#Findingyourcourage, #Keepingitreal, Anxiety, Burn out, Chronic Migraines, College Life, Discouraged, Exhausted, Journey, Keeping It Real, Life, Living The Every Day Life, Medical Journey, Migraine, pain, Parenting, Real, Stress, Trials, Weakness, Weariness

Living My Real

A Day in The Life of Our Medical Journey

Credit: Home. Life. Encouragement

This is how I am starting my day again. Sitting in a doctor’s office parking lot.

Today is a bit harder though. Today I could just sit here and weep as my daughter walks off by herself to go get 25-30 nerve blocks in her head for another month.

I’m choosing to not give in to my emotions though in just the off chance the “Corona Police” are not at the front door inspecting everyone (please, do not criticize my response). I know they are there to help and protect others, but when you live what we live, it isn’t easy to run into this “all” the time.

Thanks to this Corona Pandemic she has to do all her doctor appointments alone, because they will not let me anywhere near the building.

Seriously people, who wants to get all of these shots in their head and do it alone?

I can speak for myself, no, not me! I hate shots and I’m talking just the ones you get in your arm.

But for my precious daughter, she is getting them in her head to help with her chronic migraines. It is the only way she can manage them now. She does this once a month, but who knew we would ever get to a point in life where she would be forced, by others, to have to endure this all alone.

Today is one of those difficult days to watch her suffer and struggle.

I have already texted my husband asking, why?!? Why does she have to battle to live a “normal” life.

Why does everyday have to be one where she endures pain and overwhelming fatigue?

Why can’t she be healthy and live a “typical” college kid’s life?

This has been an exasperating week for us, which is probably why I just want to sit and weep and maybe even just cry.

Our health insurance, which is suppose to be the top of the line, has decided that because she reached her “projected” graduation date that they are going to cancel her health insurance in a matter of days.

These are the same people who pay a “ton” of money for her health care already.

So we have had to jump through some mega hoops to get the proof from her college, (that is closed down due to the Covid-19 crisis), to prove she is still in college.

I am completely baffled as to how and why this is happening still.

We are left now praying that everything we submitted will work to prove she is still in college. If just one person slows this process down, she will be left not covered by health insurance.

Without health insurance all her treatments will stop, she will not have access to the specialists we spent years trying to find, and we will not be able to afford all the medicine she is on.

This is such as scary thought as I write it. It should be something we shouldn’t even have to be going through. The system is seriously broken for this to be occurring. This was something we knew would be coming on her 23rd birthday, and that we were prepared mentally for, and would not have waited until the last minute, or in this case, second, to fix it.

No, in this situation, someone made a serious mistake 2 years ago and we are just now finding out about it and have literally hours to fix it before the damage it will cause to my daughter will be massive, debilitating and permanent.

So, I sit here with a knot in the pit of my stomach, looking at a busy parking lot. There is an ambulance and a fire truck at the entrance where I keep looking up to see if my daughter is walking out of.

I’m left to sit here asking God why? Why does she have to suffer? What will be her story? What will be her testimony? Why does every day have to be a battle?

Until God decides the time to reveal those answers, I know I just have to keep trusting in Him for the direction, protection, and discernment.

Are you in a similar battle? I know others are. Please know I’m here with you. I know the lonely feeling this life brings. Please know if you are, I standing beside you.

You’re not alone!

#Keepingitreal, Bible, Chronic Migraines, Exhausted, Grace, Inspiration, Journal Journey, Journey, Keeping It Real, Life, Medical Journey, Migraine, pain, Rawness, Real, Weariness

No Matter The Pain, You Are Beautifully Made

Journaling Journey

Do you continue to worry over your kids? As parents, I am unsure how you do not. It seems to be bred into us as soon as they are born.

Today has been one of those days where I struggled with worrying over my Kiddo. It does not matter how old they become, when they are sick we worry over them. When they are hurt, we worry over them. When they are fearful, we worry over them. It does not matter what the circumstances are, their lives will always be intertwined in ours.

My daughter woke up with her head hurting badly. She had a migraine brewing, but what her migraine didn’t know was that she didn’t have the time for it today.

She is desperately trying to cram the final week and half of work from her classes in it in order to complete the semester in college.

I was worried for her because I could tell in her face and in her eyes how bad this one was. I prayed over her head as well as sought prayer from some faithful prayer warriors that this bad migraine did not turn into a mega migraine while she was at work.

I am so happy to announce the prayers worked. She still has her migraine, but it did not get any worse and for this, we are thankful.

Now as I write, we are patiently waiting for her weekly IgG infusion to finish. Every Friday night she has to do this two hour regiment. We should be getting use to it, but I have a confession to make. It isn’t any easier. By the time she gets home from work, pre-medicates and finishes from start to finish it takes two hours which if you do not get it started until later then you are pushing 11 pm to 1am before it is finished. We know this from several weeks of experience.

This my friend, this is rough for this tired mom, but I refuse to go to bed while she infuses as it is not in me to abandon her on this weekly treatment. So no matter how late it becomes, Shadow and I will stay up with her because we are in this journey with her.

Tonight she decided was good night for me to learn how to actually set up the entire process minus inserting the four needles into her legs, just in case something went wrong or she was sick and I would need to know how to do this for her. I agreed it was a good idea, but I just really did not want to learn how tonight, I know, pretty selfish of me, but I did give in to learn how anyway.

Now the worrying side of being a mom is praying her side effects will be minimum so she can get a ton of studying done tomorrow. We really need for her body to cooperate and not crash on her yet.

Do any of your struggle with a similar battle where you worry over your kids and just want what is best for them, but can not do anything beyond pray over them? Even though this is the best thing we can do for our kids, somehow, if we are honest with ourselves, it does not seem like it is enough.

I wish my daughter could live a “normal” healthy life like those of her peers, but God has a different purpose for her. We are unsure what that looks like, but with all the physical struggling she does, the grace in which she does it is a testament to the strength she has to endure all she endures.

My friend, if you or a loved one is in a similar situation, please leave a comment below and I will be praying for you to get through as gracefully as my daughter does. You have an understanding friend here so you know you are no longer alone during this journey.

I hope everyone has a good night and that you get the rest your mind and body needs. If you feel inclined to join me in praying for my daughter, this would be wonderful and appreciated.

Lastly, if you are struggling to see your beauty for all the pain and sickness you experience,

“I want to remind you God fearfully and wonderfully made you.” Ps 139:14 (NIV).

Please remember, In His eyes you are perfect despite how badly you may feel.

Chronic Migraines, Journal Journey, Journey, Migraine, Parenting

Sunday Summary

Journaling Journey

Entry 4

We made it to church today which was a big deal since we have not been making it due to Kiddo’s migraines. Unfortunately, she is now suffering with a headache and I am praying she is able to catch it and keep it from getting worse.

She complained about having watery eyes this morning before church and we are learning this is one of her pre-dromes. She is extremely tired and I am seriously wondering if this is setting her up for a migraine tomorrow. I am always watching her to determine what are triggers that cause her migraines, but it is so hard because of her constant pain.

She is supposed to contact her Migraine Specialist to let them know how she is doing post nerve blocks. I am not even sure what to think. Across the board she has done better, but I do not think today was to be another pain day especially if this is setting her up for a migraine tomorrow.

Her objective tomorrow is to get up and start working on catching up in her college classes. She is so far behind, it is crazy, but thankfully her professors have been very understanding. I am praying by the time her next semester begins her Aimoveg kicks in and she truly gets pain relief.

It is my hope on my end to paint my kitchen and living room over the next couple of days because my husband has to go out of town for work. These rooms are in desperate need of some love, but I also know everything is dependent oh how Kiddo wakes up. I made sure the paint I will use has zero VOC’s in it so I should not be a cause for her migraine.

It is my prayer Kiddo will be able to sleep well with the time change and she wakes up with pain relief. It is also my prayer she will be able to have a productive school week so she does not get stressed out over how far behind she is.

If you feel inclined to join me in praying this for her, please know I will appreciate them.

Journal Journey, Journey, Life, Migraine

Enjoying A Beautiful Fall Adventure

Journaling Journey

Entry 3

33A4EF46-B516-403F-A587-AC8878CF614DToday went well. Kiddo is feeling headache/migraine pain relief despite her head hurting from the nerve block shots. She still has lumps in her head from them, but is able to handle this pain because it is different from the migraine she had for so long.

Her sinuses still hurt, but she can not completely figure out if it is an infection or if it is allergy related. It is just so hard for her to identify. The only thing she can figure out for sure is that it hurts.

It took me a while to get my day started because it has been one of those feeling exhausted kind of days. Once I got myself going, we left the house to run a business errand and took a drive to into the country. She was hoping to get a few fall pictures, but the location we were going to go to appeared to have a big party so we had to come up with a plan b and that was a longer drive to a different location. By now dusk was setting in with a quickness and daylight was not going to be our friend for much longer.

32E350C5-7E23-4828-90C5-B3151CD30899Where we decided to go, we had to leave the car by the side of the road, or in our case a dirt road path, and walk a little way into the woods. It was a wee bit creepy because this time of the year means we had to be on the look out for the lions and tigers and bears, oh my. Okay, maybe not the lions and tigers, but bears, and I forgot until we heard a gun shot, that we needed to be cautious of hunters because it is hunting season, so this was not a good time of day to be in the woods.

We survived though. I was really happy to get back to my Jeep, our place of safety again. She enjoyed being able to get out of the house to do something other than going to a doctor appointment or going to work. It was a pleasant few hours to decompress before she jumps back into trying to catch up on her college classes.

Our day has come to an end and we are going to bed with the hopes of going to church in the morning. This makes me nervous because church is a huge trigger for her. We attend a contemporary service which means loud music with a live band and lots of colored lights on display. This does not bid well for her sensitive head. Tomorrow is a day that right now we are plannng to go to church, but if she wakes up in the morning and has any indication of a headache, we will have to wait another week because her head is too sensitive at the moment. It will take nothing for her migraine to come back.

I am done for the day and ready to go to sleep. Good night faithful followers and prayer warriors. Thank you for following our personal journey.

Journey, Migraine

Exhausted While Trying to Breathe

Journaling Journey

Entry 2

woman working girl sitting
Are you frazzled and exhausted? You are not alone.

Today has come to a close and I am so happy to announce Kiddo is feeling okay. She is struggling with her sinuses, whether this is an allergy problem, a sinus infection, or a cold, at this point, it is anyone’s guess, but she was able to keep her migraine at bay despite what is going on with her head now.

This afternoon was the first sign of hope this set of nerve block shots might work. I am beyond thankful she was able to get through the day without the need for her migraine rescue medicines. If we can break the need for those, I will feel she is truly making progress.

This particular journey has been taxing on my ability to manage, clean, and keep my home in order for the countless doctor appointments we have in a week. Our “normal” week consists of anywhere between 2-5 appointments in a week. If Kiddo is lucky enough to not have an appointment, my husband will usually fill in the free days with his own appointments.

This crazy schedule has been going on for several months now, which I feel is the longest this cycle has lasted, but it might be because this summer, my dog needed surgery on is paw to remove a possible cancerous growth, my husband went down shortly after that with intestinal problems and then a back problem and Kiddo has been struggling with this crazy migraine cycle for several months now.

I am finally beginning to feel like I can catch my breath, despite my daughter’s difficult journey. I always say I can do one or the other, but when my husband and my daughter get sick and go down together, it becomes more than I can manage alone. This is when I start taking things off my plate and worrying about them when I can come back later. I do not like this, but it becomes a matter of survival.

This week our schedule has been fairly open, despite Kiddo’s unexpected Neurology appointment. With this open schedule, I have been able to take full advantage of being home and plugging away at trying to catch up on some much-needed chores.

Because I was able to do this, I am feeling accomplished tonight. The week is coming to a close and my home is back in order. I have a huge weight lifted off me knowing when our home is in order, it minimizes the chaos that a disordered home creates.

Last Sunday I seriously struggled with frustration and exhaustion and felt helpless while I looked at how dirty my house was and how long it would take to get it back in order. When I got up Monday morning and my precious daughter was in so much pain and agony, God placed it on my heart to pull together the gumption I needed to to tackle my out of control chore list. I kept thinking I need to get my house in order so if Kiddo ends up in the hospital, I can give her my undivided attention without the added stress of my home being out of control. Because of this thought process, I was able to just keep going from chore to chore and started getting this huge job back under control.

It is with a lighter heart I am able to freely give into being exhausted and look at going to bed at a decent hour tonight. I feel like with everyday, post shots, it is looking more promising she will not need to be go into the hospital next week. This is my hope and desire at least. We will not know for sure until we get through the weekend and see what this holds for her.

For now, I just keep praying and living moment by moment.

With that being said, I am going to finish here and head off to bed.

To my tired and frazzled moms who are finding themselves in the same level of exhaustion, please know it is okay to step away and “just breathe”. You need to, it is the only way you can stay the course when you find yourself on a long journey like what we are on.

Journal Journey, Journey, Life, Migraine

Sunshine Among The Dark Clouds

Journaling Journey

Entry 1


Today we started the day out at the allergy office and Kiddo received her allergy shots for another week. I am not sure what they did this time, but it appears this set of shots is going to bruise.

Today I asked her how she felt and received a generic response back, but later she came to me with a “real” update, thankfully. I am happy to announce (prior to her going to work) she said her migraine had gone away for the moment and although her head still hurts physically from all the knots throughout her head and neck, she is able to keep this pain maintained. As long as she does not come home from work with a migraine, I am going to hold out hope this set of nerve block shots may actually work.

With her complicated medical issues, there is always a give and take with pain though. As she told me her update, she did allow she is keeping a migraine at bay but is also fearful she has another sinus infection. She is feeling poorly and has been concerned for several days this could be the onset of another infection.

I just put my hand to my head and say, “Why wouldn’t she have one, she is overdue for it because she has gone a month without one.” So now we hold our breath as she fights through the sinus pain and pressure of another possible sinus infection.

I have to share this story she told me about a conversation she had with God. It goes like this,  “Okay Dude, what the heck is going on? Why do I have to battle these battles? So you take my migraine away and let me have a break from that crazy pain, but yet You give me this sinus pressure and pain as well as a possible infection? What the heck am I doing wrong? Why do you keep doing this to me?”

Please do not get me wrong, I have not taught her to be disrespectful to God, but I love the way she is comfortable to talk to Him in such an intimate way because she isn’t afraid of Him. She goes to Him with all her needs, pains, desires, and questions which rarely are answered. I also love her complete honesty in sharing these emotions and conversations she has with me.

Her words show how frustrated she gets over this pain and how real and raw her feelings are. It breaks my heart to see her struggle while she watches other college kids her age living their lives with minimal concerns. We hold out hope one day, she will reclaim her life from all of this pain and agony, but until then we just struggle through day by day and minute by minute.

I pray while she is at work, God is protecting her fragile head and allows her to be a migraine free and if He could add a headache free afternoon, this would be equally as wonderful. I know this would make her happy and appreciative.

These are my random thoughts for today. I hold my breath and wait while we live minute by minute for the next few days.