Well we have had a busy day today. I started feeling weak again on Monday and new that something was not right. My sister and Cooper came down for a couple of days to help us out. Man, they sure were a big help, we did not want to see the Super Nanny go. Sara had a way of calming Haley that we have not been able to do so far. Today George took me to see Dr. Nations. She is starting me on Prednisone to see if I will get stronger or if it works.
I am getting an infusion right at this very moment sitting at home watching tv in our recliner. Home Health is a wonderful thing. The nurse is very nice and helpful. She sits with me for 4-5 hours or until the bottle is gone. I am scheduled to do this every 3 weeks, but this time it was only a week in between treatments.
Dr. Nations said that I am a moderate case and that the prednisone should help. There are so many side effects to predinsone, and she said I won't stay on them long. One questions she continues to have is if this disease is congenital (born with it) or autoimmune. All my labs are coming back negative or normal meaning that it is congenital MG, but since my body is responding to the treatment, then that makes her think it is the autoimmune kind. Maybe the prednisone will help her tell more of which it is.
Please continue to pray for my healing and strength. Its so hard one day walking around and holding your baby and the next day feeling as if you don't hold her head or or yours for that matter. My mom and George are definitely my strength and have helped me so much doing anything and everything they can to be strong and help out. George's mom helped so much too staying with Haley while I was in the hospital. Thanks cannot begin to express how much they are appreciated and have helped me with things I cannot do on my own.
Thursday, February 26, 2009
Friday, February 20, 2009
I'm Home!!
Sorry I haven't updated, our internet has been down. I am now home and feeling stronger everyday. It will take awhile and I have to remember how down I have been since Nov. and that I have just had a baby and that it is going to take sometime. I am much better than prior to giving birth thats for sure.
I was on the phone with home health and getting it all set up to do home infusions every month or so. I go see my neurologist in a couple of weeks and I already have lots of questions. My doctor said that ivig was kind of hard to come by because of the war, so if you can ever donate blood-please do and just think of it as if you are helping me.
I was on the phone with home health and getting it all set up to do home infusions every month or so. I go see my neurologist in a couple of weeks and I already have lots of questions. My doctor said that ivig was kind of hard to come by because of the war, so if you can ever donate blood-please do and just think of it as if you are helping me.
Wednesday, February 18, 2009
Treatment #5
Started the 5th Treatement this morning at 6 and it should be done by 1130 or so. Then I just have to wait for the doctor to come by and discharge me. Improvements: This morning I swallowed my pillow instead of getting them crushed and ate a piece of sausage. I'm so excited about getting to see my little girl in a couple of hours!!
As for where do we go from here: My neurologist in Dallas said that she wants to see me in 2 weeks and then she will set me up for booster treatments every 3-4 weeks at home. Home health will come in and run the treatment for 5 hours and then be done. She says the effects of these 5 treatements should last 3-4 weeks. Lets pray that she is totally wrong and that I will get better and not need anymore treatments!! Thats possible that it could go in remission or that it could not need anymore, but if not then i'll just chill at home once a month and get a treatment. If it makes me feel better and normal, then so be it. I'll do anything not to feel like I have for the past 6 months or have another crisis like I did after delivery.
Thanks for all your prayers. Keep them coming. I'll try to update, but I can't promise that I'll be doing anything but spoiling Haley and taking care of myself when I get home for awhile.
As for where do we go from here: My neurologist in Dallas said that she wants to see me in 2 weeks and then she will set me up for booster treatments every 3-4 weeks at home. Home health will come in and run the treatment for 5 hours and then be done. She says the effects of these 5 treatements should last 3-4 weeks. Lets pray that she is totally wrong and that I will get better and not need anymore treatments!! Thats possible that it could go in remission or that it could not need anymore, but if not then i'll just chill at home once a month and get a treatment. If it makes me feel better and normal, then so be it. I'll do anything not to feel like I have for the past 6 months or have another crisis like I did after delivery.
Thanks for all your prayers. Keep them coming. I'll try to update, but I can't promise that I'll be doing anything but spoiling Haley and taking care of myself when I get home for awhile.
Tuesday, February 17, 2009
Treatment #4
Tuesday February 17
Started treatment at 6:15am and it ended at 12:30pm. I am able to swallow better I ate ham, fruit and potato salad today and walked around the halls a few times. My last treatment is tomorrow morning and then I get to go HOME to see my baby Haley! God is good!
Started treatment at 6:15am and it ended at 12:30pm. I am able to swallow better I ate ham, fruit and potato salad today and walked around the halls a few times. My last treatment is tomorrow morning and then I get to go HOME to see my baby Haley! God is good!
Managing this Disease
So, MG is a disease that will have to be managed for the rest of my life. Its not curable, but can go into remission for years and years and I can manage it. Stress is the main reason that MG flares up and can put your body into crisis. That is what I am in now is a crisis. Pregnancy just put way to much stress on my body and delivery caused me to go into a crisis.
From now on the name of the game low stress, low key, stress free environment. The more physical and emotional stress I have on my body, the more likely I will have problems. A slower paced life is my life now and many people manage work, kids, and life with MG, you just have to be aware of your body and the situations you are in and rest, stop and not let your body get into a stressful crisis. I can eventually workout and do things, just have to be aware of my body, feelings, thoughts, and situations going on all around. So if you are reading this, you better be nice to me and not stress me out or George will take you down... jk.. well sort of.. :)
From now on the name of the game low stress, low key, stress free environment. The more physical and emotional stress I have on my body, the more likely I will have problems. A slower paced life is my life now and many people manage work, kids, and life with MG, you just have to be aware of your body and the situations you are in and rest, stop and not let your body get into a stressful crisis. I can eventually workout and do things, just have to be aware of my body, feelings, thoughts, and situations going on all around. So if you are reading this, you better be nice to me and not stress me out or George will take you down... jk.. well sort of.. :)
Feelings/Throughs
So you are probably wondering how I'm holding up. With the improvements I see, although small to you are huge to me. When you feel so bad as I did, you will do anything. Many did not truly realize how bad I was. Probably my mom and George were the only ones that really knew how bad it was. I was basically just trying to be strong and make sure Haley was healthy. Now its my turn. Haley is healthy and happy and she needed a healthy mommy. Things that have given be strength:
1. Thought several times-why would you go to church all your life and to a christian college, sing all the songs, pray all the prayers and then not have faith and hope that God can heal? I have just kept the faith that if he could heal the blind man, he can heal me.
2. When I looked out my window in the hospital the other day I looked at the clouds and though, if he can create the beautiful clouds in the sky, he can do anything
3. All the prayers and kind thoughts, words from everyone has given me strength
4. Sunday morning at 10:45am I felt a sense that my name was being lifted up and I felt peace. I also felt a little more strength at this time. I knew I was being prayed for by many people and God was healing me.
So God is good and thats really been my strength. I pray that this hard experience will strengthen mine and George's faith as well as the rest of my family and friends. God is good and he has a purpose and a reason for everything that happens in life.
1. Thought several times-why would you go to church all your life and to a christian college, sing all the songs, pray all the prayers and then not have faith and hope that God can heal? I have just kept the faith that if he could heal the blind man, he can heal me.
2. When I looked out my window in the hospital the other day I looked at the clouds and though, if he can create the beautiful clouds in the sky, he can do anything
3. All the prayers and kind thoughts, words from everyone has given me strength
4. Sunday morning at 10:45am I felt a sense that my name was being lifted up and I felt peace. I also felt a little more strength at this time. I knew I was being prayed for by many people and God was healing me.
So God is good and thats really been my strength. I pray that this hard experience will strengthen mine and George's faith as well as the rest of my family and friends. God is good and he has a purpose and a reason for everything that happens in life.
ITS GOLD!!!
So when they tell you that each bottle of the IVIG is $10,000, you have to have HOPE. I will post a picture of the bottles. We have taken a few of the precious gold. I just think this is so cool, that God created so many minds to create such an awesome treatment that can help heal people.
Monday, February 16, 2009
IVIG Treatment
Treatments #1-Feb. 13th-Went well, no improvements noticed.
Treatment #2 Feb. 14th-Had a few setbacks, didn’t finish treatment until Sunday night. Set me back a day in treatment time. Improvements: Could wash hands by myself, get my own soap, towel, and lift arms to wash. I could not lift my arms prior to this.
Treatment #3 Monday Feb 16th Increased rate to 55ml/hr. After the initial nurse freaking out in my room about how he had never done this and was a little nervous, we got going and the treatment went well. Improvements: Took a shower, could lift arm to wash hair. Swallowing is better. Ate 3 cups of mashed potatoes with butter and gravy and 3 shakes.
This is the first time in my life I’m asking for whole milk, butter, real sprite, blue bell ice cream. There are so many muscles in the throat that have to move when you talk/eat. I have to limit chewing to not tire out and get as many calories as possible in a small amount of food. I tell everyone I’m a dietitian and that stops most of the hassle as far as the eating part is concerned. I know what to do, just never thought I’d have to do it on myself and be drinking thickened liquids. I am drinking more sprite and getting off the thicker liquids.
Treatment #4: Tuesday Feb 17th. –Currently in progress. More to come.
Treatment #2 Feb. 14th-Had a few setbacks, didn’t finish treatment until Sunday night. Set me back a day in treatment time. Improvements: Could wash hands by myself, get my own soap, towel, and lift arms to wash. I could not lift my arms prior to this.
Treatment #3 Monday Feb 16th Increased rate to 55ml/hr. After the initial nurse freaking out in my room about how he had never done this and was a little nervous, we got going and the treatment went well. Improvements: Took a shower, could lift arm to wash hair. Swallowing is better. Ate 3 cups of mashed potatoes with butter and gravy and 3 shakes.
This is the first time in my life I’m asking for whole milk, butter, real sprite, blue bell ice cream. There are so many muscles in the throat that have to move when you talk/eat. I have to limit chewing to not tire out and get as many calories as possible in a small amount of food. I tell everyone I’m a dietitian and that stops most of the hassle as far as the eating part is concerned. I know what to do, just never thought I’d have to do it on myself and be drinking thickened liquids. I am drinking more sprite and getting off the thicker liquids.
Treatment #4: Tuesday Feb 17th. –Currently in progress. More to come.
MG-My Story
Here is a timeline of my feelings/diagnosis:
September-
Just felt tired and weak, thought it was just the pregnancy
October-
Went to a football game and had difficutly climbing up the stairs, thought it was weight added by the baby.
November-
-Began having trouble putting my clothes on. George had to help me.
- Had Thanksgiving dinner at my house, so worn out, couldn't hardly make anything except deviled eggs and I was exhausted.
December-
-Went to mavericks game, couldn't go get my food and carry it and walk down the stairs
- Could barely climb up a step at grocery store or get up off the couch
-Had trouble swallowing pills
-Could barely walk into the school building from my car, I felt like I would fall
-Had trouble raising my arms up to wash hair in the shower
January-
-Talked with Dr. Ford about the weakness, he said MG, but sent me to a neurologist, said this was not normal pregnancy symptoms
- Did not go back to work, felt as if I couldn't walk into building by myself and very anxious about being around everyone
-Jan. 2nd-Saw 1st Neurologist -QUACK... said he thought it was Muscular Dystrophy (not going back to him)
-Jan 10th-Saw high risk baby doctor, Haley looked good and no problems as far as the pregnancy was concerned discussed delivery with having MG (still no diagnosis, but Dr. Ford had said it first, and after reading I knew it was also just by how I felt and everything I read)
-Jan. 8th-Saw 2nd Neurologist-Said he thought it was MG, didn't want to do any tests until March 10th after baby was born
-He did though recommend and talk with Ob doctor to get my care changed to Fort Worth with Dr. Hardick (BEST MOVE). Although Dr. Ford is good, he is not into high risk and Cleburne definitely is not the place to be (once again, BEST DECISION)
-Jan. 30th Went to see 3rd Neurologist Dr. Nations. She worked me in and spent 3-4 hours with me doing EMG and muscle testing and diagnosed the me with MG. Started me on Mestinon medication. The only reason I got into see her was because of Mindy Shaw and the MDA association. Dr. Nations is a professor and specialist in MG and sees rare cases like mine.
-Decided to induce Feb. 10th at Baylor All Saints Hospital with Dr. Hardick
September-
Just felt tired and weak, thought it was just the pregnancy
October-
Went to a football game and had difficutly climbing up the stairs, thought it was weight added by the baby.
November-
-Began having trouble putting my clothes on. George had to help me.
- Had Thanksgiving dinner at my house, so worn out, couldn't hardly make anything except deviled eggs and I was exhausted.
December-
-Went to mavericks game, couldn't go get my food and carry it and walk down the stairs
- Could barely climb up a step at grocery store or get up off the couch
-Had trouble swallowing pills
-Could barely walk into the school building from my car, I felt like I would fall
-Had trouble raising my arms up to wash hair in the shower
January-
-Talked with Dr. Ford about the weakness, he said MG, but sent me to a neurologist, said this was not normal pregnancy symptoms
- Did not go back to work, felt as if I couldn't walk into building by myself and very anxious about being around everyone
-Jan. 2nd-Saw 1st Neurologist -QUACK... said he thought it was Muscular Dystrophy (not going back to him)
-Jan 10th-Saw high risk baby doctor, Haley looked good and no problems as far as the pregnancy was concerned discussed delivery with having MG (still no diagnosis, but Dr. Ford had said it first, and after reading I knew it was also just by how I felt and everything I read)
-Jan. 8th-Saw 2nd Neurologist-Said he thought it was MG, didn't want to do any tests until March 10th after baby was born
-He did though recommend and talk with Ob doctor to get my care changed to Fort Worth with Dr. Hardick (BEST MOVE). Although Dr. Ford is good, he is not into high risk and Cleburne definitely is not the place to be (once again, BEST DECISION)
-Jan. 30th Went to see 3rd Neurologist Dr. Nations. She worked me in and spent 3-4 hours with me doing EMG and muscle testing and diagnosed the me with MG. Started me on Mestinon medication. The only reason I got into see her was because of Mindy Shaw and the MDA association. Dr. Nations is a professor and specialist in MG and sees rare cases like mine.
-Decided to induce Feb. 10th at Baylor All Saints Hospital with Dr. Hardick
Myasthenia Gravis-What is it?
Many have questions about what is MG? Go to the about MG section to learn more. 20/100,000 people have MG and everyone is different. Its not a disease that has one treatment that works for all. Everyone is different and everyone has different symptoms and treatments that work.
http://www.myasthenia.org/
http://www.myasthenia.org/
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