I am gonna be honest, this month has been rough and this last week has been HELL!! Since Paige’s last doctors appointment she has only had a couple of ok days and one good day. The rest of them have been terrible. The pain she suffers through everyday would cripple most of us. The fatigue is at an all time high and there are some days that she can barely lift her head off of her pillow. It seems like every symptom is on overload and new ones are popping up everyday. To write all she suffers with on a daily basis would probably take a whole day. And I know no one has time for that, so I will save that for another post.
Today I want to talk about what Lyme robs from you, not just the patient, but everyone around them. Lyme is a thief and it steals your whole life, what was once normal is just a faded memory, what you once could do is just a dream, Lyme comes in and takes over every.single.part. of your life. Your schedule, your diet, your heart, your soul, your faith and your friends.
Before getting sick, Paige was a spunky, vibrant, active, funny and determined teen ager. She was VERY competitive and always had to do just a little better than her brothers. She has a very solid life plan and was working hard towards that goal….then she got sick! And our strong and confident girl is struggling with everyday tasks. There are days she doesn’t remember how to dress herself, she can’t count to 10 to count out her medicine and some days she can’t even feed herself. In 8 months, Lyme has robbed her if the ability to do basic tasks. For the most part she is wheelchair bound, we did have about 2 months where she was able to walk with assistance, but the past month or so, she is back in her wheelchair. For a teen that was active, to have to rely on the help of her parents or siblings has been hard. She isn’t one to ask for help (she ‘may’ come by that naturally from her mother) and admitting that she can’t do it on her own is hard for her. Lyme is stealing her confidence.
These physical challenges we can overcome together, even if we find that they are permanent like her doctor fears, but the loss of her spirit is harder to overcome. Her positive, ‘can do’ attitude is being replaced with a ‘I can’t, It is too much’ attitude. One that makes her want to give up. Yesterday she asked me to let her die 3 times, she told me she didn’t want to fight this anymore. You have NO idea what this does to a moms heart. Selfishly I want to scream, ‘You better keep fighting!!’, then I stop and think of how bad things must be for her to even say this to me. Now, Paige is our dramatic one, so if she said this just willy nilly I wouldn’t pay much attention to it, but when she says it through sobs I know it comes from her heart. Through my tears and pain I asked her if I could record her yesterday, she at first said no, but I told her that we NEED to share the good, the bad, and the ugly, we need to bring awareness to what they disease does and I want this video to show her how far she has come once she beats this horrible disease. Here is the video, warning it is raw and emotional:
This is what Lyme does, it brings a once very strong and determined girl to tears and thinking death would be better than fighting. I understand why suicide is the #1 killer of people with Lyme. The constant pain, the ringing in the ears, the voices/noises, not being able to bath yourself and the loss of basic skills just defeats you. You want to give up and just be done! This feeling is not unique to Paige. I follow MANY Lyme pages and blogs and everyone who suffers from Chronic Lyme has had thoughts of suicide and/or giving up.
Lyme doesn’t just affect the patient, it is a family disease for sure. We went from being an active, always on the go, doing family activities all the time to now not leaving the house for weeks at a time. Our diets have changed, our activities have changed and our life has changed. Paige is affected by noise, so we have to keep the little ones calm and quiet, Paige is affected by vibrations so we have to keep music and the speakers turned down, Paige is affected by light so we turn all but one light off in the evening, Paige can’t go out so we all stay at home with her. We have chosen to support and embrace Paige, but that is hard for her siblings sometimes. It seems like we are always saying no anymore. No, we can’t go hiking because Paige can’t be in sun or we can’t push her wheelchair. No, we can’t go out to eat because the noise, lights and vibrations will send Paige into an episode or seizure. No, we can’t do 4H this year because we will have to be away from home too much. No, we can’t go to mall because it is full of germs and we can’t risk Paige catching something. No, we can’t go to so and so’s house because they just want to question things or judge our choices and that is overwhelming…and the list goes on. What was once normal, is now gone. Lyme has robbed us of our family activities and our ability to give our kids those fun times.
Lyme has also changed our relationships. We have lost friends, Paige lost her best friend and relationships that were once strong are now weak. Most people don’t understand the severity of Lyme and that you really can’t do anything most days. They don’t understand that our schedules are not our own, but instead ruled by Lyme Disease. But I think for most, they don’t know what to do or what to say. They don’t know enough about Lyme to know our day to day struggles and they are at a loss for action and words. Because of this they stay away. We dealt with this during our pregnancy losses also, when people aren’t sure what to do or say, they do nothing. And I don’t fault anyone for that, the unknown is hard and often times scary. But it makes this road long and lonely!
I hear all the time, let me know if you need anything. And to be honest, I usually don’t. And it isn’t out of pride or that I don’t want to ask for help, it is because I don’t know how you can help. I don’t know what to pass onto someone else. It takes me longer to explain Paige’s routine than it does to do it myself. I would have to prepare her food or have things ready that she can eat, so I might as well do it myself for everyone. Our shopping has changed and we have to buy very specific items, so to send someone else would be a challenge. And this is hard for some to understand. They feel that we don’t want help or that we are trying to do it all on our own, and while we do it on our own, it isn’t because we want to, but more because we have to.
I hear often, call me if you want to talk. And to be honest, talking is the last thing I want to do and I usually just end up crying…having to actually talk about Paige and her Lyme makes it more ‘real’ if that even makes sense. I have to ‘deal’ with it, I have to acknowledge it, I have to feel it, and that makes it harder sometimes. Life is just too overwhelming and it is easier to just go through the motions and take it day by day then to actually ‘feel’ it. I don’t know if that even makes sense to someone not walking through a tough time, but I just can’t face it most days. Which is weird, because I look at Paige and I am faced with it, but I suppress my emotions and deal with things. Once I start to ‘feel’ I am afraid I am going to crack and I need to be here and be strong for Paige. I think this has almost made me robot like, like I don’t have any joy, but I think it is my survival mechanism.
Lyme has also robbed our financial security. We had prided ourselves for living a cash, debt free lifestyle. We had a smaller school loan, but no credit card debt at all or car loans. That changed when Paige got sick. When trips to Dr’s need to be made, when therapies are needed, when supplies are needed to make her life easier and when medicines need ordered all the time, credit cards had to be used. When every single extra penny went to Paige and her care, other things got neglected and those are catching up with us. Both cars need tires, we just had to replace the radiator in the suburban, the van needs a water pump and motor mounts, Justin needs new glasses and a very expensive eye procedure, the littles need shoes and the list of needs is a mile long. We went from debt free to now having debt and that is a HUGE stress to both Jim and I. We are thankful we had the credit cards to be able to get Paige started on her treatments, but making those payments now makes things even tighter financially for us. We are thankful for Jim’s new job, and the small raise that he got, it will help us pay off the debt, but it will take a couple of years.
Paige’s care is currently around $2500 a month, which is about 50% of our current income. This is not therapies or supplies, this is just medication and doctors appointments. We have been blessed with amazing friends who have donated to Paige and we are constantly doing fundraisers, but it still isn’t enough. We still fall short and have to use the credit cards to cover things. We aren’t sure what we will do when the donations stop coming and the credit cards are maxed, but I pray that don’t come to that point.
This road that the Lord has put us on it hard…it is hardest for Paige…but it is hard for all of us. Finding a new normal and learning how to live a life with this disease as our companion is hard. It isn’t one I would have chosen, it isn’t one I happy to be on, but I trust enough to know that God has a plan. We don’t know what it is and we may never, but He has a plan. And He loves our girly so much more than we do and He will get her through this. The road will be long, and we will have many ups and downs along the way, but I hope we come out on the other side a changed family with an amazing story to tell.
How can you help?
1. If you believe in prayer, please pray for Paige. Pray for healing and that her body will continue to respond to the treatments. Pray for her dad and I as we have to make the choices about care and treatment and what is best for Paige. Pray for her siblings, whose lives have also been turned upside down. Nothing about our current life is ‘normal’ and that is hard for everyone.
2. If you are able, send Paige a note, card or picture. Let her know that you are thinking of and praying for her. We have kept every card she has got and hang pictures up around her bed.
3. PLEASE, share Paige’s story. Share about Lyme Disease. We need bring awareness to Lyme. We need to make the government wake up and acknowledge that Lyme exists and they need to do something about it.
4. If you would like to send a gift to Paige, we have set up an Amazon wish list and you can send something from there.
5. If you would like to help with some of the costs of her treatments, you can send donations via PayPal, (email is PRIDERECON@AOL.COM), venmo @Jennifer-vanBreemen or vanBreemenmom@gmail.com,
or check or money order (message for our address)
6.. You can help with the cost of Paige’s very strict diet (Gluten, sugar and dairy free and all organic and non GMO with HIGH animal fat foods) by sending gift cards to Whole Foods, Sprouts or Aldi’s. Paige’s special diet is about $300 a month, this is in addtion to her treatments. We don’t have any good health food stores close, so we need to drive 45-60 min to get Paige the food that she needs.
7. Please share our fundraising page with those that you know. We haven’t set up a go fund me, because we would rather ‘work’ for our donations, so we are always doing fundraisers. We want people to get something for their money 🙂 so we try and find fun ways to earn the money.
8. We are doing a charity ride in Arizona for Paige and Lyme Awareness. We need donations for the raffle and for food. And we also need help spreading the word. Here is a link to the event, if you can donate, or help, or spread the word, we would really appreciate it.
9. Support the family, visit, send notes, bring meals, just be there. They don’t always want to talk about Lyme, but they need friends who can be there.
10. This is the hard one, please don’t question the motives of the family. Just know that they love Paige dearly ad are doing the best for her. There is no ‘one size fits all’ for Lyme Disease, so just because it worked for you or your friend, doesn’t mean it will work for Paige. We have an amazing Dr who has successfully treated over 1,000 Lyme patients. We trust her and are following the protocol that she give Paige. We understand this is different than others and not what everyone would do, but we appreciate you respecting our choices!
THANK YOU to everyone who had read this, supported us and prayed for us. Words can’t express the gratitude we have for each and every one of you! ❤
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