I haven’t posted a longer post in a while, so thought since I have a couple of minutes I would write one.
How is Paige today? A question I get asked several times a day. And depending on the day and sometimes the time of day, my answer will be different. But I will try and generalize what is going on.
Migraines: thankfully these aren’t coming as often and don’t stay for days at a time. We have a rub that a friend gave us, and that combined with a detox bath or foot soak have been helping alleviate the migraines fairly quickly.
Walking: This is hit or miss. Even yesterday she went from walking with assistance to needing the wheelchair to last night walking the dogs with the littles without any assistance. Most days lately she can walk with assistance or her walker, we haven’t needed her wheelchair as often as we did just a few weeks ago.
Weakness: this is the area that is getting worse. Paige is always tired and she it feels like it takes every ounce of energy just to move her body. I am sure part of it is being nearly bedridden for a few months, but I know from what I have read this is also a classic symptom of Lyme.
Eating: This is the area that continues to get worse. Even with new supplements to help with appetite and how she feels after she eats, she still doesn’t each enough. It is a daily struggle to get to her to eat anything. She seems to like CPK’s gluten free, BBQ chicken pizza the nest of anything, so we keep a couple of those in the freezer at all times. But even that hasn’t tasted good the past few days.
WHY doesn’t she eat? well there are a few reasons. First, everything has a funny taste to her. We assume because of her medication, but nothing tastes right. She also feels sick after she eats. Never throwing up, just feeling terrible. She also is NEVER hungry. Part of me thinks that is because she takes medicine 8 times a day and has to take lots of water to get the over 21 pills (each time) down and then take a small bite of something to get the nasty drops down. She feels full after the pills and water. I don’t know…but eating is a huge concern right now.
Chest pain: this is gotten way worse the past week. We assume maybe the heart or chest muscles are is where the Lyme is targeting right now. We have put a full out assault on her brain and ears and those are clearing up…so maybe they are moving to her chest. Whatever the cause, it is VERY painful. Sometimes she can hardly breath due to the pain. The other night we tried EVERYTHING and she could not find any relief. Like all things Lyme, we know she will eventually feel better and this symptom won’t last forever, but when she is in so much pain she is crying for hours on end, it is hard to watch.
Mood: this also comes and goes. One minute she is a warrior ready to kick Lyme’s butt, the next she is in a heap of tears. We know this also is a part of Lyme and we also know from her genetic testing results that one or more of her gene mutations can cause this. So, we just try and be supprotive and roll with the mood swings.
Focus, speech: This may be getting a wee bit better. She doesn’t seem to stumble on words as much as she did. She still forgets words or what she wants to say, but there isn’t much stuttering or stammering for words. So, a slight progress. She still has a tough time focusing. She said the other day she read the same page in her book 9 times before she just put it down. We were hoping that when we saw the Lyme leave her brain we would see a bigger improvement in this area, so we are a bit discouraged. BUT, we still are hopeful that there will be complete healing.
I am trying to think of other areas to list, but are drawing a blank, I’m sorry. Basically, we are seeing little steps forward in her treatments and then steps backwards. We see some treatments working great and others not quite as fast as we would like. We are thankful that most days are ‘manageable’ and that she isn’t always feeling like death. We continue to support her and be there for her and encourage her when needed.
We have a doctors appt on Friday, this one is in San Diego and we are so bummed we have to drive to the beach for her appt. (insert sarcasm). Justin and I will take her to her appt and then hit the beach for dinner. We have been told that the sand, water and energy from the beach can be very healing. So, we will give it a try and see how she reacts.
OHH, we had her out yesterday, to drop her sister off at camp. And she tolerated the drive AND eating out well. (I had a free meal for my birthday and a gift card so I took everyone to dinner) She didn’t eat much at all but she didn’t need to leave or go into a mini episode, at dinner, at the camp or in the car. We are SOO thankful for these small improvements.
Please continue to pray for healing! We need healing from Lyme and that there isn’t any permanent damage. Pray that she can sleep better. Pray for the chest pain as that seems to be the worst right now. And as always pray for financial favor. This journey is NOT cheap. Her current protocol is over 60% of our gross income. There is NO WAY we can pay for this on our own. It is only through amazing friends and family and our many fundraisers that we continue to give Paige the best care possible with the best therapies and treatments. We thank everyone who has prayed, shared and helped. It really is a blessing to know so many are willing to help your child!!
PayPal information to give:
Amazon wish list, I mainly have needs on there right now, as Paige hasn’t voiced any real desires lately. I will add any as she mentions them.