I just came across these photos. It's hard living with a disease that has no cure because it is a rollercoaster all the time. So many different emotions going. These times were hard. I couldn't keep food down so formula and a feeding tube had to happen. Being attached to this pole with IV fluids running through my body to try to keep me from passing out most of my days. Hours spent in infusion centers. Loosing the simple ability to stand up without passing out and so much more. hard times.
Right now, EEG to check for seizure activity, MRI's to check for spinal fluid leaks causing migraines, seeing a new doctor for mast cell activation disease because my body likes to attack itself, Tilt table with autonomic studies to really measure where my POTS condition stands. All still hard and overwhelming.
My point? Life is hard. But God is good. Life is always going to have hard moments with a variation in severity and all you can do is be thankful that you aren't where you were and remember that God is already where you are going. Not always easy to do, I struggle with it but in the end He is faithful and these photos prove it.
I am not even sure why I am awake right now but I have been laying here reflecting on my life and the overwhelming complexity of it. Out of left field a wave of grief just washed over me. There is a phrase that is said all the time, especially by myself and I feel like it has been so overused that it's meaning and significance has been lost. "taking life one day at a time." It is hard to be thankful for what you have today and today ONLY when grief and memories from the past and longings for the future are real and raw. These interferences which in the end comes down to complete trust and peace in God's plan cannot be simply brushed under the rug and disappear. They have deep embedded roots that take work to dig up, process, and break down.
The raw grief of making through a lot of health issues in High School, by the grace of God being freed from them and moving on to then have things come crashing down again goes deeper than I tend to ever say. I made a complete recovery, got my GED, went to college, had a job, moved out all those "milestones" I took my renewed health for granted convinced that all the medical issues were behind me. It never crossed my mind that things could go wrong again. Well, here we are. I missed 2 years of life in high school battling my own body and now in December it will be 8 years since this fight of POTS began.
8 years since what felt like in one day I lost everything I had worked so hard for just came crashing down, shattering into pieces. Of course nobody knows what tomorrow holds but my future is a battle I fight daily. When you are young you try to imagine what your life will look like. You develop hopes and dreams. I never would have imagined that I would be 29 and my biggest dream of a family of my own would be no where close (from my perspective) to happening, if at all. It may not be a part of His plan for me and although my mind knows that what I truly want is what God wants for me not what I want I want for myself, my heart is not in that place. All I can do in this moment is work on trusting and seeking the contentment and peace that comes from the one who made my life and remember that life is hard but God is always good.
Give me faith to believe You are on my side Open my eyes to see You working in my life Let the past remind me You never fail--danny gokey
Do you ever feel a little trampled by trials? I do. Sometimes it feels like I am trying to live while waiting for the next issue to show itself. I am very prone to depression when the things are piling up but God has really been showing me His goodness and mercy. He knows right when I need an obvious "God thing" as we say right in front of me. I know he is constantly at work even when I can't see it but lately He has been very generous with the obvious things. I have been incredibly blessed by these glimpses and I fully believe they are why I am not depressed right now. God's arms of protection are not letting satan grab hold. Yes, I have my moments of discouragement but if I keep myself God focused satan looses.
For example: with this spider bite I had, I didn't notice it until 8pm where urgent cares are closed and I went back and forth in my head on whether to find a 24 hour one but God was just prompting me to go. I found one 24 hour one about 20 minutes away so I gathered my things and I went to leave and my dad was like wow you are really going to drive all the way out there and I said something just doesn't feel right. I got in fairly quickly and it is almost unheard of for an actual surgeon to work at an urgent care but there was. God prompted and led me there, the doctor took one look at it and saw fang marks and knew it was a brown recluse bite right off the bat. He told me that I am so "lucky" I came in when I did because if I would have waited until morning I would have a giant hole in my arm. Again, God's prompting. In my case it was extra concerning because I'm immunocompromised. He had to make an incision and flush out the spot and remove some fat cells that had already died off and put me on really strong antibiotics. It is healing well now. God led me to go in the first place and then provided an actual surgeon who really knew what he was talking about to treat me. By the way, it is mostly healed, I had to go back to the urgent care at one point because it was spreading from being infected but my course of antibiotics just had to take a little longer to work and they did.
Another thing was I was scrolling through a P.O.T.S forum and I heard that mercy now has a new headache clinic and they have a couple of neurologists that specialize in P.O.T.S migraines! For about a year I have had either a headache or migraine 24/7. It never leaves. ever. I was able to get a referral and was accepted as a patient, I am so excited that they can most likely help me! I was also able to get in so soon, my appointment is this Friday! God is so good to reveal this opening to me, I didn't even know it was a thing.
PRAYER REQUEST: My next hurdle is my port not functioning quite right. We tried a medication that sits in there and breaks things down that could be blocking the line and it did not work so I go on Wednesday for a dye study to see why it is very hard to flush anything through it. My vascular system is faulty and the thing is the veins and such that they pass the lines through collapse after they have been messed with so I was told last time that if this one goes out my only option is a semi-risky surgery at big barnes, under general anesthesia and they have no guarantee that it would successful or not, my veins are just collapsed and practically useless for this purpose. I will have to make a big decision to make at that point so please pray for wisdom all around doctors, me, my family, it is nothing to be taken lightly.
This is a rough season of what feels like one thing after another however I have been convicted of looking at all of it through my sin lens and not through the lens of the loving, merciful and powerful God that renews our souls and makes all things new, He is the only one that can do that despite my challenges, He is doing restoration in and through my life. He can put the pieces of my heart back together again every time it falls apart. (which lets be honest it's at least a once a day situation over here)
Only You can bring such beauty from the depths of all my pain Only You can take this shattered heart and make it beat again Oh, You hold us all together in Your hands
I want to say thank you for every prayer you petitioned for me, it was a long 8 days in the hospital. I am home now and life is just rough sometimes. The migraines have calmed down but rage up at times and at the moment treatments options are up in the air. I don't have words really but I heard this song and man could it be more true to me than right now. I need that strength to keep on hoping and He will give it, it might not be easy but I can do all things through Christ who gives me strength, He promised it. So I am just keep on going forward with hope. He still has my life in His hands.
I apologize for my lack of communication. It has been
eventful lately. I have a prayer request to share with you. 2 days ago I came
down with a 100.2 fever but I just took my medicine and went to bed. I woke up
the following day, my fever had broke and never came back until this morning
when I felt horrible, took my temperature and it was 101.8. I had one of the
worst migraines and due to my port anytime I get a fever I have to get cultures
to confirm the line going right to my heart is not the source.
When I got there, only 2 staff were available due to shift
chain so it took awhile just to be triaged. I saw a doctor who ordered blood
tests and was placed back in the waiting room. Hours later I got put back in
triage so the doctor could say they cannot find the source of the fever and I
needed admitted to be monitored for meningitis and pain control. They did give
me a slight amount of medicine but it did almost nothing. The Tylenol however,
did break my fever. They said the ER department and the rooms upstairs were
packed so I had to go back to the waiting room and managed to get a chair. It
was so busy they were down to standing room only only after I sat. We arrived
at 6:30 and I got a room in the ER at 1:30 finally and met the hospitalist who
ordered pain meds but everyone refused to give what she order so I had a small
amount of something which barely helped and laid in the ER till after I got a
room upstairs sometime after 8pm.
My oxygen was dropping when I slept so they put me on
oxygen. Later, I found out they would
only give me pill morphine which I had been taking at home and it didn’t work
there so I don’t know why it would work now who knows but that’s what I got. I
whined enough that they finally agreed to give Percocet which helped a little bit but nothing IV like
I needed would be approved. I was also given a migraine cocktail thing called
DHE. I was then discharged. I am still in pain but hanging in there.
All that to say I need prayer for managing my medications
and that the fever will not return.
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:
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.
