#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, 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.

Anxiety, Discouraged, encouragement, Exhausted, Hope, Journal Journey, Journey, Life, Medical Journey, Rawness, Real

Look Up When Darkness Surrounds You

Journaling Journey

Are you finishing up a difficult night like we are?

Our night has been difficult because Kiddo had a tough one. She has not felt good all day, but despite this issue, she still had to do her weekly IgG Infusion.

She felt defeated and beat down. She struggles on nights like tonight when they are difficult. What makes it even harder is when she questions why God gave her so many health issues and I have no answers in return. All I can say is, “I do not know.”

Are you feeling beat down and defeated tonight as well? I have some simple advice for you.

“Look up when darkness surrounds you. God is waiting for you.”

@homelife&encouragement.com

This seems like a simple task, but yet it is often times very difficult.

My friend, keep your chin up and remember, tomorrow is a new day.

Have a good night and a great new tomorrow.

Discouraged, encouragement, Journal Journey, Journey, Keeping It Real, Medical Journey

Living An Inconsistent Life

Making The Best of Every Twist and Turn

Journaling Journey

Life is an adventure when you live my life.

I got up fully expecting for my day to go in a specific order only to hear my name being called from the bathroom. This is never a good sign or sound as this usually means there is a health issue of some kind.

By hearing this first thing this morning it means something went wrong and my day is about to derail before it has even begun.

I was right, I started my day out by sitting at the VA (Veteran’s Administration) ER waiting room waiting for my husband who has a cold.

I know this seems insignificant to write about, but this is how my life goes with my husband, daughter, and my life. I have to plan my life loosely around their medical needs.

This is why I have upgraded my blog to a 2.0 version. I am hoping my blog and my business will enable me to make some extra money to help out my sickly family.

I am not able to work outside of our home for all of these unexpected medical needs that arise on a regular and inconsistent basis.

I am hoping I will be able to get my day back on track and import more posts into my Encouragement Page, bake some Valentine cake balls, make some chocolate covered strawberries with the hopes I will make may family feel loved today.

My friend, if your day has started out anything like mine, it is my hope that you were able to salvage it and it turns out to be a wonderful one.

Have a happy day!

Holiday, Journal Journey, Journey, Life, Parenting, Update, Weariness

The Mother of Many Tasks

Journaling Journey 

It has been a busy past two weeks. I found myself lost in the physical day to day and did not take the time to process any thoughts I may have had along the way. 

I found myself not only being a nurse but found myself also being a motivator and a teacher again. My Kiddo found herself up against a rock and a hard place in trying to meet important deadlines to finish her college classes from where she fell behind while experiencing the hardship of her two-month-long migraine and then finding herself extremely sick with this ugly month long cold. 

I tried to encourage her that she was stronger than she thought she was and to help her to see the confidence I had in her, for herself. I helped to read some of the work to her, as the magnitude of reading she had to do was intense and a migraine now just was not something that could happen. It could not, it was not an option. 

I found myself being a  “nurse” to my daughter again because she is going on four weeks of being sick with an ugly cold and now my husband, who lost the entire week of work last week, has it as well. 

Her cold took a significant turn for the worse over the long Thanksgiving Holiday and so that set her back in her classes by a few more days as well. It is hard to focus on homework when you have a sinus infection, pink eye, strep throat, and laryngitis. 

Thankfully because she communicated with her professors along the way, they were more than accommodating, and so I, as her mom. was extremely thankful. 

This is a side note, I am a happy Mom now, as she just told me as I was writing this, that she just submitted the final project to one of her classes thus officially completing another class for this semester. Now she will have more time to work aggressively to finish up another one due this week. 

Next weekend will officially begin our “joyous” holiday season. The stress of classes will be behind us and the fun part of Christmas can begin. We can start our Christmas shopping, baking, and movie watching and even more so when the school she works at shuts down for the Holiday.

I know between her being sick and stressed out, it is hard to have my Holiday cheer completely intact. It is hard to find the time to bake my goodies and shop for presents or make homemade gifts, when we are running back and forth to doctor appointments, taking her to work as well as running errands. 

Thankfully I was able to get the house decorated inside and outside, so our home is festive, but the emotional joy of the season has been on hold and will continue to be until Friday. 

We have declared next Monday as our day of celebration. We have set a goal for completion as all her classes have to be done and turned in between now and Friday. I feel that we can celebrate together, since I bore a lot of the stress of her being sick and behind this semester. 

Between the tears that have been shed for the intense physical pain (that almost hospitalized her) and the anxiety of being behind in her classes, we have earned the right to celebrate together. 

It is my hope and desire this week will be a bit easier on us. I seriously need my family to get well again. Especially since now they have successfully shared this crummy cold mess with me. I do not have the time or energy to be sick as well. I am just praying that if I continue to have the mind over matter philosophy to this that it will go away quickly. I am trying very hard to not recognize it and if I do not, then it won’t get as bad as it is trying to do.  

With all of this being said, I need to complete my thoughts and get to work on a couple of orders we have for our business (@HL&E Designs). I am carrying a huge burden to get them done and delivered to their respective customers.  

Thank you for patiently reading my journaling journey of random thoughts. It truly does help to release what I am thinking through writing my words down in a safe place. 

It is my hope and prayer your week is a pleasent one and that you too are able to find some Christmas joy in your heart.  

Until I write again…  Have a calm and refreshing day. 

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

design-38

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.

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.