It has been awhile since my last update (almost a month). Before I give an update I would just like to say thank you to the countless people who have been praying for me - I am so grateful for you support and encouragement. God has been working and I am so blessed! Sometimes pictures speak volumes more than my words can..... so after my update I will give you a little glimpse of what my last month has looked like.
My health has improved drastically over the past month. Things that I wouldn't have been able to do a month ago - such as walk to the park, or carry loaded laundry baskets, I am now able to do without too much adrenaline being released in my body (think tight throat and chest, shortness of breath). I am able to help lead worship again at church (though singing high is a bit of a struggle still). I am able to make it through larger periods of time without having to sit down and take a break. It is a wonderful improvement.
Twenty steps forward, three steps back. With improvements, also comes the reality checks. In feeling better I was doing more, being a little (I mean very little) less strict with my sugar intake, and resting less, which in turn caused some set backs. The anxiety felt as though it was creeping back in... I described it to my Doctor as a Gray cloud (which is much better than the storm cloud that I was feeling before) but noticable enough that I began to get concerned that I was regressing. I was also having more issues with my adrenals and histamines filling my throat and my chest... I feeling that I will not miss when it is finally gone. My doctor increased my one supplement and told me no sugar.... like I said I thought I was being good but I cheated a little and boy did it make a noticable difference. I didn't notice anything with my stomach so I thought I was good, but he told me that I can only do natural sugars and I have to always eat them with a protein or a fat.
I have been very strict this week on my diet which is still a modified AIP diet (Auto Immune Protocol) with a low histamine diet. Basically veggies and meat with a little fruit and some gluten free and dairy products thrown into the mix every now and then.
Now about my summer - I am so thankful for God's continuing to heal my body which has allowed me to speak and serve at several camps this summer. I did have to back out of one camp which made my heart sad but so thankful my husband took me up to visit the Group Workcamp in Scranton PA and also thankful for my friend DKB for stepping in for me and letting me tag along on site visits. I was even able to see many past campers and that brought my heart great joy!
DKB MCing at Scranton Workcamp
At the end of July I got to do a 12-13 year old camp at CRC. We looked at Surprising Stories of Jesus. It was a great week and Ella had a blast hanging out with the cabins.
Learning about Lazarus
Enjoying my favorite holiday at camp
Sharing what God taught them at camp
Right after that we headed to Smicksburg PA to Little Mahoning Bible Camp where a group from our church served for the week. This was a family mission trip and we had a great time. I was grateful to have a kindred spirit in the kitchen there to help with my food - she even made me a wonderful GF/DF cake for my birthday!
Birthday selfie (or an Us-y as I call them)
My yummy birthday cake
Teaching them how to tye-dye
Enjoying some quality time with Rebecca and Becca - painting the bathroom entrance
Our mission team
After that we came home for a week to enjoy our town's festival called Dutch Days - I was able to help in a few stands throughout the week, but did have to back out of one due to the intense heat (heat and adrenal fatigue do not mix! Thanks Fred for covering for me)
Helping make potpie
And this week I am once again serving at CRC (Christian Retreat Center in East Waterford, PA). This place is a place that I have grown to love and feels like home. The cook Mindy has taken my special eating plan as a challenge and creates some amazing dishes to spoil me with. This week is TIMS (Together in Mission Service) and the theme is Holy Ground. Join me in praying that God's word would challenge these students and leaders.
Prayers are appreciated as later this week I will get all my updated blood work results, as well as prepare to head out to my last camp of the summer - our church camp.
I just looked got back from an appointment and it is once again raining in Central PA - if you aren't from here it seems as though this is the norm.... cloudy, dreary, wet, sloppy... I am sure I could ask the local weather expert (Joel Sny the Weather guy) for some other fun descriptive words, but needless to say the weather reminds me of how I have been feeling over the last several months.... a dark cloud of pain, frustration, sadness, confusion had consumed me and I would be lying if I did say it consumed me.
BUT, (one of my favorite words in the bible, I call it a holy but because when it is used it mean that something good is coming) in the midst of the rainy season, there is sunshine, there is hope, and there are reminders of God's goodness. This week for the first time in months I have felt a little better! I have had some relieve from the anxiety portion and that my friends is something to celebrate. I went the whole week without having a panic attack or crying.... (that is being very transparent) the doctor and I talked about this on Thursday and he asked how I was before this whole thing started as far as being emotional, I responded I have always been the tough girl kind, not a lot of tears, not a lot of emotion, more of a doer type/a thinker..... then he said just listening to me talk I sounded lighter and not as burdened - Very True!! It is a like a cloud has been lifted.... I can't explain it, but I love that there has been some freedom in this area.
My sunshine package from the Zagames
There have been some great moments of sunshine this week for me. First of all I finished up the school year which is a major accomplishment with all that I have been through the last few months. I have had some great surprises in the mail.... first from the Zagame Family who sent me a box filled with yellow sunshine themed goodies! Thank you so much for your kindness - it meant so much to me that you would do that for me. Then I got a care package and a card from my friends at Group Mission Trips.... I felt so loved that they would take the time to do that for me, especially after having to cancel out on doing a camp for them this year because of my health - let's just say that was a very difficult decision. Then Jackie Matter and her girls showed up several days and weeded my flower beds and my garden..... I was even able to get my beans planted before the rain (hopefully they don't get too much rain). Christianna Maurer, Sandy Sieber, and Melissa Erdman have all dropped off meals that are my crazy diet approved - they have been delicious and was a much appreciated surprises after a long days of inservice meetings. Another glimpse of sunshine was being able to actually play and sing for worship band this week for church. It was still a bit taxing on my body with all my adrenal issues but it was so nice to be part of the band and lead singing on one of my new favorite songs - Is He Worthy by Andrew Peterson.
My care package from Group Mission Trips
So as far as an update is concerned, I did have an appointment this week and we reviewed my latest bloodwork and was able to ask my list of questions. The conversation started with addressing the great improvements in the panic/anxiety area and as we were talking the doctor said to me, You know I really feel like God is going to use this part of your story to really help people, and share how you got through this dark time in your life.... I responded that I feel like God already has started using it... and I am not even through it! How cool is that my doctor said that! Anyway, so my bloodwork just confirmed some things that we already knew... Mast Cell Activation causing Extreme Adrenal Fatigue and Extreme Gastritis which is causing my body to fill with Histamines (that is my basic diagnosis, though it is a little rough when your doctor uses the word extreme to describe all your symptoms). Anyway, the bloodwork showed that my body has created an anti-body to B12 (that's not good by the way) so my body is attacking the one thing that I really need to get better. He added one more supplement and suggested I get my B12 shot as soon as possible to try to keep as much B12 in my system as possible while trying to stop the antibody. Not sure if any of that makes sense but basically my body is working against itself - so we have to calm all this down to help it function properly.
So what does that mean as far as how I feel and what I can do.... well in a nutshell; I am still restricted greatly on what I can eat - no gluten, no dairy, no soy, no sugar, low histamine diet - for lack of a better word.... it sucks and at times it makes me want to cry - the most difficult part is the low histamine foods (no strawberries, spinach, vinegar (ps every dressing and condiment has vinegar) no lunch meat or processed meats, no cashews or walnuts, no fermented foods, etc). I still taking about 30 supplements a day as well as two powder drinks to help my body recover, but I am able to now just take a half of a pill (actual medication) to help with my brain health - but it also helps me to sleep soundly, now I just have to take my anxiety meds as needed instead of daily which I had been doing for the last two months. I am still tired a lot (but I have to remember my Epstein Barr was super high - aka Mono) and my adrenal system likes to go into fight or flight just by carrying a basket of laundry to the laundry room, but I have learned when I feel that racing feeling in my body, I must just sit down, let it calm down, and then try again. Still no exercise but I can try to do short walks close to home unless I feel the racing then I need to rest. My throat still feels tight and gets filled with histamines on and off throughout the day, but I am learning some tricks to help that and now that I understand what is happening I definitely panic less as I know my stomach and adrenals are not playing nicely with my body.
My doctor has mentioned the words months lately as a reference to when I should be feeling more normal.... I pray that it will happen more quickly than a few months, but as I wait and as I deal with the symptoms I will celebrate the improvements and celebrate God's faithfulness. He has walked with me through this dark challenging season, He has provided great encouragement for me along the journey. He has blessed me with an amazing group of friends who have called, written, texted or just stopped in to help me and visit me - I can't thank you enough! It seems lately every time I turn on the radio the song by Josh Baldwin called Stand in Love is playing - the Lyrics say, my fear doesn't stand a chance when I stand in your love. That is my prayer daily that I would stand in his love and be reminded that this is his battle and not mine to fight. I will rest in that!
As you can imagine the last four months have taken a toll on me as a wife but also has a mom.... it is so difficult to drum up energy to play and enjoy time with my very active 7 year old when I feel as though I have been hit by a car.
Last night we were in our jammies at 5:30 and snuggling on the couch (because that is what I had the energy for). As I started to braid her hair, I commented that it had been a long time since I had braided her hair and she said, it's because you have been in the hospital so much. I guess my three trips to the ER have made an impact on her, but she also may be thinking that every time I went to the doctor it was a trip to the hospital.
When Ella sees me struggling, she will often come up and give me a hug and pray for me on the spot, that does my heart good to know that my child is praying for me. I think if I hadn't been crying already I would have started the first time she prayed for me.
Every morning before school Ella would help me get out my supplements for the day.... I wrote how many of each on the top of each bottle and she counts them out and she makes me my Relax Max Drink while Joel makes my smoothie. The only down side to it is the a few of the lids are the same size and they may or may not have been switched last night - but I caught it after just one day of take an extra B vitamin or two.
We have had to do life a little different the last few months. I have missed some of her games and activities which I hate to do, but she has handled it as well as possible. We have eaten supper on the couch a lot, we have watched a lot of Tiny House shows, and played a lot of Rack-O - but for such a time as this.... this is what we do to get by.
On good days we go outside and I sit on the chair and she plays, and helps me in the garden. Now I don't want to paint a picture that it is always daisies and roses, because it surely is not.... we struggle I struggle to be patient, I struggle to be energetic and Ella struggles to be understanding, and struggles to not complain about not being able to do something she wants to do.
All this to say - I am so thankful for my little family and all they have done for me. God knew that I would need them and I have needed them and continue to need them to help me walk through this journey. When I don't feel like I have much to be thankful for..... I am reminded I am blessed beyond measure with a family who loves me and I count that as a true blessing from God!
This morning as I struggled to get out of bed, I noticed the smell of something cooking in the kitchen along with the rumble of the Ninja (which is out smoothie machine).... as I stubbled to the kitchen after my shower I found my husband busy in the kitchen cooking chicken and making my daily smoothie will with my newly approved foods. But the chicken had me stumped.... so I asked what is that for? His reply.... I knew you would need something you could eat for lunch today so I thought I would make you some chicken! You see we have some great leftovers in the fridge but leftovers from more than a day contain histamines and I can't have histamines. So packing approved lunches has been a struggle, going out to eat has been a struggle, having energy to cook has been a struggle.... but my dear husband has recognized how challenging things are.... he recognizes the moments in the day that cause stress or cause me to feel flustered and he steps in..... as has Ella (but I will save that for another post)
My family has sacrificed a lot over the past months and they have picked up my slack. They have done extra chores, cleaning, laundry, planting, watering.... but the best part of what they have done is they have rested with me. They have snuggled on the couch after a long day when I have no energy left and we watch Tiny Houses and talk about whether or not we could live in one... Ella is sure that we could... and then I remind her that she would have to get rid of ALOT of her toys and dolls.... then she quickly changes her mind.
I know on our wedding day, we didn't say the traditional vows, but on our wedding day - I know we promised each other to be partners in life, whatever life brings. My husband has done that - in more ways that I can count. I don't know how long this will continue, but one thing I can be sure of is that I have a man who will walk through it with me, and when I feel hopeless or I feel alone, I am reminded that God is near because he has used my husband daily to show me just that.
I know Joel's love language is not words of affirmation, but to me part of my daily reminders is to find things to be thankful for in the midst of feeling crappy - and today I am reminded how thankful I am for my Husband especially!!!! Joel Wade Snyder - thank you for being the hands and feet of Christ in my life! I love you to infinity and beyond..... plus one!
"A Cord of three strands it not easily broken" Ecc. 4:12
