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. 

struggling with everything

Guys, I will be honest. I have not written in awhile because  I am struggling. I don't really show it but inside it's a war zone. I am overwhelmed by every little thing these days.

As far as my health is concerned, it's complex:

first of all, My port was not working right so I went to a dye study at barnes which turned into a 3 hour very difficult surgery and I was told if I ever need another one it will be an invasive surgery with one implanted on my hip. Lovely. I then got a major allergic reaction from something used on my skin in surgery causing hives galore and a trip to get it looked at for possible infection but it ended up being "just" a raging allergic reaction to who knows what.

I think the last time I wrote something the word "remission" was being discussed. Well, I have increased near pass out spells to multiple times per day. My home health nurse said she has noticed a rather large decline as well. My endurance has greatly diminished and I struggle sometimes to do absolutely anything. I was taking a shower a  weeksish ago and I felt super faint, I barely made it out of the shower and to the floor before passing out. A decline is not what we want but it's what I got.

To add to that I have severe migraines caused by the dysautonomia. My mom called my doctor for me last week because I was in too much pain to call myself. They made me an appointment for October 9th with my neurologist and said to go ahead and go to the urgent care and if there are any issues they can call him. This is the doctor that has stuck with me and fought for me from the beginning so I thought I was covered. Well, the urgent care doctor refused to give me anything besides anti-nausea medications and Benadryl so I had her call my doctor. She returned and to my shock he said no to any other medications. This was a huge blow. Not only is my body betraying me but now the one doctor that I thought had my back turned on me. I was devastated and cried for the whole time we were there. Pure defeat. It is hard to even explain the feeling, I felt like he has given up on me and I had/have no where else to turn. Even going to the ER would be pointless if I don't have a doctor to back me up.  I have not felt so alone and helpless in a very long time. I know it is not hopeless because Jesus but I sure felt helpless and I still do.

I also found out I have to have a ridiculously expensive amount of work done because apparently dysautonomia also affects your teeth. (I am pretty sure there is nothing that isn't affected by dysautonomia.) but this will be done in 3 costly appointments. I oddly enough have dental PTSD from when I was a child and I have survived one of those appointments but I had a massive panic attack, freaked out and it was just bad. Now I have 2 more sessions and I am already petrified of it.

 finances are incredibly overwhelming. I seriously cannot comprehend how people live off of social security. I am beyond blessed that my dad is willing to let me take financial loans from him to avoid interest and I could not be ANY MORE thankful that I have that because I know a lot of people don't but it is daunting because healthcare, dental care and vet care are insanely expensive and incredibly overwhelming. It's just hard to be an adult and want to pay your own bills or even just help with them and you can't.

so, in conclusion please pray for me and my doctor's appointment on the 9th. I'm very nervous about it because I'm not in a mental place to deal with rejection. Also, that my symptoms will stabilize and that I will be disciplined in saving as much as possible so I can contribute to bills. I know most I simply can't pay in full but I need to be more diligent  above saving as much of my social security as possible to at least help and that it will not overwhelm me so much. Pray that my dental appointments will be smoother and that they will be able to figure out what's happening with the cat and that it won't end up costing an arm and a leg. I do have an appointment with my trauma therapist the day before the doctors appointment so Lord willing she will be able to give me guidance on that appointment specifically and basically my whole life.

HEALING IS HARD/GRACE

For those of you who actually read this you may have noticed I have not made a post in way too long. I usually have no problem being vulnerable but lately that has been a different story. Sharing and facing my improvements has actually been really hard for me. This has been my life for 5ish years, I had accepted and come to terms with it but that came with a cost and a lot of loss, shame and guilt. For those who have an illness I hope you learn from my mistakes

 I had to accept not being able to drive and sold my car. I lost my job, I lost financial independence. Chronic illness  doesn't just disable your body it disables your mindset. Leading to poor choices in that regard because I get disability but it is not a lot and I got stuck in this phase of just doing things whenever I could because I didn't think I would get better so why not enjoy what I can. Wrong. I am in NO way asking for money I am just sharing some of the struggles people with debilitating illness deal with. This has left me with so much guilt and shame because the improvements in health made now see the hole I dug for myself and jumped in. I am so blessed to have my parents help me through everything but despite the warnings I am left with no savings and with physical healing comes reality that I am getting the life back that I thought would never happen and that reality snapped me out of that bad mindset really fast. Into the realization that driving again requires money, medical bills are a thing, and adulting after loosing my mind is going to be oh so challenging.

A healthy life is now a reality and to be honest it's daunting. I don't know if I will be able to work again but if so I can't just jump back into my career field, healthcare is demanding and with continued issues I just don't know if I could do it again. It's the only thing I ever wanted and still ever want to do so I am a little lost with that one. I feel lost in general just from loosing everything and not knowing what to do with myself at this point. I had accepted my life and now I am realizing I have to start all over again. I am thankful, oh so thankful but also it's new and new can come with a lot of struggles.

BUT GRACE GUYS, GRACE. God has given me so much of it, I am getting better and although it's scary for me I know God has it under control and He has a perfect plan. He is doing miracles and giving me my life back but throughout it he gave me grace in having parents that have been able to support me and forgive me for mistakes, financial donations for treatments, rides to ER's, infusions and urgent cares, an army of prayers and support and love. Life would be unbearable without the grace God gives out in abundance every single day through the hills and the valleys and even in sin and poor choices.

John 1:16 

Out of his fullness we have all received grace in place of grace already given.

With undeserved grace and forgiveness I will get through these unknowns on the other side because I know God has a solution before I had any problems, this life journey is a marathon, not a sprint and we learn lessons as we go and I can say I'm learning a lot of them but I am also being restored to life and I have to give it back to the one who gave it to me in the first place and trust in His promises of hope and a future. It may be slow but it's happening.