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I’m a Failure, and That’s Ok

Recently I was thinking about where I am in life and I realized that by worldly standards, I am a complete failure. I am 24 years old and I didn’t get my degree, I haven’t been married, I can’t hold a job, and all of the goals I set for myself at high school graduation have not been met. To look at me on paper is to see someone who has completely missed the mark when it comes to “adulting”.

However, there are so many things under the surface that have shaped me into a much more mature and capable woman that I don’t believe I would have learned had my life gone according to my own plan. I’ve become much more confident in myself because I have had to advocate for myself with doctors and insurance companies on a regular basis. I’ve learned to be much more laid back because it is physically painful to get upset about things. I’ve learned to appreciate the little things because so often the little things are all I can manage. I’ve become much more tolerant of other people because I have to carefully allocate my energy and it takes too much brain power to overthink what other people are doing. Best of all though, I have become much more grounded in my faith.

When I first got sick I was attending Texas A&M University and loving my animal science classes. When everything came crashing down around me and managing my health forced me to have to withdraw from school, there was a long period where I was so angry with God. Why does it seem that every time I almost reach my goal, something snatches it away? I felt like the dud child. Over the past couple years though, I could feel God chipping away at my anger and beginning to change my heart.

I began to realize that my tantrum over not getting my way was never going to change things. This is the hand of cards I was given and I could either continue to be angry and bitter about what I can’t have, or I could find the good in my current experience. I began to study the word with more intention and really began to apply what I was reading to my life. Until this point my faith was child-like and I was praising God in the good times, but not in the trials. When the difficult times came, I was sitting in self-pity and completely ignoring God’s promises to me.

I don’t mean this to say that I think God has caused my troubles. I know that illness is not from God but can absolutely be used by him. I know that he uses all things for the good of those who love him. I know that he has plans for me to prosper and not to harm me. I also know that my human perception is not the same as his divine knowledge. What looks to me like my world crashing down and my physical body being broken, is actually causing something much more important to be strengthened. My relationship with God is growing much deeper roots through my physical struggles in a way that likely would not have happened had things gone according to my own plan.

I am a failure by the worlds’ standards but I would never want to gain the world and lose my soul. Life has become so much more enjoyable since deciding to genuinely trust in God’s plan for me, even when it seems so unfair and nonsensical I can’t figure out how any good could possibly come from it. I no longer see myself as the child who failed to launch and I don’t define myself by what I have or haven’t accomplished in life, but rather I rest in knowing that I am loved by the creator and the hope of everlasting life.

James 1:2-4 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking in anything. 

Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 

Jeremiah 29:11 “For I know the plans I have for you”, declares the Lord, “Plans to prosper you and not to harm you. Plans to give you hope and a future”. 

Matthew 16:26 What good would it be for someone to gain the whole world, yet forfeit their soul?

Medical · Uncategorized

Inside My Head 

Today I was thinking about just how much thinking I do all the time. I realized that I spend most of my time considering things that most people probably never give a second thought. I woke up today extra dizzy from low blood pressure caused by POTS (Postural Orthostatic Tachycardia Syndrome). I knew the best way to manage that was to drink lots of water and eat lots of salty snacks. That sounds simple enough, right? Unfortunately, POTS is not the only way my body fights me. I also had to gauge how much nausea/abdominal pain I was going to deal with today. If I go ahead and eat, is that going to make me too nauseated? Is my stomach going to bloat and be ridiculously uncomfortable? Is it going to cramp up and hurt? Then there was the catch-22 of needing to drink water to combat the dizziness, but drinking lots of water means needing the bathroom, and walking to the bathroom causing dizziness.

This is all just to manage one symptom of one issue. I also must juggle finding the settings on my stimulator to best control the head pain, judging how much energy I have for walking around and knowing where the next place to rest will be, taking meds on time, trying to think through the brain fog, not pushing too hard and causing joint and muscle pain to flare, deciding when to risk eating foods that have the potential to make me sick and when to play it safe… and this is just for my body. I also think about all the things everyone else juggles too like carrying on conversations, making sure my dog is taken care of, being where I need to be when I need to be there, and so on.

While my body is at rest a lot of the time these days, my mind is not. Its usually a whirlpool of thoughts and questions. The more practice I have living with these chronic curveballs my body likes to throw me, the better I get at managing them, but there are definitely time it gets overwhelming, and times when, no matter what I do, the best I can hope for is a better day tomorrow. That’s ok though because at the end of the day, that’s really what everyone is doing! My curveballs come in the form of my body rebelling but we all have things we must overcome. We just do our best in the moment and keep moving forward!

 

 

 Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

Medical

Jefferson Adventure: Day 5-6

On Thursday, July 27, I woke up alone for the last time in my hotel room and got myself prepped for another day of infusions. As much as I was dreading the drugged, sluggish, awful feeling of having so many medications pumped through my body, I was hopeful that they did seem to be helping manage the headache pain! I made sure to pack up my book and coloring book even though the visual side effects of the meds made looking at things difficult. Sometimes a girl gets desperate for some distractions.

I hopped in the back seat of my very friendly Uber driver’s car at about 7 am and tried to get myself fully awake during the commute. Once I made it to the office I had my usual meeting with the nurse practitioner and we went over the plan for the day. I again had low blood pressure and again declined the Benadryl infusion in hopes of being less groggy and mush brained. I had the same nurse in the infusion center which was nice although this time it took three tries to get an IV placed.

After the second unsuccessful stick, nurse Kristin brought out a fancy-shmancy tool that would shine a light on your skin and illuminate the blood vessels! It was the first time I had seen one in person and we both agreed it was a pretty nifty little contraption. We finally managed to get the IV taken care of and the infusions began with 30 minutes of Compazine followed by Zofran, DHE, Toradol, Magnesium, and more Compazine. Maybe more Zofran. Definitely more DHE. Anyway, it was a lot of stuff.

I tried to be more aware of what I was doing with my neck and made sure to stand up and stretch or walk around in the hopes of avoiding the same muscle side effects from the previous day. Unfortunately that was unsuccessful but more about that in a moment.

Mom got up in New York and said goodbye to her traveling buddies with Turner and opted to get a rental car and drive down to Philly rather than ride the bus back to Terre Haute. Thank goodness mom loves driving! She gets lots of hours logged on the road getting me where I need to go for all these medical appointments! We talked on the phone about an hour before my infusions were going to be done and I decided rather than getting an Uber back to the hotel, I would just wait in the city for her to get there and pick me up.

Once I left the infusion center I walked down to a Dunkin’ Donuts and got myself a coffee and waited for mom to get to the city. I don’t usually drink caffeine as it makes the chest pain more intense but desperate times call for desperate measures and I needed to stay awake! There were a lot of phone calls trying to coordinate me being on the correct corner at the time she would be driving by but we finally made connection and I hopped in the rental Camry with her. Philadelphia is not exactly the most fun place to drive – especially when you’re used to the roads in the Midwest that are wide enough to accommodate tractors! Mom is a trooper though and we finally made it back to the hotel.

We decided to just use Grub Hub again for dinner but an hour after placing our order at a nearby pizza restaurant, we got a call saying their delivery person had not shown up and asked us to cancel the order. We couldn’t find anywhere else that we wanted to order from and didn’t really want to wait longer for another delivery order so we found a little Italian place not too far away. We got the smallest pizza they had which was 14 inches and finished half of it between the two of us. We decided cold pizza for lunch in the car the next day sounded like a plan. Our standards for road food are clearly set quite high. (Insert sarcasm here)

This entire time I had been fighting the muscles in my neck cramping like they had the day before. Then the uncontrollable muscle weirdness went to my eyes and for some reason they would get stuck rolling to the back right side of my head. It was incredibly uncomfortable and admittedly kind of frightening. It was a bit like something else was controlling my eyes and no matter how hard I tried, I couldn’t get them to move where I wanted them to. There were a few tears shed out of frustration and fear but we decided that since sleep helped with the neck issue, we would hope for the same with my eyes and if it wasn’t better in the morning we’d call my doctor. Otherwise, our plan was to get on the road home in the morning.

Thankfully, I woke up with much more control over my eye movements and just left with extremely blurry vision which is a side effect of the medication I’ve dealt with before and I knew that would improve with time. We were up and out the door by 7 am and opted to drive home by way of Baltimore rather than have to drive through Philly again.

I was feeling the fatigue pretty hard but also feeling very restless (another side effect) so I got myself some caffeine riddled coffee with my breakfast croissant at our morning stop. They were terribly overpriced, albeit tasty, but we thought it was ok because we were having leftover pizza for lunch. The drive was, overall, uneventful and I am always thankful for the fact that all of the thousands of miles we’ve driven for my sake have all been safe ones.

As we were passing through, we stopped at my brother and sister-in-law’s house to pick up mom’s little dog, Moxie. We were lucky enough to arrive before my niece’s bedtime so we got to enjoy some entertainment courtesy of the cutest little curly blonde-headed child I know. Once in Terre Haute mom asked if I wanted to go to my house or stay at hers for the night. I opted for my house even though my car was still at my dad’s. We got all the way there and I was unloading my things when I realized I didn’t know where my keys were! I assumed I had left them in my car since I couldn’t find them in my backpack anywhere and because I had no spare house key, ended up staying with mom for the night after all. Spoiler alert: I found my keys the next morning in the one pocket of my backpack I never ever use and didn’t check! Oops!

While trip was definitely not what we expected and in some ways disappointing, I do believe it was worthwhile and have gotten some relief from the IV medication I was able to get. I am very grateful for any positive changes and also thankful for the POTS diagnosis. That is not to be confused with being grateful something is wrong necessarily, but it is nice to have a word that encompasses all of those symptoms rather than having to describe each one individually. It also helps my doctors figure out what course of treatment is most promising and gives me credibility as a patient because, yes, I am still not taken seriously in some arenas. I think the outcome of the trip was overall positive and we have scheduled the lidocaine infusion for mid-September. Until then I will be praying for favor with insurance, more good days to get me through, and reminding myself that while things may not make sense to me, there is a bigger, better plan than my own in place.

Isaiah 43:1 “But now, this is what the Lord says – he who created you, Jacob, he who formed you, Israel: ‘Do not fear, for I have redeemed you; I have summoned you by name, you are mine.'”

Medical

Jefferson Adventure: Day 3-4

Dad and I woke up plenty early in order to pack up our things and head to the infusion center to be on time for my 7:30 am appointment. Our Uber got us there with time to spare and after a quick meeting with the nurse practitioner to check on vitals and discuss any last minute questions, I headed off to the infusion room. My very sweet nurse, Pandora, got an IV started and dad went off in search of some decent coffee while I began my infusion of Benadryl, Compazine, Zofran, DHE, Magnisium, and Toradol. All of these are medications I’ve had in the past but this time they were given together and at different rates than past experiences.

The Benadryl had me pretty worn out for a good while so dad was in and out of the infusion room while I slept. He left around 1 pm to head for the airport to catch his flight back home. I finished my infusions around 3 pm and I caught my own Uber to the hotel room I’d be staying in for the next few nights. Unfortunately when I arrived I was informed that the elevators were not working and were not expected to be functioning again for a few weeks. Not the most welcome news for someone who just spent hours having their body essentially assaulted with medications and who on a good day deals with intense fatigue and dysautonomia. Oh, my room was also on the third floor.

I managed to lug my bag and myself up the stairs and generated some laughs from the two men behind me because this healthy looking 24 year old woman was completely out of breath and feeling pretty faint after a short trip up the stairs but I was really too tired to care. I made it to the room and pretty much passed out for the rest of the evening. Dad made it home safely and I missed just enough texts and phone calls to accidentally cause concern. Oops!

I woke up on day four feeling worn out from the day before but thankfully more rested than when I got to the hotel. I got myself dressed and downstairs and called my ride for the morning. My day was much like the one before with a check in with the NP, comments on my low blood pressure, and then off to the infusion room. My nurse took a couple of tries getting my IV started which didn’t surprise me since DHE is a vasoconstrictor, which makes finding a good vein more difficult.

I opted to skip the Benadryl since I didn’t like being quite that groggy while having to stay awake and alert enough to safely transport myself between the office and hotel. The NP said that would be fine unless I started having side effects that required it. Thankfully that wasn’t an issue.

However, after this day of infusions, I did experience a really weird side effect of my neck muscles contracting uncontrollably. That meant that my head was stuck in a position like I was cradling a phone between my ear and shoulder and was really uncomfortable. I tried stretching but it didn’t really help. Thankfully a night of rest did do the trick and the following morning was much better in that regard.

I talked to mom from my hotel room and she caught me up on how her Niagara Falls trip had been going. I updated her on my surprise of just how much more difficult this all was than I expected. We both agreed that we were pretty excited to be reunited the following day! I fell in and out of sleep starting fairly early in the evening and prepared to do it all again in the morning!

Medical

Jefferson Adventure: Day 1-2

Sunday morning, July 23rd, dad and I got up and ready to head to the airport. I got my Sophie dog packed up, my Glitter cat kissed and assured of my love, my living room as empty as possible for the flooring to be replaced while gone, and made a stop at the Sycamore Dog Estate before meeting up with dad and stowing my car. Our drive was grey and rainy but uneventful.

Thankfully the rain and lightning cleared before our first flight and pretty soon we were in Atlanta. After some airport lunch we boarded once again and touched down in Philadelphia at about 4:30. We found my bag at baggage claim and called the hotel to request the shuttle. We made it to the hotel where the man at the check in desk was rather confused about the separate reservations under the same last name (one for dad and me and one for mom when she joins me.) but we got it all figured out.

I was disappointed to learn that there was not complimentary wifi except in the public areas but we have been blessed with 4G on our cell phones so our grub hub order could still be placed. I know, first world problems are tough. Getting our dinner was a bit of a circus but we didn’t go to bed hungry so all was well in the end.

This morning, Monday, I called to confirm my 1 pm appointment and we caught an Uber to the city around 11 am. We walked around and found an ihop where I got breakfast and dad got lunch, and we met the slowest waitress I’ve ever seen in my life. Thankfully I had allowed us plenty of time so there wasn’t much worry about being late to check in for the appointment.

After sitting in the waiting room for about forty minutes I finally made it back to talk with my doctor. She was trying everything she could to get my insurance to approve my admission so that we could go ahead with the lidocaine infusion as planned but so far hadn’t been successful. After lengthy discussion of our options, we settled on a plan for me to come back at 7:30 tomorrow morning for outpatient infusions and pray that insurance calls back with good news. My vitals weren’t good enough for her to feel comfortable administering the medication she would have preferred without me being inpatient, but we will try some abortive IV medication to hopefully at least provide temporary relief while waiting out the insurance call. She was also rather appalled that no other doctor has talked to me about POTS (Postural Orthostatic Tachycardia Syndrome) before now because my symptoms point that direction and – SURPRISE – I have responded to the medication she gave me to control said symptoms. It’ s a form of autonomic dysfunction that is seen very commonly with NDPH. This means my body can’t regulate things like heart rate, blood pressure, and temperature the way it should.

We discussed my increased joint pain and issues with insomnia and she thinks that the joint pain spike could be a full body response to the recent Botox treatment I had and that the lidocaine infusion could be helpful for that. The idea of that infusion is to calm my central nervous system which is overly sensitized. However, that particular treatment comes with enough cardiac risk that in order to do it, I will need to be on a monitor 24/7, which is not something that can be done in an outpatient setting.

Tomorrow dad will fly back home and the plan for me to be at the hospital is very up in the air right now so I made myself further hotel reservations so that we can continue with the outpatient treatment. Mom is still planning on driving down to join me on Thursday and depending on insurance decisions will drive back home together at some point.

We’re all praying that things go our way and that I can have this infusion that I’ve been so hoping for for the past two months but keeping in mind that there is a plan in motion bigger than my own. I will be incredibly disappointed if the denial isn’t overturned but I’ve been keeping in mind Philippians 4:6-7 that says, “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Its really difficult to accept when what looks best to us is not what God has in mind for us, but thankfully, he is much better at directing my life than I am and so I will just do my best to trust that if the answer is “no”, its because something else, even better than what I can imagine, is in store.

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The Issue I Have With Demanding Explanation From God

I’m sure we’ve all thought it. Maybe even begged for it. Everyone wants clarity in their lives and to have their questions answered, especially when their questions involve pain. Whether the pain is emotional, physical, or spiritual, we all crave the knowledge that suffering is not in vain. This often manifests in asking God for an explanation or “sign”, and here’s why I believe that is setting yourself up for disappointment.

Starting at the ground floor of my thoughts is this simple fact: God is God and we are not. What I mean by that is that God is omnipotent. He knows everything that ever has happened, what is happening, and what is yet to come. He has created the entire universe and doesn’t abide by the limitations we have as humans. In contrast, we can see the tiny speck that is our personal experience. We couldn’t possibly understand the complexities of the Almighty God.

The first of two of my favorite lines in the movie, The Shack, is when “Papa” is telling the main character that he can only see through the knothole of his pain. This means that we are only able to see part of the whole picture. There are things going on that we are completely unaware of and its not in our power to know them.

The other line I found to be worth repeating happens again in a conversation between the main character and the “God” character. It goes, “Just because I work incredible good out of unspeakable tragedies doesn’t mean I orchestrate the tragedies”. So often we blame God for our pain and ask why He is creating this struggle in our lives instead of asking how we can grow from it or how good can come from our trial. Understanding that while, yes, God does have the power to make the world perfect and painless, we live a life with free will. As long as we are able to make our own choices, there will be suffering in our lives. God is interested in relationship, not robots. Because of that fact He chooses to let us decide for ourselves if we will allow his love and perfect plan shape our lives.

Beyond the basic understanding that God uses our pain but does not create it,  asking for a sign sets us up for disappointment and frustration because we don’t know what we’re asking for in the first place. What exactly would a “sign” look like to you? Would you expect a divine voice to audibly speak to you? Maybe a dream that explains everything you’ve been questioning? What about the signs from God that surround us each and every day?

We live on a swirling ball of molten rock covered in water and dirt that orbits a star at just the right distance and tilt to allow us to exist. Just ponder that for a moment. It was once said that “for those who believe, no proof is necessary. For those who do not believe, no proof is possible”. At what point would we notice that God was speaking to us? His voice is so often left unheard simply because we are not paying attention. His timing is written off as coincidence or just the universe randomly playing out. It is all too easy to spend all of our time asking questions and never listen for the answers.

One figure told about in the Bible that I relate quite well with is Job. If you grew up in the church or have learned about many of the stories told, you are probably familiar with his life. We know that he lost everything due to Satan attempting to assert power over God and prove that Job only worshiped him because he was so blessed with worldly things. First he lost all of his belongings after being a very wealthy man. Then he lost his entire family. Finally his health was taken from him and he suffered greatly. Those who once respected him looked at him with disgust and his closest friends accused him of harboring secret sins that he was being punished for. We know that through all of it he held tight to his faith. What we often don’t think about is that Job didn’t know what we know as the audience all these years later. He wasn’t privy to the conversation and spiritual warfare between Heaven and Hell. And he never got an explanation. 

Job never learned the reason behind his troubles but that is not to say God was silent. Toward the end of the book God speaks to Job out of a storm and asks him why he believes he knows better than the creator of everything. Despite begging for the chance to plead his case to God, Job humbles himself and finally acknowledges that he was talking about what he did not understand. Job did indeed ask for forgiveness of his sins, but they were not the sins his friends had accused him of. Rather, he repented for his attitude and for questioning the sovereignty of the Lord.

Demanding an explanation from God is not going to get us anywhere except straight into self righteousness, anger, and disappointment.  His timeline is not the same as ours and we are asked to trust, even when we do not understand. We may never know the “why” behind the struggles of life but we can rest in the fact that God is in control.

God is in control. 

God is in control. Of everything. 

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Getting Real Freakin’ Honest Y’all

These past few weeks have been really, really hard. The day after I got back from Philadelphia I went out to take Sophie dog for a walk and promptly ran my foot into some uneven sidewalk and demolished the outside of my right foot. It wasn’t a serious injury really – I figured I’d lose a toenail and it would be swollen and sore for a few days but I’ve broken toes before and gotten over it just fine. No need to whine around.

Welllll my already hypersensitive nervous system had some other plans and I still haven’t been able to put my foot in water, under a blanket, put weight on the outside of that foot, or deal with temperature changes without pain. Basically I’ve developed intense allodynia on the outside of my right foot.

And its embarrassing. I’m actually really embarrassed that my stupid, broken down body can’t even deal with a simple toe injury without dramatics. I’m ashamed that walking down the refrigerated aisle of the grocery store causes me to be awake half of the night with burning pain that is completely uncalled for. I don’t want to talk about it because it’s just another Ashley Issue that doesn’t show up on any scan or blood test. Just another thing that makes me look like a whiny, wimpy, baby who can’t handle life. Just another issue that makes me look like a drug seeker in the eyes of the medical world.

If you’re sick of hearing about my life that, at the moment, is completely controlled by pain issues, I GUARANTEE you that I am 100 times more sick of living it. I hate the fact that every social media post I write has something to do with medical issues because that’s all I have to talk about anymore. I hate this so much more than any of you. I hate that the person I used to be has all but vanished and I don’t know who I am anymore.

I’m trapped in this body which means that no, I can’t go to that concert or go camping or be the fun person I used to be right now. But please don’t leave me. Please don’t forget about me. Please keep talking to me because I’m still here and I need the people in my life now more than ever. I know I’m a downer and my conversation is boring and I have the focus and concentration of a goldfish. I know my contribution to my friendships has become pretty minimal and I live like a lame hermit, but please remember that I’m here.

I’m sorry that my life has turned into this nightmare that isn’t pleasant for anyone. No one likes to talk about illness. No one likes to hear about medical procedures and pain. Its considered a negative topic and those whose lives are dictated by it are generally considered to be obsessive and in need of mental stability. But let me tell you, from the inside of this awful, inescapable, living horror show, it is so much more miserable than you can imagine. I don’t want to wake up and live this any more than you want to hear about it. I want to be better so much more than you want me to be better. What you feel for the thirty seconds it takes you to glance at my Instagram post, I feel 24/7.

So I’m just going to be honest. Life is hard right now. I feel more alone right now than I ever have before. Yes, my life is ruled by pain at the moment and I’m not going to be ashamed of that. I’m not weak. I’m really, really freaking strong. I live this hell every day and every day I wake up and fight some more. So if you can’t handle that, then that’s ok – but if you want to be a part of my life, I could really use some friends right now.