change of heart

This song hit me today. I struggle as I said before with finding love and wanting a family. Well, this song triggered a memory that reminded me how much love I already have in Jesus. He loves me so much that he pursues me even in my darkest times. “You knew I couldn’t make the change so you became the change in me” and now I live to tell the story of a god who rescues. There is no denying it my life story proves that I am already loved by someone far greater than I could ever find on this earth and a clear purpose we all have on this earth. To allow Jesus to change us especially in those times when we can’t make the change (which I am pretty sure is always)

Back in the day when I was struggling so much with health stuff that I ended up in the psych ward because I didn’t want to keep going, defeat had taken over. I was cutting and it was just a bad situation that landed me in the pediatric psych ward. If you have heard my testimony you might recall the horror of my first group therapy session where we had to share why we were there. This is where God’s love started chasing me. Listening to the stories that were seriously horror stories and absolutely heartbreaking, I stumbled through some words in shock when it was my turn I was so embarrassed. Talk about shame. It flooded me and  I couldn’t escape it. I had thrown God out the window awhile before this so I had no where to turn but internally and sink further into depression.

This is where God hit the fast track. I wasn’t moving but man was His love. I had a nurse who immediately called me back out to sit at a table in the corner with him to talk. He asked why I was here and again I stumbled through fragmented sentences, but he stopped me. “You know God, don’t you?”. I quietly said yes, and he proceeds to ask me again why I was there. When I didn’t answer he told me to look around at all of these people with shattered and hopeless lives. He said he knew I was different. He said “You have something that none of them have, hope in Jesus and yet here we are. I ask again why you are here but this time don’t answer me.” He reached over and grabbed a bible and gave me passages to look up and sent me to my room to reflect. Letting God back into my life and trusting Him again took effort but I had learned that I really cannot do this myself. I had to be broken to the core in order to be restored. No matter where you run you are His and He will target you, love you, and fix your broken pieces if you let Him. He waits for your return with open arms.

Love really does move first. It wasn’t my love but the all knowing, all forgiving, all loving, all merciful, and all faithful love that targeted me and was not about to miss. Anyway, I was just reminded today how real God is and when He wants your heart, He is going to get it. It might take cutting, a psych ward, and real life horror stories to get there but He doesn’t give up on his people. I am still in awe of how He chose to get ahold of me. It is mind blowing but you can’t put Jesus and His love in a box. Even if I don’t get the desires of my heart that I want I already have been given the biggest desire, Jesus who saved me, and loves me more than any earthly person could. Is it still hard? absolutely but reminders like these help re-focus your thoughts off yourself and into the arms of God

vulnerable issues and update

 Sorry for dropping off the face of the earth. I just haven't had words. A couple of months ago I saw a specialist in mast cell activation disorder and he isn't convinced I actually have it but pending testing he put me on 4 high dose anti histamines and wanted some specific tests done when I am in a flare up. Well God is good and ever since I started  the medications  I haven't had a bad enough attack to get the testing. I still have them but they are mild or don't last long.

Over the last few months I have been able to drive a little bit and felt well enough to function a little. My stamina is low but that goes with the territory. My home health nurse has even noticed that my vital signs are improving so we casually talked about remission and maybe slowly weaning off medications since I'm more stable, I let myself think too much on that one.

A few days ago I had a follow with my heart doctor and I was telling my improvements and mentioned weaning stuff and all that and it was a strict NO because we are nowhere near doing that and some other discouraging things that I won't say on here. He concluded with the fact that even though the specialist doesn't think it is mast cell activation, there has to be a link somewhere somehow because I started feeling better after going on so many anti histamines, do we know the link? nope of course not ha.. but he said that can give me some hope that we might be able to help me someday.

Here is the thing, going into this appointment I for the most part suspected that it would go that direction but there is always that piece of you that gets overly hopeful that feeling better means it's over. Except that it’s not. The doctor just said it is great that you are feeling better right now and to enjoy every bit of it and he will see me in 6 months. I still am not entirely sure how I feel about it or my life in general for that matter.

This might be the most vulnerable post I have ever posted but I feel like it’s a hush hush thing when it shouldn’t. I think the root comes down to shame and self-esteem.

Growing up there were only 2 things I ever wanted. One was to work in the medical field but more so to be a wife and a mom. The Lord blessed me with 3 years working in the medical field which I am thankful for but there is still a desire of my heart that hasn’t happened. Love.

Let’s just say there has to be attraction somewhere on BOTH sides in order for dating to occur. That is something that has never happened for me (except for a single sided attraction on a couple dates that ended in creepy eHarmony people. Yikes)…but the reality is that cuts into one’s self-esteem.

At least for me it is a source of shame and a grocery list of what I think the reasons are for never having male “attention” for lack of another word. This has been a source of major increasing heartache since high school.

Now I have this disease to be the header of my grocery list. The biggest deterrent in my life. I just turned 29 and I never would have imagined this is what my life would be like right now and with each birthday the heartache just grows. My feelings of loneliness, self esteem issues, depression and grief have been at the forefront to where I feel like I have to guard my heart. Seeing life milestones of others such as watching friends get married and having kids just turns into grief. ( insert: sorry if I didn’t attend your wedding here) just watching the deepest desires of my heart happen around me is just hard because I am genuinely happy for them but heartache comes along for the ride.

I can’t say I blame someone for not wanting to get into a relationship with this unpredictable disease and it’s baggage, I would probably do the same thing to be fair. I know I don’t need any of these desires to have a fulfilling life because I know in the end it all come down to God. I know He is all I need and He may or may not grant my heart desire, if he doesn’t right now I would be pretty devastated but ultimately I believe fully that whatever His plan for my life may be is where I want to be. My ultimate longing is to follow God’s plan, whatever that may be, however hard that may be it is still the best place to be. Lord knows He might have to remind me of that statement 50,000 times but it’s true.

Health update 360

 

In typical fashion, in the blink of an eye things can change. I had called my hematologist to see if I could get an appointment to go over everything that has been happening because all correspondence has been via messages on the patient portal between me, the doctor and the physician assistant; The physician assistant is working remotely and the communication just isn’t there. When I called I found out that I have to have my blood tests done at big barnes on Friday because the genetic testing has a special form that has to be sent out with it that the physician has to sign. That is happening tomorrow at 1:30. Unfortunately, it takes 2 weeks to get the test results back and I cannot get any appointments with her until September 4^th I get a phone call appointment to discuss results.

I have had to be off of my MCAS medications for days now and I feel pretty horrible right about now all of my symptoms are flared and my blood pressure was all the way down to 70/40 when my home health nurse came this morning. I am also mildly anemic and it is slowly getting worse so the hope is this new testing will reveal something. All of these tests are being done by the blood cancer specialist because the cancerous form of MCAS has not been ruled out and we have to figure out the anemia situation.

However, As far as the next step for the treatment of non-cancerous MCAS goes I have been trying for about a month to get a referral to an allergist and immunologist at SLU who would address this as a whole but they require a referral, preferably from the physician who first suspected MCAS and found the symptoms. That would be the electrophysiologist. Welp, they refuse to do it because only primary care doctors do referrals, in general referrals are due to insurance thus only primary care does for some reason but this is simply a doctor to doctor referral where they want a note of why I need to see the allergist and my medical records. The allergist said it can come from ANY physician. I have spoken with about 10 people from the electrophysiologist and some say they will pull it together and send it while others say that it can only be done through my primary care. Nobody is listening to me or actually doing anything so I will be calling the director of the entire company to figure out what the deal is.

In the meantime I called my primary care to see if maybe they would be willing to do the referral because I feel like after a month of trying to get the electrophysiologist to do it, it’s just not going to be done through them. I explained everything and was put on a 20 minute hold where they came back and said because I haven’t seen the primary care doctor for so long I am no longer considered a patient but they pulled a string to help me out and convinced a physician assistant to see me on September 9 but I have to make that appointment and then from there we will have to figure out what to do because like I said I now fall into the “new patient” category BUT my physician is no longer accepting new patients so, I could be without a primary care at that point.

I would be lying if I said I wasn’t really struggling right now. I’m feeling worse than I show since being off the medication but hopefully when I resume it after the blood is taken tomorrow I will turn a corner. It’s hard not to feel like it’s one thing after another and just when things look up, I get knocked back down. I am on hold Still waiting to see if my bone marrow is “ok” or not. I am on hold in with the MCAS concrete diagnosis/treatment for who knows how long because I have to Lord willing get this referral sent on September 9^th and then with specialists it can take even months to actually get into see them as well.

So, I wait. I can’t help but grieve what I dreamed my life would be like. It’s lonely, I am not healthy enough to do work or go to school, my days are spent doing nothing by myself  because people have jobs and family’s. It feels like I am existing, not really living. All that is keeping me fighting back is I know what is true, God has a plan, I may not like it but it’s there and no matter how hard it is to see through the fog, I know it is for my good and His glory and that is enough. I may not feel it but I know it. So you just keep fighting because it is your only option.

Next steps. Not fun but carry your faith.

I found out what my next steps are. I am left with a weird feeling, I prayed so hard to get the ball rolling but now that it is, everything now feels too real, I don’t know, it’s weird. I was able to finally communicate with my hematologist and she scheduled me for a ton of blood work and a bone marrow biopsy like my heart doctor wanted. It is scheduled for Wednesday afternoon. After that I have to see an allergy doctor or auto immune doctor, they weren’t sure which yet.  I spoke with someone on fb that has MCAS and she sees a doctor at SLU who actually knows what he is doing that I will most likely see him for treatment after these tests are completed to manage it. I just need prayers for peace, comfort, and faith to walk down another path I didn't see coming. I didn't see it coming but God did and I am called to take my faith and just keep walking and fighting so that is what I will try to do.

**If slightly graphic details bother you run away now**

I am used to needles and surgeries/procedures but I have to admit I am so nervous about this bone marrow test on Wednesday. This test is done where you lay on your stomach then they numb through the layers of skin and muscle all the way down to your hip bone. They need to extract the cells that are in the middle of the bone to test them. They make a small incision and insert this odd contraption down until it hits the top of your hip bone and no easy way to say it, they drill through your hip bone until they are in the middle space that contains cells and then they suck a couple of syringes of them out of the middle of that hip bone, remove the needle, and it’s done.

Here is the thing. You are awake. They do give morphine and Ativan to try to help the pain that they say really helps people but I have this issue where my body doesn’t always respond to medications so that Ativan and morphine combo only works like half of the time with me but please pray hard with me that this will be one of the times the medications DO WORK because this is notorious for being a painful procedure as I am confident you can see why. This is a non graphic visual for you that may help with comprehension.

Test results got a little crazy!

DISCLAIMER EDIT TO CLARIFY: I DO STILL HAVE POTS BUT NOW I HAVE IT IN ADDITION TO THIS.



Well, I got my test results and saw my doctor for a review the other day. I have been struggling with some weird symptoms that do not go with POTS and it was kind of a mystery for awhile. I have been given the blessing of a great doctor, when I saw Him today he said that when I started telling him about my new symptoms he caught on that it's not POTS and after some research he thought he found the cause thus these tests I have been speaking of for awhile now.

I am tired of all of this and easily defeated these days and when the test results came back mostly normal, I thought I was going to be thrust back into no diagnosis= no help land and it was a pretty lost feeling that I have felt countless times. Trusting God's plan for my life is so hard because I just don't understand it. It's pitiful because I cannot count the times he has swooped in and saved me. He is so faithful and I loose sight of that in the chaos that my life is but once again in this situation He proved that faithfulness for the billionth time. He is with me even when I don't trust Him because He promises it to me. It's still hard but He provides hope in the hard. I am trying to cling so hard to it. It's all I have.

When I spoke with the doctor today he said that even though my tests were mostly normal and do not show the disease it is because it is so hard to catch as you may remember me saying in previous posts but he is completely confident I have it and I got my "official "clinical" based diagnosis of mast cell activation syndrome.. (MCAS) It's not a good diagnosis but to be honest I felt so relieved and happy to hear that I have it because my suffering was validated. I have known I didn't just have POTS for so  long but nobody would listen to me. Thank you Jesus! (Note to self: JUST TRUST He has already worked this out just like EVERY OTHER TIME). . Once again, instead of worrying for days over everything just put my life  in the hands of God where it should be. I can't change this but I know who can.

What we do now with this diagnosis is so unknown and a bit scary but I have fought to get this far with Jesus by my side, I can fight again. It is such a hard diagnosis to explain but basically when you have an allergic reaction your body releases these things called Mast Cells to fight the allergen but in my case there isn't really an allergen they just release at random and then bind together and build up and wreak havoc. They can build up anywhere.

Here is the thing: he has a suspicion that these cells are congregating inside of my bone marrow. He said it works like cancer and will slowly destroy these cells in my marrow. He referred me to my hematologist because I need a bone marrow biopsy to test for that. If they don't show up there then they are somewhere else and I would probably be sent to an allergist or an autoimmune specialist depending on what the hematologist decides. If they do find it in my marrow then  things get bad and it would mean chemotherapy and all that really scary stuff nobody wants to hear.

In the meantime we are starting 3 medications to hopefully calm it down until next steps are able to happen. I did call my hematologist and of course in my typical fashion she is not exactly comfortable dealing with this but is convinced that Wash U has to have a mast cell specialist so she is going to try to track some stuff down and then she will get back to me on a game plan.

Phew, now in regards to my port that I had tested yesterday they didn't find much but the doctor said that he thinks what is happening is that the line is just a little too long and when I pull back for blood it is basically sucking a small portion of the vessel wall into the tip of the line therefore I can't pull anything back. However I can put stuff in because when I push it in it  pushes that wall away and works. The only solution is to replace it BUT because of my unknown vascular disorder we literally have only one vessel that has not collapsed and that is the current line and it will be a very complex surgery at big barnes, they would put me under general anesthesia and what they would try to do is put an entirely different type of line in. It is called a Hickman line and is so much easier to manage especially with my issues. This also though has a high risk of failing because they would have to slide it down the current path and there is a good chance that vessel won't hold up to being messed with and it too will collapse and then I have nothing. I asked him what happens then and he changed the subject and danced around the question with no straight answer and I believe that is because there isn't one. Given all that we are not touching the current one unless it stops flushing anything in. He said he didn't think it would work but he said it was worth a try to put clot busting medications in it.

THERE IS A PRAISE IN HERE BECAUSE THE CLOT BUSTER WORKED AND THE PORT IS FUNCTIONING PERFECTLY FOR NOW. IT WAS TRULY THE BIGGEST MIRACLE THAT I WAS NOT EXPECTING BUT ONCE AGAIN I DON'T GIVE GOD ENOUGH CREDIT BECAUSE HE IS THE GOD OF THE IMPOSSIBLE. HE REMINDED ME AND GAVE ME ANOTHER LESSON IN TRUST AND I AM  CERTAIN IT WON'T BE THE LAST TIME HIS MERCY AND GRACE WILL POP THROUGH IN THESE MOMENTS THAT TRY TO BREAK ME.

LIFE IS HARD BUT GOD IS GOOD. 

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.

Please pray for me on this journey, it's tough and defeating and I am weary. Thankful but weary.

Hold Fast-big fears

Welcome to my world of what else can go wrong and you only have one choice-- surrender control in order to hold fast.

So, if you have been following my recent escapades you will see that life isn't exactly going like I want it to. It's a whirlwind of one thing after another and another and another. This is no exception. For the last week or so one of my biggest fears is going down- port problems. There are so many things that this means but I will try to lay out for you the main things.

So what we are dealing with here is the my port is having issues with "blood return". The good thing is that at this point I can still put fluids and medications into it but it doesn't want to let blood come back up through it like it should, I can get it on an intermittent basis. I have also noticed it has been a little hard to flush meaning when I try to put things through it I have to push harder on the syringe than I should have to.

That's the issue, the cause is unknown, it could be a clot somewhere in the line that just needs a special medication to break it up or it could be that tissue is growing over the bottom of the line slowly closing it off and eventually the port will cease to function in any capacity. I am praying for the first option but I am leaning towards it being the second thing based on how it is acting. The only way to know for sure is having a dye study done at Barnes where they put dye in it and on the screen instantly watch where it goes.

If it is the tissue growing the only option is to replace it, here lies my biggest problem. My vascular system is all kinds of a mess so I have had 5 ports now, switching between each side of my chest because my veins like to collapse and become unusable. Due to this they have to find other ways to thread the catheter to my heart and so far have managed to make it work with great difficulty but at this point after they put in the last one that took 3 hours, I was told they no longer can put new ones in because everything is collapsed. I overheard a doctor during my last placement mentioning something about putting it in my hip or leg but after speaking to a couple medical people they have never heard of that being done like that so, I really don't know if that is even possible.

I am waiting to hear back from one of my doctors on if I can try the clot busting medicine from home first before going through the Barnes ordeal. I am going to be honest here guys, I am scared. I might be "strong" and don't usually worry about it but this situation is different because there is a distinct possibility that I might not be able to have a port at all. Which would mean no more fluids and despite the fact that my blood pressures had been stabilizing my nurse said it's starting to decline more than she's seen in awhile and without the fluids she thinks things will only get worse. Also, without the port that medication I have done recently will no longer be possible.

Fear. I am scared to have to go to barnes because as of now nobody could come with me, I would be dropped off at the front, I have to call and see how it works when you are in a wheelchair, I don't know if they have transport people that will take me where I need to go or how that goes down but yeah, dropped off and picked up at the front whenever everything is done. I will not be able to have anybody be with me, it makes it worse that I am more anxious about this dye study than I have ever been and not having anybody with me when I get "the news" about the port is hard. Just going through all of it alone is scary

I am trying to hold fast and just trust God. I know He's got this all figured out and He will be with me even if nobody else can be, it's so hard but I don't have control over anything but He does and He is faithful so I just have to cling to these things I know and take comfort in it.

Hebrews 10:23 

^{let us hold fast the confession of our hope without wavering, for He who promised is faithful} 

test results

so results. first of all let me explain what they are testing for. There is a syndrome that is fairly common with POTS and it is called MCAS--mast cell activation syndrome. When you have an allergic reaction your body releases mast cells to help you recover but with MCAS the body releases too many mast cells in a response kind of to my body attacking itself. These Mast cells build up and can make you sick. 

for more information go here: https://www.aaaai.org/conditions-and-treatments/related-conditions/mcas

The symptoms closely follow that of POTS but I have been dealing with  a few that don't match POTS but do match MCAS. They are shown in the pictures here: one is circulation, flushing, bone pain and a thing where if I touch my skin with my finger it turns into welts:

My symptoms match the MCAS so well. When I got the news that the blood test was normal and the urine is pending. I felt and still do feel discouraged  because there are treatments for MCAS and the idea of a treatment vs. symptom management was so hopeful to me. 

Here is where I stand right now. It takes peoples years to get diagnosed with this because it is just that hard to catch. My doctor not having experience in this does concern me that he might look at the numbers and call it a day and say I don't have it. The other options are further investigations, or what I would like is a lot of people just start treatment for it assuming it is there and considering I was on a couple of medicines that were helping until I had to go off of them for accurate tests leads me to believe that just treating it like it's confirmed might be the way to go. I just don't know yet. I am very anxious and trying my best to lay it in God's hands but the raw feelings are still there.

I have spent much of my life in a state of doctor's don't know and as I find myself there again it is definitely a struggle but I know that God knows and has a plan and I just need to trust it. Please pray for me in regards to that because right now a lot of feelings are getting in the way, I am pretty defeated and just overall trying to faithfully suffer well knowing that this is for His glory not my comfort and that is more important in the big skeam of things. I just have to remember that. 

If you didn't notice music really helps me keep the right perspective and this song is no exception.

"

I'm gonna see a victory
For the battle belongs to You, Lord

Gonna worship my way through this battle
Gonna worship my way through, hey

You take what the enemy meant for evil
And You turn it for good"

God will use my battle for good even if I don't like it. God knows only how to triumph and I will triumph with Him. He will never fail me. What a day it will be when we are restored and the darkness falls, never to prevail and the Lord takes his forever victory!

Depression

I have not written in so long time because I have not had words. The reality is I have been struggling a lot and only a select grouping of people know about it.



My physical health as a whole has had some pretty big improvements, I rarely need my wheelchair anymore, I walk and basically if I go down, I go down. It doesn’t happen too much anymore but often enough that I have to be very aware of my body because it still doesn’t know entirely what to do when I move. Overall, though, they are stabilizing. I do have of course some other things going on that still make daily life a big challenge.


You would think that I would be overjoyed but in honesty, being healthy scares me. It sounds crazy and that’s probably because I have been sick for 6 years. So much about the world has changed in 6 years and I do not know how to process and navigate it as an adult. I know how to be sick but being a functional adult is like being 18 all over again and starting life over. I have to learn again how to drive. I have to build up enough stamina to function. I don’t know if I will be able to work in the medical field again so a job is up in the air. It’s just so daunting.


Several months ago I decided to fight back. I knew that my only chance of hope is found in Jesus so I started reading my bible again. I started pulling myself up with the help of Jesus and driving in spirts. I started going back to church again without my wheelchair. I was really trying for once.



When  this virus hit the world  I crumbled.

I felt so lost, so alone, with no motivation or strength to even talk to people so self-isolation set in even before quarantine. I was struggling with the fact that My metabolism suddenly jumped off the face of the earth and even though I still don’t eat much I have gained 20ish pounds and I didn’t really want to be seen. The quarantine has affected me in multiple ways, one: it gave me freedom to isolate with no push back from anyone. Two: The things that were providing motivation to get up and do anything are temporarily gone. I miss family, I miss the times when I could get out and do something to lift my spirits. I know I am not the only one feeling this way, I would say most of us probably are. I think we can all agree it is a struggle.


I am still reading my bible and praying because it is the only hope I got right now. One of my prayers was direction on what my next step is and the other day I got my answer. Do everything I don’t want to do. For example:

·      Get out of bed in the morning—I would rather not

·      Stop sleeping days away—what else am I supposed to do and when you are asleep you don’t have to face depression or other trials

·      Get moving whether it’s a treadmill walk or an outside walk—complete LAST thing I want to do, I would honestly rather wallow in self pity

·      Spend time outside of my room and just be in a different room to break up the monotony of my days—again isolation, don’t want to.

There are plenty more but you get the gist! I heard this song the other day and it really hit home.


I have to keep fighting. It is not going to be easy but I know that through Jesus I can do this. My whole life is riddled with hard things and near death experiences and if I can look back now at those times and see that my pain had a purpose and His plan was perfect all along back then even though nobody could see it at the time why would this be any different. It isn’t. This is the truth I need to be standing on.