When you here those words from your doctor, you think... hmmmm this is not good.
We went in for our MRI follow up appointment this week. We've been anxious since the Doctors office called us back after the MRI suggestion Aaron get more solemedrol treatments in and have a visit with the doctor soon.
Back to square 1is a good way to sum up all that we discovered. The MRI showed a very large lesion on the brain and then another at different spot. The many exaberations that Aaron's has had since January are the evidence of whats been going on in his head. Not good. Proving the disease has found a way past the medication and is not working. In the words of his Doctor "Disastrous!" The obviously it didn't do as we had hoped and had quite the opposite effect.
So what does this all mean? A new start and search for help for Aaron.
The Doctor suggested, well pretty much said our next step is a drug called Tysabri. Very effective and has been around for about 10 years. It is a once a month infusion and doesn't have too many side effects. The problem, as we are finding all drugs have, is that it is connected to a rare brain infection that can kill you. Ya, I shifted in my seat when I heard that one. It's rare, but not rare enough that they watch you like a hawk to make sure you show no signs of this brain virus. Not what I wanted to hear. So what is this virus?
There is a virus called the JCV virus, named after a man who died from it. Nice. Anyways, we are all exposed to it and probably half the population has it. It is food bourne. It sits and hangs out in our kidneys. It does us no harm, until we have a weakened immune system. So people who have chemo, and other disease where the medication weakens that immune system increase their chances for problems. The JCV virus can end up in an Tysabri patients brain and start doing its damage when the immune system is weak. Tysabri is a drug that weakens the immune system, it does it so well that it allows for the MS to not hurt the brain, but increases the chance of the JCV virus to do its damage. The JCV virus does have to mutate and travel to the brain first, for it to cause brain damage. But if it does, and once this virus is in the brain it then causes the brain infection PML. This is not good. It has no cure and about 25% of those who have it die. Those who don't are disabled and very sick. There is not cure to PML.
So with this new knowledge I started to ask a few questions. What types of people have generally got PML. The doctor said it was found most often in the european nations. Why? Because people there were skinny. We both looked at Aaron. My thought... I need to fatten that boy up. We went ahead and looked at his blood tests and guess what!? Aaron does have the virus, like half the population, but he does have it hanging out somewhere in him. Ready to mutate and travel to his brain. I know I'm being silly, but you sit and listen to a doctor say that a drug he is putting your sweetheart on is suppose to help one thing, but has a risk of killing him! You'd be a little nervous too.
Anyways, he should be fine and we are going to go ahead and start the drug here in the next few weeks once we get approved by insurance and hopefully get on some financial help plans to pay for it. The drug itself $5500 a month! Of course we won't pay that, but it still would be killer if we didn't get financial help. SO fingers crossed!!!
I did ask the Doctor why the first drug Tecfidera didn't work. I asked him if Aaron maybe has a more aggressive MS. His response was of course not what we wanted to hear. It looks as though at this point it is a lot more aggressive than we thought. Which is more typical in a male with MS. More women have MS, but men who have it, see a more aggressive side to it, since they don't have the hormones like women. But, we can treat it he thinks with these typical medications. If not, then we will jump on something more intense. We pray we never get there. It didn't sound pleasant.
It was hard to sit there holding our 2 week old baby and listening to the doctor say, we obvisouly need to get you better. You've go this young family and a whole future ahead. Why was that hard to hear? Because for a year and half I thought we were already getting him better. Here we sit and he just told us that the medication he was just on was DISASTROUS and not doing what we had hoped.
So onto a new chapter. There is great hope that this drug will do what we need. The first 6 months are vital in watching how Aaron responds to the drug and treatment style. We have to watch for allergic reactions, PML signs and side effects. I will go to his first treatment, so that I can get educated on what to look for and how to keep him safe.
We just hope and pray this is what we are looking for. That Aaron will be healthy finally and we can move away from the fear of MS taking over our lives. As his doctor said we want to make MS not a disease that will disable, but just a pain in the butt every once in awhile. SO here's to a pain in the butt.
Friday, April 17, 2015
Thursday, March 5, 2015
MS Awareness Week
This is National MS awareness week. Not that most people even are aware of that or know what MS is. But for those of us effected by it, I suppose it has a lot of meaning in it. I decided I would take this week to become better acquainted with Aaron's disease. Its been on my mind a lot lately, mainly due to his poor health and the new challenges ahead. But also, because I'm frustrated that Im not doing more to help Aaron's health to be better.
It can be overwhelming at times, to feel a responsibility to help your husband have good healthy habits and cook good foods for him. I feel we are generally very healthy people and have always been. But, we've really cut down and a lot out these past few years. Still I feel the pressure that it isn't enough. I've had two very close friends tell me different paths we should take as far as food goes. One pretty much told me a cure would come if we stopped having a certain type of food in his diet, another said that if we cut everything out, with exception to those things that naturally come from the earth that we would see him obliviate all bad symptoms. Though I do not disagree that what we eat truly impacts our quality of life, I'm frustrated that we continued to get bombarded by people telling us what to do, because they've witnessed a situation where their food choice changed the health of someone.
In one instance a friend said because of their family members diet change, they were "cured" of an undiagnosed MS. They had some symptoms, but it was obvious to me that it wasn't MS, but in her mind that was the answer. It kind of came off as, Hey! if Aaron would only get healthy and eat right, everything would be ok. You guys wouldn't have this disease anymore. Its pretty much your fault where he is and if you don't change, then its your fault where he is headed. I'm not sure if thats ever how anyone would ever put it or say it, but it feels this way. Of course, if I knew there was a simple answer like eliminating a certain food that would cure him, we'd do it. But it doesn't, they've proved it in studies and most MS people we talk to are all over the range of diets and lifestyle, yet they all continue on the road with the disease. Yes, again, it can eliminate nasty symptoms and help Aaron healthy to fit the disease more aggressively. But, its not the cure.
So here's Aaron anyways, who is super healthy. Very healthy. In fact I used to tease him that he needed to enjoy life a little more and eat a less healthy things. But, I've started the research. So I can truly understand and feel that what I feed and give my husband isn't truly killing him. He has started to decrease and eliminate most dairy and gluten products from his diet. It hasn't been long enough for us to see any change. As I have read, and the more I read, really what we need to decrease and change is more of the salt intake and processed/fast foods. We really don't eat fake, processed dinners or foods. In fact I live by the rule of shopping the premeter of the store. I do buy crackers, cereal, bread and fruit snacks for the kids, but Aaron rarely eats anything like that, unless its organic type of snack with a few ingredients. We eat out rarely and when we do, we share a meal and keep away from fast food places like Mcdonalds. We will continue to experiment and find what helps him feel best. Everything that I read takes me back to what his MS doctor said about whole foods, plus high fibrous whole grains, oils, nuts and high in fatty omegas. We are not fish people, but we can give him that through vitamins and other foods. I just need to continue to research and learn more.
Ahhh, my venting session is done. I really want what's best for Aaron and I will truly change or do whatever we need to do. I just wish people around us would stop judging, critizing or telling us what we should do. I wish there was a book that told us exactly what to do. There isn't. MS effects every person differently, everyone is treated differently and each person responds different. So forward we go. I do want to put it out there we don't not want to hear from people what has helped them, we just don't want to be told that if we'd only change this or that he'd be cured. Be sensitive is all. In the end Aaron's a good guy who really takes everything that is said to him lightly. I'm the one who thinks about it too much. AS you can tell.
Anyways, Aaron had a big dose of steroids yesterday. The nurse at the clinic didn't like to hear he had two new lesions. Not a good sign at all. I guess we will know more in April. AS for this week, we are going to continue to learn and read more about it. I want a healthy and happy husband in the future, so I feel what I do and learn now could really help that to happen.
Much Love. Thanks for reading my ventings. Jamie
It can be overwhelming at times, to feel a responsibility to help your husband have good healthy habits and cook good foods for him. I feel we are generally very healthy people and have always been. But, we've really cut down and a lot out these past few years. Still I feel the pressure that it isn't enough. I've had two very close friends tell me different paths we should take as far as food goes. One pretty much told me a cure would come if we stopped having a certain type of food in his diet, another said that if we cut everything out, with exception to those things that naturally come from the earth that we would see him obliviate all bad symptoms. Though I do not disagree that what we eat truly impacts our quality of life, I'm frustrated that we continued to get bombarded by people telling us what to do, because they've witnessed a situation where their food choice changed the health of someone.
In one instance a friend said because of their family members diet change, they were "cured" of an undiagnosed MS. They had some symptoms, but it was obvious to me that it wasn't MS, but in her mind that was the answer. It kind of came off as, Hey! if Aaron would only get healthy and eat right, everything would be ok. You guys wouldn't have this disease anymore. Its pretty much your fault where he is and if you don't change, then its your fault where he is headed. I'm not sure if thats ever how anyone would ever put it or say it, but it feels this way. Of course, if I knew there was a simple answer like eliminating a certain food that would cure him, we'd do it. But it doesn't, they've proved it in studies and most MS people we talk to are all over the range of diets and lifestyle, yet they all continue on the road with the disease. Yes, again, it can eliminate nasty symptoms and help Aaron healthy to fit the disease more aggressively. But, its not the cure.
So here's Aaron anyways, who is super healthy. Very healthy. In fact I used to tease him that he needed to enjoy life a little more and eat a less healthy things. But, I've started the research. So I can truly understand and feel that what I feed and give my husband isn't truly killing him. He has started to decrease and eliminate most dairy and gluten products from his diet. It hasn't been long enough for us to see any change. As I have read, and the more I read, really what we need to decrease and change is more of the salt intake and processed/fast foods. We really don't eat fake, processed dinners or foods. In fact I live by the rule of shopping the premeter of the store. I do buy crackers, cereal, bread and fruit snacks for the kids, but Aaron rarely eats anything like that, unless its organic type of snack with a few ingredients. We eat out rarely and when we do, we share a meal and keep away from fast food places like Mcdonalds. We will continue to experiment and find what helps him feel best. Everything that I read takes me back to what his MS doctor said about whole foods, plus high fibrous whole grains, oils, nuts and high in fatty omegas. We are not fish people, but we can give him that through vitamins and other foods. I just need to continue to research and learn more.
Ahhh, my venting session is done. I really want what's best for Aaron and I will truly change or do whatever we need to do. I just wish people around us would stop judging, critizing or telling us what we should do. I wish there was a book that told us exactly what to do. There isn't. MS effects every person differently, everyone is treated differently and each person responds different. So forward we go. I do want to put it out there we don't not want to hear from people what has helped them, we just don't want to be told that if we'd only change this or that he'd be cured. Be sensitive is all. In the end Aaron's a good guy who really takes everything that is said to him lightly. I'm the one who thinks about it too much. AS you can tell.
Anyways, Aaron had a big dose of steroids yesterday. The nurse at the clinic didn't like to hear he had two new lesions. Not a good sign at all. I guess we will know more in April. AS for this week, we are going to continue to learn and read more about it. I want a healthy and happy husband in the future, so I feel what I do and learn now could really help that to happen.
Much Love. Thanks for reading my ventings. Jamie
Tuesday, March 3, 2015
Next Step
Well we finally got a call back from the Doctor's office. They've bumped Aaron's appointment from the end of May to the beginning of April. Which means we hopefully will get some answers a little bit sooner than we were thinking, which is great news! They also told Aaron to go in and get one more dose of steroids to keep him going until then. We are hoping this will help. Once we know more we will update the blog. Until then. Prayers we can receive some guidance on the next step, that we can come to understand this illness better and really find a direction in how to make Aaron feel better. We've started eating a lot healthier once again and trying to get Aaron more sleep. It seems to help a little and we hope we can continue.
Thanks for reading and for your concern! It truly means a lot to us. I do want to let you all know that overall, life is good!!! I seem to come off negative in my posts, mainly because its the only time I really talk about all of this or share what's going on with others. But, we are HAPPY. We feel blessed Aaron is as healthy as he is, that he can work and doesn't have any symptoms at the time the prevent him from a regular everyday life.
Thanks for reading and for your concern! It truly means a lot to us. I do want to let you all know that overall, life is good!!! I seem to come off negative in my posts, mainly because its the only time I really talk about all of this or share what's going on with others. But, we are HAPPY. We feel blessed Aaron is as healthy as he is, that he can work and doesn't have any symptoms at the time the prevent him from a regular everyday life.
Sunday, February 15, 2015
Results
We got Aaron's MRI results back this week. We were excited at first, because they gave us his spine results first and everything looked awesome. Then we realized we didn't have the brain results and had to wait a few more days. Feeling positive after reading the spine results, we were a little disappointed with the brain. We of course don't know much of the medical jargin, so we don't completely understand everything that was reported. We will have to wait until we officially meet with his doctor, but we do know that when it says two new areas that have been effected its not good news. We don't know exactly how bad or what damage happened, but we do know that some has happened. So our long streak of healthy hasn't quite continued, and its back to the doctor to figure out what the next step is.
Aaron's felt fairly well up until January. But it seems, since the new year, we've had problem after problem. From headaches, to lack of sleep, to weird rash break outs, to awful red flare ups and lots of numbness. Nothing that limits him luckily from work or most things he is required in his life, but it sure doesn't make easy. He just doesn't feel good most the time, and that is just plain frustrating and hard. Think about the times you have a headache or feel sick. Now think how relieving it is when thats over and you no longer have it and can continue on with life feeling good. Now picture if it never went away and you always live with some kind of pain or problem! That's Aaron. Yet, he really is optimistic and continues on with his life as if nothing is wrong. It just gets a little harder when its more intense like it has been.
We look forward to a visit with the Dr. and hope that we can figure out how to get him back to that healthier stage. Until then, we've decided to make a few changes to diet and lifestyle to hopefully get him feeling a little better. WE notice that certain foods tend to make him feel not 100% which is probably true for every person. But, they tend to have a greater effect on him. We hope this will help with some of the day to day problems he faces.
We will keep you posted on thing when we know more.
Aaron's felt fairly well up until January. But it seems, since the new year, we've had problem after problem. From headaches, to lack of sleep, to weird rash break outs, to awful red flare ups and lots of numbness. Nothing that limits him luckily from work or most things he is required in his life, but it sure doesn't make easy. He just doesn't feel good most the time, and that is just plain frustrating and hard. Think about the times you have a headache or feel sick. Now think how relieving it is when thats over and you no longer have it and can continue on with life feeling good. Now picture if it never went away and you always live with some kind of pain or problem! That's Aaron. Yet, he really is optimistic and continues on with his life as if nothing is wrong. It just gets a little harder when its more intense like it has been.
We look forward to a visit with the Dr. and hope that we can figure out how to get him back to that healthier stage. Until then, we've decided to make a few changes to diet and lifestyle to hopefully get him feeling a little better. WE notice that certain foods tend to make him feel not 100% which is probably true for every person. But, they tend to have a greater effect on him. We hope this will help with some of the day to day problems he faces.
We will keep you posted on thing when we know more.
Saturday, January 31, 2015
MRI
Well, things didn't quite go as we thought with Aaron's last dose of sole medrol. We had hoped it would stop his symptoms and he'd be feeling better by now. But, unfortunately it hasn't. The numbness and pain are still there and have travelled further down into his foot. He is says it isn't too painful, just irritating and frustrating. Aaron called the Dr. office Wednesday to see what this means. They weren't for certain, but are guessing he is having an actual relapse of MS. The only way to know for certain is to have his MRI a little early. If it is an actual relapse, then this might mean a No go on the medication and a start all over of something new. Bummer. Not the news we want to hear. It's frustrating because he had 9 months of really good health. To see that decline and the reality that this disease will truly never go away is hard. But, we can't get down yet. We really just need to see the MRI results and then go from there. Once those are in, I'll hopefully be able to tell you more. WE are glad he's getting the MRI earlier due to insurance and upcoming events in life. I hope it gives us the answers we need too.
Tuesday, January 27, 2015
Update...
Our hope was that Aaron would continue his long stretch of no relapses in the year of 2015, but sadly at the beginning of Jan. the 9 month stretch ended. Boo!
Aaron began to experience, numbness, and some pain on his left side again, along with sleepless nights and a lot of discomfort. I always feel bad when he gets like this. It must be a real pain and confidence crusher. Of course Aaron pushes through it, doesn't tell anyone and deals with it quietly. He's learned though not to toy with it and as soon as the pain comes, to do something about it. I'm glad he is getting better about doing this. Thus, he went in for infusion treatments the next week and feels like they helped a ton.
I'm grateful there is a fast fix to helping these symptoms. I wish I understood more, if it is helping the problem. At least, he can go back to his same old self after these infusions. We are always grateful that the MS is not manifesting itself in another area. I guess that means bigger troubles if it is. So our hopes are, if the symptoms are back, that at least they stay on the left side.
We did feel it was a tender mercy the flare up came on when it did, since the next week we left for our family vacation. The infusion is like a shield for about 6 weeks. So he had the extra help while we were gone for his immune system and treatment of symptoms. Which was comforting to me, especially since we went to Disneyland where there was just a measles out break. Plus he had to do a lot of physical walking, driving and some sleepless nights.
Aaron's a trooper. We are learning of so many that deal with autoimmune diseases. They are horrible and can be such a set back in life. Yet, so many are persevering through pain and trials and just living life to the best they can despite their physical difficulties. I hate that out of all the autoimmune diseases Aaron has to have the one that attacks the brain! But, I am proud of Aaron and his way of facing this trial in his life. Though it is truly a daily struggle for him, he is pushing forward with such optimism and desire to not let it stop him. There are days when it does, that's got to be frustrating. But he pushes on and is stalwart. I truly look to him as an example. We all face trial, but not letting it stop us is truly an accomplishment.
Hang in there babe! Love ya! Keep up the perseverance and know we are rooting for you!
Aaron began to experience, numbness, and some pain on his left side again, along with sleepless nights and a lot of discomfort. I always feel bad when he gets like this. It must be a real pain and confidence crusher. Of course Aaron pushes through it, doesn't tell anyone and deals with it quietly. He's learned though not to toy with it and as soon as the pain comes, to do something about it. I'm glad he is getting better about doing this. Thus, he went in for infusion treatments the next week and feels like they helped a ton.
I'm grateful there is a fast fix to helping these symptoms. I wish I understood more, if it is helping the problem. At least, he can go back to his same old self after these infusions. We are always grateful that the MS is not manifesting itself in another area. I guess that means bigger troubles if it is. So our hopes are, if the symptoms are back, that at least they stay on the left side.
We did feel it was a tender mercy the flare up came on when it did, since the next week we left for our family vacation. The infusion is like a shield for about 6 weeks. So he had the extra help while we were gone for his immune system and treatment of symptoms. Which was comforting to me, especially since we went to Disneyland where there was just a measles out break. Plus he had to do a lot of physical walking, driving and some sleepless nights.
Aaron's a trooper. We are learning of so many that deal with autoimmune diseases. They are horrible and can be such a set back in life. Yet, so many are persevering through pain and trials and just living life to the best they can despite their physical difficulties. I hate that out of all the autoimmune diseases Aaron has to have the one that attacks the brain! But, I am proud of Aaron and his way of facing this trial in his life. Though it is truly a daily struggle for him, he is pushing forward with such optimism and desire to not let it stop him. There are days when it does, that's got to be frustrating. But he pushes on and is stalwart. I truly look to him as an example. We all face trial, but not letting it stop us is truly an accomplishment.
Hang in there babe! Love ya! Keep up the perseverance and know we are rooting for you!
Sunday, December 7, 2014
Catch up!
Wow, I didn't realize how long its been since I last wrote on this blog. I'm sure no one reads it anymore, but its good for me and our memory books.
Aaron's physically felt fairly well since my last post of him graduating and having that stress out of his life. He actually just got his paper completely turned in, accepted and published! We are now finally waiting for the "real" degree to come in the mail.
MS we are learning is a disease of ups and down that can effect you daily. People ask us how he is doing. Which is a hard one to answer. Because, yes, he is doing better than the past. He hasn't been in for steroids in a few months and the meds seem to working for the most part. But, he physically has daily problems, these come and range in differing symptoms and degrees of pain. He is learning what things effect what and what he can do to minimize things. The hard part is when something new comes up and we aren't sure what is causing it and how to minimize it. When you look at Aaron you would never know he is sick. He is such an upbeat, positive, loving and kind person. His set backs he deals with quietly and I'm honestly the only person who picks up on these things and I'm sure I even miss some of them at times. Like today, he looked pale, I could tell he was struggling with his speech and feeling tired. He showed me he has been biting his lip consecutively, and has a huge sore on the inside of his mouth. Yet, he pushes through it, tries to fast, does a full day at church and meetings, and worries about others the whole time. I forced him to eat lunch and lay down for a little bit today, but of course that lasted for a few minutes before he had to jump on the busy bandwagon again with life.
I pray that he never has the intense limitations that MS can bring like, a cane, wheelchair or other extremely physical debilitating effects. We feel blessed that we've escaped those thus far. So we will continue to be grateful for that.
We saw his specialist this past week. There's not much to share. We are learning that the MRI is really the only way other than symptoms to track and know how he is doing. We are planning on getting one late March, early April. From there we will decide on the direction we should take him as far as medication and treatments go.
We received good news that most likely the medicine that Aaron's on now, will not effect out new baby that will be born in March. We've been really nervous about it, because there are some drugs out there that can cause big problems in the development of babies. We were never planning on having us get pregnant while on medication, but life has a way of surprising you. We feel at peace about the whole thing now though and are grateful that all looks well with the development of the baby so far.
That's pretty much the summary of everything right now. Hope this helps those who are wondering. We are happy to have a active, happy dad in our lives, despite the hardships. We are grateful he has done so well these past 6 months and hoping it continues.
Aaron's physically felt fairly well since my last post of him graduating and having that stress out of his life. He actually just got his paper completely turned in, accepted and published! We are now finally waiting for the "real" degree to come in the mail.
MS we are learning is a disease of ups and down that can effect you daily. People ask us how he is doing. Which is a hard one to answer. Because, yes, he is doing better than the past. He hasn't been in for steroids in a few months and the meds seem to working for the most part. But, he physically has daily problems, these come and range in differing symptoms and degrees of pain. He is learning what things effect what and what he can do to minimize things. The hard part is when something new comes up and we aren't sure what is causing it and how to minimize it. When you look at Aaron you would never know he is sick. He is such an upbeat, positive, loving and kind person. His set backs he deals with quietly and I'm honestly the only person who picks up on these things and I'm sure I even miss some of them at times. Like today, he looked pale, I could tell he was struggling with his speech and feeling tired. He showed me he has been biting his lip consecutively, and has a huge sore on the inside of his mouth. Yet, he pushes through it, tries to fast, does a full day at church and meetings, and worries about others the whole time. I forced him to eat lunch and lay down for a little bit today, but of course that lasted for a few minutes before he had to jump on the busy bandwagon again with life.
I pray that he never has the intense limitations that MS can bring like, a cane, wheelchair or other extremely physical debilitating effects. We feel blessed that we've escaped those thus far. So we will continue to be grateful for that.
We saw his specialist this past week. There's not much to share. We are learning that the MRI is really the only way other than symptoms to track and know how he is doing. We are planning on getting one late March, early April. From there we will decide on the direction we should take him as far as medication and treatments go.
We received good news that most likely the medicine that Aaron's on now, will not effect out new baby that will be born in March. We've been really nervous about it, because there are some drugs out there that can cause big problems in the development of babies. We were never planning on having us get pregnant while on medication, but life has a way of surprising you. We feel at peace about the whole thing now though and are grateful that all looks well with the development of the baby so far.
That's pretty much the summary of everything right now. Hope this helps those who are wondering. We are happy to have a active, happy dad in our lives, despite the hardships. We are grateful he has done so well these past 6 months and hoping it continues.
Subscribe to:
Posts (Atom)