Wow this year is almost over with. It was a whirlwind for me, what about all of you?
I am sorry to have drifted off of the face of the blogging world for so long. The events that have transpired in my life have been all consuming and difficult to find the words to express in the times when I have sat down to attempt blogging. I never can quite find the resolve to press the publish button. I’m not sure why.
I’m on a two week break right now from caregiving (more explanation soon) so I think it’s probably a good time to update my blog.
I’m just going to jump into everything because it’s hard to know where to begin and I’m sure I’ll leave so many things out, but I’m just going to keep this as short and sweet as possible.
This year my mom was diagnosed with early onset Alzheimer’s disease and vascular dementia at the age of 61.
It’s always hard to figure out what to say after those words. I’m at a loss for what to really say about it.
In January, we moved my mom in to live with me and my husband. She was previously living with my grandmother. I’m her full time caregiver and hope and pray that I will continue to be able to care for her through this disease.
Okay so the next part of this update gets a little complicated. I’m not sure how much I have shared on my blog about health issues I’ve had over the years. Obviously if you’ve ever read my blog you know I typically have written about recurrent miscarriages and my faith in Jesus Christ.
But my whole life I have struggled with a variety of health issues and to me it was just kind of my “normal”. I didn’t really think too much about it.
In May, I found out that I have a primary immune deficiency, IgA deficiency, which is a genetic immune disease that I was born with where part of my immune system is nonexistent (I have NO immunoglobulin A and some of my IgG subclass numbers are low as well). Sometimes people can have IgA deficiency and not have any problems and other people with the deficiency have just as many health problems as someone with a more severe immune deficiency.
I’m not going to go into big long details about how I found out about this. But I will say that a mistake was made 7 years ago when I was hospitalized with low platelets while having my 2nd miscarriage. At the time the doctors diagnosed me with ITP, an autoimmune disease that attacks your platelets. However, the doctors did not tell me about other blood tests results, including this IgA deficiency result, which should have been followed up with by an immunologist. My primary care doctor this year tested my blood again and referred me to an immunologist.
Obviously it’s upsetting to know that I wasn’t told about this 7 years ago.
As much as it’s upsetting that these mistakes were made, I also know I have to trust God and His timing. When I found out in May, I felt peace about it. I’m not really sure I could have handled finding this out 7 years ago when I was in the thick of dealing with miscarriages and grieving very heavily. I think it would have been too much of a burden to handle.
Since May, I’ve had a lot of doctors appointments and more diagnostic testing. My health has gotten a lot worse over the last year and it seems to be getting progressively worse even though I have made so many healthy lifestyle changes. I’m sure the stress of my mom’s disease and caregiving have played a role in my worsening health.
I think the hardest part for me has been why this is all happening while I’m trying to take care of my mom. I had all of these plans and dreams for what we would do together while she is still in the earlier stages of the disease and I even had plans for what we would do in later stages to make her life meaningful. And getting more sick this year I feel like we’ve just been homebound and there’s some days where she’s watching TV all day because it’s all I can manage to just keep up with cooking and doing survival chores. I know I don’t need to feel guilty about anything but it’s hard to feel so out of control. I’m fighting really hard to get healthier and I hope it will pay off.
My faith has totally been challenged by all of this. Being physically exhausted and mentally exhausted make it really hard to seek God. And then sometimes the anger and emotions and stress of all of this and caregiving make me feel like a really bad person and then I’m scared to go to God because look at how unloving I am. Other people will say look at what a good person you are, but God knows my heart and the thoughts I have sometimes are ugly and mean and so far from God. Even though I know, I know, I know that Jesus’ grace is for me and to come boldly to His throne of grace in my time of need, sometimes my faith is so full of doubts and fear and struggle. I think also as a woman, I place so many burdens and expectations of perfection on myself that Jesus never meant for me to carry. But that’s easier to write than to live out.
There have been so many lows and highs over the last year. Sometimes my faith feels strong and I’m trusting God and walking with Him and believing what He says, and then other times, I feel so far from Him. I can’t tell you how many times this year I have had such low, defeating thoughts. Sometimes I wish all of the pain would end and that I would die. That’s hard to write on the internet.
They are only thoughts but it’s still hard to have them. Every time I start to have those thoughts, I shut them down and say, “No! You have a good purpose in this world.” I know that might be too much to share online. But I hope it helps someone else to know you’re not alone if you have similar struggles. And when I talk about my faith in Christ, I don’t want anyone to think my faith is strong and I have it all figured out. No! I need Jesus every step of this life. My husband shared with me this year that caregiving has shown him the truth of his heart more than ever before and he often tells me to pray for him because he’s having resentment or mean thoughts.
And that’s the thing, outwardly, he is upright, does all the right things, is patient and kind. I’m similar, but inwardly we are struggling. Inwardly, we need the help of Jesus to make our hearts right and to truly love those God puts in our lives. And sometimes we just need to rest at His feet and know we are forgiven and loved unconditionally.
It’s a battle. I’m thankful for a 2 week break where I can really slow down and process some of these emotions. It’s only been a few days and already it has been so good for my soul.
I’m also looking forward to getting some alone time with just me and my husband. He’s working a weird on call schedule during the holiday week so I can’t wait for this weekend to get here so we can have some fun. We need some fun and laughter in our lives.
Well I think I’ll wrap it up for now and I hope to write again soon. There are so many things I could share during this season of my life. Hopefully it will be a bit easier to write now that I have actually shared an update and got all the big news out of the way.
Lots of love to you all and thank you for reading. You are all so loved and precious to God and to this world. Shine your light of love in a world that needs what only YOU can uniquely give. ❤
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14