I started selling herbalife, and am having fun with it. I hope to do well with this product. So far, I have had great results on the product. I have more energy. I was able to run without consequences for the first time in ages. I am happy to get up, and I am able to go all day without too much trouble.
We did paint HWK's upstairs room black to create a Black Box. I was excited to do work for them so Benjamin can keep going without me feeling guilty. It took me a couple days of sleep to recover, but it wasn't as bad as I expected.
Damon doesn't think I can sell herbalife. He thinks it's just like all the other stuff out there. I don't blame them. I've tried almost everything, but without success. I hope this works for me. I want to prove him wrong, and I need the focus. I need something to do all day, and I want to earn extra money for my family so that we have enough to live off of. Medical bills suck.
Multiple Sclerosis
After five years, I have finally been diagnosed with MS. It was a ridiculous and difficult journey. I am happy to finally have answers, but it seems to have opened up a whole new level of trouble. I start Copaxone soon. I was just informed that our insurance has approved the medication and that they will ship it soon. I am nervous about doing the shots. I know I'll get used to it fast, but it will be good when it's here. I spent 10 days in the hospital with a massive flare-up. I went into the ER with severe tremors that looked like a seizure. I spent five days at Cenntennial where they did and MRI that showed new and old lesions on my brain. Based on the changes in my MRI they decided that I have MS. I was started on Solumedrol, and responded well. Then they transferred me to Sunrise hospital, which I will never return to. They did seizure monitoring there and I hated the whole experience. To top it all off, I do not have seizures, and the monitoring was mostly unnecessary.
Prior to these visits, I had to go to UCLA and the Lou Ruvo Clinic/Cleveland Clinic and see several specialists. The specialists told me I didn't have seizures, and that while I had all the symptoms of MS, but did not have the severe brain changes that would indicate a need for treatment. I don't know why that changed, but it did only one month later. Shaking all over is really scary. I can't stand it when it starts, and it is probably something I will deal with for a long time. I also now have the option of having a home nurse coming to my home for flare-ups to give me the high dose steroids via I.V. It is a lot of changes. In addition I have adrenal, and hormone issues, and my heart did weird things during this flare-up which suggests that I probably need to be monitored, if not have a pace maker put in. I am worried that my hear will slow down too much at night, and cause a problem.
Damon is amazing, but totally stressed out. He has had to take over everything, which isn't easy. I wish I could help him, but am too weak and sick still. It should take 3-6 months to see if the Copaxone works. In the meantime, I am a stay-at-home mom to a kid whose in school all day. Our finances are a mess, and we are really struggling everyday. I feel worst for Damon, and am worried about Benjamin. I sleep a lot during the day but cannot sleep at night. It's annoying to not be able to sleep at night, and my doctors are working on it.
Mostly, without my work, and other pursuits, I feel useless and bored. I don't like being weak and sick, and hope that I can recover more. I am weak from the hospital, and am working to regain my strength. It will take time, but we'll get there.
Prior to these visits, I had to go to UCLA and the Lou Ruvo Clinic/Cleveland Clinic and see several specialists. The specialists told me I didn't have seizures, and that while I had all the symptoms of MS, but did not have the severe brain changes that would indicate a need for treatment. I don't know why that changed, but it did only one month later. Shaking all over is really scary. I can't stand it when it starts, and it is probably something I will deal with for a long time. I also now have the option of having a home nurse coming to my home for flare-ups to give me the high dose steroids via I.V. It is a lot of changes. In addition I have adrenal, and hormone issues, and my heart did weird things during this flare-up which suggests that I probably need to be monitored, if not have a pace maker put in. I am worried that my hear will slow down too much at night, and cause a problem.
Damon is amazing, but totally stressed out. He has had to take over everything, which isn't easy. I wish I could help him, but am too weak and sick still. It should take 3-6 months to see if the Copaxone works. In the meantime, I am a stay-at-home mom to a kid whose in school all day. Our finances are a mess, and we are really struggling everyday. I feel worst for Damon, and am worried about Benjamin. I sleep a lot during the day but cannot sleep at night. It's annoying to not be able to sleep at night, and my doctors are working on it.
Mostly, without my work, and other pursuits, I feel useless and bored. I don't like being weak and sick, and hope that I can recover more. I am weak from the hospital, and am working to regain my strength. It will take time, but we'll get there.
Adjusting
Summer is a time of adjustment for our family. Damon is home all day, all the time, and it is hot! I love having Damon home, but when he gets bored, I never know what to do with him. Benjamin is going a little stir crazy, and right now I wish I'd had the foresight and the money to rent a house with a pool. We'll just have to set up a little one in the backyard, and hope Benjamin doesn't play in the mud too.
The 4th of July was spectacular. We swam, had chicken and rice (Benjamin's favorite), then we watched fireworks. We live close to Alliante station, so we found a nice spot in a nearby desert area, and waited. Benjamin is bad at waiting, but our fellow fireworks viewers set off lots of little ones for him to watch. We could also see hundreds of fireworks being set off all over the Las Vegas valley from where we were. It was pretty amazing. Alliante did a great show that I would love to see again. Benjamin loves the fizzy ones, and Damon loves the white ones that boom through your bones. I like the ones that zig zag across the sky. We even saw a few heart-shaped fireworks, which was awesome.
Me not working has also thrown our budget out of whack. We're trying to get me disability to help with medical bills, but we have to adjust to a lower income, and that has been another interesting dilemma.
Benjamin is adjusting to being the only child again. He adored Kindergarten because he had something to do, and his friends were there. I never thought I would say this, but I can't wait for first grade to start. He'll love the structure, and the interaction with peers, and I won't have to arrange any of it. Thank goodness he's signed up for some HWK classes this summer. He'll do a little Broadway, and then work on his dancing skills. He sometimes doesn't like to go to the classes, but he loves to perform. This last performance he was a little nervous, but he still went out there and did a great job. Hopefully I'll have the energy to help him learn his part better this year. Last year I taught during his class time, and so I didn't have much to do with it, and I think that was harder for him. The one blessing of not being able to work is that I have more time for him. He's growing so fast, and I don't want to miss one minute.
Finally, I am adjusting to my new medical state. My neurologist said that all signs point to MS, or Seizures or both. She is sure there is an autoimmune connection, and is willing to treat me as an MS patient, but since I'm going to UCLA, we're waiting for them to confirm the diagnosis, or maybe come up with something better. In the meantime I am doing all kinds of exciting tests to help speed that process up so when I get there, we'll hopefully be able to avoid a lot of extra testing. My new neurologist is awesome, and I adore the fact that she'll spend the time reviewing my history, and going over everything in great detail. I also am in love with the fact that she is willing to treat me "as if" and see if it works. Not one doctor has been willing to do so. If the treatment works, then the diagnosis is probably right.
I have been analyzing my life lately. If I am diagnosed, and successfully treated, I could possibly go back to working. It doesn't solve the fatigue, and fibromyalgia issue, nor does it address the fact that flare ups will make me unreliable. Regardless of what I choose, I cannot work full-time without getting really sick. So, the question is, do I finish school, and power through the internship? Do I return to teaching music, knowing that I won't always be available for my students, when consistency in practicing and lessons is so important? Do I find another job that I can do here and there to provide us with income. I might look into substitute teaching again, but that drains me for days afterwards.
I think I have come to the conclusion that I am done working, and I've had enough education that if something happened, I would be able to get a decent job. Not that I could do it, but I have the education and background, or could get it quick. Mostly I'm enjoying the benefits of being home with my son. I never realized how much I was missing. I want to have family dinners, and to actually cook them and sit down and eat together. I want to be more involved in Church and to be someone who is home and available to provide service. I want to read all those books, and do the crafts that I've put off for other things, and mostly I want to draw closer to the Lord and focus on the spiritual things in life for myself and my family. Somewhere in our business that got lost.
I am a perfectionist, and I love to be busy and doing. This illness has forced me to literally lie down and reconsider my priorities. I want to leave a legacy, but I can do that in so many ways. I would be a great counselor, but I would rather help and love my friends and family. We have enough money to meet our needs. Our budget is tight, but then so is everyone else's, and if I'm careful, and learn to save here and there, and cook more, I think we can have a brilliant life without me feeling the pressures of work and school. Besides, the reduction in stress will help me to avoid flare-ups.
I do need to be busy though. I need to find meaningful ways to use my time, and give myself permission to rest and be sick. I want to be one of those inspiring sick people if I have to be a sick person at all. So far, I just feel angry and whiney. There are so many choices in life. I just want to know which choice is right, and best for me and my family. A diagnosis would go a long way towards helping me make these decisions, but part of the journey is learning what is most important, and where my focus should lie regardless of my circumstances.
The 4th of July was spectacular. We swam, had chicken and rice (Benjamin's favorite), then we watched fireworks. We live close to Alliante station, so we found a nice spot in a nearby desert area, and waited. Benjamin is bad at waiting, but our fellow fireworks viewers set off lots of little ones for him to watch. We could also see hundreds of fireworks being set off all over the Las Vegas valley from where we were. It was pretty amazing. Alliante did a great show that I would love to see again. Benjamin loves the fizzy ones, and Damon loves the white ones that boom through your bones. I like the ones that zig zag across the sky. We even saw a few heart-shaped fireworks, which was awesome.
Me not working has also thrown our budget out of whack. We're trying to get me disability to help with medical bills, but we have to adjust to a lower income, and that has been another interesting dilemma.
Benjamin is adjusting to being the only child again. He adored Kindergarten because he had something to do, and his friends were there. I never thought I would say this, but I can't wait for first grade to start. He'll love the structure, and the interaction with peers, and I won't have to arrange any of it. Thank goodness he's signed up for some HWK classes this summer. He'll do a little Broadway, and then work on his dancing skills. He sometimes doesn't like to go to the classes, but he loves to perform. This last performance he was a little nervous, but he still went out there and did a great job. Hopefully I'll have the energy to help him learn his part better this year. Last year I taught during his class time, and so I didn't have much to do with it, and I think that was harder for him. The one blessing of not being able to work is that I have more time for him. He's growing so fast, and I don't want to miss one minute.
Finally, I am adjusting to my new medical state. My neurologist said that all signs point to MS, or Seizures or both. She is sure there is an autoimmune connection, and is willing to treat me as an MS patient, but since I'm going to UCLA, we're waiting for them to confirm the diagnosis, or maybe come up with something better. In the meantime I am doing all kinds of exciting tests to help speed that process up so when I get there, we'll hopefully be able to avoid a lot of extra testing. My new neurologist is awesome, and I adore the fact that she'll spend the time reviewing my history, and going over everything in great detail. I also am in love with the fact that she is willing to treat me "as if" and see if it works. Not one doctor has been willing to do so. If the treatment works, then the diagnosis is probably right.
I have been analyzing my life lately. If I am diagnosed, and successfully treated, I could possibly go back to working. It doesn't solve the fatigue, and fibromyalgia issue, nor does it address the fact that flare ups will make me unreliable. Regardless of what I choose, I cannot work full-time without getting really sick. So, the question is, do I finish school, and power through the internship? Do I return to teaching music, knowing that I won't always be available for my students, when consistency in practicing and lessons is so important? Do I find another job that I can do here and there to provide us with income. I might look into substitute teaching again, but that drains me for days afterwards.
I think I have come to the conclusion that I am done working, and I've had enough education that if something happened, I would be able to get a decent job. Not that I could do it, but I have the education and background, or could get it quick. Mostly I'm enjoying the benefits of being home with my son. I never realized how much I was missing. I want to have family dinners, and to actually cook them and sit down and eat together. I want to be more involved in Church and to be someone who is home and available to provide service. I want to read all those books, and do the crafts that I've put off for other things, and mostly I want to draw closer to the Lord and focus on the spiritual things in life for myself and my family. Somewhere in our business that got lost.
I am a perfectionist, and I love to be busy and doing. This illness has forced me to literally lie down and reconsider my priorities. I want to leave a legacy, but I can do that in so many ways. I would be a great counselor, but I would rather help and love my friends and family. We have enough money to meet our needs. Our budget is tight, but then so is everyone else's, and if I'm careful, and learn to save here and there, and cook more, I think we can have a brilliant life without me feeling the pressures of work and school. Besides, the reduction in stress will help me to avoid flare-ups.
I do need to be busy though. I need to find meaningful ways to use my time, and give myself permission to rest and be sick. I want to be one of those inspiring sick people if I have to be a sick person at all. So far, I just feel angry and whiney. There are so many choices in life. I just want to know which choice is right, and best for me and my family. A diagnosis would go a long way towards helping me make these decisions, but part of the journey is learning what is most important, and where my focus should lie regardless of my circumstances.
Sleep
I joined two support groups. One for fibromyalgia, and the other for multiple sclerosis. I relate more to the people with multiple sclerosis than those with fibromyalgia, although the symptoms and medications seem to be highly related. Maybe fibromyalgia is just an early form of MS.
Sleep has been a huge problem lately. Despite strong medications to help me sleep I seem to be running in ridiculous cycles. I will sleep about 20 hours, and then I'll sleep 2-4 hours for a few days, then back to 20. It is really frustrating. When I sleep during my longer sleep periods, I am impossible to wake up. Damon, Benjamin and alarm clocks have tried. I practically sleep standing up. When I can't sleep, there is nothing that will help me. I hate this cycle. It is especially hard since it is summer and Damon and Benjamin want to do things with me that my weird sleeping issues won't allow. When I don't sleep at night, I end up having to sleep sometime during the day, so either way, I'm missing out. From what I've read, it isn't uncommon for people with chronic illness to have sleep issues. It's one of the top complaints on all of the support groups and blogs I've read. Pain, sleep issues, and medication reactions. What a dream life we all lead.
I applied for disability yesterday. It was hard. I cried a lot, and I'm not even sure why. I think I feel lost. Where am I without work? We need help with them money, and I am certainly disabled by all this, but how do I prove that without a workable diagnosis and such. I've read it is common to be denied the first two times you apply, so it is better to apply early. I also need to get a referral for an MS specialist from my neurologist so I can see one at UCLA. Currently I am only approved to see a doctor who specializes in seizures, and nobody is sure if that is really even happening. It is possible this is all just fibromyalgia, but there are not real treatments for that, and there isn't even a good doctor in town that I can find. I don't know what to do about all that, but I am so tired, sore and sick of all this mess. I want so much more from my life, and can't have it. I cry a lot lately. I want to be happy, and move on, but so much is uncertain, and so much has been lost. What do I do?
Well, now it's time to be off, to digitize medical records, and copy them for the local social security office. I must also organize my records and have them sorted by disease, diagnosis, date, and supporting tests. It may take a while. There are also fun things to do today, and for that I am grateful. Sleep will always come later.
Sleep has been a huge problem lately. Despite strong medications to help me sleep I seem to be running in ridiculous cycles. I will sleep about 20 hours, and then I'll sleep 2-4 hours for a few days, then back to 20. It is really frustrating. When I sleep during my longer sleep periods, I am impossible to wake up. Damon, Benjamin and alarm clocks have tried. I practically sleep standing up. When I can't sleep, there is nothing that will help me. I hate this cycle. It is especially hard since it is summer and Damon and Benjamin want to do things with me that my weird sleeping issues won't allow. When I don't sleep at night, I end up having to sleep sometime during the day, so either way, I'm missing out. From what I've read, it isn't uncommon for people with chronic illness to have sleep issues. It's one of the top complaints on all of the support groups and blogs I've read. Pain, sleep issues, and medication reactions. What a dream life we all lead.
I applied for disability yesterday. It was hard. I cried a lot, and I'm not even sure why. I think I feel lost. Where am I without work? We need help with them money, and I am certainly disabled by all this, but how do I prove that without a workable diagnosis and such. I've read it is common to be denied the first two times you apply, so it is better to apply early. I also need to get a referral for an MS specialist from my neurologist so I can see one at UCLA. Currently I am only approved to see a doctor who specializes in seizures, and nobody is sure if that is really even happening. It is possible this is all just fibromyalgia, but there are not real treatments for that, and there isn't even a good doctor in town that I can find. I don't know what to do about all that, but I am so tired, sore and sick of all this mess. I want so much more from my life, and can't have it. I cry a lot lately. I want to be happy, and move on, but so much is uncertain, and so much has been lost. What do I do?
Well, now it's time to be off, to digitize medical records, and copy them for the local social security office. I must also organize my records and have them sorted by disease, diagnosis, date, and supporting tests. It may take a while. There are also fun things to do today, and for that I am grateful. Sleep will always come later.
Families
I could not survive my illness without my family, but it has had a toll on their well-being an that makes me sad.
Benjamin is very sad lately. He cries and whines, and he hates that someone has to babysit him. Fortunately summer is coming soon and then he can be home with me and his dad. His dad does crafts, and yells when he gets frustrated. Sometimes it is scary when he yells, but I understand why he needs to. There are so many things to do and to worry about. I want to yell at my sickness, take it out and punch it until it gives in. I want to beat it to a pulp and make it run away and leave me alone, but it won't.
I found a bunch of online support groups. They are helping me come to terms with what will happen. Hopefully by tomorrow I will know if I can schedule my appointment with UCLA. I will have to organize my medical files, and get some from my old PCP, but that's not too big of a deal. It is just hard to know what is important. I think I might even download the disability paperwork and have that all filled out and ready to go with me, or I'll turn it in right before, and then add UCLA's results to the mix. Either way, it will be interesting to learn how that process works.
I have also learned that fibromyalgia is a nasty disease, and have found support groups that deal with that. MS plus fibromyalgia is not a good combination, and I will probably struggle with fatigue forever. It is not uncommon for both groups to be put on stimulants, which concerns me, but if it helps me parent and the like then it may be worth a shot. I have tried them in the past with some success, but worried that they were worsening symptoms, or masking symptoms. I want to put them off until I have a better grasp as to what is wrong with me.
I found fabric to make Benjamin two quilts. One is a Mr. Happy quilt, and the other will be a treasure map quilt. He has tons of blankets, but he loves them, and I want him to have blankets that I gave him that he can pass on to his children. It may be all that they have to know me by.
Sleep continues to evade me. I try to sleep at night, and even take medications that are supposed to knock me out right away, but then I don't. I don't know if I just fight it, or if I'm always tired so I don't know the difference. Maybe I'm just resistant to such things. I am loopy though, and I forget things. Damon left to get celery in the grocery store today. He told me where he was going and everything, and I lost him. I couldn't find him, and didn't know where he was. It was a little scary. I'm afraid that one day I'll lose Benjamin, or my way home. I've forgotten and lost so many other things lately, that I wonder how my mind is ever going to keep up with all that is to come. I'm going to need a system. I think it's time to create a medical control journal like Flylady suggests. I just don't know where to start, or how to organize it.
For fun my family has been playing Mario on the Wii. Benjamin obsesses and got very upset when we failed to wait for him at one point. We had to stop playing, and he cried for a long time. He told me that he misses me when he goes to babysitting, and that he doesn't like it that I'm sick. I told him today that because of my illness it might be harder for us to adopt, and he cried and said that he would have no one to play with. He is worried about first grade and all the changes, and wonders who will be his friend if he doesn't have brothers or sisters. We had to talk about how we have friends at church and school, and that his cousins and such are his friends and will play with him.
The other day Benjamin asked what would happen to him if Damon and I died. He was relieved to find out that Grandma and Grandpa will take care of him, but didn't know how he would get there. We told him if that happened to call 911, and they would get Grandpa and Grandma for him. He was excited that he would get to call 911 to get his grandparents, and relieved that there was a plan. I don't want him to be afraid or worry, but this is a difficult situation. Damon and I worry. Benjamin's life has been drastically changed, and I want him to feel secure. It may be weird to answer questions like that, but how do you teach your child about chronic illness, and the possibilities it may bring without scaring them. We keep it light and silly and only answer what he needs to know, but introduce topics to help him prepare.
Ben told me today that when he gets upset he prays. Today his dad got mad at him, and he hid under some blankets and said a prayer. I asked him if it helped, and he told me it did. I told him that Heavenly Father will always help him when he prays. He prays a lot. He prays that his mommy will feel better. We read a book about faith, hope and charity, and it had a section about Priesthood blessings. Benjamin asked for one, and I told him to ask his Dad because only Dad's have the priesthood. He's had a cough for a while, because of his asthma, and it bothers him. I think we may review that concept tomorrow while Damon is around. A blessing might help calm him and give him the peace that he needs to endure these difficult times with us. I know that I need them, and Damon is always ready and willing. It has been a huge blessing to have that in my home and in my life. The priesthood carries me through my darkest moments, my deepest fears, and my most painful and terrifying days. It doesn't make everything perfect, but it always gives me the answers, encouragement and peace that I need to continue forward.
Benjamin is very sad lately. He cries and whines, and he hates that someone has to babysit him. Fortunately summer is coming soon and then he can be home with me and his dad. His dad does crafts, and yells when he gets frustrated. Sometimes it is scary when he yells, but I understand why he needs to. There are so many things to do and to worry about. I want to yell at my sickness, take it out and punch it until it gives in. I want to beat it to a pulp and make it run away and leave me alone, but it won't.
I found a bunch of online support groups. They are helping me come to terms with what will happen. Hopefully by tomorrow I will know if I can schedule my appointment with UCLA. I will have to organize my medical files, and get some from my old PCP, but that's not too big of a deal. It is just hard to know what is important. I think I might even download the disability paperwork and have that all filled out and ready to go with me, or I'll turn it in right before, and then add UCLA's results to the mix. Either way, it will be interesting to learn how that process works.
I have also learned that fibromyalgia is a nasty disease, and have found support groups that deal with that. MS plus fibromyalgia is not a good combination, and I will probably struggle with fatigue forever. It is not uncommon for both groups to be put on stimulants, which concerns me, but if it helps me parent and the like then it may be worth a shot. I have tried them in the past with some success, but worried that they were worsening symptoms, or masking symptoms. I want to put them off until I have a better grasp as to what is wrong with me.
I found fabric to make Benjamin two quilts. One is a Mr. Happy quilt, and the other will be a treasure map quilt. He has tons of blankets, but he loves them, and I want him to have blankets that I gave him that he can pass on to his children. It may be all that they have to know me by.
Sleep continues to evade me. I try to sleep at night, and even take medications that are supposed to knock me out right away, but then I don't. I don't know if I just fight it, or if I'm always tired so I don't know the difference. Maybe I'm just resistant to such things. I am loopy though, and I forget things. Damon left to get celery in the grocery store today. He told me where he was going and everything, and I lost him. I couldn't find him, and didn't know where he was. It was a little scary. I'm afraid that one day I'll lose Benjamin, or my way home. I've forgotten and lost so many other things lately, that I wonder how my mind is ever going to keep up with all that is to come. I'm going to need a system. I think it's time to create a medical control journal like Flylady suggests. I just don't know where to start, or how to organize it.
For fun my family has been playing Mario on the Wii. Benjamin obsesses and got very upset when we failed to wait for him at one point. We had to stop playing, and he cried for a long time. He told me that he misses me when he goes to babysitting, and that he doesn't like it that I'm sick. I told him today that because of my illness it might be harder for us to adopt, and he cried and said that he would have no one to play with. He is worried about first grade and all the changes, and wonders who will be his friend if he doesn't have brothers or sisters. We had to talk about how we have friends at church and school, and that his cousins and such are his friends and will play with him.
The other day Benjamin asked what would happen to him if Damon and I died. He was relieved to find out that Grandma and Grandpa will take care of him, but didn't know how he would get there. We told him if that happened to call 911, and they would get Grandpa and Grandma for him. He was excited that he would get to call 911 to get his grandparents, and relieved that there was a plan. I don't want him to be afraid or worry, but this is a difficult situation. Damon and I worry. Benjamin's life has been drastically changed, and I want him to feel secure. It may be weird to answer questions like that, but how do you teach your child about chronic illness, and the possibilities it may bring without scaring them. We keep it light and silly and only answer what he needs to know, but introduce topics to help him prepare.
Ben told me today that when he gets upset he prays. Today his dad got mad at him, and he hid under some blankets and said a prayer. I asked him if it helped, and he told me it did. I told him that Heavenly Father will always help him when he prays. He prays a lot. He prays that his mommy will feel better. We read a book about faith, hope and charity, and it had a section about Priesthood blessings. Benjamin asked for one, and I told him to ask his Dad because only Dad's have the priesthood. He's had a cough for a while, because of his asthma, and it bothers him. I think we may review that concept tomorrow while Damon is around. A blessing might help calm him and give him the peace that he needs to endure these difficult times with us. I know that I need them, and Damon is always ready and willing. It has been a huge blessing to have that in my home and in my life. The priesthood carries me through my darkest moments, my deepest fears, and my most painful and terrifying days. It doesn't make everything perfect, but it always gives me the answers, encouragement and peace that I need to continue forward.
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