It feels like no improvement is being made in Bella with the change in medicine. I know it often takes time but it stinks to watch my daughter complain of pain and discomfort so much. I hate seeing her so tired and cranky. Those moments when I see her giggling and laughing with her friends make me feel like things are changing.....but at the end of the day we still get the same complaints from Bella (now with a couple new issues). Anyone that has a child with an auto immune disease or any type of chronic illness knows how exhausting it is for their child and the entire family. I just wish we could run away from it and have a break, even for one day. All I ask for is one day where I/we don't worry, have to give medicine, research, and fight with the insurance. I feel like my close friends now are the nurses at Hershey Medical Center because I talk to them on a daily basis.....ha ha
This week Bella has a few new complaints to add to the list, because we don't have enough going on already! Sunday night she started to complain of chest pains, we thought it must be acid reflux(common side effect of a couple of her meds). We gave her tums and sent her to bed. The next morning same complaint. All along she has been complaining of stomach aches/pains (she always had stomach issues). After 4 days of the complaint I contacted the doctor and they have actually decided to make some more changes. First, the doctor is putting in a call to the Gastro doctors at Hershey trying to get Bella in to their office sooner than later because she suspects that Bella has Chrone's Disease or Inflammatory Bowel Disease. Which both of these are common with children that have JA. They will be doing a full panel of tests ranging from blood work to colonoscopy. It is very common for children with JA to get overlapping auto immune diseases, which makes it quite tricky for the doctors. Many of them require the same medicines and treatments, but not always.
So they are taking her off of the Naproxyn for now, just in case it is causing stomach upset. Which now drops us down to 2 pills a day, pretty exciting. BUT, Monday we are to call back and discuss putting her on Prednisone steroids to help with some of the issues she is having. The doctor thinks she may also have Costochondritis. Costochondritis is inflammation of the cartilage that attaches the ribs to the breast bone. Also, another condition common in patients with JA. I never knew there were so many things that could get inflamed in one person's body.
The doctor wants to make one change at a time to see the outcome of each change individually.
She did tell me that Bella should be seeing improvement with the Methotrexate already and feels that she is getting worse in symptoms so she told me the next option would be the Biologic drugs. Which they give in addition to the Methotrexate and is also an injection or infusion. The doctor said her disease is progressing ever with the treatments and wants to move fast with tests.
I am very happy that the doctor is moving quickly to help Bella and find the right treatments to improve her quality of life.
Most people would never notice a change in Bella at school or activities because she tries to hide it from everyone. Bella hates having JA and tells me she does not want to talk about it with anyone. I asked her why she tells everyone else that she feels good all the time when they ask how she is feeling and she told me that is because she doesn't want to explain what is wrong to everyone all the time. She doesn't want people to think she is weird. Kinda breaks my heart that she feels the need to cover up just to feel normal.
So, hopefully by the end of day today we will have our next round of appointments set up and we can move forward with helping to reduce her discomfort.
I have to say that I have never been more happy with a doctor and staff ever. Bella's Rheumatoid doctor and her nurses are amazing. They have helped us so much and call after hours to help us and have never doubted a pain or concern. Love, love, love her doctor/nurses!!!
Friday, November 22, 2013
Wednesday, November 20, 2013
Were making changes as we need to...
Many people have often mentioned to me about changing Bella's diet to help with he arthritis. So, I have mentioned the idea to her doctor and she stated that there is no specific study that proves that a diet change will make a huge difference in child with JA. Doesn't mean it couldn't help, but it isn't a cure all for JA. Bella's arthritis is an auto immune disease and she was born with the gene. It's much different than the typical osteo arthritis most of us know about.
BUT, we as a family have been slowly transitioning to a whole foods diet and we are trying to exclude as many processed foods from our diets as possible. You wouldn't believe some of the chemicals and toxins found in the food we eat each day.....it's scary. I'm not saying we won't enjoy a soft pretzel, meal out, or eat some processed foods at parties. We are choosing to reduce them ad switch our family to a healthier lifestyle. As many of you already know, Chloe is already on a gluten free diet. So, she is pretty much on this plan already since I cook most of her food from scratch.
Each week I have been trying to learn news ways to cook their favorite foods in a healthier/homemade way. I have spent countless hours researching recipes and meal plans. My kids have barely even noticed the changes we have already made. They do grumble at the idea of ditching some of their favorite snacks, but I assured them that we would find yummy snacks.
My husband (who us to be my junk food junkie) has already changed 90% of his diet and has not been sick in about 6 months (which is a record for him). So, if our diet change helps Bella feel better, awesome...if it doesn't than at least we are changing our diets to improve our overall health.
Bella is having a rough week. Normally when you ask Bella how she is feeling she will say, "Good". That is catch all response which to us means that she is not in horrible pain, just manageable pain/exhaustion. The past 2 days she has given us a different(unexpected response) of "Ehhh". This means that she is feeling really crappy. I have noticed that she is getting tired earlier and earlier each night and is 1 second away from a meltdown at all times. The doctor/nurse has told us that it is a side effect of the treatments and the auto immune disease itself. The past 2 mornings I have had to peel her out of bed, literally. It took a lot of persuading to get her to school today. I reminded her that she was leaving early for a doctor's appointment so it was important that she tries to go and at least take her tests and get her homework. One of Bella's biggest complaints is how much school she misses because she feels like she is falling behind. In all honesty, she is missing a lot. Eventually, there will be less appointments and hopefully we get her into remission sooner than later. I try to teach her as much at home as possible when she is too sick to go to school. But it does not replace the instruction she is missing at school. We hope to get this worked out when we have her 504 School disability meeting next month. Bella loves school and she strives for good grades (she is hard on herself), so this will be the most important time for me to be her advocate. I know my child, what she is capable of doing, and how her JA I affecting her school. To some her grades are acceptable if they are B's and C's (honestly they are to me when I know she is trying her best) but to Bella they are not. I am trying my best to help her achieve her goals but also teach her that it's okay to get grades other than an A. I do love her determination and high standards, it will make her dream of being a doctor one day easily achievable. But I really want her to focus on her health right now.
Tonight she takes her next injection and we will teach dad how to administer the shots (just incase I am not here at some point). With each dose we hope we are another day closer to remission. I would love to see my vivacious little Bella to come back full force, it is the one thing I wish for every day.
Have a wonderful day and try to stay warm.
Here is a picture of her at school yesterday with her friend Emilia's Dad....he came to update the class on Emilia FINALLY being home from the hospital after a long month post surgery. Bella was excited that Emilia got to video message the class.
BUT, we as a family have been slowly transitioning to a whole foods diet and we are trying to exclude as many processed foods from our diets as possible. You wouldn't believe some of the chemicals and toxins found in the food we eat each day.....it's scary. I'm not saying we won't enjoy a soft pretzel, meal out, or eat some processed foods at parties. We are choosing to reduce them ad switch our family to a healthier lifestyle. As many of you already know, Chloe is already on a gluten free diet. So, she is pretty much on this plan already since I cook most of her food from scratch.
Each week I have been trying to learn news ways to cook their favorite foods in a healthier/homemade way. I have spent countless hours researching recipes and meal plans. My kids have barely even noticed the changes we have already made. They do grumble at the idea of ditching some of their favorite snacks, but I assured them that we would find yummy snacks.
My husband (who us to be my junk food junkie) has already changed 90% of his diet and has not been sick in about 6 months (which is a record for him). So, if our diet change helps Bella feel better, awesome...if it doesn't than at least we are changing our diets to improve our overall health.
Bella is having a rough week. Normally when you ask Bella how she is feeling she will say, "Good". That is catch all response which to us means that she is not in horrible pain, just manageable pain/exhaustion. The past 2 days she has given us a different(unexpected response) of "Ehhh". This means that she is feeling really crappy. I have noticed that she is getting tired earlier and earlier each night and is 1 second away from a meltdown at all times. The doctor/nurse has told us that it is a side effect of the treatments and the auto immune disease itself. The past 2 mornings I have had to peel her out of bed, literally. It took a lot of persuading to get her to school today. I reminded her that she was leaving early for a doctor's appointment so it was important that she tries to go and at least take her tests and get her homework. One of Bella's biggest complaints is how much school she misses because she feels like she is falling behind. In all honesty, she is missing a lot. Eventually, there will be less appointments and hopefully we get her into remission sooner than later. I try to teach her as much at home as possible when she is too sick to go to school. But it does not replace the instruction she is missing at school. We hope to get this worked out when we have her 504 School disability meeting next month. Bella loves school and she strives for good grades (she is hard on herself), so this will be the most important time for me to be her advocate. I know my child, what she is capable of doing, and how her JA I affecting her school. To some her grades are acceptable if they are B's and C's (honestly they are to me when I know she is trying her best) but to Bella they are not. I am trying my best to help her achieve her goals but also teach her that it's okay to get grades other than an A. I do love her determination and high standards, it will make her dream of being a doctor one day easily achievable. But I really want her to focus on her health right now.
Tonight she takes her next injection and we will teach dad how to administer the shots (just incase I am not here at some point). With each dose we hope we are another day closer to remission. I would love to see my vivacious little Bella to come back full force, it is the one thing I wish for every day.
Have a wonderful day and try to stay warm.
Here is a picture of her at school yesterday with her friend Emilia's Dad....he came to update the class on Emilia FINALLY being home from the hospital after a long month post surgery. Bella was excited that Emilia got to video message the class.
Tuesday, November 19, 2013
Week of many victories!
So much has happened since last week, I don't even know where to start. The new chemo injection is showing less side effects (so far) BUT she was exhausted the day after. I can tell that she gets tired quicker each day. The nauseous didn't seem to be an issue and nether did the headaches, so we hope it continues this way. We are planning on gradually moving her injection day to the weekend so that she doesn't miss too much school. Each week we will give it to her a day later until we reach the day we prefer. Bella and I are both confident in getting/receiving the shots that neither one of us is nervous this week....and we will show dad how to administer them this week too. We are up to 5 pills a day (sometimes another medicine if she has a side effect) and one injection a week, crazy that my 10 year old takes more pills than me. 3 of the pills help prevent side effects from chemo.
She is still in pain each day but we haven't seen any extreme swelling in over a week, which is awesome! This morning she had a rough start and was hurting, so she stayed home until she could get those joints warmed up. It gave her a chance to work on homework she missed last week during her hospital visit and recoup time after chemo. In a couple of weeks we start getting blood work drawn to make sure the chemo is not hurting her organs and to make sure her counts are track.....this will be something Bella will need to do on a regular basis.
We did get some great news last Friday; the insurance company has agreed to pay for the chemo injections(minus a co-pay) and they allotted Bella 8 more physical therapy visits. Bella's physical therapy visits are really important for her joints, it helps to reduce damage that could result in future surgeries. The insurance company isn't too keen about paying for them for some reason. We will celebrate these 2 victories...they may be small to some people, the are HUGE for us. I don't want to jinx ourselves, but I think there will be a huge insurance victory in the mail today or tomorrow.
Over the weekend we got to visit with family and attend or cousin's baby shower. It was a nice break from reality and we really enjoyed the much needed family time.
Last night Bella was presented an award through the organization she cheers for. We attended a banquet and Bella was presented a HUGE trophy called the Spirit of football/cheer award. This award is given to a player that is dealing with a disability and still toughed it out and participated. They gave Bella a wonderful speech, a standing ovation, and a gift certificate to Dick's Sporting Goods. Talk about an emotional night for mom, no one warned me that I would need tissues!
Through all of this going on with Bella, she was still able to get straight A's on her report card last week. She is truly a rock star! So proud of her!
Thanks for checking in on us........
She is still in pain each day but we haven't seen any extreme swelling in over a week, which is awesome! This morning she had a rough start and was hurting, so she stayed home until she could get those joints warmed up. It gave her a chance to work on homework she missed last week during her hospital visit and recoup time after chemo. In a couple of weeks we start getting blood work drawn to make sure the chemo is not hurting her organs and to make sure her counts are track.....this will be something Bella will need to do on a regular basis.
We did get some great news last Friday; the insurance company has agreed to pay for the chemo injections(minus a co-pay) and they allotted Bella 8 more physical therapy visits. Bella's physical therapy visits are really important for her joints, it helps to reduce damage that could result in future surgeries. The insurance company isn't too keen about paying for them for some reason. We will celebrate these 2 victories...they may be small to some people, the are HUGE for us. I don't want to jinx ourselves, but I think there will be a huge insurance victory in the mail today or tomorrow.
Over the weekend we got to visit with family and attend or cousin's baby shower. It was a nice break from reality and we really enjoyed the much needed family time.
Last night Bella was presented an award through the organization she cheers for. We attended a banquet and Bella was presented a HUGE trophy called the Spirit of football/cheer award. This award is given to a player that is dealing with a disability and still toughed it out and participated. They gave Bella a wonderful speech, a standing ovation, and a gift certificate to Dick's Sporting Goods. Talk about an emotional night for mom, no one warned me that I would need tissues!
Through all of this going on with Bella, she was still able to get straight A's on her report card last week. She is truly a rock star! So proud of her!
Wednesday, November 13, 2013
In Hershey all day ~Bella
Today I had to go to the hospital. I had to get my chemotherapy shot and learn how to do my shots. At first I was really nervous. My mom and I had to learn how to give me the shots at home. We practiced on a pretend circle that was skin colored. First, we had to wash our hands. Then, we had to take the tube of medicine and clean it with alcohol wipes. Then we had to put the needle into the tube of medicine. We had to suck the medicine into the needle without bubbles. Next, we had to wipe my arm with alcohol wipes. Then my mom pinched my arm and put the needle in. Then she had to push the medicine into my arm. Then when she was done she took it out and threw it away. We have to throw it into a hard plastic bottle for safety. I got the choice to put the needle in my arm, leg, or stomach and I chose my arm. I was most nervous when my mom put the needle in my arm because I thought she didn't know what she was doing. After I was done I got to pick from a goody bag.
(To Emilia): I THINK EMILIA IS THE STRONGEST PERSON EVER!
Then I had another appointment with a special eye doctor who needed to make sure the arthritis was not in my eyes. Guess what, it is not in my eyes! That is really good news. But I have to go back once a year to keep getting checked. If my eyes bother me at all I have to go back right away.
My eyes were so blurry after I left and the sun made them hurt so bad.
Today my knee and ankles hurt me and my back hurts a little too. I am so tired right now.
GUESS WHAT? Today I am started my food drive. I have been doing it for 5 years in a row. I want to get 2000 pounds of food. PLEASE DONATE! Help the needy.
BYE!
Friday, November 8, 2013
Like we don't have enough going on right now.............
I wish the insurance company could see the fear in my daughter's eyes when she realized she couldn't straighten her leg because her knee was too swollen and painful. Or see the disappointment in her eyes when she could not bend over to dress herself because the pain was too bad. Maybe then they would realize that the medicine they are denying to pay for is really necessary. Do they think the doctor's office would prescribe a chemotherapy treatment for a child if it were not necessary? Why would they pay for the needles if the injectable medicine was not going to be covered?
I am beyond frustrated with the insurance company.
I don't get it.
I am knee deep in paperwork for my child because I have to write 500 different ways that my daughter has Juvenile Arthritis. I have to write 500 different ways that she is now disabled. I have to be reminded over and over again that life is different for her. I have to jump through hoops that shouldn't be there.
All I want is for my daughter to be able to not worry about pain and side effects every day.
I will fight for my daughter every day or go broke paying for her treatments. I will not let the insurance company stop her from getting the treatments she deserves.
I am beyond frustrated with the insurance company.
I don't get it.
I am knee deep in paperwork for my child because I have to write 500 different ways that my daughter has Juvenile Arthritis. I have to write 500 different ways that she is now disabled. I have to be reminded over and over again that life is different for her. I have to jump through hoops that shouldn't be there.
All I want is for my daughter to be able to not worry about pain and side effects every day.
I will fight for my daughter every day or go broke paying for her treatments. I will not let the insurance company stop her from getting the treatments she deserves.
Tuesday, November 5, 2013
One word that can bring me to tears............
Disabled
I have finally taken the steps to apply for Medicaid benefits for Bella, which is one of those steps that was hard for me to take. I personally didn't feel right using these benefits because we can support our family and I didn't want to accept the fact that my daughter is now considered disabled. It's a hard realization to wrap your mind around. The doctor's and many others have urged me to take this step to help pay for these ongoing medical costs that are starting to pile up. So, I have spent most of this morning filling out MORE paperwork. Thankfully, you can do most of the work online, but it does involve a ton of information. I was trucking right along until the last page popped up telling me that Isabella was eligible for other benefits due to her disability. I don't think I will ever be able to get use to reading that word. I know what the disease is capable of doing to her, BUT we are doing everything possible to prevent long term damage. We are fighting everyday to get Bella into remission. We are trying everything the doctor suggests without a fight. But there is no guarantee to any of this. There is no specific combination of medicines or therapies that will make it happen. Everything is a gamble at this point.
Last night proved that anything can happen at any time. Bella called me into her room after she went to bed to tell me that her knee hurt really bad and she couldn't straighten it. I checked it out and noticed that Bella's knee was swollen and she couldn't straighten out. We did as the doctor instructed and we applied heat to her joint and wrapped her up in her heated blanket. She woke this AM in pain and limping around but she wanted to go to school. She is one tough chick!!
This means that she will have to sit out of competition cheer practice again tonight, which will make her pretty upset. Even though she hurts she still tries to do things.......she will often hide her pain so that she can still do things. But what Bella doesn't understand is that she causes more damage to herself when she pushes through her pain.
She is 10 and use to being an active kid........slowing this kid down is hard.
She was excited to go vote this morning with me.
I have finally taken the steps to apply for Medicaid benefits for Bella, which is one of those steps that was hard for me to take. I personally didn't feel right using these benefits because we can support our family and I didn't want to accept the fact that my daughter is now considered disabled. It's a hard realization to wrap your mind around. The doctor's and many others have urged me to take this step to help pay for these ongoing medical costs that are starting to pile up. So, I have spent most of this morning filling out MORE paperwork. Thankfully, you can do most of the work online, but it does involve a ton of information. I was trucking right along until the last page popped up telling me that Isabella was eligible for other benefits due to her disability. I don't think I will ever be able to get use to reading that word. I know what the disease is capable of doing to her, BUT we are doing everything possible to prevent long term damage. We are fighting everyday to get Bella into remission. We are trying everything the doctor suggests without a fight. But there is no guarantee to any of this. There is no specific combination of medicines or therapies that will make it happen. Everything is a gamble at this point.
Last night proved that anything can happen at any time. Bella called me into her room after she went to bed to tell me that her knee hurt really bad and she couldn't straighten it. I checked it out and noticed that Bella's knee was swollen and she couldn't straighten out. We did as the doctor instructed and we applied heat to her joint and wrapped her up in her heated blanket. She woke this AM in pain and limping around but she wanted to go to school. She is one tough chick!!
This means that she will have to sit out of competition cheer practice again tonight, which will make her pretty upset. Even though she hurts she still tries to do things.......she will often hide her pain so that she can still do things. But what Bella doesn't understand is that she causes more damage to herself when she pushes through her pain.
She is 10 and use to being an active kid........slowing this kid down is hard.
She was excited to go vote this morning with me.
Monday, November 4, 2013
Frustartion from a 10 year old.....
We had a busy but awesome weekend that included our 5K Fun Run/ Walk and After Party that was benefiting Bella's friend, Emilia. Emilia is the one battling Ewing's Sarcoma, a rare form of bone cancer. Bella and our family volunteered at the events this weekend and had such a blast. We love you Emilia!!!!!
As Saturday evening approached and it was almost time for Bella to start round 2 of chemo she brought on her skills of persuasion in hopes that we would post-pone her treatment. At one point she almost had us, but we help strong and began the treatment as planned with the new medicine to help with side effects.
The first part of Sunday she was not feeling so great and laid in bed reading. Though the new medicine helped with her nausea, it did nothing to stop her headache and exhaustion. We decided around lunch time to peel Bella out of bed and take her to visit Grammy and Pappy in hopes that it would take her mind off of feeling crappy. Half way through the visit she actually perked up and was being her usual sassy self. Which was quite a relief.
But then later that evening she had one of the biggest meltdowns I have ever witnessed. She was upset about school work and mad that she had to clean her room. Bella just had enough and totally exploded with frustration.
When I woke up this morning I realized that I often forget my daughter is "sick" and going through a lot and I shouldn't pile on the tough love too thick. I need find a happy medium for her until she gets use to all of this. Honestly, I forget she has JA because Bella doesn't spend her days complaining because she wants to try to be as normal as possible. Don't get me wrong, I can see it in her tired eyes and her limp down the hall each morning.
Honestly, I have been quite cranky myself lately because this is A LOT to deal with. My friends have actually brought it to my attention and I feel horrible. I'm not trying to be miserable, I am overwhelmed right now. Here is my public apology to my friends and family for not being myself, I am sorry. I am aware and trying to fix it, so please bear with me. It is hard to feel so helpless and know that your daughter's health/well being is in the hands of doctor's/insurance companies.
The mounds of paper work for insurance, school, and doctors are overwhelming. The insurance company has been the biggest headache for us right now. I got a bill in the mail for one physical therapy visit for $170 because the insurance company denied it, after they approved the visits. IT IS FRUSTRATING!!!! She attends these appointments 2-3 days a week. I am sure I will get it sorted out BUT not without a struggle and a huge headache first. What makes me so mad is that the physical therapy is one of the things that will truly help my daughter from spending most of her life in a wheel chair (which could cost the insurance a ton of money) and they want to deny the preventative care. I actually dread getting my mail each day, thank you health insurance! ;)
So, we've updated the doctor as they asked and we wait to hear back from them. I sent Bella to school for a half day in hopes that her friends would help make her feels a little better.
Thanks for checking in on us......we are surviving, just a little crazy right now. =)
As Saturday evening approached and it was almost time for Bella to start round 2 of chemo she brought on her skills of persuasion in hopes that we would post-pone her treatment. At one point she almost had us, but we help strong and began the treatment as planned with the new medicine to help with side effects.
The first part of Sunday she was not feeling so great and laid in bed reading. Though the new medicine helped with her nausea, it did nothing to stop her headache and exhaustion. We decided around lunch time to peel Bella out of bed and take her to visit Grammy and Pappy in hopes that it would take her mind off of feeling crappy. Half way through the visit she actually perked up and was being her usual sassy self. Which was quite a relief.
But then later that evening she had one of the biggest meltdowns I have ever witnessed. She was upset about school work and mad that she had to clean her room. Bella just had enough and totally exploded with frustration.
When I woke up this morning I realized that I often forget my daughter is "sick" and going through a lot and I shouldn't pile on the tough love too thick. I need find a happy medium for her until she gets use to all of this. Honestly, I forget she has JA because Bella doesn't spend her days complaining because she wants to try to be as normal as possible. Don't get me wrong, I can see it in her tired eyes and her limp down the hall each morning.
Honestly, I have been quite cranky myself lately because this is A LOT to deal with. My friends have actually brought it to my attention and I feel horrible. I'm not trying to be miserable, I am overwhelmed right now. Here is my public apology to my friends and family for not being myself, I am sorry. I am aware and trying to fix it, so please bear with me. It is hard to feel so helpless and know that your daughter's health/well being is in the hands of doctor's/insurance companies.
The mounds of paper work for insurance, school, and doctors are overwhelming. The insurance company has been the biggest headache for us right now. I got a bill in the mail for one physical therapy visit for $170 because the insurance company denied it, after they approved the visits. IT IS FRUSTRATING!!!! She attends these appointments 2-3 days a week. I am sure I will get it sorted out BUT not without a struggle and a huge headache first. What makes me so mad is that the physical therapy is one of the things that will truly help my daughter from spending most of her life in a wheel chair (which could cost the insurance a ton of money) and they want to deny the preventative care. I actually dread getting my mail each day, thank you health insurance! ;)
So, we've updated the doctor as they asked and we wait to hear back from them. I sent Bella to school for a half day in hopes that her friends would help make her feels a little better.
Thanks for checking in on us......we are surviving, just a little crazy right now. =)
Friday, November 1, 2013
I know it will get better, BUT.....
This has been a tough week in the Anderson house. I'm sure it has a lot to do with the holiday because even for a healthy family it adds additional stress to the mix. Since the start of the week was consumed with Bella feeling pretty crappy from the chemo, it lead to a chaotic end of the week. I spent a couple of days going back and forth with her doctors trying to find a plan of attack for this weekend's round of chemo. We are trying to make it so that Bella does not miss too much school but also still have the ability to have a social life (it is one of the most important parts over her overall wellness). We could give her the chemo Friday and allow the weekends to be consumed with all the side effect issues but then she would probably start feeling left out and miserable from lack of social interactions. So, we have decided to make Saturdays the chemo days for Bella and if she has side effects the worst will be on Sundays and maybe Monday. It seems as if the first 2 1/2 days after she takes the dose she feels the worst. She was tired all week and by last night she was totally wiped out. But they say that her body could get use to it, hopefully.
But the doctor also wants us to consider switching Bella to injections instead of the pills. They are going to add one more preventative medications to the list this week to help with side effects. They are willing to give the pills one more week. They will teach us how to give the shots and from what I heard, after the first time it is no big deal. So we will see.
When we get crazy busy in our lives it is easy to forget that Bella has an auto-immune disease because she doesn't always look like something is wrong with her.....but last night was a quick reminder of what we are up against. When my 10 year old asked to go home to bed less than a hour into trick or treat, I quickly was reminded how the auto-immune disease if effecting her life. Not many kids would bail on one the most exciting days of the year mid way through. What kid doesn't want to come home with bragging rights to the largest sack of candy collected? Halloween is one of our favorite holidays because we normally host a party and haunted house for the kids and this year it wasn't possible. All because we were consumed with doctor appointments, therapy appointments, and mounds of paperwork we have to fill out for insurance, doctors, and the school. Plus the increased cost of medical care for Bella, left us with surprise bills and copays. I know eventually we will sort it all out because we always do. For now, we have to make a lot of changes in our lives. So, please don't be offended if we start saying no and attend less activities.....we just have to refocus our time and energy until we can fully adjust to dealing with a life long auto-immune disease.
The one thing that Bella wanted this week when she felt crappy from the chemo was for mom to lay next to her and snuggle. All she wanted was my undivided attention and I was thankful that I was able to give it to her. So, I am taking this cue from Bella and realizing that the Anderson's need to slow down and make extra time for each other as a family.
Wish us luck on this week's round of chemo and pray that Bella's body will be more accepting to the treatments.
But the doctor also wants us to consider switching Bella to injections instead of the pills. They are going to add one more preventative medications to the list this week to help with side effects. They are willing to give the pills one more week. They will teach us how to give the shots and from what I heard, after the first time it is no big deal. So we will see.
When we get crazy busy in our lives it is easy to forget that Bella has an auto-immune disease because she doesn't always look like something is wrong with her.....but last night was a quick reminder of what we are up against. When my 10 year old asked to go home to bed less than a hour into trick or treat, I quickly was reminded how the auto-immune disease if effecting her life. Not many kids would bail on one the most exciting days of the year mid way through. What kid doesn't want to come home with bragging rights to the largest sack of candy collected? Halloween is one of our favorite holidays because we normally host a party and haunted house for the kids and this year it wasn't possible. All because we were consumed with doctor appointments, therapy appointments, and mounds of paperwork we have to fill out for insurance, doctors, and the school. Plus the increased cost of medical care for Bella, left us with surprise bills and copays. I know eventually we will sort it all out because we always do. For now, we have to make a lot of changes in our lives. So, please don't be offended if we start saying no and attend less activities.....we just have to refocus our time and energy until we can fully adjust to dealing with a life long auto-immune disease.
The one thing that Bella wanted this week when she felt crappy from the chemo was for mom to lay next to her and snuggle. All she wanted was my undivided attention and I was thankful that I was able to give it to her. So, I am taking this cue from Bella and realizing that the Anderson's need to slow down and make extra time for each other as a family.
Wish us luck on this week's round of chemo and pray that Bella's body will be more accepting to the treatments.
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