Broken, Exhausted, Journey, Life, Medical Journey, Rawness, Weariness

The Pain of A Mother’s Heart

I am clinging to this hope and believe it with all my heart. 

Tonight, I am writing from the perspective of a  broken down and worn out heart of a mom who has to watch her child suffer in one of the most agonizing ways imaginable. She lives life as a Chronic Migraine Sufferer.

I needed to ponder my thoughts tonight in order to close them out and be done with them.

It has been a whirlwind of events for quite some time in our household. The number of doctor appointments we have been going to in my household has been crazy.

My husband has been down between sickness and a back injury since July which produced countless doctor appointments for him.

Then there is my daughter who has chronic migraines, chronic sinus issues (inflamed and often times infected), an immune deficiency, which has been identified in the past few weeks as getting worse, and out of control allergies. So she has a lot of doctor appointments on her own. But when you add my husband being sick and injured on top of her, this means life became chaotic.

This whirlwind of events got worse when Kiddo went into a migraine cycle which became worse as a result of Hurricane Florence. She has been in pain since way back then, but was able to push through it by living minute by minute and taking medicine to keep it from becoming a mega migraine which she is not able to fix at her level.

The struggle for her is daily, but something went wrong on Friday. She lost the battle and her migraine blew up in a two-hour window into a mega migraine. In the morning we went to her migraine specialist for his nurse to teach her how to self-inject the new migraine medicine known as Aimoveg. By the time we got home, her head just exploded in a massive pain and so we headed off to our local Urgent Care with the hopes they could make this pain better and bearable again.

Unfortunately, this experience did not go well. The doctor there was less than compassionate or understanding. This was not what she wanted to experience. She wanted him to simply help her to get the pain back under control (I did not make a mistake there, for her, she is used to pain, she knows her pain will not go away, but wanted it to become managed again). Her doctor, however, did not understand her situation. Instead, he made her/us feel like she was a druggy looking for a drug fix.

I am here to tell you, this momma was not a very happy one, and realized quickly that if my daughter was going to get any help I had to fight, yet but again, for her health care.

He did eventually agree to help her after denying her help three times (yes, this is not a misprint, he denied her help three times before agreeing to offer her an attempt at a treatment plan).

As it was, her treatment plan was a different one than what she normally receives, but we were not willing to advise him what works as that would only give him more of a reason to not believe her.

So with one Kiddo in mega massive pain, she gives up the fight and lays down on the exam table and the nurse comes in to place an IV in her arm to administer her the  “concoction” as the doctor called it, with the hopes pain relief would be in sight.

My poor child lays there waiting for the pain medicine to work and the nurse comes back to check on her pain number. She went from a ten (because he does not believe pain can be worse than that), to a nine. I am still remaining hopeful this is going to work even though she has never had it before. So a little time passes and the nurse comes back and she is at a nine. Now I am getting a little concerned because some pain relief should be happening now. By now about 30 minutes have passed and the doctor comes in the exam room to check on her and asks if she has relief and she says no, her pain level is still at a nine.

Now I am getting really concerned and I am beginning to think we would be at the Emergency Room next. The nurse returns back after some time to change her IV bag and I expressed my concern to her and she agreed if we can not get the poor child some relief I would need to take her to the Emergency Room after leaving there.

Eventually, the doctor returns and asks if she has had this one particular medicine before and I said no, but that my husband has for his migraines. So he has the nurse give her the shot.

By now I am doing a whole lot of praying this will work and my child gets relief. After about ten minutes I ask her does she have any relief and she says that beautiful word, “yes”. She is now at an eight. I had never been so happy to hear that wonderful number as I was at that moment. This might actually be working finally.

After about five more minutes the nurse comes back and checks on her and she is down to a seven now. I was beginning to feel some relief now. Seven means we should be able to go home without needing to go to an Emergency Room next. By the time the doctor comes back, she is down to a six pain level. This made him happy and was ready to release her when she felt she was ready to leave.

We stayed maybe another half hour passed his we can go home time because we were not leaving until she knew she could to make the drive home.

I tell you this story because you needed to see why this was so stressful. My poor Kiddo suffered severely on Friday and to have a doctor not believe her was infuriating.

We did eventually leave and come home, but her pain level did not stay down. By the time 7:00 PM came around her pain level was spiking and that fear I had earlier began to return. By an hour later she was back up to an eight and it was only getting worse. How much worse could this become? I need to come up with a plan and it needs to be one that will work and work effectively.

I had to rely on my mom intuition which is really scary to do when you are not a doctor and this is over your head. Well, it all came together. I came up with a plan, one we have done in the past, so although it made me nervous for all the medicine she had consumed that day, we had to use it.

I told her my plan and she was okay with it. By the time I left her bedroom with the hopes and prayers her pain would come down and she would go to sleep, her pain level was back up to a ten.

I was so nervous. I slept with one ear always listening for her to make a noise or if she were to need me.

She said about 2:00AM she finally began to get pain relief again. My plan thankfully worked.

By the time she got up Saturday morning, she had her pain managed again. She also had two more doses of her migraine cycle breaker consumed. Thankfully with the help of her own migraine medicine, she was able to keep her pain managed as well as rested all day Saturday.

We were both relieved to be back at this level again and relieved to know we did not have to take her to the Emergency Room.

Today, as we get ready to close out the day and finish the weekend, I am beyond relieved to know she is pain-free, which she does not experience very often. It appears her migraine cycle breaker is working finally.

Now if she can keep her stress of being behind in her college classes under control and her professors will be compassionate and understanding, then she should be able to get a lot of work done and get caught back up again without carrying the stress of being behind on her shoulders.

As I tell this story, the feeling which is still raw all came rushing back. It has been an extremely stressful weekend, and I am hoping by writing about it, I will be able to release the pain and heartache and move past this traumatic event.

It is also my hope and prayer if you live a similar life that you know you are not alone. We know your pain and your fears. We know the frustrations and the concerns.

Life is hard, but to know you are not alone, makes it all a little more bearable.

If you have experienced a similar circumstance, feel free to leave a comment below and tell me about what happened to you.

Broken, Discouraged, Exhausted, Journey, Life, Trials, Update, Weariness

The Life of My Daughter and Her Migraines and Cold

design-87I am writing to update my faithful followers on Kiddo’s painfully sick week.

Thankfully today I can finally see the signs of the antibiotics working to fight against her cold. It is nice to see her not struggling to breathe through all of the chest congestion and relentless coughing.

As for the migraine she couldn’t get managed, the steroids did the job. They broke this migraine cycle, thankfully. She still has her daily headaches, but those she can manage. It was this past intense and mega migraine she couldn’t handle or manage.

I truly appreciate your prayers. She was in tough shape for the past few weeks and I am praying she will get some much-needed relief and rest over the next week. Thankfully she works at a school and because of Easter, they are off for the week.

I do ask however, you continue to keep her in your prayers because her steroids finish tomorrow and she is concerned with the headaches she still has that the steroids will not continue to work. Please pray the headaches will just go away and she will be okay until she goes to her next neurology appointment.

I write about this because to watch her struggle like she does causes me to worry a lot over her. It is hard to see her go through all she goes through. Unfortunately, it is not with the just illnesses, but it comes with some of the nursing staff as well. When times like these happen and her body wages war against itself, the only solution for relief comes in the form of medical intervention, but to seek this intervention comes at the cost of lectures about seeking medication for which she is not doing.

What would you do as a parent if you saw your child post this on Facebook?

“This sums up the past couple weeks and I’m so tired of doctors and nurses!!!! The nurse today told me, after I got done telling her all my symptoms, that since I got up out of bed today I couldn’t possibly feel as badly as I said I did 🤦🏻‍♀️. People, if I didn’t get out of bed I wouldn’t have a life!! Just treat me! How long do I have to be miserable before someone decides enough is enough. I’m not lying, I’m not trying to get drugs, I’m not trying to get attention. If I could live my life without all these health problems, that would be great, but until then just give me the help I need and quit giving me a hard time about it.”

As for me, I know it happened. I was there every time it did, but there is something about seeing the pain in writing. She isn’t a public person and she is not a person who posts a lot on Facebook so for her to do this, it was really upsetting to her.

Now, how about this she just told me just tonight?

” I am so tired of being sick and drugged up to live without pain. I think I slept the month of March away because somehow I have missed that month. I feel like I am not even living my life, I feel like I am just existing.”

Another statement I know she feels, but there is something about verbalizing it that just breaks my heart. Now, keep in mind, she has no idea I am sitting here writing. She has no idea I am trying to process my own thoughts about her being so sick and in so much pain for so long. It is completely coincidental that conversation happened.

I am not sure what her future holds and why she has to struggle so much. I just plead with God that He has a reason for it all and that she does not have to go through it without a benefit or reward of some sort. The testimony she will have at the end will be amazing. It is my hope and prayer this road she travels will be one where she is able to help others get through their medical journey.

Until then, it is my prayer God continues to give her the strength to endure it all because it is a lot. It is also my prayer God protects her body and her mind from all of the effects of pain, illnesses, and medication she goes through. Feel free to join me in praying over all of this as well. I would be appreciative of the additional prayers.

Thank you for being patient as I use my blog as a platform to write about what it is like to be her mom and go through this journey with her. It is a lot to carry, but being able to write about it gives me the ability to release some of my own emotions so I can be strong for when she needs me the most.