burdens and expectations

I think (for me) the emotional/mental toll of being chronically ill is by far greater than my physical symptoms. It beats you down to levels you didn't know existed. It provides the perfect opening for Fear, hopelessness, sadness, depression and anxiety to work it's way in and create a big mess that nobody can see. It's a prime example of Satan at work.


 I could not tell you how many nights I have spent in tears because just the thought of facing another day overtakes me.  The mental knowledge that I may not get better here on earth is so defeating that sometimes I want to throw in the towel and curl up in a ball forever so I don't have to face it. No matter how many times I am told that I am not a burden the feeling just doesn't go away.


I expect so much out of myself  when deep down I know I will never meet these expectations I hold onto. This mindset leads to despair. (I wouldn't recommend it) I get super frustrated about not being able to do the little things that seem so simple so I attempt them anyway. My dad says the same thing every time I have to text him that I am stuck on the floor. 1. are we making poor choices again? followed by 2. now why did you think you could do ________ in the first place?! 


 I long to be able to do the things that someone who's 25 can do and I struggle so much with loosing my independence that I attempt my poor choices anyway. Then I get myself stuck. It's a daily battle in more ways than one. It's hard to see how this is for my good but Jesus promised it is so I try to step back and re-focus myself toward the TRUTHS we are promised by a God who is way bigger than any illness and can restore my heart.


This has been, is, and will always be my favorite verse of hope.
 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 

God's will

I have heard people in trials say "thy will be done" and I have always thought that there is no way that in the midst of so much hurt one could say that AND MEAN IT. It's an act of complete surrender that I haven't chosen to give up yet apparently . It boils down to fear (at least for me anyway) as odd as it may sound, I'm scared of what happens if I let go. It's sin and a lack of trust, I know.


Giving everything up and basically telling God to do what is in His will for me; even if I don't like how it feels is scary because I don't know what that is, I don't know what God's plan for me is and I struggle with the idea that maybe ALL THIS really is His plan. The thought of it causes me to think that I just asked God to give me the hard "do you trust me" tests. I already feel these tests being thrown at me left and right and any increase in them feels like more than I can handle.


I can't handle it. It's already hard enough. I'm struggling with it but in these moments I have to go back to the basics and remind myself that God is good and everything He allows is for my good even though I don't understand it and so far I am not a fan of this plan but that doesn't change the fact that it is for my good. He has carried me this far so why would He drop me now. That knowledge is comforting to me through my battles. I may be far from being able to say and mean "thy will be done" but my prayer for myself is that someday God will help me get there and I know He will.

 Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

extend that grace

My life is intimidating. I get it. I'm intimidated of  myself sometimes.




What do you say to someone who's sick every.single.day that isn't awkward? What do you do when you cannot relate to one's suffering? How do you approach talking about your happy times when in the company of the always ill? Can you share your "petty" comparing prayer requests without guilt? Does every conversation have to begin with "how are you feeling?" Does illness have to come up in every conversation? Are you freaked out by medical equipment?






 I know these things can race through your brain when you are healthy. In honesty, I cannot blame you for it, it makes sense so I will extend that grace to you who do what you can to avoid even being in these encounters at all. I understand it but let me help you.






1. I don't expect you to go too far from your comfort zone. If you are uncomfortable with the thought of taking me places, please know I don't expect you to do that.


2. If you are afraid of me passing out in your company it is ok to say you don't want to be alone in the vicinity.


3. If medical equipment freaks you out please note I don't need you to touch it. (besides wheelchairs)


4. I am prepared for my surroundings. If I am out and about with people who haven't been around and even on occasion with those that have I will give you the rundown of "what to do if"


5. scared that in the moment you won't remember the rundown? I have paper copies of that along with all medications, emergency contacts, all the things that a paramedic would need.
6.Talk to me. It's simple. Let me answer the above questions for you.

• It's not awkward unless you make it awkward. Once again just talk to me about whatever.
• When you cannot relate to one's suffering you listen, Please realize I don't expect you to relate so take that load off also, I don't want you to understand because if you did it would mean you were going through this too and nobody wants that. Just listen to me, it's all I ask. 
• talking about your happy times is ok even though it makes me a little sad sometimes that does not mean I don't want to hear about it at all.
• SHARE YOUR DARN PRAYER REQUESTS puhlease. pain, suffering, hardship, it's all HARD so the next time you hold back because my issues are "bigger than yours" please slap yourself 5 times.
• Please don't forget I am still human. My daily life might look different than yours but don't let that intimidate you. I have the same thoughts, emotions, and issues as anybody else.

The moral of the story is that you can communicate with me like you would with anybody else. The worst thing you can do is pull away. Don't let my list intimidate you either. It's okay if you happen to slip up, I won't hate you. Grace is a thing. I hope this helps you feel more comfortable. A lot of people just don't know what to say but now you know.

vulnerable

I have not written in a long time because sometimes I just don't have the words needed to form any kind of a sentence. Also, I rarely feel self conscious about my illness and I usually have no problem dumping my heart out but that just hasn't been the case lately. I have found myself feeling overwhelmingly vulnerable about everything. This fact has changed my thought patterns on everyday life.


It gives sin a chance to cultivate. Instead of feeling happy for others I caught myself slipping into the comparison game. I am finding it particularly hard to sit back and watch as others celebrate "big life events" without self pity. My heart longs to be normal and follow the usual path of marriage and starting a family. That is obviously not happening and I don't know if it ever will, just because it is the desire of my heart in my eyes doesn't mean it is God's desire for me. Those don't match up perfectly because mine is feelings based which can be led astray.


But my feelings are still real. I'm sure you can understand why I struggle. It's the feeling of "but I want ______ too" Comparison and discontentment with the path laid out for me can consume me and in all honesty it has been. I don't see a way out that will meet my hopes and dreams. I don't want to be sick anymore, I want to move on and leave this all behind me. I mourn the loss of what I imagined my life would look like. I struggle with questioning what God is doing here in my mourning. It's hard.


Knowing that my heart is still in the hands of Jesus regardless of how torn up it may be and as I let truths slide back into my consumed heart, I can only pray that God will give me the strength and comfort I need to shape my heart.

"This is not the place I thought I’d be
This is not the road I had in mind in front of me
Don’t see the reason, and sometimes I’m scared
But I know you’re leading, even when I don’t know where

So I’ll put one foot in front of the other
Take one breath and then take another
Lead the way, God, I’m gonna follow you
‘Cause you’re faithful every moment
When it’s easy, when it isn’t
You’ve never led me wrong, never let go
Your love is strong and your arms still hold me
Right here to forever
Like a child and like a treasure
From the start to the end, through the ups and downs
You were with me then, and you’re with me now"-Mallory hope

ohh yesterday

I have had a migraine for a whole month and it is brutal. I contacted my neurologist office to see if there was anything I could do besides sit in an ER for way too many hours and I never heard back even after 3 emails and 4 phone calls. My current headache medication  is just not cutting it for some reason, it helps make it more tolerable but after 4ish hours it is back in full force.


I couldn't take it and went to an urgent care who was so understanding and helpful it was amazing. She said that my doctor should give me something stronger because this was bad and could have been stopped at home. My pain levels were so high that my pupils were completely blown and did not react to light, I got a fever because my messed up body does not know what it's doing and it's pain response is fevers, and my blood pressure was actually high from pain.


They ended up giving me IV morphine and two injections of Benadryl and reglan. It helped a lot and made me feel like I could  get on top of the pain. Well, no. It's back. I crankily contacted the office manager for my doctor who doesn't answer me and they want me to come in today and do a group discussion to resolve issues. Please pray this goes well and something can be worked out.

breaking point. We all have them.

I need your prayers for peace, patience, and comfort big time right  now. I'm just broken. Here is the saga.


Apparently once you hit the 2 year disability point you are forced into Medicare part A but part B is optional. When I "got" medicare there was literally just an insurance card in the envelope, no explanation of things, just the card and the option to join part B which you have to pay for or decline. Because I am under my dad's insurance it seemed silly to pay for it so I declined. Nobody told me what happens when you decline part B.


It's bad. really bad. Due to the small size of my dad's job they require Medicare to be primary instead of my dad's employment one which. I also knew nothing about that until the bills rolled in. I should have looked into it but I didn't. Here is the situation:


I have been getting bills from various things and I was so confused because the deductible on my dad's insurance had been met so we shouldn't owe anything. I thought. I have spent weeks calling around and trying to figure out what the deal was. Today I learned this:


You have Medicare part A and Anthem. Medicare part A is for hospital benefits only. By not having Medicare part B, Anthem is processing your claims and paying as secondary, we are taking contractual adjustments, the balance that you are being billed is what Medicare part B would have paid. Since you do not have Medicare part B, that balance is your responsibility.


Now why was I not informed of the consequences of not taking B?! My dad made a phone call for me and Anthem says we should have gotten an explanation letter, I did not and they can't even find it in their system. I spoke with the social security department and they said there is not a letter, they don't "do that" mmmhmmm


So where does that leave me? hibernating. forever.  the thing is I have just one way to try to enroll in part B but it is a longshot. Social security is making me fill out papers and do some stuff to attempt getting a special disability enrollment period where I would have part B in July if it works, if it is declined then I have to wait for the next enrollment period in January. JANUARY.


As of this moment without part B all doctor visits and anything other than being hospitalized falls on us to cover whatever amount remains after anthem did what they would do which isn't much. I already have a pile of bills that will be on us and I have a few doctor appointments coming up that will make that pile larger. If I can get part B in July it would help a lot as far as going forward but what damage has already been done is there. On us.


I now will be spending next week calling billing departments to see if I can get anything written off because of my fixed income and the reality of paying everything isn't possible for me so I need to see if they have payment plans and just whatever to help. I can't even handle the thought of having these pile up until January if they don't give me the special enrollment period. Right now I can barely handle the thought of any of it. I don't know  what is going to happen but this is where I need the prayers right now to go to. I feel so overwhelmed and broken. I know God has a plan for all of this and that is the only thing keeping me together. Jesus. Where my help comes from. Where faith enters the picture. Where miracles happen.

"I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone

You've been faithful, You've been good
All of my days
Jesus, I will cling to You
Come what may
‘Cause I know You're able
I know You can--mercy me

theme faithful

It has been a really rough week  month for me,  I'm tired of being sick and tired and that little pesky defeat thing just always finds a way to creep in. I am desperately seeking redemption from the extreme guilt I am carrying around. Like hello God JUST did a whole pile of miracles on my behalf . I am thankful for these miracles but apparently that's not good enough for me. He just rescued me when I felt like I could go no farther, showing me His never ending faithfulness and devotion to me and I want more..


This is kind of embarrassing to say but I will do it anyway. It's kind of like ok thank you God but um I'm not content because yeah you enabled my treatments and all that but you didn't take it away and that is what I REALLY wanted so I am going to go visit pity party land again instead of rejoicing in your devotion.


The level of devotion here is obviously not equal. I struggle and fail. My heart needs some work I would say but faith abounds with Jesus and He is pretty darn good at changing hearts. There is hope.





 I opened up my prayer journal in desperate need of Jesus to put these shattered pieces of my heart and life back together and this is the page I opened up to: I have no more words.