right. Well, today is a little better because I'm able to type this. Maybe tomorrow will be even better.
How often do you say "How are you?" to someone? Here in the south, probably quite a lot. Do you mean it? I think the two most overused and sometimes abused sayings in the south are "How are you doing?" and "I'll pray for you." Well, do you REALLY want to know how that person is doing? Do you have the time to really hear how that person is doing? Do you really even care? If not, don't say it. Try just saying Hi! Are you REALLY going to pray for that person or were you just letting the person know that you hated what that were going through or did it just look good on Facebook? I'm not saying I haven't ever been guilty of these, but after all this, I will listen closely when I ask "how are you?" and will surely pray after I say I will.
I will also not say " if there is anything you need, please let me know" without meaning it. I want to be that friend or relative that you can count on. In the hospital and so bored you could cry? I want you to feel free to call me and say "I just need someone here" or "could you bring me some movies or magazines." or "this food is horrible. Could you bring me something edible?" I can only hope to be that friend if ever needed. If we are going to be sicky sweet to people in the south, let's back it up and mean what we say!
Sorry, I digress. So, right now, I am waiting. Waiting on an appointment. Praying the symptoms don't get worse, only better. I don't care what the diagnosis may be, I just want to get better. But I am most definitely not waiting on God! He has been here with me through everything. Without him, I surely would've broken. The pain, symptoms, medication side effects that have altered my appearance like never before, all of this is bearable because He is with me. He assures me that I will make it through. He gives me the strength that I do have and emotional strength like never before. He pulls me out of my pity party and helps me to see all the many blessings in my life! Even through this, I am so blessed! And to think, tomorrow will be even better!!!
"This is the day that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24
For more information about Hashimotos Encephalopathy
http://www.thyroid-info.com/hashimotos-encephalopathy.htm
http://thyroid.about.com/cs/hashimotos/a/encephalopathy.htm
Monday, March 19, 2012
Tuesday, February 7, 2012
...that God spoke to my heart and I'm making a change.
"... that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24
This is also the day that my hives are currently in remission. I am almost scared to say that out loud. After 1 1/2 years of hives and only one other period of remission of only a week, I am cautiously saying this. I am, however, gratefully saying this and praising God while saying this!
Well, last I left you, I had a spot on my brain and had just had a spinal tap. Well, the results of the spinal tap were negative, but they still don't know what the spot is in my brain. Comforting, right? The spot is in the center of my brain in the corpus callosum and apparently that is pretty rare, but when have I ever been normal? I had the specialists scrambling for a while. They were scratching their heads and consulting other specialists throughout the country. One doctor said, "Are you sure you are ok? I mean, I just told you that you definitely have a spot on your brain and that it has grown and that we have no clue as to what it is and you seem to be taking this quite well." My response: "Oh, I'm used to it, and I know God has it all under control." And He did. He does. The doctors, they consulted. They tested. They conferenced. They passed it off to other doctors. But that is fine. Here is what we learned. There is a spot in the center of my brain that has doubled in size since 2007. It is not Multiple Sclerosis. It is not actively growing cancer. It is currently dormant. Follow up MRI in 6 months.
So, my life the past year. Lump in breast, 90% chance of cancer. Lump removed. No cancer. Mass found in liver. Liver biopsy. No cancer. Spot found in brain. No MS. No cancer. Hives all over for 1 1/2 years. 1 trip to Mayo Clinic. Daily migraines. 16 current medications. Emotional status: wobbly. Physical status: getting better. Spiritual status: God has carried me through it all and I am closer to Him that ever before. Praise God for allowing me to go through all this if for no other reason than to be closer to Him! This is my testimony!!!
Now, all that said, I have to tell you what happened to me. It has to be one of the greatest things to ever happen to me in my entire life. Now, I have heard people say, "God spoke to me." Well, I have to admit, I never really fully understood this. I am being completely honest here. I am a believer that God can speak to your heart. I have heard that still quiet voice before, but a few weeks ago, man, God SPOKE to me! I mean SPOKE to me. I have always wanted to help somehow with mission work, but never knew how I could help. I am a stay-at-home mom and a sick one at that, with a husband that is working all the time. How could I help? How could I pack up and head to a foreign country, as appealing as that sounds sometimes.
Well, I was sitting in evening service and I heard God speak to me, telling me my place was in prison ministry. My response? Uh uh. Shoot. He must be talking to someone else. Uh, nope. He made it clear. In my head and in my heart like never before. Prison ministry. Prison ministry?! Nah. Yep. But... No, buts. Prison ministry. Wow. But I'm not equipped. I'm not knowledgeable enough. But God doesn't call the equipped, He equips the called. So, I sent my preacher an email to ask him if there was a prison ministry that our church participates in, and sure enough, there was, and guess what? The lady that is over the women's prison ministry had just, that same day, told our preacher that she needed help. Yep, God SPOKE to me that day. Now, I haven't been to the prison yet. I am getting prepared. There is a part of me that keeps wanting to get scared, but then God jumps up and assures me that He has prepared me my whole life for this. He gave me my testimony, now it's time to use it!
Our preacher asked one day, what if you made one positive Christian change that you stuck with the entire year? What would your year look like? Have you taken the time out of your busy life to have quiet time with God so He can speak to you and give you direction? Sometimes we are so caught up in the craziness of life and trying to figure out what we want that we forget to just stop. and listen. and pray. and listen. and God will give us the guidance and direction we so desperately desire. And sometimes, we don't even realize we need it. We think our lives are absolutely perfect just the way they are. Then something happens to shake things up a bit and we find ourselves hitting our knees in prayer like never before.
Now, here lately, I have heard a lot of people turning away from churches or saying "I'm not going to that church. They are a bunch of hypocrites." or "I just don't like their song service, so I'm changing churches," etc, etc, etc. Well, people, no church is perfect, and it is when you put your faith in man that you will be disappointed EVERY time. Put your faith in God, not man. Let God lead you to a place you can worship with people who believe like you so you have a church body to lean on and rely on. I do feel having a church is an integral part of a close walk with God, however not the only part. For me, it helps me stay close to God to hear God's word spoken and studied. It helps me to kneel at the alter. A church is a place for sinners, not saints. But as a wise man once said, "I'd rather go to Heaven with a bunch of hypocrites, than to hell with everyone else."
But I digress. My whole point was to see if I could get someone else to help me with a New Year's resolution. It has nothing to do with losing weight. My resolution is to take more time for those quiet moments with God. To listen to Him more. To go where He leads me and to witness to those He puts in my path. Sounds scary, I know, but God is bigger than scary, and with Him at the lead, we can do this. I know there are a lot of you who already do this and have done this for a while. I would love to hear feedback from all of you! If we make this one little change, imagine how our year will look?!
"This is the day that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24
This is also the day that my hives are currently in remission. I am almost scared to say that out loud. After 1 1/2 years of hives and only one other period of remission of only a week, I am cautiously saying this. I am, however, gratefully saying this and praising God while saying this!
Well, last I left you, I had a spot on my brain and had just had a spinal tap. Well, the results of the spinal tap were negative, but they still don't know what the spot is in my brain. Comforting, right? The spot is in the center of my brain in the corpus callosum and apparently that is pretty rare, but when have I ever been normal? I had the specialists scrambling for a while. They were scratching their heads and consulting other specialists throughout the country. One doctor said, "Are you sure you are ok? I mean, I just told you that you definitely have a spot on your brain and that it has grown and that we have no clue as to what it is and you seem to be taking this quite well." My response: "Oh, I'm used to it, and I know God has it all under control." And He did. He does. The doctors, they consulted. They tested. They conferenced. They passed it off to other doctors. But that is fine. Here is what we learned. There is a spot in the center of my brain that has doubled in size since 2007. It is not Multiple Sclerosis. It is not actively growing cancer. It is currently dormant. Follow up MRI in 6 months.
So, my life the past year. Lump in breast, 90% chance of cancer. Lump removed. No cancer. Mass found in liver. Liver biopsy. No cancer. Spot found in brain. No MS. No cancer. Hives all over for 1 1/2 years. 1 trip to Mayo Clinic. Daily migraines. 16 current medications. Emotional status: wobbly. Physical status: getting better. Spiritual status: God has carried me through it all and I am closer to Him that ever before. Praise God for allowing me to go through all this if for no other reason than to be closer to Him! This is my testimony!!!
Now, all that said, I have to tell you what happened to me. It has to be one of the greatest things to ever happen to me in my entire life. Now, I have heard people say, "God spoke to me." Well, I have to admit, I never really fully understood this. I am being completely honest here. I am a believer that God can speak to your heart. I have heard that still quiet voice before, but a few weeks ago, man, God SPOKE to me! I mean SPOKE to me. I have always wanted to help somehow with mission work, but never knew how I could help. I am a stay-at-home mom and a sick one at that, with a husband that is working all the time. How could I help? How could I pack up and head to a foreign country, as appealing as that sounds sometimes.
Well, I was sitting in evening service and I heard God speak to me, telling me my place was in prison ministry. My response? Uh uh. Shoot. He must be talking to someone else. Uh, nope. He made it clear. In my head and in my heart like never before. Prison ministry. Prison ministry?! Nah. Yep. But... No, buts. Prison ministry. Wow. But I'm not equipped. I'm not knowledgeable enough. But God doesn't call the equipped, He equips the called. So, I sent my preacher an email to ask him if there was a prison ministry that our church participates in, and sure enough, there was, and guess what? The lady that is over the women's prison ministry had just, that same day, told our preacher that she needed help. Yep, God SPOKE to me that day. Now, I haven't been to the prison yet. I am getting prepared. There is a part of me that keeps wanting to get scared, but then God jumps up and assures me that He has prepared me my whole life for this. He gave me my testimony, now it's time to use it!
Our preacher asked one day, what if you made one positive Christian change that you stuck with the entire year? What would your year look like? Have you taken the time out of your busy life to have quiet time with God so He can speak to you and give you direction? Sometimes we are so caught up in the craziness of life and trying to figure out what we want that we forget to just stop. and listen. and pray. and listen. and God will give us the guidance and direction we so desperately desire. And sometimes, we don't even realize we need it. We think our lives are absolutely perfect just the way they are. Then something happens to shake things up a bit and we find ourselves hitting our knees in prayer like never before.
Now, here lately, I have heard a lot of people turning away from churches or saying "I'm not going to that church. They are a bunch of hypocrites." or "I just don't like their song service, so I'm changing churches," etc, etc, etc. Well, people, no church is perfect, and it is when you put your faith in man that you will be disappointed EVERY time. Put your faith in God, not man. Let God lead you to a place you can worship with people who believe like you so you have a church body to lean on and rely on. I do feel having a church is an integral part of a close walk with God, however not the only part. For me, it helps me stay close to God to hear God's word spoken and studied. It helps me to kneel at the alter. A church is a place for sinners, not saints. But as a wise man once said, "I'd rather go to Heaven with a bunch of hypocrites, than to hell with everyone else."
But I digress. My whole point was to see if I could get someone else to help me with a New Year's resolution. It has nothing to do with losing weight. My resolution is to take more time for those quiet moments with God. To listen to Him more. To go where He leads me and to witness to those He puts in my path. Sounds scary, I know, but God is bigger than scary, and with Him at the lead, we can do this. I know there are a lot of you who already do this and have done this for a while. I would love to hear feedback from all of you! If we make this one little change, imagine how our year will look?!
"This is the day that the Lord hath made. I will rejoice and be glad in it." Psalm 118:24
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