Tuesday, July 21, 2009
She doesn't want to see me again until next July and wrote me a note to go back to work in August!
When she looked at me and said she couldn't believe it, I thought in my mind, "Nothing is impossible for God!" and it wasn't!
Monday, June 15, 2009
"For with God nothing will be impossible." (Luke 1:37)
"Yet you do not have because you do not ask." (James 4:2)
But He said, "The things which are impossible with men are possible with God." (Luke 18:27)
Monday, June 1, 2009
I thought this was really cool to watch. It just shows that MG has nothing to do with muscle mass or strength, but that its all about nerves and receptors and response. I was on that medication they give to the lady, but it didn't work, thats how they knew I must have a different form and its congenital and needed a different treatment. Check it out.
Tuesday, May 26, 2009
Saturday, May 9, 2009
I am feeling so good. Stronger and stronger everyday. I am keeping track of things I have done each day to send to my doctor and I honestly feel like I could go to the gym today I have so much energy and strength.
Thanks again for all your prayers, money for the trip, food, texts, concern and calls that everyone has given us during this time. It has been rough, but things are definitely looking up for the Price family. Now we can enjoy our summer and be ready for August when I can go back to work!! YAY!!
Wednesday, May 6, 2009
Tuesday, May 5, 2009
Dr. Engel gave me three of his research publications that I had asked for. I really wanted to read his research. He said that he has seen 450 CMS patients since the 1970s. This is such a rare disease. I guess now he can say he has seen 451 patients with my new diagnosis. He is the world expert in CMS and he said he just saw his first MG patient and then liked it so he decided to continue research.
I see him tomorrow again at 11 o'clock to see how the medicine has worked and then I will be free to go. It is crazy that it has taken 22 years to get a clear diagnosis of what has been going on in my life. Dr. Engel is a funny, nice, smart man and I'm so glad he decided to do this research and investigate.
Monday, May 4, 2009
Today was very busy, but I met all of my appointments and met Dr. Engel. He is a very nice older man and was easy to talk to. He didn't have all the answers and said that the genetic testing that Mom, Dad, Sara, and I sent in would not be tested for 3 months to a year. Wow-not what I expected or wanted to hear. We got a letter in the mail that said that they had determined our families neuromuscular disease, but apparently not cause he said he needed our blood and I told him it was already done. The people here at the Mayo are very friendly and nice. They all comment on how we came at the right time of the year because the weather is nice.
So I had to explain my life story once again for the 6th time since January to the 6th Neurologist and did the same tests (lift your leg, squeeze my hand, etc.) for the 6th time. I should be a Neurologist cause I know the routine now. He said he thinks it is Congenital Myasthenic Syndrome (CMS) cause I had problems when I was young, and did not respond to treatments. We asked him several questions about why this or why that, and he really had no answer. Said that all myasthenic patients are different and that it just depended on the person and the severity of the case. I asked him why in the last 2 weeks I got better and he had no answer. So, tomorrow I'm going to preach to him and just tell him that God healed me and that's why he does not have the answers.
Tomorrow I have another EMG (3rd time to do one) where they shock your muscles several times and then stick a needle in one of your muscles and test it. Then we are going to meet Dr. Engel at 3:30 again and he is going to give us the results of the EMG and start some medicine-an Albuterol pill. Interesting I know, but I read that it is a treatment for CMS. Then he wants me to stay in town for 24 hours and see him again Wed. to make sure I have no side effects from it and to see how I'm doing.
The only flight out on Wed. is at 5:55pm, so I'm not sure we will not make it, but we will try. If not our flight is set for Thurs. at 7:00am. So we shall see.
We are waiting... oh and eating....
View from the Mayo Clinic...
Sunday, May 3, 2009
I cannot eat after 7 tonight because of my labwork tomorrow and I cannot sleep more than 4 hours tonight because of a sleep test I have to do in the morning. So I'm sure I'll be online tonight because I'll be awake and can't eat.
7:30am- Sleep study EEG
10:30-Lab Blood Work
Thats all we have so far.. I'll let you know after I see Dr. Engel tomorrow what our plans are for the week.
Saturday, April 25, 2009
1. Took her out by myself somewhere-ok if BigLots counts
2. Lifted her into the car by myself and took her out
3. Lifted her out of the bathtub for the first time since she was born
4. Took her to see Daddy at work
5. Raised her up on my shoulder to hold her
6. Walk around the house holding her
7. Moved her around in her fun play toys-lifting her in and out of her swing and then into the bumbo etc.
8. Actually got on the floor with her to play and could get back up by myself
Things being sick teaches you:
1. Never take a day for granted
2. Live in the moment because you never know what tomorrow might be like
3. Don't store up treasures on earth because when you are at the bottom nothing really matter but how you have treated people and how you have lived your life
4. Nothing in life in guaranteed and it could change at any moment
5. Everyone has a struggle in life, whether its family problems, financial problems, health problems, etc. Don't feel sorry for yourself, but learn to adapt and manage the situation you are in
6. Prayer is the most important thing in life
7. When you feel good, use the money and time you have to help others, it makes a huge impact on a person when they are feeling low
8. Small petty things in life don't matter
9. Never take your body and health for granted, be thankful when you wake up to go to work that you can get up and put your clothes on
10. Last but not least, love your family, they are the ones who will come through in tough times and stick by you through it
Next Sunday we are heading out! I've become pretty attached to my little girl, we have been through a lot together the past 11 months or so. It's going to be hard to leave her, even if it is a couple of days and I know her Gramma and Grandfather are going to spoil her while they are here, but her mamma's got to go get some answers from the experts. I'll post a big blog next week when I get home! Please keep praying for our trip, save return, and for Dr. Engel and the people at the Mayo Clinic who I will be seeing!
Sunday, April 19, 2009
Friday, April 17, 2009
Sunday-Church and Wal-Mart
Tuesday-Haley's Doctors Appointment
Wednesday-Went to Mom's school and ate lunch with Haley, Church
Thursday-Hobby Lobby, Rosa's, Target
Friday-Barrera's for dinner with Brandon, Mary and Lindsey
Saturday-Plans to go to Hillsboro to the Gap and eat at iHOP
WOW!!- Big week for me and I felt really good doing all of these things. I have no real explanation for it, but I'll give the credit to God and prayer.
Our flight, hotel and rent car are all booked. Two weeks until the big trip. I feel kind of like I'm going to see a movie star or something. Dr. Engel is one of two people in the USA that does the research and testing for CMS, and I think I might just get my picture made with him when I see him Monday the 4th!
Thursday, April 9, 2009
Wednesday, April 8, 2009
They are also sending me a test kit where Mom, Dad, Sara and I have to give a blood sample where they are going to do some genetic testing on it before I get there. I think they are going to let Haley off the hook on the blood work since she is only 8 weeks old.
Monday, April 6, 2009
If you are in need of some reading material, here is a little essay written by a lady that kind of sums up how I feel right about now. My favorite line is "The disease is in control, I have to accept not being able to spin the wheel and I have to just live with the results. Hopefully, those around me will learn to accept this too." So true!!
Another example is called the "Spoon Theory". I'll shorten it for your reading pleasure..
I start the day with 12 spoons. Each time I do something it take a spoon away. The spoons represent energy or movement. So, you say you first get ready for work. No, I say I wash my hair-minus 1 spoon.
Brush my teeth-1 spoon
Dry my hair-1 spoon
Get breakfast-1 spoon
Eat breakfast-1 spoon
Put my shirt on-1 spoon
Walk into work-1 spoon
Work-Lets just be conservative and say -3 spoons which we know would be more
After work-1 spoon left... what shall I do.. shower, eat, clean, oh and if I do more than that one spoon then it takes away from my 12 spoons that I start with tomorrow..
Thought this was a good little example of how to explain to someone about a neuromuscular disease like CMS.
My appointment is still set for May 26th in Minnesota at the Mayo Clinic. I am working daily to get that moved up asap, but I have to jump through the hoops first and beg. I have already done some begging this morning with them on the phone, so maybe if I nag them daily I will be in Minnesota in no time! Please begin to pray for this trip and for some answers and help!
Thursday, April 2, 2009
She wants me to up my prednisone 60mg for a month just to try and see if anything happens. She also wants to stop my IVIG treatments, but I talked her into letting me finish out the month and do 2 more treatments and then stop, just to see.
So, thats the news. I didn't get the real answers I was wishing for, but with this diagnosis, things arn't crystal clear. So now my hope is in Minnesota and the doctors there. Road trip!!
Tuesday, March 31, 2009
- When I say function it is not function like before. Weakness and fatigue are our everyday companions.
- The bright side of MG is what you learn to do that most everyone else never learns and that is to prioritize, organize and move with ergonomic efficiency.
- The name of the game with every thing you do is “How can I minimize movement?” “How can I do what I want to do within the limits of my strength?”
- You just have to get creative and do things a bit differently.
- Our bodies declared war on itself, weird isn’t it.
- My hands are not my chief nemesis
- Remission for MG is not a cure but in comparison you feel cured because it is strength you have rarely known in your life.
She is great and has really encouraged me to not lose hope and focus and to just be creative. George has lowered all of our hooks and racks around the house, mom purchased me a hair dryer stand, and I bought some plastic plates and bowls so that if I drop them it will just bounce back. The name of the game is modification, accommodations, and creativity.
One thing I would like to educate others about is that MG is not something that can be controlled or have a quick fix. Many people tell me to just get some weights, or get some rest, or take a pill and you will get stronger. MG is an autoimmune disease and the body feels the need to destroy the receptors between our nerves and muscle. The connection is not being made and it has nothing to do with strength or exercise or eating, etc. Messages in the body are reaching the brain at a different rates due to a lack of receptors between nerve and muscle tissue. Think of all the muscles in your body, and how many parts this effects. It moves around my body from day to day. Some days its my fingers, wrists, arms, legs, feet, throat, neck, eyes, back and tongue. One day I can put my hair towel over my hair, and the next day I can't. One day I can get out of the chair, and 5 minutes later I can't. Rest is key and the less I do something the easier it is to do once. I have always been an educator and I believe that the only way to truly understand what someone is going through is to live it, but the next best way to understand is being educated yourself.
Thursday, March 26, 2009
So, I have made me an appointment at the Mayo Clinic in May in Rochester Minnesota. They see 350 MG patients a year. They say prepare to stay a week and meet with some of the best neuromuscular specialists. I am looking at plane tickets and starting to plan. My goal is to go back to work in August, and time is not on my side. I don't want to look up and it be August and I'm still sitting here feeling bad. Not to say that going there will be a miracle, but its a shot and I'll do anything at this point.
I have learned to manage and adapt pretty well. This disease messes with your mind because there is truely nothing you can do to fix it, and no explanation as to why you can do something one time and not the next. It really puts life into perspective when you wake up and think, "I should be happy, I can swallow and breath." Thats pretty much what I say each morning.
Here are just somethings we take for granted that I have trouble doing now. Hopefully soon I can read this and be doing them again:
1. Brush my teeth standing up straight
2. Put my shirt on or take it off standing up straight
3. Brush my hair with one hand
4. Put my hair up in a pony tail without laying on the bed or in a chair
5. Get a glass bowl out of a tall cabinet
6. Stand up out of a low chair
7. Sit on the floor and be able to get up
8. Lift my fork to my mouth without having to rest my elbow on the table
9. Walk and carry Haley or put her car seat in the car
10. Climb stairs
So if you think you are having a bad day, if you can do those things above, I'd say you are doing pretty good!!
Monday, March 2, 2009
Thursday, February 26, 2009
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.
Friday, February 20, 2009
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
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
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!
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.. :)
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.
Monday, February 16, 2009
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.
Just felt tired and weak, thought it was just the pregnancy
Went to a football game and had difficutly climbing up the stairs, thought it was weight added by the baby.
-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.
-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
-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