How am I really doing overall? praises and prayer requests

I feel like I haven't been giving proper overall updates. So, it's a weird spot for me right now with many different angles but I will try to explain the best I can.

Let's start on the miracles. My body is re-conditioning itself which means it is beginning to compensate for itself when I change posture. My blood pressure will still drop but usually not to where I pass out. It's a rarity now that a pass out occurs! Miracle! On that compensation thing my heart rate is still unstable and all over the map. Normal at times, other times it's really high at like 140-150 which does cause it's own set of issues. I will explain in a second but we are focusing on the good currently. I have even been able to drive again! HUGE MIRACLES. Healing is actually happening after 7 years!

now onto the fact of healing not healed. My heart rate issue I mentioned can wreak a lot of havoc and is so 100% unpredictable. Minute by minute. That havoc is my biggest struggle physically, mentally, and spiritually. Physically it gives me migraines that are so so hard to get under control. I'm going on week 3 of one straight where with powerful medications my pain levels go up and down but it's always lurking. It takes it's toll and is debilitating at times. It also creates dizzy spells which are fun. I just get overwhelmed and discouraged SO FAST.

Mentally, This may be hard to wrap your brain around. Believe me I am absolutely thankful for God's mercy getting me to where I am now but as weird as it sounds healing is very hard.  I have adjusted over 7 years to accept my syndrome and learned to live with it. Knowing that there isn't a cure and as doctor's say I am at a higher risk for "relapsing" due to the severity of the situation sticks in the back of my mind trying to steal my joy.  Let's be honest here being a normal person is terrifying to me. I don't know how anymore and I am living in limbo land unsure of how much my body can actually do. (remember: healING not healED) Can I even manage a job with my debilitating days thrown in? Can I return to working in healthcare which is all I have EVER wanted to do and love? Is my shakiness of unknown origin going to prevent me from drawing blood or starting IV's? Can I do any job and still have my port and work out making sure I can still do infusions? The list of my questions could carry on forever. So much stuff that I have a tendency to overwhelm really quickly forgetting that the power of Jesus reigns over all of this. 

 Yes, God is changing my life but in my sin I struggle with where the line is between such thankfulness and that not being enough because I am not healed where I want to be. Why do I doubt that God has this and I don't need it? Why do I doubt Him and perfect his plan for me when He has pulled me through so very much before? it's not like He can't do it again. Why do I question and worry about anything at all when I know that God has promises me a hope and a future?

Jeremiah 29:11 11For 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.

I heard this song and couldn't help but reflect on my unbelief. Lord help me with my lack of faith and let go and put everything where it belongs- in Jesus hands because He has already given me everything I need and it's enough. It's enough.

Lonely

 I am going to be vulnerable and share with you what I am struggling with as of late and God's response to me. I had a day last week where I was just feeling so alone. It was one of those ugly breakdowns where you just loose it all. It was triggered by me seeing those around me moving on in life, doing things and having life milestones (marriage, family, jobs, babies)  which I am truly happy for everyone but my heart takes a beating because I feel like I sit here stagnant with huge hurdles that most people never even think about in life but are the reality of my life on a daily basis.

This disease took so much from me and I am now learning new things it is taking away that I never would have thought about before. A lot of grief. On that day last week I reached a despair level because this is never what I thought my life would ever look like. My self-esteem is not being seen through the right lens. My non reality lens sees "who would ever want to date or marry all this" I am so aware that I have an identity crisis situation going on and what I have to fight with and the restrictions I have are not what defines me but my mind and  my heart aren't matching up.

Anyway, the reality of where I am at in life was really getting to me deeply that night. Grief and loss seemed to catch up with me. I went and tearfully talked to my dad because I needed encouragement right then. We talked about a lot of things but the one that is really sticking with me is that I want to be where God wants me to be more than wanting the things that everyone else has and I dream of.  I don't understand His plan nor do I particularly like it but if this is where I should be I need to surrender my earthly desires and focus on the ones that actually matter. suffering with Jesus is better than any hope or dream I have for my life. The thinking takes work to divert my old thought process too and it's HARD but I have experienced what happens when you go against God and it doesn't end well. 

If I want to live for Jesus I have to put my earthly desires  in His hands.  I don't know much about my future purpose for God but my heart and my mind have to be empty in order for God to fill it up so that is what I am working on, the things of this world make that hard but my favorite verse gives me a sense of peace as I work through surrendering.

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.

Hope and a future.

As far as the song goes I heard it the day after I had my mental breakdown and it is so perfect. I am never actually alone and He is in this fire standing next to me with all His power.

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.