Please Pray…

I feel far too weak to write anything very long tonight…but would really appreciate a very specific prayer request.  I’m fighting a pretty severe infection right now that we just finally found out yesterday is specifically Hemolytic Coli.  I’m incredibly miserable to say the least and so exhausted from all the Lyme Symptoms flaring up, this infection raging and the list could go on…  It’s great that we know what the infection is….but because of my liver condition I’m EXTREMELY limited as to what my options are for medications to fight it. 

Thanks so much for praying. <3  This is now the 5th gut infection I’ve had to fight in the past year and….it’s incredibly discouraging, exhausting and painful to say the least.

 

Thanks so much everyone!

 

Love,

Monica

 

New Fundraiser and Prayer Requests

Hey Friends,

We’re asking for 2 specific prayer requests right now.

1.) Please be praying for Monica to start feeling better soon. She’s been extremely weak the past few days and the inflammation/pain/Ulcerative Colitis is really wearing her out. It’s been almost 4 months now of her dealing with it constantly….we’re really praying for improvement with that soon. It causes the Lyme and inflammation throughout her entire body to flare up.

2.) Please pray for God to provide the finances we need for this week to get the medicine/nutritional support/Born Clinic Treatments and at-home treatments that she needs. We have been able to keep her somewhat maintained with diet/supplements….but we really need to get her back on the IV’s and some additional support as God provides the resources. Her specific need for this week is $677.  LINK TO NEW YOUCARING FUNDRAISER

Thank you all SO much for the FAITHFUL prayers, encouragement support that ALL of you have been over and over again for Monica and all of us during these past 2 years. Because of your prayers and financial support Monica has been able to make SIGNIFICANT improvement….but there is still a long way to go. We set up a YouCaring Page for her over the Winter with her financial needs for the “90 Day Blitz” that she did…and have set up a YouCaring Page again with the projected costs for the next 12ish weeks. Unfortunately, because of her Ulcerative Colitis…the cost has gone up a lot. Thank you all SO much for the financial support and encouragement you provided Monica during her first initial 12 weeks of intense fighting. It put her ahead of the Lyme Fight by a lot. We are now we’re praying hard that this UC set back clears up soon and that these next 12 weeks bring even more healing and that she pulls out even more ahead than her first “90 Day Blitz”.

We believe she’s on the right track…it’s just taking A LOT of time…which is one of the biggest parts to Chronic Lyme Recovery.

Thank you for your prayers and support,
Cindy DeMass for Monica and all the DeMasses

 

P.S. Please pray that her appointment today goes well.

He Fulfills His Promises <3

“…God has brought to Israel a Savior, Jesus, *AS HE PROMISED*.” ~Acts 13:23 || Thank You for ALWAYS fulfilling Your promises, Jesus. —– I feel like this year, more than ever before God has been opening up my eyes to see how OVER & OVER & OVER He FULFILLS His promises. Never once has He forgotten… He said it. I believe it….whether I *feel* like believing it or not based on what I see...no matter what, It’ll come to pass! Resting in His precious promises tonight. Had a couple medical appointments earlier today….making progress…but still have a lot of work to do treatment wise. Felt pretty weak today….but thanking Jesus for HIS strength, joy, grace and faithfulness that keeps me encouraged, hopeful and full of His perseverance to keep on keeping on. Thanks for your continued prayers on this journey, friends! Definitely sending all the prayers back your way as well.

Quick Update :-)

Hey Dear Friends!!

Just wanted to do a quick update about how I’ve been feeling lately… I’ve been having some REALLY good days recently which has been amazing! I was able to enjoy 2 trips to Lake MI AND walk in a parade about 1 mile long with my family on July Fourth. Each of those activities were HUGE blessings to me and encouraged my spirit TREMENDOUSLY. It feels like a luxury to be able to get out of the house for something other than Doctors appointments and treatments!!! After each event I crashed in bed for 1-2 days and then to be honest, since July 4th I’ve been mostly in bed. It was fun walking in the parade…but I’m not sure how smart it was for my body…it kinda felt like it shut down after July 4th for a few days. But just the fact that I can push myself at all to sometimes do things outside of the house means that I’m slowly regaining strength and healing! I’m looking forward to the day when I don’t totally crash for days after any kind of event….but for now, I’m cherishing the times that I am able to get out of the house and enjoy myself. It’s been so long!! Thank you, Jesus!! Unfortunately, my Ulcerative Colitis is STILL majorly acting up…and keeping me in a lot of pain. I’ve been having to make 2 trips a week to my clinic in Grand Rapids instead of just 1. We’re waiting on some more tests to show more of what’s going on with that situation. It’s frustrating having this setback….but I’m confident that once I’m over this, I’ll be further ahead than before.
In regards to everyone who has been asking about where I’m at financially….I’ll be posting a new YouCaring Lyme Treatment Fundraiser page shortly with my estimated expenses for the next 3 months. (People seemed to really like seeing that from the last time.) I’m humbled, grateful, and beyond amazed at how much the Lord has used you all in my life through prayers, encouragement and financial support in helping me along this journey. Looking back to where I was before I started my first “90 Day Blitz” I’m SOOOOOOOO much better and stronger. Because of how much I’m improving, slowly but steadily….I’m staying quite strictly on the same exact schedule. Hopefully not too many more of these “90 Day Blitzes” and I’ll be ALL better! Until then I totally covet your prayers as this fight continues to be a serious and hard one. And I also cherish you PRAISING and THANKING Jesus with me for the amazing recovery that I have experienced thus far. I love you all and thank God for every single one of you!! Thank you for being on this journey with me.

Happy July Everyone!!!!

Love,
Monica

Update

Hi Friends,

 

I’m sorry I haven’t posted in awhile…I haven’t been feeling up to writing at all lately.  We left bright and early this morning for my Clinic…I see my Doctor about every 8 weeks and   She’s amazing and I’m SO blessed to be working with such a great Doctor.   The main focus is unfortunately back on healing my gut & Ulcerative Colitis…the bleeding is pretty bad still & so is the pain. My Doctor said that most other Doctors would’ve had my colon removed by now…:-(  SO thankful to be working with her and doing alternative options to that route! She ordered a lot of blood work & some other tests based on the symptoms that I’m dealing with right now. I’ve always gone into the office for my UC/Peptide shots before…..but today they taught my Mom how to give them too me.  My Mom has had to give me antibiotic shots before…so this is pretty similar.   Dr. Born also talked to me more about my MTHFR gene mutation…and the things I will need to take for that.  She doubled my thyroid medication since that is still too low and we also talked about the Lyme.   Honestly, between Lyme, Ulcerative Colitis, POTS, this genetic issue…..I’m feeling so overwhelmed and my mind is SWAMPED.  As soon as we got home I just wanted to curl up in a little ball and cry…..not because I’m discouraged or depressed or sad…..I’m just worn out.  Sometimes you need a good cry and then you’re better again somehow.  At least ready to keep fighting hard. :-) I was thinking a lot about my Viola/Orchestra teacher today…..so many times back in High School she would give me a song that seemed like WAY too large a mountain to climb….and I didn’t think I could learn it.  But she always said, “Practice doesn’t make perfect…PERFECT practice makes perfect.”  In other words…it’s CONSISTENCY….practicing DAILY…and pretty soon that one bar of music mastered turns into 5 and 10 and 20 and then the whole mountain (song) is conquered and mastered. :-) And the once horrible sounding song is now gorgeous! Yes, I know….horrible analogy…when I was telling it to my Mom today she was kinda like….and what does that have to do with Lyme??  LOL!  My mind must think different than most. ;-)  I guess….I just felt like that was a really simple analogy what this fight is like.  Full Recovery seems SO unattainable right now….so daunting…and impossible….just like some of those old viola recital songs Mrs. Simpson gave me.  But being consistent with this fight every single day IS already and WILL continue to bring results.  And someday….SOON Lord willing the mountain will be conquered and just the beauty of this experience will be left.  On an encouraging note, my Doctor was looking at test results from EXACTLY (to the date) 1 year ago from today and my body is QUITE a bit better.  Thank You, Jesus.  Yes….I’m in a setback right now…but once we get on top of this…I should pull out further ahead than I have in awhile. :-)

I’m ready to go crash in bed….so  good night world!  Thanks for reading and for praying.  One day closer….<3 

God bless you with beautiful healing and God-sent Joy tonight and always.

 

Love,

Monica

The Perfect Gift…<3

I don’t have a whole lot of energy for writing tonight…I’ve been so sick today and wishing I could curl up in a little ball and sleep until all of this Lyme pain and symptoms and fight to get well is over.  But since that can’t happen…I’m curled up in a little ball resting by my big sliding glass door in my bedroom watching all the storm clouds roll past and playing one of my favorite collections of music. It’s a Lullaby CD entitled, Hidden in My Heart Volume 2.  My dear friend, Ruthann, gave me the CD back in 2012 and I’m pretty sure I have listened to these songs 100’s of times by now.  It was the PERFECT gift for me and I’ve spent so many hours just listening to them with my eyes closed just letting the truths & hope sink into my heart and renew my spirit. The songs are so precious, beautiful, full of comfort, hope and have a very calming sense to them.  If you’re looking for a good CD to get for yourself as you battle a chronic illness….OR if you are looking for a gift for someone who is sick.  I’d HIGHLY recommend this one.  I wanted to share one of the songs that has been on repeat this afternoon as I lay here hooked up to wires doing Lyme Treatment.  Love this song right now. <3

 

Love and prayers to everyone!   I have been slightly overwhelmed (in a good way) by the amount of e-mails and responses I’ve received from my last post, “But You Don’t Look Sick…”  It breaks my heart just HOW MANY of you are out there that can relate so perfectly to that post and I want you to know that I’m praying for you and will reply when I can. <3  Keep fighting and resting in Jesus, dear brave hearts.  One day closer.  Keep your eyes on Jesus….Jehovah Rapha…the Lord OUR HEALER. <3  He’s got this. Just keep resting and trusting. <3

 

Love Always,

Monica

But You Don’t Look Sick…

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Let me just start out by saying that this is an EXTREMELY difficult post for me to write and possibly even harder post for me to publish. This isn’t the type of post I like to write or want to write.  I’ve been told I “sugar-coat” my updates too often…so this is one that isn’t going to be “sugar-coated”.  It involves being very real, very blunt and very graphic.  I’ve avoided writing a post on this topic on purpose. Its painful to write about things that hurt…but I think it’s necessary.  Why?  Well, one of the reasons is because I’ve heard from SO many people that reading my posts is like I’m telling their story & what they experience…only they don’t know how to write it or can’t.  I write for them.  Another reason is to help people who don’t have Lyme understand what it’s like so they can better encourage and support their friends/loved ones.  I write for them.  And the last reason is because I don’t want to forget these moments of intense fighting….and I know I will. I’ve talked to people who are now Lyme-Free who don’t remember the hard years of fighting unless a family member reminds them.  And they’ve told me to write about it….in case someday I too, forget.  Sometimes intense physical pain is blocked from one’s memory…and I think this is a good thing.  I wouldn’t mind forgetting honestly…but I do think there is a reason God is having me document my story.  And the best way is writing about it when it’s fresh…especially in case I forget someday.

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Ugh! Okay…LOL…I’m already starting to cry before I write this post.  It brings with it so many emotions to the surface…deep ones.

 

Tonight was another RUDE awakening of how real this fight with Lyme still is.  One minute I’m TOTALLY fine juicing up a delicious honey-dew/lime electrolyte drink and the next I’m shaking so bad I can’t stop, gasping for air with the sensation like I’m suffocating, vision going in and out, body completely limp, heart racing a million miles a second (SUPER uncomfortable feeling), the pain….ugh….can’t even begin to know where or how to describe it.  Every part of my body is shaking. It hits suddenly and slowly.  Suddenly because it LITERALLY feels like an “on” switch to feeling good just got turned “off”. Slowly the “energy light” of my body flickers off over a 1-2, maybe 5 minute period. I know instinctively to get to a couch and lay down IMMEDIATELY before the “light” flickers off completely and walking is no longer an option.  The confusion…the dizziness…trying to calm the panicking feeling inside of me…focusing on Jesus and His Scriptures as much as possible.   It’s like a downward spiral that feels like it lasts ages.  It feels like I’m dying…I know that sounds horrible but I don’t know any other way of saying it other then it feels like my body is literally shutting down.  Today the intense part probably only lasted 10 minutes total….but in the past it’s been an upwards of days…   I feel like screaming….yelling…crying…but I rarely, if ever cry.  Too much energy.  Sometimes the tears quietly trickle down…but crying seems to make it even worse so I avoid that whenever I can. And I don’t scream or yell…even though the pain makes me feel like I could.  It’s a terrifying experience to say the least.  I call them “Lyme Attacks” or “Lyme Seizures”.  This is VERY common among people with late-stage Lyme Disease. When it passes I slowly feel a release of symptoms. If I try to get up and walk it’s more of a limp than a walk and I usually have to hold on to things.  My balance is majorly thrown off and I usually don’t feel too safe walking unless I have someone to lean on.  It’s just crazy to me that an hour before I was so strong and even contemplating trying to do another mile walk…..and then hardly even being able to stand one short hour later.  It’s in those moments that can be scary and frustrating and hard and lonely and debilitating and painful and long and seemingly never-ending that Jesus is there. <3  He’s there in SUCH a real way.  “NEVER will I leave you. NEVER will I forsake you.”  His Word hidden in my heart comes back to my mind…and He brings peace.  Honestly, I don’t have panic attacks when I know a “Lyme Attack” is striking….but without Jesus…I’m sure I would.  He calms my heart and my mind in such a beautiful way. A way that goes far beyond description. All the pictures of Him healing those who came to Him in the New Testament come to mind…and I know that at the perfect moment, He’s going to heal me. <3  And so as the “seizure” passes…strength slowly fills my hands and fingers again….I can grab my Bible verses or my ipod.  Usually as I’m regaining strength laying perfectly still is when I get my mind off the pain by scrolling through instagram…or replying to someone’s comment on social media.  I have my qualms with social media…but during those long hard moments, it sure is a nice distraction to connect with friends and get my mind off of what I just experienced!  And I’m sure I sound like I’m fine to anyone who reads what I may have just written or seen what I just “liked”…..

 

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But you don’t look sick….

If anyone had come over today they wouldn’t have thought I looked sick….at all. They probably would’ve even thought I was feeling great.  Would that have been true?  No.  Not by far. Yes, I’m definitely feeling MUCH better….but MUCH better is FAR from ALL better.  Much better means I’m  “functioning”…not “thriving”. :-)  And especially with this recent Ulcerative Colitis/Autoimmune issue going on the past 5 weeks I’ve unfortunately been feeling my body going backwards in progress made.  This Lyme recovery is definitely 2 steps forward and 1 step back…which still means progress even though that one step back is always SO hard and discouraging.

 

This topic of “But You Don’t Look Sick” is an incredibly sore and painful topic for a lot of people who are chronically ill. Because they don’t LOOK nearly as sick as they FEEL, many people assume that they are fine.  For example:

 

My FIRST year of being sick when I was 18 a professor at the college I was taking classes at told me I was just stressing about life too much.  She was a NURSE who was now a professor. At that point, I was still trying DESPERATELY to hide how sick I was from everyone around me…and after feeling like a fool with several Doctors who said it was in my head I thought that maybe…just maybe I could trust her.  I shared with her the symptoms of intensity I was dealing with.  She made me feel like a fool again and that I was making it all up in my head.  It would be a long time before I would trust sharing my symptoms with someone again…

 

The tears of being told BY DOCTORS after these intense episodes of shaking that I was FAKING it…or hyperventilating.  And then having them try to convince my parents I was faking it.  Doctors?!  The very Doctors who are supposed to be helping me and fighting for me and trying to figure out what’s wrong with me??  How anyone could fake what I’ve been through is beyond me…it would honestly be impossible.  And why would anyone WANT to fake being sick?  Nobody ENJOYS being sick…and trust me, opening up with the world on this blog &  facebook about this struggle has been one of the hardest, most vulnerable and humiliating things I’ve ever done.  I’d MUCH rather be known for ANYTHING else other than….”the sick girl”.  I feel like everywhere I go now people know who I am…and know alllllllll about me….even if I have never met them.  It’s humbling and a blessing.  But just to make things clear. I would NEVER have chosen this….people don’t and can’t fake this. Needless to say, after that experience with those Doctors…It would be a long time before I would trust sharing my symptoms with someone again…

 

How do you tell someone when you WERE an independent, very driven, very athletic, very motivated young woman that you can’t even find the strength to get dressed in the morning.  How do you tell people that even though you really are full of JOY on the inside you might look sad on the outside just because you literally have NO ENERGY….not even enough to open your eyes or smile?  How do you tell someone that you forgot how to get home from some place you’ve been to a million times? How do you tell someone you forgot a pin number that you’ve used for years? How do you tell someone that you forgot your Birth date?  How does that change so quickly….overnight…with one tiny tick bite?  How do you tell someone that you’re struggling with depression from all of this when people’s only response to you is, “You’re Monica! You’re so strong! You’re not depressed! You’re the girl everyone else goes to for counsel…you’re not depressed. That’s silly.” How do you open up and share when people don’t believe any of the above….and it’s VERY, VERY real and happens every day??  (Quick explanation: Lyme Disease forms lesions in the brain which can MAJORLY effect brain/cognitive function therefore manifesting in what I just wrote in this paragraph.  The lesions SLOWLY heal with treatment.)  Needless to say…after meeting with many people who didn’t understand and who said things to me that REALLY hurt (unintentionally on their part)….It would be a long time before I would trust sharing my symptoms with someone again…

 

Sooooo…..are you back to work yet?  Are you back to school yet?  Are you better yet? Why is treatment taking so long? Why aren’t you better yet? I don’t mind those questions….but it’s the tone of voice people ask.  I can tell when it’s sincere and heartfelt and truly said in a care-filled way…and I love those people!  I can also tell when it’s said in a, “Grow-up, get a life, you’re not that sick kind of way.”  And that used to hurt me….a lot.  But now, I can honestly say…it doesn’t.  I can honestly say that I truly don’t care what others think about me anymore.  It’s a place that God has over-time slowly brought me too.  It’s okay if people don’t understand what I’m going through…it’s okay if people don’t understand Lyme Disease…because Jesus does…and that’s enough.  I truly LOVE those so much who don’t understand me and make it known that they don’t in sometimes pretty mean ways…Jesus wasn’t understood by many…and still loved ALL….and because of a work in my heart that HE has done I can truly say the same.  It hasn’t been without tough, painful, hard learning lessons along the way….but HIS peace comes as you surrender to Him.  <3 <3 <3

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I’ve been told what feels like a MILLION times that I don’t look sick.  (I really don’t mind this one…and if you’ve told me that. Please don’t take offense!! It’s OKAY!!!) I just want people to understand that a person can feel absolutely miserable and not look like it at all.

 

Recently I’ve been told by SOOOOOOO many people that I’m looking REALLY good and looking A LOT healthier than I was and yes! This is true!  And I’m VERY grateful for this fact.  It means the strength of my body is rebuilding…and it’s showing! <3  I still can’t drive, I’m still in a lot of pain, some days it’s still everything I can do to get out of bed and eat and breathe (not kidding), I still get confused/can’t think straight often,  I still have a hard time communicating, I still get dizzy beyond function, I still can’t sit up for super long periods of time (on most, not all days), I still have to hold onto things to walk on some days….and yet, I’m MUCH better than I was….thank YOU, Jesus.  I’m still not well enough to work, or go to school.  I’m still not able to handle the visual stimulation from intense movies…I still have a hard time processing all the mind stimulation from being in a group with lots of people…I still react to even the smallest chemical scent/smell….I still can go weak almost instantly from things beyond my control and I still get Lyme “attacks/seizures” at the most random moments.  Yes, I know I don’t look sick….but I am.

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The object of this post is to share that how a person LOOKS on the outside

does not determine the *realness* or how *debilitating* a disease can be on the inside.

 

I’m fighting as hard and as strongly as I know how and I think most people who are sick fall into that category.  We don’t want to be sick.  We’d rather be healthy and running and traveling and working and going to school and dressing up every day and driving on our own.  All the good meaning people who said I just needed to push myself harder, talk myself out of being sick, sleep more, eat healthier, not get so stressed etc….. Trust me!  The reason I’m not over Lyme yet is not for lack of not trying. I’m tackling fighting Lyme with the gusto of a rhino running a million miles an hour. I view it as my full-time job right now…and then some. Please.  Please.  PLEASE…if you know someone that is sick….TRUST THEM.  Don’t down-play their symptoms…don’t make them feel like they’re making it up.  Encourage them to keep fighting, searching for answers and most importantly, running to God and His Word.  There is ALWAYS HOPE.  So please turn the “But you don’t look sick.” into “You don’t look sick….but I know you are and I know you don’t feel well and that’s okay. I love you anyways and I’m here for you.”  That line coming from you could just honestly make the month of any sick person that you are friends with. <3  <3 <3  We try hard to act and look normal…because, well….we WANT to be “normal”…but just because we’re working SUPER hard at “acting” normal…doesn’t mean we feel normal. 

 

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I want to end by saying THANK YOU to my friends who have stuck by my side….THANK YOU to my family who encourages me to not give up…THANK YOU to all of you who make this fight against Lyme possible with your generous donation gifts and prayers and THANK YOU for taking the time to understand this hard-to-comprehend-hard-to-explain disease.  And THANK YOU to all of you who made me feel like I WASN’T making this up in my head years ago before I was diagnosed. <3  You truly gave me the hope to keep pressing on even when so many roads I took made me feel like giving up altogether when they kept dead-ending on me.

I know this was long….thank you for reading.  Thank you to those of you who aren’t sick who want to understand what we go through.  And to those of you who are sick, you’re one day closer to FULL HEALING, friend. <3

 

Keep Fighting. Keep Smiling. Keep Hoping. Keep Trusting. Keep Believing and NEVER stop Praying. <3

Love Always,

Monica