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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.

Believe in Yourself, Character, Chronic Migraines, encouragement, Faith, Inspiration, Journal Journey, Journey, Life, Organization, Recipes

Your Strength Overcomes Fatigue

Journaling Journey

Today is coming to an end and I am thankful because it has been a long day thanks to a medicine I am taking for a tooth extraction I had last week.

As much as I would have liked to have taken a much needed nap, I fought through the need and took my Kiddo to work (because she was struggling with a migraine which she had from last night). After I took her to work I pushed through the extreme fatigue and mowed my lawn because it was looking pretty shabby.

Once I finished mowing I cleaned up the back yard from my doggy’s mess, then I cut and sanded a board that will become a Special Olympics Medal Sign for my niece.

After having struggled to get my day started, I am thankful I can sit back now and say I accomplished something with my day.

I am writing about this because one of my personal battles today was finding the strength to push through my exhaustion despite my need for sleep.

I did not give in to sleeping because my daughter was struggling herself with a left over migraine from last night and she herself wanted to lay down.

I knew there was no way I was going to give in to my fatigue when my daughter could not give in to hers.

This is the day and life of living with a family member who struggles with Chronic Illnesses.

My life is not all mine, but why would I expect it to be when I am a wife and mom.

I just struggle to push through doing things I don’t always want to do, but do we not all do this?

Leave a comment below to share what you did today that took the courage and strength you did not know you had to do.

Chronic Migraines, Courage, encouragement, Hope, Inspiration, Journal Journey, Journey, Keeping It Real, Life, Medical Journey, pain, Parenting, Rawness, Real, Rest, Strength

The Battle of Courage

Journaling Journey

It is Friday night again and we are sitting here together as Kiddo does another week of IgG Infusions.

This is not the best way for her to spend her Friday night, as most college students her age are out having fun, but doing it tonight is proving to be so much better for her.

By doing this on Friday night she is able to go to bed and sleep off the side effects that she was was trying to work (literally through) before she changed to Friday night. She is also able to rest her body tomorrow as she struggles through the remaining side effects.

She is amazingly strong and courageous. Every time she does this, she amazes me at the strength she has to sit there and inject 4 separate needles into her legs and then sit there for an hour or more while she waits for the infusion to finish.

For all she battles with her body on a daily basis, it breaks my heart to watch her, but I also find a sense of pride to call her my daughter because I know she has dig deep down inside to do something that the rest of us take for granted every day.

Her road ahead looks a bit dark as we struggle to figure out what it is going to take to give her her life back, but thankfully after four long hard years of struggling already and battling for the fights we have won and battling the fights we have lost, we are closer now to finding this solution than she has ever been in the years back.

It is my prayer that the journey she is on with the new medicines and treatments that there will be an end to this battle she battles within her body.

I was going to get ready to close until she just read me this amazingly fitting bible verse which I will share with you as well,

God is with her, she will not fall. Ps 46:5

God, you are amazing with your timing.

I was not going to write tonight as I often feel like what I write is not important and would not affect anyone else, but with closing with this verse and knowing Kiddo has no idea what I am doing, I know I was meant to write this tonight.

If you are battling a battle that is one you never dreamt you would battle, know you are not alone.

God has your back just as He has my daughter’s. He is with you, My Friend!

Find peace and comfort in this tonight.

Now I am going to close as I am sure Kiddos infusion should be close to being finished.

My friend, rest tonight. Allow God to take the burdens of the week away from you and sleep in the protection of His arms tonight.

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.

Chronic Migraines, Journal Journey, Journey, Update

A Summary of Where My Journaling Journey Begins

design-21Let me begin my Journaling Journey by providing you with an update of what my sweet daughter’s medical journey has been like.

When my daughter was 13 she began complaining frequently about having headaches. I dismissed them initially by simply telling her to take some Tylenol if it hurt bad enough for medicine.

Then by the time she was 14, she started complaining about them becoming more intense. This was when my alarm bells began to ring that this has become a bigger problem, but it was just her head. What does anyone do for a headache but to treat it at home and do your best to beat it?

As time wore on, I also began to see her spring and fall allergies become more than just seasonal. She seemed to need allergy medicine more often than just the occasional times. Why? At that time it was anyone’s guess.

Fast forward to 16 years old, now she has headaches multiple times a week and has migraines multiple times a month. Why? It is still anyone’s guess.

I saw her struggling, but did not know why. At this point, she began getting more and more strep throats and sinus infections. So many more that her primary care doctor suggested I take her to an ENT (Ear Nose and Throat Specialist) which I did.

design11He agreed she had a problem but needed to run some tests to determine what might be causing this issue. He removed her adenoids hoping this was the problem and her infections would clear up. He also suggested doing an allergy test to determine what she was actually allergic to so we could narrow down how to properly address her allergy symptoms. The results of this were crazy. She came back allergic to just about everything you could be allergic to environmentally. Why? We do not know.

Shortly after doing the allergy testing she started doing weekly allergy shots, which only continued to make her sicker, but we were told it would only get better and to continue doing them because it was in her best interest.

After almost a year, she only got worse, her sinus infections were not only significant but they never went away. At this point, we were sent to expert ENT with this hopes of figuring out what was going on. This led to the completion of allergy shots and led us to a less than satisfactory doctor experience. I ended up removing her from his care, which for her was not soon enough.

Unfortunately, she did need another ENT and with the quickness because she became a “frequent flyer” to our local Urgent Care and they thankfully referred us to who she still sees today.

This doctor has been amazing. He sent us to her Allergist she is presently seeing, who through determination, stumbled on her Immune Deficiency which she was born with. It finally shed light on why she could not get rid of her strep throats and sinus infections and why when she was a baby she had five cases of pneumonia. It all made sense, but what do we do with this information? This we are still working on. This diagnosis, for some reason, had begun to get worse, and now they would like for her to take Immune Replacement Therapy in order to build up her immune system which is fighting against her. This journey will be difficult as we have already been told, the insurance company will most likely refuse this treatment because it is too expensive. This is a fight both the allergist and we are prepared to fight. I am sure I will be writing about this experience as we begin this journey, as I am prepared for it to be a rocky one at best.

So jump ahead to where we are presently and this is with my child fighting her own body, day in and day out. She battles herself with relentless and chronic migraines, an immune system that does not retain the virus’ information it comes in contact with, and her constant sinus infections as a result.

Why does she have to go through this, I do not know. I wish I did.

So the long and short of all of this is… does she have a serious disease such as cancer or something else equally dangerous, no? This I am thankful for, but yet I sit here having watched her struggle for four long hard years now and we still do not really have any concrete answers as to why or where this came from, minus her Immune Deficiency.

B95A8528-455C-4B1A-89D0-5FF7769D5299We do not know why her body fights against itself with these debilitating migraines. We do not know why they are resistant to treatment methods (and yes, we are at the top there too. She sees a top of a line Migraine Specialist) who has taken her to just about every method of treatment there is. She does Botox every twelve weeks, she just started this new migraine medicine called Aimoveg, and just yesterday had a second round of Nerve Blockers (but he was more aggressive with them as this migraine is just relentless). If this does not work then she could be in the hospital as early as next week to fight this migraine with medicine that can only be administered via a hospital environment.

So in closing, this is what my sweet daughter has fought through for the past four years, she has fought and continues to fight to gain her life back. There have been way too many difficult days she has endured. She has had several surgeries since this started, all of which she needed, and she still battles her body every day.

As a mom, it tears my heart into tiny little pieces and there is nothing I can physically do to make any of this better. The only thing I know to do is to stand by her side at every appointment and stay up with her at night when she is sick and in massive pain, and just keep praying over her mind, body, and spirit every day.

Now I have given you a summary of where this journey for her began, now it should make better sense as I journal my way through the days, weeks, months, and years ahead. There will be days of frustration, sadness, joyous occasions to celebrate, (I hope), and times of what we call dark humor (which we have come to use as a survival technique to find our way through the many dark days we experience).

I am unaware of how many times a day I could journal about this or if I will write every day, but to know I have an outlet to come to is an encouragement to me. I am looking forward to just having an outlet to put my thoughts, questions, and fears without feeling like I am burdening my friends again and again.

It is my prayer and desire that this journey we are on might bring encouragement to other families who struggle with their own problems, that they know the struggles are real and you do not have to be alone. We are here to walk along beside you.

Now my Journaling Journey will begin.

Next stop, allergy shots again tomorrow and we continue to wait and see what the nerve block will do for this stubborn migraine cycle.