Bytemi
New member
Yes me too. :banghead:
-
There were many reasons for the change of the site software, the biggest was security. The age of the old software also meant no server updates for certain programs. There are many benefits to the new software, one of the biggest is the mobile functionality. Ill fix up some stuff in the coming days, we'll also try to get some of the old addons back or the data imported back into the site like the garage. To create a thread or to reply with a post is basically the same as it was in the prior software. The default style of the site is light colored, but i temporarily added a darker colored style, to change you can find a link at the bottom of the site.
Update on Bytemi and Little Bytemi (Antonia) :)
- Thread starter Bytemi
- Start date
Yes me too. :banghead:
Lamonster
SpyderLovers Founder
I don't know how I missed this post before yesterday but I read through all that you and your daughter have been through and are still going through and it brought tears to my eyes. You have a great attitude and obviously a strong spirit. I can't say that I would hold up as well and even now I think of how petty my problems are when I stack them up next to yours. I shared this with my wife last night and we both prayed for you and your daughter this morning. I really don't know what else to do or say but you do have the love and support of many people here on the board and I'm glad to hear things are getting a little better. You guys will continue to be in our prayers and I will think twice before I complain about anything going on in my life again.
nojoke
nojoke
Bytemi
New member
God never gives us more than we can handle. Obviouslly because I am still here and fighting even after the recent events. I could just use a little bit of a break. Just give me a couple weeks without any shoes dropping and giving me time to recover. Amen!
ray:
Bytemi
New member
What a Weekend!
Wow, the first rides of the season for Antonia and I were amazing.
I am not sure if I have previously mentioned this but Antonia has been having a lot of problems with a girl at school bullying her. From calling her stupid, to making fun of her because of the CI to calling her stupid. There has been at least one fight that ended with a broken soap dispenser in the girls bathroom. It has been really rough on her. So on Friday I left work early because I was sick. I went home and took a nap and felt a little better so when Erik and Jessa got home from work/school I told them to grab their gear, we were going to pick up Antonia, I thought we would make her feel special being picked up the Spyder. So we geared up and went the school. I grabed her gear out of the frunk and we walked into SACC. By the time we got in there, she had her jacket on and was gathering her bookbag. I walked up behind her and said "wrong jacket, put this on!" She turned around and screamed "You brought Billie!" and hugged me. We put the motorcycle jacket on and I handed her the helmet and like every day said "go say goodbye to your friends" (the autistic like symptoms of CI, not being socially aware).
She ran over to group of girls and started giving hugs and saying goodbye. I did not expect the hypnotizing effect the jacket and helmet would have on all of the kids, even the bully. The girls were so excited about the pink skulls and the cool black jacket with embrodery. At least three times I heard Antonia say "No, you never put on another persons helmet, its personal". LOL
So we left the gym and got geared up to leave when Antonia asked "can we take the long way home, I don't want this to end!". I looked back and all the kids and SACC teacher were at the door watching. I motioned Antonia to look and she turned, then waved and off we went the long way home. Of course I spend the rest of the night in bed sicker than a dog, but I held it together at the school and Antonia felt very special. :yes:
Saturday Antonia asked to make cupcakes (I can post pictures if you really want to see them) so I told her we had to run to Food Lion. When she asked if she could wear flip flops I said "No!" "We are taking Billie, YAY!!!!!!!!!!!!!" and she ran out of the room. Of course the 3 minute ride to the grocery store turned into 30 minutes and she proudly walked around Food Lion carrying her helmet. One lady stopped us and asked what do you do with the bags when you are on the bike. Antonia cut me off and said "They go in the F*ck". LOL I corrected her and said frunk, then expained to the lady what a frunk was and off we went the long way home again.
Sunday we went out for a good 3 hour ride to go to target 4 towns over to fix another bullying problem and Antonia wearing dresses. We grabbed lunch and just had a great day of riding.
All and all Antonia, Billie and I had a great weekend! Oh and Antonia wore a dress to school today for the first time in months, so no taking Billie. Maybe tomorrow we can Billie to therapy.
Wow, the first rides of the season for Antonia and I were amazing.
I am not sure if I have previously mentioned this but Antonia has been having a lot of problems with a girl at school bullying her. From calling her stupid, to making fun of her because of the CI to calling her stupid. There has been at least one fight that ended with a broken soap dispenser in the girls bathroom. It has been really rough on her. So on Friday I left work early because I was sick. I went home and took a nap and felt a little better so when Erik and Jessa got home from work/school I told them to grab their gear, we were going to pick up Antonia, I thought we would make her feel special being picked up the Spyder. So we geared up and went the school. I grabed her gear out of the frunk and we walked into SACC. By the time we got in there, she had her jacket on and was gathering her bookbag. I walked up behind her and said "wrong jacket, put this on!" She turned around and screamed "You brought Billie!" and hugged me. We put the motorcycle jacket on and I handed her the helmet and like every day said "go say goodbye to your friends" (the autistic like symptoms of CI, not being socially aware).
She ran over to group of girls and started giving hugs and saying goodbye. I did not expect the hypnotizing effect the jacket and helmet would have on all of the kids, even the bully. The girls were so excited about the pink skulls and the cool black jacket with embrodery. At least three times I heard Antonia say "No, you never put on another persons helmet, its personal". LOL
So we left the gym and got geared up to leave when Antonia asked "can we take the long way home, I don't want this to end!". I looked back and all the kids and SACC teacher were at the door watching. I motioned Antonia to look and she turned, then waved and off we went the long way home. Of course I spend the rest of the night in bed sicker than a dog, but I held it together at the school and Antonia felt very special. :yes:
Saturday Antonia asked to make cupcakes (I can post pictures if you really want to see them) so I told her we had to run to Food Lion. When she asked if she could wear flip flops I said "No!" "We are taking Billie, YAY!!!!!!!!!!!!!" and she ran out of the room. Of course the 3 minute ride to the grocery store turned into 30 minutes and she proudly walked around Food Lion carrying her helmet. One lady stopped us and asked what do you do with the bags when you are on the bike. Antonia cut me off and said "They go in the F*ck". LOL I corrected her and said frunk, then expained to the lady what a frunk was and off we went the long way home again.
Sunday we went out for a good 3 hour ride to go to target 4 towns over to fix another bullying problem and Antonia wearing dresses. We grabbed lunch and just had a great day of riding.
All and all Antonia, Billie and I had a great weekend! Oh and Antonia wore a dress to school today for the first time in months, so no taking Billie. Maybe tomorrow we can Billie to therapy.
Bob Denman
New member
Now all we need, is to get you healed up... :shocked: :thumbup:
Bytemi
New member
I don't think I have any more healing left in me. Where I am is where I am.
Bob Denman
New member
Dig DEEP! :thumbup: We know that there's a whole lot more fight left in you! 
Bytemi
New member
Little Bytemi Graduated From Vision Therapy
Little Bytemi had her last evaluation with Dr. Davis and she has officially graduated from Vision Therapy. All of her primitive reflex problems have been resolved. She is no longer seeing double and her last report from the school, stated that she was reading above grade level! The doctor said that she has a little bit of a focusing problem, but he believes that will resolve itself over the next couple months. So she will be going back in October for another evaluation to make sure that everything is still OK. She has worked so hard over the last year and it really shows.
You have all been so supportive! Thank you.
Adele
Little Bytemi had her last evaluation with Dr. Davis and she has officially graduated from Vision Therapy. All of her primitive reflex problems have been resolved. She is no longer seeing double and her last report from the school, stated that she was reading above grade level! The doctor said that she has a little bit of a focusing problem, but he believes that will resolve itself over the next couple months. So she will be going back in October for another evaluation to make sure that everything is still OK. She has worked so hard over the last year and it really shows.
You have all been so supportive! Thank you.
Adele
Bob Denman
New member
:congrats:
Now... How are YOU feeling??
Now... How are YOU feeling??
Bytemi
New member
This is a celebration for Antonia! I will post tomorrow how I am doing.
Bob Denman
New member
:bbq: I can wait... :thumbup:
Bytemi
New member
Bytemi Update
Well I avoided this yesterday because I did not want to bring a shadow over Antonia's wonderful news.
As many of you know I have struggled with MS since 1996 and ryding Billie to be me is my way of saying "You can't win" to the MS. Every day is a struggle and trying to find some normalcy is not always easy. My eye sight has been seriously affected in the last couple of months due to stress and other factors. The doctors put me on a new Medication about a month ago and this is how that went:
I watched Tecfidera through the FDA and watch in amazement when the only major side effect reported were flushing and food poisoning. I was so excited that there was finally a drug that I could take.
I started Tecfidera on May 12, 2013 (mothers day) and I was so excited and hopeful. The first week filled me with such joy. My ears got burning hot a couple times and felt uncomfortable and my skin was itchy, but nothing that I couldn’t deal with. On May 19th, I increased my dose. The aspirin and yogurt seemed to continue working other than some nausea that I started experiencing. Still I was so excited and everything was great. For the first time in years I was able to sleep all night without my legs hurting and spasming and my eye sight was start to improve. You have no idea how excited I was. On May 23rd my world changed. The nausea was replaced with diarrhea and throwing up. But still it was totally manageable. I started replacing the fluids so I would not dehydrate.
On May 24th, I went to work after following my now new routine and about 2 hours later a sharp almost debilitating pain started in my intestines. I had no choice but to push through the rest of my day at work, which was mixed with hysterical crying and being doubled over in pain. I finally went home and spent the night the same way I spent the day, pain, bathroom, pain again. I ended up taking a Zanax that night so I could sleep and get some rest.
On May 25th, my husband and I quickly realized that there was no way I could ride in Rolling Thunder like this and we cancelled our plans for Sunday. The rest of the day with spent in pain or in the bathroom and no meals were consumed. On May 26th, I woke up took my pills, ate my yogurt and the entire process started all over, a lot more crying from pain. Around 2:00 I got up to go to the bathroom and I passed out. My husband picked me up and took me to the ER. He explained that this was an expected side effect to the Tecfidera and he was pretty sure I was just dehydrated. All of this while I curled up in a chair, crying from pain and feel disoriented. I was scared. The ER doctor (Dr. Lucky, I’m not joking) was very nice and tried to find a cause not related to the medicine. After three more trips to the bathroom and some blood test, my legs started to seize, then my back and then my arms. Now I am laying a hospital bed trying to massage spasms out in every inch of my body while doubled over in pain from my abdomen. Dr. Lucky told me that all my blood test came back normal and started me on saline (2 bags), valium, morphine and a muscle relaxer.
Dr. Lucky told my husband that I needed to eat something and sent me home with Oxycodone. I had a couple bites of rice and then I was done. The Oxy knocked me out nicely other than the continued trips to the bathroom.
On May 27th , I spent the day drugged out and in pain and visiting the bathroom. My husband said that he would stay home with me on Tuesday so we could call the Neurologist and figure out how to deal with these side effects.
On May 28th, I called the patient help line and I was told that they would not fit me in until Thursday so I spent the next 2 days in pain, drugged and visiting the bathroom. Still unable to eat.
May 30th, I visited the Neurologist finally and I failed all the standard tests to see how the MS was doing. Not surprising I had been in bed for week, unable to eat, I was drugged on Oxy and I couldn’t think. The doctor gave me Levsin to the intestinal spasms an send me home more Oxy for the pain. I started taking the Levsin immediately but it did not seems to help.
May 31st, the Levsin started working and the pain was decreased enough to stop taking the Oxy. The diarrhea continued but the pain was relieved a little so I considered it progress. That night I ate a 9 year old size meal for the first time in 8 days and I thought I was on an upswing.
The next few days other than returning to work, went about the same, limited pain and diarrhea and able to eat really small meals, which appeared to make the pain worse, so I ate what I had too, then stopped. On June 5th, I woke up with a terrible headache, which I instantly recognized as a dehydration headache. Dang it!!!! I called the infusion center as directed by my Neurologist and drove out to get fluids and return to work. When I got there I was told that I was dangerously dehydrated and I had lost 17 pounds making me 10 pounds underweight, 8 bags of saline and a bag of magnesium later, I was told that it was possible that I had a C Diff infection (results are expected tomorrow). I was told to stop taking the Tecfideria for Wednesday night and skip Thursday all together so I could eat a normal size meal, then start taking it again.
So I followed the instructions. On Thursday, June 6th, I felt off. It was like I wasn’t thinking normally, but the pain was gone for the most part, the diarrhea stopped and I ate 3 full meals. About half way through the day, a new pain in the back of my head developed which was easily treated with Alieve. On June 7th, I took the Tecfidera again in the morning according to my new routine, the pain in my head was still there but I didn’t think much of it. About 3 hours later the debilitating pain in my abdomen returned and I was hysterically crying at work. I called the neurologist office and I was told that the side effects were too sever and I was to stop the Tecfidera. What a disappointment. But it was controlling the MS!
June 7th, I woke up with the same pain in the back of my head, but again Alieve seemed to fix it so I tried to continue with my day. My husband and I took our 15 year old daughter to CarMax to look at cars. While we were walking through the lot, my vision went blurry and there were white lines streaking through my vision. Then the center of my right eye went completely white and I couldn’t see out of it at all, that is when my hand went numb and my speech got messed up and I could not form thoughts. So off to bed I went again.
My vision is still not right. I think I figured it out. My right eye is blurry and not seeing colors. The pain is gone from the back of my head and even through all of this I got Antonia to her therapy and final evaluation. I find it funny how much strength a person a can find in order to support another.
So I have not been able to ride, which sucks. I haven't really been able to do anything. I have a bare minimum energy to get through the day and deal with the stresses of my life. For legal reasons I have left out a huge chunk of what else has been happened, but next Wednesday I will be in court and if all goes well, I will be able to talk about it afterwards.
So Bob, that is my update. Aren't you glad you asked! :shocked:
Well I avoided this yesterday because I did not want to bring a shadow over Antonia's wonderful news.
As many of you know I have struggled with MS since 1996 and ryding Billie to be me is my way of saying "You can't win" to the MS. Every day is a struggle and trying to find some normalcy is not always easy. My eye sight has been seriously affected in the last couple of months due to stress and other factors. The doctors put me on a new Medication about a month ago and this is how that went:
I watched Tecfidera through the FDA and watch in amazement when the only major side effect reported were flushing and food poisoning. I was so excited that there was finally a drug that I could take.
I started Tecfidera on May 12, 2013 (mothers day) and I was so excited and hopeful. The first week filled me with such joy. My ears got burning hot a couple times and felt uncomfortable and my skin was itchy, but nothing that I couldn’t deal with. On May 19th, I increased my dose. The aspirin and yogurt seemed to continue working other than some nausea that I started experiencing. Still I was so excited and everything was great. For the first time in years I was able to sleep all night without my legs hurting and spasming and my eye sight was start to improve. You have no idea how excited I was. On May 23rd my world changed. The nausea was replaced with diarrhea and throwing up. But still it was totally manageable. I started replacing the fluids so I would not dehydrate.
On May 24th, I went to work after following my now new routine and about 2 hours later a sharp almost debilitating pain started in my intestines. I had no choice but to push through the rest of my day at work, which was mixed with hysterical crying and being doubled over in pain. I finally went home and spent the night the same way I spent the day, pain, bathroom, pain again. I ended up taking a Zanax that night so I could sleep and get some rest.
On May 25th, my husband and I quickly realized that there was no way I could ride in Rolling Thunder like this and we cancelled our plans for Sunday. The rest of the day with spent in pain or in the bathroom and no meals were consumed. On May 26th, I woke up took my pills, ate my yogurt and the entire process started all over, a lot more crying from pain. Around 2:00 I got up to go to the bathroom and I passed out. My husband picked me up and took me to the ER. He explained that this was an expected side effect to the Tecfidera and he was pretty sure I was just dehydrated. All of this while I curled up in a chair, crying from pain and feel disoriented. I was scared. The ER doctor (Dr. Lucky, I’m not joking) was very nice and tried to find a cause not related to the medicine. After three more trips to the bathroom and some blood test, my legs started to seize, then my back and then my arms. Now I am laying a hospital bed trying to massage spasms out in every inch of my body while doubled over in pain from my abdomen. Dr. Lucky told me that all my blood test came back normal and started me on saline (2 bags), valium, morphine and a muscle relaxer.
Dr. Lucky told my husband that I needed to eat something and sent me home with Oxycodone. I had a couple bites of rice and then I was done. The Oxy knocked me out nicely other than the continued trips to the bathroom.
On May 27th , I spent the day drugged out and in pain and visiting the bathroom. My husband said that he would stay home with me on Tuesday so we could call the Neurologist and figure out how to deal with these side effects.
On May 28th, I called the patient help line and I was told that they would not fit me in until Thursday so I spent the next 2 days in pain, drugged and visiting the bathroom. Still unable to eat.
May 30th, I visited the Neurologist finally and I failed all the standard tests to see how the MS was doing. Not surprising I had been in bed for week, unable to eat, I was drugged on Oxy and I couldn’t think. The doctor gave me Levsin to the intestinal spasms an send me home more Oxy for the pain. I started taking the Levsin immediately but it did not seems to help.
May 31st, the Levsin started working and the pain was decreased enough to stop taking the Oxy. The diarrhea continued but the pain was relieved a little so I considered it progress. That night I ate a 9 year old size meal for the first time in 8 days and I thought I was on an upswing.
The next few days other than returning to work, went about the same, limited pain and diarrhea and able to eat really small meals, which appeared to make the pain worse, so I ate what I had too, then stopped. On June 5th, I woke up with a terrible headache, which I instantly recognized as a dehydration headache. Dang it!!!! I called the infusion center as directed by my Neurologist and drove out to get fluids and return to work. When I got there I was told that I was dangerously dehydrated and I had lost 17 pounds making me 10 pounds underweight, 8 bags of saline and a bag of magnesium later, I was told that it was possible that I had a C Diff infection (results are expected tomorrow). I was told to stop taking the Tecfideria for Wednesday night and skip Thursday all together so I could eat a normal size meal, then start taking it again.
So I followed the instructions. On Thursday, June 6th, I felt off. It was like I wasn’t thinking normally, but the pain was gone for the most part, the diarrhea stopped and I ate 3 full meals. About half way through the day, a new pain in the back of my head developed which was easily treated with Alieve. On June 7th, I took the Tecfidera again in the morning according to my new routine, the pain in my head was still there but I didn’t think much of it. About 3 hours later the debilitating pain in my abdomen returned and I was hysterically crying at work. I called the neurologist office and I was told that the side effects were too sever and I was to stop the Tecfidera. What a disappointment. But it was controlling the MS!
June 7th, I woke up with the same pain in the back of my head, but again Alieve seemed to fix it so I tried to continue with my day. My husband and I took our 15 year old daughter to CarMax to look at cars. While we were walking through the lot, my vision went blurry and there were white lines streaking through my vision. Then the center of my right eye went completely white and I couldn’t see out of it at all, that is when my hand went numb and my speech got messed up and I could not form thoughts. So off to bed I went again.
My vision is still not right. I think I figured it out. My right eye is blurry and not seeing colors. The pain is gone from the back of my head and even through all of this I got Antonia to her therapy and final evaluation. I find it funny how much strength a person a can find in order to support another.
So I have not been able to ride, which sucks. I haven't really been able to do anything. I have a bare minimum energy to get through the day and deal with the stresses of my life. For legal reasons I have left out a huge chunk of what else has been happened, but next Wednesday I will be in court and if all goes well, I will be able to talk about it afterwards.
So Bob, that is my update. Aren't you glad you asked! :shocked:
Bob Denman
New member
:shocked: you've been through the wringer; for sure... :shocked:
You guys are in our thoughts and prayers; HANG IN THERE! :thumbup:ray:ray:
You guys are in our thoughts and prayers; HANG IN THERE! :thumbup:
ray:ray:
Bytemi
New member
:shocked: you've been through the wringer; for sure... :shocked:
You guys are in our thoughts and prayers; HANG IN THERE! :thumbup:
Thanks Bob, just spoke to my Neurologist, going to a steroid infusion starting tomorrow. Need to have the IVs out before court. That was a stress I was not looking forward to adding. :banghead:
Bob Denman
New member
Well... here's hoping that if you've got to go throw it; it makes you feel better! :thumbup: :cheers:
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