UPDATE ON NEW DOCTOR

I want to thank you all for your prayers and support over the years, Chatham really is my family and you all have done so much for me and it is much appreciated! I apologize that this took me so long to post an update. I have really just been in complete awe at how God works. Sometimes in life He chooses to bless us with a glimpse of His loving sovereignty. The way my doctor situation played out leaves absolutely NO room for a “coincidence”. His hands are obviously shown all over it and God knows when we need that reminder that we are never left alone in the dark, He goes before us, with us, and after us orchestrating situations and this is definitely one of them.

A little while back my dad had gone into A-Fib at an urgent care and they said he needed to be ambulanced to the hospital. He really wanted to go to mercy but despite the doctor calling a few private ambulance services none of them were willing to go out of there district so He had no choice but to go to DePaul. When I went to see him a doctor came in and said they assigned a cardiologist for him and when she said the name I knew immediately that hey he’s my cardiologist as well and he is a great doctor. I don’t really see him because he is more for structural issues and mine and my dads were electric signal issues not structure so you need an electrophysiologist for that.

I got a text from my dad later again saying I think you know my electrophysiologist and he said Dr.Pete. The current practice my doctor is in is where Dr. Pete used to work and I saw him until he left and I was switched to the current doctor who has been great but I got insider information from my home health nurse that he was leaving. When my dad went to the hospital it was not confirmed at all. Dr.Pete was saying he didn’t really leave on good terms and the office is kind of a mess and I have to agree with him on that one but I was so established there I didn’t want to change anything. Welp, shortly there after I got an email that the current one was actually leaving. I was anxious because finding a new doctor for me for anything is a nightmare and I thought maybe just maybe Dr.Pete would be willing to see me at his practice. I called and once I told them I used to see him they were like oh he will see you and I got an appointment for that next week!

My dad had a follow up the week prior with him and he asked how I was doing and my dad said well, you can ask her yourself she has an appointment with you next week. He proceeds to say how glad he was that I did not switch over to the doctor taking over patients when my doctor leaves because he is horrible. Here is the thing doctor’s do not talk bad about eachother so he must be really bad, I would have ended up with him or on the hunt for a new doctor but I feel like I have seen every kind of specialist for this that exists in St.Louis. Either way not a good situation.

I saw Dr.Pete and overall things are okay. He did say he forgot how complex my case is haha. He did apologize that I have been tossed around to so many doctors and he wanted me to know he is not going anywhere so I can have some peace in knowing I won’t have to go on any hunts for doctors. He generally doesn’t approve of “IV therapy” but he said since I have tried to stop before and it did not end well, I am dependent on it he is okay with continuing all of my home health IV therapy orders. God is good. I had an ekg done and he said it shows a long QT interval from some of the medications I am on so we have to be careful if I get anything new but for now we will just watch it. As far as my heart rate and migraines go he is using a medicine they don’t use much these days but it is supposed to regulate my heart rate AND it is known for helping with migraines! I have to be on the lowest dose because it could cause my blood pressure to drop but prayerfully it helps. He ran some blood work because low magnesium levels could be causing or worsening some of my symptoms.

My blood test came back and I was shocked when at around 5:30pm HE CALLED ME HIMSELF to discuss my results.I am slightly anemic but we are just going to watch it because he doesn’t know why but it’s not bad enough to need treated but as he suspected in the office my magnesium levels are lower than he wants so he sent in a supplement for that but everything else looked ok and I will see him again in 6 months.

This whole novel was perfectly aligned by God and I am at peace and hopeful that these medications will help me avoid ER migraine trips. He works in mysterious ways and took a bad situation and inserted some good into it and I am so thankful. As this song says:

 Almighty Fortress You go before us

                                  Nothing can stand against

                                    The power of our God

                                    You shine in the shadow

                                       You win every battle

 

 

depression is tricky

THERE ARE 2 POSTS THIS AND THE ONE BELOW IT

As sinners we all are fighting a constant battle because satan is doing his absolute best to pull us away from God and he tends to be so successful at it because of our sin nature. The last couple of months have been extremely hard for me with my anxiety and depression. I think it has probably been one of the worst spells I have had in a long time. Those who don’t have depression tend to have a hard time understanding what it feels like. For every person it is different but I will try to explain how I have felt for the last couple of months.

Depression for me is like looking through a lens where you cannot see anything. Seriously anything Good about being alive. It takes all motivation and energy away from you. It steals all your joy, even the things you love the absolute most you start to not even CARE about them anymore. Getting out of bed just to go to the bathroom requires a hard core pep talk so does the simplest action of just picking up my phone in general. Communicating with people in any form feels impossible. I typically don’t answer calls, texts, emails or facebook and just pull away as a coping mechanism.

I was in that mood for about the last 2 months and I had my anxiety medication adjusted (This  cycle started with weeks of never ending all day every day panic for no reason but not really depression) but when it switched to depression I was trying to handle it but it consumed me and went deeper than I knew how to handle. I was laying in bed so lost and made the decision I was going to try to get it under control but increasing my depression medicine and planned to call my psychiatrist in the morning but I was so low laying there staring at the ceiling and I had to have some sense of relief in that moment.

 so I picked up my bible and went to the day of the study I am on and read John 14-16 and the fact that Jesus prayed for His people that God would protect them by the power of His name from the evil one and that they would have the full measure of Jesus’s joy within them was so comforting. I had lost that joy somewhere but even though I felt alone Jesus was with me ready to provide the full measure of His joy and sure enough I woke up the next day happy. I had not felt that joy in months, what I needed was not medication but Jesus. Switching my focus that night from being lost in my inward focused self to God through His word gave me that blessing of joy and I could not explain how thankful I am for Jesus to lift that from me. Even when we stray He can come in and rescue you right when you are at your limit. He is the promise keeper He promises not to leave us and even when we get lost He is right there waiting for us to come back.

Disclaimer: I am in no way against depression medications I just meant I was searching in the wrong place for help I needed to come back to Jesus.

some important prayer requests

 Life is a little chaotic sometimes but God is good

 

1.      My cardiologist is named Dr. Glascock. Awhile back I was with one of their other doctors Dr.Pete but he left so I got switched to Dr. Glascock who has helped me tremendously. I have seen about 15 different doctors and It is extremely hard to get a doctor to agree with my treatment regimen because everyone has opinions and there is no cure so no protocol, you are at the mercy of opinions. Well, my home health nurse told me she heard a rumor that Dr.Glascock is leaving the practice and she is pretty confident it is true because of the below.

 

2.      I got a letter stating that SSM has decided they only want their group of cardiologists to see patients and have basically shut off connection with my doctor. They said you can tell them who your doctor is but it doesn’t matter because SSM WILL not even consult with my doctor. If you have an emergency they will not contact the doctor at all. So SLHV (my cardiologist) practice is in the process of suing SSM for this because those doctors don’t know your history, it will just be last minute decisions they choose to make. For me I have 7 years of important history and I can guarantee the SSM cardiologist is going to sit and read 7 years of history and my overall care will be affected by this. My doctor cannot keep track of my health like this. Which would make sense why he would leave. I would then be left to find another doctor which is a nightmare.

 

3.      I would have to find one fast because of the IV fluid situation.  Of course God could choose not to do this but an interesting thing happened that is giving me some peace. My dad got assigned an electrophysiologist and he text me and said I think you know who it is. Well, it happens to be Dr.Pete my original doctor before he left and I was passed onto Dr. Glascock. Dr. Pete has an office at depaul so I might be able to get in with him. I’m taking my time and waiting on the Lord for direction and peace in the unknown of my treatment.

 

4.      I had some dental work done a few weeks ago and I could feel a spot that just seemed irritated so I ignored it but the other day within 48 hours it was big red and swollen so I took a picture and emailed it to the dentist and he said he doesn’t like how it looks and could tell even what it was so I had an appointment the next day. He thought it was going to be a blocked salivary gland but it turns of you also have a mucous (that shouldn’t even be a word just saying) gland and mine is blocked by a cyst looking thing. So on June 9^th I will have surgery to remove it and then he will look at it with a microscope and depending on what is seen they would send it to be biopsied.

 

5.      My migraines are out of control at the moment which happens when my heart rate goes too high and they have become severe and frequent all of a sudden. I think it is because my blood pressure is stable so I am able to be up moving around doing things which sends my heart rate up and down more than it had been when I didn’t do stuff. It’s just a mess. I will be making an appointment with the doctor to discuss what, if anything can be done.

 

 

6.      If you didn’t read the other post I put up tonight you might want to because God knew things were going to go down like this and he pulled me out of my pit just in time to have peace

 

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.

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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.