my life 1.0: mental illness + chronic illness

mental illness. This is where I am going to start because things need cleared up before I continue. It is a very controversial issue in general and I hate conflict so be nice.  I have had depression and anxiety problems since I was a child. That time in my life is clear as day in my memories because of the response I got when I dared to say anything about it.  I can immediately think of 5 people that sat me down and said everything in their power to convince me that mental illness is not a real medical type of thing, it is me not trusting God. Bible verse after verse was drilled into my head and the key to this was to memorize scripture and every time anxiety or depression hit me just say that verse over and over again until those feelings went away.

Depression was not an accepted word either, instead it was downplayed as sadness. As you can probably imagine when my feelings didn't go away I felt even worse because I believed I was not only failing those who tried to teach me but I was also failing God. I was riddled with shame and my only coping option was to not talk about it and make it a skeleton in my closet.

**please note: I am not saying medication is the only or the best option for everybody. I am also not saying that memorizing scripture to repeat to yourself is a bad or useless thing to do.**

 Turning to Jesus is always the right way to approach everything. So yes, people were right in that aspect but how I would describe it now is that God is the answer but He can use things such as therapy and medications to work in our lives and these "tools" are not automatically sinful. Do I believe that they can be sinful? YES. Anything that we use to take the place of God is sin but using these tools not as replacements but more like supplements is in my opinion and in my life is not directly wrong.  I got the help I needed off of ^^^^^^ principle. It's a principle I follow to this day, I cannot let my medications be my only hope, or my only escape, or my ONLY anything because God occupies that ONLY spot. I also learned that sadness and depression are two separate things.  turning to medications because you had a bad day or a bad week or even a bad month is not what I am talking about. Depression takes on a life of it's own. It's deep and pitch black like a pit of sorrow that tells you that your life has no value so much that you come to believe it. It's real. Scary real.

Somewhere in most cases of chronic illness lies mental illness. It is so incredibly difficult because once a doctor knows you have any form of mental illness it becomes the answer to it all. You are not physically ill, you are mentally ill and have convinced yourself that you are sick when you aren't. I legit could not count how many times this has happened to me. When you are physically suffering having that dumped on you is 100% soul crushing. Your chance at medical help starts and ends right there. Over and over and over. They stop trying to find a cause to your symptoms because they are not real. Imagine having a kidney stone and the doctor comes in and tells you that you are making it all up for attention or for my favorite phrase "drug seeking". Did you just cringe and think that you didn't want to picture that in your head?

It is a vicious cycle because physical illness can be the reason behind mental illness. It is sometimes hard to figure out which came first but in the end that aspect really doesn't matter. I would say it was maybe a year ago when I was hospitalized for the 5,928th time and blood work showed that my liver was struggling a little bit so they called in my GI for a consult. He looked at me, looked at my chart and proceeds to tell me that he thinks it could be a drug interaction and without hesitation he told me that he really doesn't know which med could be the culprit but I really don't need these psychiatric medications anyways which I bet you will disagree with me but there is no such thing as "clinical" depression or anxiety and that I needed to stop psych meds and go to a therapist instead.

My stunned response to such a blunt statement was " I don't think anybody wants that. It really isn't pretty" he just said my liver is fine we will just keep an eye on it and walks out. Now I knew he has a point because yes medications can affect the liver and he could be right in the fact that I should stop some of them which I was willing to do if that was REALLY the problem. I contacted my psychiatrist who said in her opinion nothing she prescribes would do to my liver what was happening. So many years of chronic illness and it is still an uphill battle on the mental vs. physical controversy. My approach to it is to self-advocate. You have to these days. I may not like conflict but when it comes down to my LIFE that we are dealing with I have to stick up for myself. I will polish this off by saying that these are MY THOUGHTS AND OPINIONS.

Summer depression

Summer has always been my favorite season. I would spend hours on an inflatable boat with a trolling motor on the river soaking up the sun and just spending time in God's creation. Being out on or in the water was my happy place. Just being in the outdoors exploring new places and  having fun. It will be almost 5 years since my last vacation with the BFF. We rented  a cabin on the lake, spent our days going on safari's and exploring the land and probably my favorite part was when the sun went down we found a dock to sit at, with our feet in the water just talking away.

Being in the middle of nowhere on a dock and all you could hear was fish jumping, birds chirping and what had to be an army of cicadas making a variety of sounds . I took in every second of the peace and quiet, it's memories I will never forget. 

When I got sick every aspect of my life changed.. This disease has taken almost everything from me. All of those things that I loved I can no longer do and might never be able to do again with every summer bringing harsh reminders of that. Summer has become my depression season. I want what my life used to be more than I could even explain but it's gone without divine intervention.

 Grief waxes and wanes but it doesn't go away. I battle the desire to lean on my own understanding (which is nothing) and loose site of hope. I have been really working on surrendering this to Jesus and leaning on His promises instead of my understanding. I am so thankful that God meets me where  I am. broken. 

right now I have to focus myself on what God promised me even though it may not look like what I expected it's still truth. There is a plan in all of this.

Jeremiah 29:11 

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.

"busy people topic" turned testimony? yup.

***I didn't intend to share my testimony, I was on a whole other topic but words flowed and here we are.*****

Back in high school I was just going through the motions of the typical kid that hated school and had a social life going on. It was normal until one day I was hit with crippling abdominal pain. I saw so many doctors and the ER trips seemed endless just like the pain. I was finally diagnosed with iliohypogastric neuralgia and spent two years in pain, having surgeries and procedures and had several nearly fatal infections. I had to drop out of school and suddenly nothing became normal. I got defeated and spent some time in a psych ward and I gave up on the God I grew up hearing about. It was incredibly hard. Then one day I end up in a coma from multiple organ failure. When I woke up my body had kind of re-booted and my earlier health issues improved, I had to deal with memory loss for months but when that went away I could start life over. I also found God again because this coma at the time seemed like it was the worst thing that could ever happen but the opposite thing happened, it gave me a second chance. Only God can pull off something like that. My faith began to heal just like the rest of me.

I went to college, got a job, got a reliable car and was living in a rental house. I thought my past was behind me and I would never have to go there again. Things were going well but I fell into the rut of replacing God with the things I mentioned above. I let the business of life take over my relationship with God. I lived that for 3 years loosing site of the miracle He did. I got a severe cold that would not go away. Doctors couldn't figure it out but it put me out of work for 2 months but I got to the point where if I didn't go back I would be fired so I dragged myself into work but 3 days in I had a bad seizure that has changed my life forever. I lost my job, I had to have my parents pay my bills it seemed like my life was unraveling. I then began passing out up to 20 times per day and my doctors were clueless. I had to go back the things I left behind and it broke me.. I had to make the choice of going forward with or without Him.

I didn't know what laid ahead for me but I did know that I couldn't do this without Him this time. It took about 2 months for me to find my diagnosis but when I got it I learned that it doesn't have a cure and it's all about symptom control. I was taking 10 different medications a day and had a surgery to have a port placed so I could begin daily hydration infusions just in an attempt to keep my blood pressure up. My central nervous system is in failure and basically all the  things your body does that you do not have control over doesn't happen. Blood pressure, heart rate, breathing all of those things you don't have to think about because your body just does it. Mine doesn't. It effects everything.

I have had so many complications to add to it.. my legs became riddled with blood clots. A clot broke loose and went into my lung causing a potentially fatal pulmonary embolism, I have had several more seizures, I am left with a feeding tube after loosing nearly 100 pounds from nausea and vomiting, when I go places I am often wheelchair bound so I don't injure myself passing out and I'm often bed bound. Coping with this has been so hard because without another miracle my case is so severe they say I could be like this forever. The normal things like marriage and kids feels like crushed dreams.The one and only thing that gets me through every minute of everyday is Jesus. Without His promises I have no hope. He could do another miracle but He may not the only thing I am certain about is that He is here with me through every step...holding me when I need held, protecting me when I need protected and loving me with a love I can't fathom. I feel alone and sad at times but through this second rodeo of fighting for my life I have learned that God doesn't give up even when I do, He lifts me up when I am down and I can't imagine trying to do this AGAIN by myself.

I wanna cling to You Jesus
hanging on your every breath

I need to hear You now
I need to know it's You
I'm standing on your promises
I know your Words are true
You're bigger than what I see
That it's You in exchange for me
'Cause even the impossible is your reality
Jesus I believe- big daddy weave

one minute at a time

The thought of updating this blog has just been too daunting. Let's just say my life has not been a walk in the park lately. Just when I start to feel like I am in good hands (doctor wise) something comes crashing down. It is usually one thing but right now man Satan is throwing some hard punches. When you have a rare illness that doctors don't know much about  you end up lost and unsure where to turn or what to do with yourself besides laying in a fetal position shaking. I just don't even know which way is up right now.

Here is a brief overview of what has been going on lately. Back it up to me finally founding a doctor willing to do infusions but only in his office because of my infection risk. Going there every Monday Wednesday and Friday is hard on me but I know it needs to be done like that. I finally have 2 infusion nurses that keep a very close eye on me and honestly that gives me peace. About a month into this my physician left the practice and tossed me off to another doctor in the practice. I was fine with that at the time and my treatment plan was not going to change. My infusion nurses have been such blessings, they have caught things that nobody else caught because I was under the right care. It turns out my iron was dangerously low and I had to have 2 iron infusions, without this office I highly doubt that would have been discovered. I actually have yet to actually see the new doctor because he has been booked up and canceled on me once but these nurses know what they are doing.

Apparently I am there most delicate and fragile patient so everything has to be done perfectly because I cannot afford an infection or any other issues. Well, I have been have some anemia problems but they are on top of it all so I have been able to avoid blood transfusions and it takes such a load off of me just having an advocate. Despite my slight irritation that I can't see the newer doctor until April 5th I felt safe and thoroughly taken care of for the first time in so long. So, we were going forward, week and after week of me in the hands of those I trust. 

Then the ball dropped again. Due to staffing issues the infusion center has had to close for an unknown amount of time. They set me up with home health and it is one big mess. Not competent hands and when I spoke to the infusion nurses they said this is my only choice right now. I am also not being followed as closely this way and I am feeling lost and helpless again. I am just praying they open up soon. Right now I live hard minute by hard minute. Hard but God's graceful minutes.

There is the brief (I know right?) overview. Anyway, just pray for me, I feel a little beat down and tired from always having to advocate for myself.

future

Most of the time the thought of my future is daunting. The fact that this could be my life forever takes hold of me sometimes thus being why I haven't written in so long, the words just aren't there. I feel like most of my life has been one roadblock after another and it's not stopping yet. I wonder and get lost in the mystery of it all. I want to know what my future holds but God has no obligation to tell me. Trust enters the scene right here because I have no choice but to keep going. I can choose to walk it with God or without Him, that is about the only thing that is up to me and I have tried both.

One path led me to a psych ward and the other is leading my days, my life, my future. The thing is, even though this life is hard I can rest assured He has a plan and it's a good one filled with hope because He promises that to me and I may struggle with it but I believe it.

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.

"From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there"

casting crowns

My daunting life is in His hands. My chaos is a masterpiece of his PERFECT plan. My life was given to me by Him and will become eternal with Him. I now have the choice of what to do with the middle section of this life, we all have a choice in the middle, we will stumble, we will fall, but how  we choose to get back up again is all up to us. Choose wisely.

Self-advocacy

Insomnia. Tonight I feel haunted by so many unknowns .This disease feels like it has taken everything from me and I lay here tonight thinking about how I got here, in this situation that I can't escape from. As weird as it might sound this is getting HARDER as my vital signs become semi-normal more often. The post vital check response of wow your numbers are good today makes me want to loose my marbles. In the past they used to always be horrible so I had nothing to prove or explain but now I am left trying to explain that they may be good but for whatever reason the inside of my body does not reflect that. Which is weird and frankly hard to believe and the skeptic look I get from medical staff is like a dagger because it doesn't make sense.

My blood pressure could ok per MY normal but I feel dizzy and like I am going to pass out. Sweet baby Jesus is the only one that can explain that one. All the symptoms of low blood pressure but yet it's not low.

My heart could be within my normal range but I feel like it is racing, I can't breathe, I am weak and disoriented as if it was racing.

These things plus some make me feel like I have to prove how sick I really am and  that comes with the constant fear that I will not be taken seriously. I have faced this fear so very many times in my life and it doesn't get any easier. Not being taken seriously or believed at all is hands down the hardest part of this. It's enough to drop you to your knees in a crying heap. I shouldn't have to prove this. Any of it. But here I am doing it because I have no choice, if I don't advocate for myself who will?

self advocating can make some seriously ticked off medical staff that's for sure, making you feel even less validated as your mind gravitates towards them maybe being right. Maybe it is all I my head, maybe it is because I just need to get on a treadmill, maybe I do just need serious counseling that will wash all of this away .

I'm unable to sleep as I feel the weight of the above on my shoulders. Seriously, don't take for granted the little things EVEN THE LITTLE THINGS YOU HATE because you are capable of doing those little things in the first place. And the big things. Be thankful that God has blessed you with them regardless of how tough they may be..because you are able to do them and that is not something everyone can do.

prayer request

I have a couple of prayer requests to share. Tomorrow I am scheduled for an MRI and an EEG  due to memory loss and I hate both of them. The sound of an MRI machine sets my nervous system off and causes involuntary movements once that happens it is hard to be still for the EEG. Both of them are going to be very long tests too and I need accurate results. There is a small piece of the back of my brain that is basically dead tissue from the lack of oxygen when I was in a coma in high school and we are making sure that is stable and checking for seizure activity.

**if the results of these tests are normal then I will be admitted to the hospital for a week long video monitoring EEG just in case we are missing small signs. obviously I would be thrilled to do that one.**

Also, due to Christmas I will be missing infusions, I will not get another one until Tuesday which is a huge stretch and I do not know how my body will react to that.

I have a lot of anxiety about all of this stuff going on and could use prayers for peace and strength to keep it together.