Saturday, December 28, 2013
Good news
We heard good news this week... Aaron's medication will now be picked up by our insurance! We also can stay on the free program for the year. So we are very happy! Just wanted to share.
Friday, November 29, 2013
Another exacerbation...
Friday, November 15, 2013: Of course our baby is coming any day now and Aaron is starting to have symptoms of another MS attack. We are waiting until Monday to see if the symptoms subside, but if not we will treat it next week hopefully and get him back to normal before this little guy comes! What does this all mean? We don't know. He's not suppose to have one while on the meds, they are suppose to keep the MS in remission. Who knows! This dumb disease and all the unanswered questions. I feel bad now because I never did email the PA with my questions, I just talked to another person with MS. Which was helpful, but obviously we need to call in a get some answers.
Monday, November 25: Well we've had a whirlwind of a week! I never finished my post above and we never really took care of Aaron because we had early entrance into this world by our new little guy Taycen Aaron Meacham. Taycen showed up early Sunday afternoon, November 17, 2013. Only two days after I started this post above.
On Saturday, we didn't do much since Aaron wasn't feeling super hot and I didn't feel to great either. Saturday night we didn't get any sleep since I was in labor and poor Aaron had to sit next to me and as I moaned all night long. This caused him to be exhausted on Sunday and by the time night came around he was pretty sick. Unfortunately, the hospital couch chair they provide for a husband to sleep on isn't the place you want to sleep when sick. Aaron toughed it out though so he could be there with me and slept there anyways.
Friday, November 29: Poor guy. Nothing like experincing the birth of your newest child and feeling sick. I sometimes wonder, is this how life will always be? Since then his symptoms have slowly begun to cease and he doesn't feel the numbness anymore. He has had several extreme flushing episodes. I am frustrated because the drugs side effects like flushing should have subsided by now. We've looked into going to the Mayo Clinic in Arizona to get some more answers, but of course our insurance plan we are on doesn't cover it and to move to the plan that does cover it would cost us an arm and a leg to be on. We aren't sure paying the full price for the visit ourselves would be worth it. I am starting to think we should look into just visiting another doctor to get a second opinion on things. Aaron has decided to look a little more into the Mayo Clinic deal and see if there aren't some other options we have as far as ways to pay for the visit, and extra testing they may require. Whatever we do, it will not happen until after the Holiday madness. I am anxious to see Aaron feeling well and back to his regular self.
The hardest part lately, sounds very selfish on my part, but the guilt I am feeling right now. Since Aaron needs his sleep, I am trying to deal with our newborn all on my own at nights. Of course Taycen is a horrible night sleeper and I am starting to be worn down. Aaron wants to help, but is struggling with the lack of sleep he is getting already. I hate that at times I am angry, not at Aaron, but just at the circumstance. I feel horrible the few times I have woken him up in the middle of the night for help, because I was in desperate need of an hour of sleep. I just hate feeling like I am causing him to lose sleep and not feel well, but I also feel like I can't do this all alone right now either. This is the battle I deal with every night. I jump now at every sound Taycen makes because I just don't want anything to wake Aaron if I can help it. It's really been an eye opener to what life with MS may offer at times. I know it sounds silly, but at 2:30 in the morning, it is hard.
The good note of this all is I realize how lucky we are to have Aaron in our lives. He is pretty healthy for the circumstances, he is working, he is doing school and he is pushing through everything with determination. It is amazing and he is my hero! My friend from High School lost her husband 2 weeks ago unexpectedly. It was devastating to hear, and I read a few posts and things from her, my heart broke. She is left on this earth, with 4 children to raise alone. I hear that, and how can I not be so grateful and feel so blessed to still have a healthy, loving and amazing husband here with me.
Though things are a little bit harder than they used to be, I have Aaron here and I am not alone. So I guess I can complain a bit since this is my blog to complain on, but truly I have to remember the how blessed we are. With the birth of Taycen, we both feel he is a little blessing sent here to keep Aaron healthy, active and strong, so that he is around to help raise our little man. Welcome little Taycen, what a blessing and what an time in life to push through the hard and count our blessings.
love The Meacham's
Monday, November 25: Well we've had a whirlwind of a week! I never finished my post above and we never really took care of Aaron because we had early entrance into this world by our new little guy Taycen Aaron Meacham. Taycen showed up early Sunday afternoon, November 17, 2013. Only two days after I started this post above.
On Saturday, we didn't do much since Aaron wasn't feeling super hot and I didn't feel to great either. Saturday night we didn't get any sleep since I was in labor and poor Aaron had to sit next to me and as I moaned all night long. This caused him to be exhausted on Sunday and by the time night came around he was pretty sick. Unfortunately, the hospital couch chair they provide for a husband to sleep on isn't the place you want to sleep when sick. Aaron toughed it out though so he could be there with me and slept there anyways.
Friday, November 29: Poor guy. Nothing like experincing the birth of your newest child and feeling sick. I sometimes wonder, is this how life will always be? Since then his symptoms have slowly begun to cease and he doesn't feel the numbness anymore. He has had several extreme flushing episodes. I am frustrated because the drugs side effects like flushing should have subsided by now. We've looked into going to the Mayo Clinic in Arizona to get some more answers, but of course our insurance plan we are on doesn't cover it and to move to the plan that does cover it would cost us an arm and a leg to be on. We aren't sure paying the full price for the visit ourselves would be worth it. I am starting to think we should look into just visiting another doctor to get a second opinion on things. Aaron has decided to look a little more into the Mayo Clinic deal and see if there aren't some other options we have as far as ways to pay for the visit, and extra testing they may require. Whatever we do, it will not happen until after the Holiday madness. I am anxious to see Aaron feeling well and back to his regular self.
The hardest part lately, sounds very selfish on my part, but the guilt I am feeling right now. Since Aaron needs his sleep, I am trying to deal with our newborn all on my own at nights. Of course Taycen is a horrible night sleeper and I am starting to be worn down. Aaron wants to help, but is struggling with the lack of sleep he is getting already. I hate that at times I am angry, not at Aaron, but just at the circumstance. I feel horrible the few times I have woken him up in the middle of the night for help, because I was in desperate need of an hour of sleep. I just hate feeling like I am causing him to lose sleep and not feel well, but I also feel like I can't do this all alone right now either. This is the battle I deal with every night. I jump now at every sound Taycen makes because I just don't want anything to wake Aaron if I can help it. It's really been an eye opener to what life with MS may offer at times. I know it sounds silly, but at 2:30 in the morning, it is hard.
The good note of this all is I realize how lucky we are to have Aaron in our lives. He is pretty healthy for the circumstances, he is working, he is doing school and he is pushing through everything with determination. It is amazing and he is my hero! My friend from High School lost her husband 2 weeks ago unexpectedly. It was devastating to hear, and I read a few posts and things from her, my heart broke. She is left on this earth, with 4 children to raise alone. I hear that, and how can I not be so grateful and feel so blessed to still have a healthy, loving and amazing husband here with me.
Though things are a little bit harder than they used to be, I have Aaron here and I am not alone. So I guess I can complain a bit since this is my blog to complain on, but truly I have to remember the how blessed we are. With the birth of Taycen, we both feel he is a little blessing sent here to keep Aaron healthy, active and strong, so that he is around to help raise our little man. Welcome little Taycen, what a blessing and what an time in life to push through the hard and count our blessings.
love The Meacham's
Tuesday, October 22, 2013
3 month follow up appointment...
It has been 3 months now since Aaron's official diagnosis. What a crazy time it has been! Yesterday we had a followup appointment with the MS specialist. We were anxious to get there and have a list of many questions answered. While there he recorded Aaron's symptoms, reactions to the medication and discussed a few other things that we've experienced. I luckily had written and tracked everything that has happened these 3 months down, so it was quick and easy to answer all his questions. We asked a few of our questions as he asked similar ones. But, he was quick and seemed to be in a hurry. So we were kind of waiting for him to finish, so then we could start firing. Before we knew it, we were being escorted out of the room, left with a list of questions unanswered and frustration building. I had promised I would be aggressive and not leave until all my questions were answered, but I guess neither of us are aggressive enough. It was hard to have a doctor so in a hurry, especially when things are still up in there and we still feel very lost. I'm learning so much about Doctors and the medical world. If you want answers to your questions, you have to demand it and work for it. Our doctor is super nice, but obviously has much on his plate, many cases and is very busy. Our problem, is that this disease is new to us, and we are still in the dark on many things. Combining the two isn't very good. We've decided to call the PA later this week and ask if we can get a few answers to our questions. Hopefully, we will receive a little more clarity.
So I'm trying to walk away from the visit looking at the positives:
1. We now know that most likely the medication is working for Aaron, despite the side effects, which should have subsided by now, but of course haven't. We won't know completely for sure if the medication is totally working until in 8 months when he has his next MRI. We can guess that it is doing it's job because he hasn't had a flare up for two months. (He did have a flare up the first month he was on the meds but that Dr. mentioned it might have been to early for the medication to have any effect yet.)
2. The Doctor is pretty confident that the medication should be picked up by our insurance company. We hope his confidence proves to hold true, but we won't know until Dec.
3. We also found out that Aaron's body is healthy enough and capable of being put on an even more aggressive and intensive form of medication if this medication does not work. That is a comforting and good to know for the future.
4. Aaron had blood work done yesterday that will help us see how Aaron's body is handling the medication he is on. It will show if his kidney's are okay and if it is not have a negative effect on everything.
5. The doctor did inform us that Aaron can have a flu shot, but suggests that if he can avoid it to do so. He confirmed our fears about Aaron's immune system, obviously with the medications and what they do, they make Aaron much more susceptible to sickness.
What we are still unsure of:
1. Why is Aaron still experience so many side effects and MS symptoms? Is that normal or should be watching him?
2. He has a persistant "eye" headache that seems to be a strange symptom that continues to appear. We'd love to understand more about this and if it has links to the NMO or MS.
3. If the insurance company doesn't pick up the medication. Should we continue with the drug for this next year or do we just move on and try something new?
4. Different effects of the drug he is on and how to ease the symptoms.
There are so many more things on my mind... I think I learned yesterday that we will always be somewhat in the dark and always have questions. It is a unpredictable disease and you never know the direction it will take. It is hard to go to the office of the MS specialist. a majority of the people there have walkers, canes or other noticeable disabilities. I have to remain positive and think that everyone's case is different, and since we are in a day where the drugs are more advance, maybe Aaron will never get to that point. Thus, we are happy that admist the uncertainty and many questions... things are good. Aaron is working, serving, playing and being the man I love. We need to stay focused on that and try to just enjoy the good days.
I need to tell Aaron that I love him and no matter what wouldn't change the way our lives have gone. He is worth it all. I have the sweetest, kindest and most loving husband. No matter what, he will always be my best decision ever made. Love you!
We also want to thank Joyce who watched the girls for us while we went to our Dr. visit. The girls loved it and were well taken care of. Thank you again for your service!
Much love
The Meacham's
So I'm trying to walk away from the visit looking at the positives:
1. We now know that most likely the medication is working for Aaron, despite the side effects, which should have subsided by now, but of course haven't. We won't know completely for sure if the medication is totally working until in 8 months when he has his next MRI. We can guess that it is doing it's job because he hasn't had a flare up for two months. (He did have a flare up the first month he was on the meds but that Dr. mentioned it might have been to early for the medication to have any effect yet.)
2. The Doctor is pretty confident that the medication should be picked up by our insurance company. We hope his confidence proves to hold true, but we won't know until Dec.
3. We also found out that Aaron's body is healthy enough and capable of being put on an even more aggressive and intensive form of medication if this medication does not work. That is a comforting and good to know for the future.
4. Aaron had blood work done yesterday that will help us see how Aaron's body is handling the medication he is on. It will show if his kidney's are okay and if it is not have a negative effect on everything.
5. The doctor did inform us that Aaron can have a flu shot, but suggests that if he can avoid it to do so. He confirmed our fears about Aaron's immune system, obviously with the medications and what they do, they make Aaron much more susceptible to sickness.
What we are still unsure of:
1. Why is Aaron still experience so many side effects and MS symptoms? Is that normal or should be watching him?
2. He has a persistant "eye" headache that seems to be a strange symptom that continues to appear. We'd love to understand more about this and if it has links to the NMO or MS.
3. If the insurance company doesn't pick up the medication. Should we continue with the drug for this next year or do we just move on and try something new?
4. Different effects of the drug he is on and how to ease the symptoms.
There are so many more things on my mind... I think I learned yesterday that we will always be somewhat in the dark and always have questions. It is a unpredictable disease and you never know the direction it will take. It is hard to go to the office of the MS specialist. a majority of the people there have walkers, canes or other noticeable disabilities. I have to remain positive and think that everyone's case is different, and since we are in a day where the drugs are more advance, maybe Aaron will never get to that point. Thus, we are happy that admist the uncertainty and many questions... things are good. Aaron is working, serving, playing and being the man I love. We need to stay focused on that and try to just enjoy the good days.
I need to tell Aaron that I love him and no matter what wouldn't change the way our lives have gone. He is worth it all. I have the sweetest, kindest and most loving husband. No matter what, he will always be my best decision ever made. Love you!
We also want to thank Joyce who watched the girls for us while we went to our Dr. visit. The girls loved it and were well taken care of. Thank you again for your service!
Much love
The Meacham's
Thursday, October 17, 2013
MS Truck
All ready for the MS truck...
Thursday, October 3, 2013
No flu shot = sick people stay away!!!
Aaron was informed today to definitely not get a flu shot... It could cause him to have another flare?!!?! I'm realizing that our winters at the Meacham home will need too be different for now on, especially this winter with a new baby! After Aaron's last stomach flu we know that it is hard for him to fight off infection so we have to be so careful that we keep him from getting sick. With a new baby too, we have got to keep everyone as healthy as we can and keep our house quarantined! So with that said, we will have to find a way to not be offend others when we tell them tht we can't come to an event, house or place where there are sick people or if we don't let people come over to our house when they've been exposed or sick! I know that we can't prevent everything, but we are going to have to try. I guess I'll also need to go out and buy some hand sanitizer and Lysol wipes! Funny how I sit here writing this while I'm deling with my first cold of the season! I never understood those overprotective germ phone people, that is until now! Here we go!
Monday, September 23, 2013
Another miracle!
Just a quick update...
Saturday morning Aaron took his last pill and Saturday afternoon his new drugs showed up! They overnighted them for us. It honestly was a miracle or should I say a huge blessing from The Lord! I've honestly never witnessed so many personal miracle/blessings in my life in such a short time. The Lord is truly mindful of us. Aaron is back on track with medication and we have a year of cost free medication! I have to express my gratitude to The Lord for this blessing. Things are tight with medical bills and new baby etc.. Truly it is one blessing after another admist the craziness of this all.
Thanks to those others who have quietly offered help, support and prayers. It has all been such a help! How did we get so blessed with so many amazing people in our lives???
Loves to you all!
The Meachams
Saturday morning Aaron took his last pill and Saturday afternoon his new drugs showed up! They overnighted them for us. It honestly was a miracle or should I say a huge blessing from The Lord! I've honestly never witnessed so many personal miracle/blessings in my life in such a short time. The Lord is truly mindful of us. Aaron is back on track with medication and we have a year of cost free medication! I have to express my gratitude to The Lord for this blessing. Things are tight with medical bills and new baby etc.. Truly it is one blessing after another admist the craziness of this all.
Thanks to those others who have quietly offered help, support and prayers. It has all been such a help! How did we get so blessed with so many amazing people in our lives???
Loves to you all!
The Meachams
Thursday, September 19, 2013
The $100 Pill
We found out this week our insurance doesn't cover Aaron's medication. AHHHHH! We were misinformed by the pharmacy in the beginning on how the first two months prescriptions were being filled. (We were on an introductory program that cost only $10 a month)
While at the Techfidera dinner Aaron spoke with a few others who had the same insurance as we do and discovered he was not being covered?!?!! We called the insurance the next day... sure enough, we weren't being covered. Aaron called the drug company and was informed that our next bill would cost $3700! Ouch! We were just sick. What do we do?
Luckily, we found out from the drug company there is a program that you can qualify for to receive a one years supply pretty much free. We were anxious to see if we could get in on this program. Aaron applied last week, but was told it would take 3-4 business days before we would know. We were hopeful we would qualify since we have 3 kids and our income isn't substantial by any means. But, we didn't hear anything this whole week and Aaron's meds are running low. (We were told if he went off them suddenly that he would most likely relapse!) So, yes, we've been a little anxious and stressed.
Today we received the wonderful news that Aaron does qualify for the program... What a blessing!!!! We are now just waiting to hear from the pharmacy when the meds will be sent and we are just hoping they get here before his supply is gone.
Our other hope is that the insurance company will pick up this medication soon. They only review new meds once a year in November. So pray that in November that insurance picks up this med. or in a year we will have to go a different route, which would be like taking a step back.
Here's to the $100 pill that is helping keep my hubby healthy!
While at the Techfidera dinner Aaron spoke with a few others who had the same insurance as we do and discovered he was not being covered?!?!! We called the insurance the next day... sure enough, we weren't being covered. Aaron called the drug company and was informed that our next bill would cost $3700! Ouch! We were just sick. What do we do?
Luckily, we found out from the drug company there is a program that you can qualify for to receive a one years supply pretty much free. We were anxious to see if we could get in on this program. Aaron applied last week, but was told it would take 3-4 business days before we would know. We were hopeful we would qualify since we have 3 kids and our income isn't substantial by any means. But, we didn't hear anything this whole week and Aaron's meds are running low. (We were told if he went off them suddenly that he would most likely relapse!) So, yes, we've been a little anxious and stressed.
Today we received the wonderful news that Aaron does qualify for the program... What a blessing!!!! We are now just waiting to hear from the pharmacy when the meds will be sent and we are just hoping they get here before his supply is gone.
Our other hope is that the insurance company will pick up this medication soon. They only review new meds once a year in November. So pray that in November that insurance picks up this med. or in a year we will have to go a different route, which would be like taking a step back.
Here's to the $100 pill that is helping keep my hubby healthy!
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