daily life of loneliness

Although I am beyond grateful for the "better" morning I had it makes the crash that much harder. It's like you have tasted freedom but then it was taken from you. These downward spirals are brutal. Feeling ok for just a short while is making me feel like the horror is so much worse than it is. Chronic illness, especially at my age makes people who you thought were your friends run away. Being my friend takes sacrifice and quite a bit of it and I am finding that most are not willing to sacrifice anything. Also, yes, I am quite aware that I am not the friend I used to be where I could do things instead of lay in a bed. In order to be my friend you have to be willing to just lay in the bed with me and talk or color and just live life with me on a deeper level.


Apparently, that is too hard for most. I have gone weeks without leaving the upstairs thus not having human contact besides my parents. Normally, I don't mind actually, God made me to be a bit of a loner and I imagine this is why. He knew this season of life would come for me and He granted me grace by making me content with being alone.


Having said that, at times I long for people to live life with. Even if that life involves a whole lot of nothing other than sacrifice. Life is hard and no one can do it alone. God becomes my BFF in times like this where isolation closes in rapidly. Just a girl and a cat and Jesus in fellowship. ok fellowship might be a bad word choice but Jesus has to like cats and I am confident that he knows what they are saying. He will not abandon like most have and is willing to sacrifice at all times and in every way. He should be our best friend, the one that gets you, the one that knows you better than you know yourself, the one that knows what you are thinking before you even speak, the one that you have the most memories and laughs with. Just the one. He is the one. The solution to isolation. Him.

despair cannot overcome God! ALSO, A MIRACLE I JUST FOUND OUT ABOUT

It's the light that pierces through you to the darkest hidden place. It knows your deepest secrets
But it never looks away. It's the gentle hand that pulls you from the judgment of the crowd,
when you stand before them guilty and you got no way out. Some may call it foolish and impossible but for every heart it rescues, it's a miracle. It's nothing less than scandalous. This love that took our place. Just call it what it is, call it grace, call it grace. It's the breath that's breathing new life Into what we thought was dead. It's the favor that takes orphans, placing crowns upon their heads. It's the hope for our tomorrows, the rock on which we stand, the strong and mighty fortress, Even Hell can't stand against

POTS cannot stand against the rock on which believers stand. Nothing can even begin to compare with the strong and mighty fortress He is, I mean c'mon if hell and satan have no chance to stand then umm WOW. We serve a God that holds us gently in His mighty hands with peace even in our sins AND one day He will hold us as a beloved child who's flaws and sins have been bleached away, never to return. I long for the day when I can be held by my heavenly father. I am so excited!


The summary of my appointment with my hematologist the other day went like this: Me explaining all my problems and him being extremely nice and actually intently listening. He is legit one of my favorite doctors ever, he goes super above and beyond with compassion like no other. I have nothing bad to say about him. When I was sitting there in the room waiting for him to come in I will be honest, I thought life was pointless, I have no doctor to turn to for pots because doctors are scared of it, I am sitting in a wheelchair while holding an expanding file folder full of well, kind of my life that wouldn't even close there were so many documents in it. I'm 24. 24 people. I think as of now I have been ill for more of my life than healthy and that stupid saying "it will get easier with time" is a lie. It does get easier in the sense that if it is His will He will give you the rest, the peace, and the "easier". BUT It comes from God not time.

My hematologist said it's not his field and he didn't even know POTS existed before he met me.  He did do research though and the only thing he had to offer was advice. He said that it is VITAL that I find a doctor who agrees, listens, and helps and he said that is Dr. Quattromani; Because I have established a rapport with her so regardless of how; he says I have to work something out. It is so important to keep that rapport going because it is unlikely that I will EVER be able to establish that "doctor/patient" relationship with with any other heart/nervous system physician because they don't know, don't want to do the work or they don't want to take a risk because my condition is scary or they just don't care and want there paycheck and run out the door.

He told me to hang in there until Dr. Quattromani gets her clinic started. He said he knows it's hard, and he can't even imagine what I am facing and how hard my daily life is.


 He commented on the  doctor that I had respect for but said I cannot have this port in and be his patient because it's an infection risk and he just isn't comfortable with it.  
My hematologist was so perplexed. He said they do ports all the time on people who are  ON CHEMO and they have to get it replaced every once in awhile due to infection and this is on immune compromised people so my other doctor's fear of infection isn't really fair because I am at a lower risk for that than any cancer patient and it's really not a big deal if you watch for the signs of an infection and simply replace it if need be and give antibiotics if it does become infected.


Really, not that hard and not a big deal for me even though it is a risk, He said I never told you this before but I will say it now  "I have never put anyone on such a high dose, injection blood thinner besides you because it is a huge risk and could kill you if something happens but it is a risk worth taking at this point because if I don't do it you will get a clot that could kill you. I have to choose the risk of a clot vs the risk of falling and internal bleeding. Your POTS scares me and makes this decision that much harder but you are more likely to get a clot than an injury" His next words are just plain hard to hear "because you are on such a high dose, if you feel sick you HAVE to crawl to get places because to be BLUNT if you hit your head even in a special helmet, I will never see you again." STRAIGHT UP. THANKS FOR THE PEP TALK.


Given that chunk of information he said that the fluids are actually really important in saving my life on many angles, since it helps keep me from passing out (and dying) It is vital.
He said if fluid therapy is the one thing that helps me the most despite all of my other treatments and the drug resistance that I have built up, which is extensive, to where the meds I am on would normally put people in a kind of, sort of, a remission thing or at least helps them regain some functionality, but they do not do that with me. My body rejects them and they only help in a minor way and fluids help more than anything else.


In conclusion, he said his part is easy like here just inject yourself everyday and it's peachy as long as you don't get hurt. The hard part for you (me) is going to figure out in any way possible if Dr. Quattromani can help because she is the only one willing to take risks to help people. Without her you have nothing. (my insert of nothing but my savior, healer and redeemer goes here)


I left this appointment in a daze. A daze that turned into sorrow, hopelessness, lots and lots of tears, loneliness and abandonment. I didn't know what to do. Getting ahold of Dr. Quattromani was a nightmare so I saw a new doctor who was crazy and if I would have listened to her I would not be here right now. The hematologist said to stop doctor hopping and focus on reaching out to Dr. Q. I tried so hard with little success until God gave me a miracle in the form of a women from the POTS community gave me her cell phone number and said she does not mind at all if you text her. Little did I know that this IS THE HOPE GOD was giving me if I just waited. Be still and wait, you are in your heavenly fathers care even if it doesn't feel like it.


I texted her and she agreed to renew my RX for infusions a couple weeks ago and after I saw Dr crazy pants let's kill our patience for fun lady I felt hopeless again. But what do I do if something happens? I am thankful for the renewed prescription but I was terrified of something happening and the doctors pulling the port because that is what ALL of them seem to want to do. I sent a text to Dr.Q which I only do sparingly because she is busy and in a new practice and technically I am not her patient. I was desperate.


Here is where the God I love, cling to, rely on, and find hope in stepped right in and took over. I sent the DR a text asking what to do if something goes wrong and her response is my miracle: "I have practicing rights there still so if a hospital or a doctor wants to speak with me then give them MY CELL PHONE NUMBER because I consider you as my patient still." I cried from just the relief and peace that was just given to me by God using this doctor to show me He didn't go anywhere. Oh ye of little faith. My heart is thankful and I have found a NEW glimmer of hope. There is always a glimmer but this one is new. God's in control, praise Jesus!




I keep going back to this song. Seriously, listen to the lyrics and let God touch your heart.

oncology office

I have been having a really hard time coping with the thought that without a miracle, I will have this to deal with forever. I have spoken with a few people who have battled this for 40 years and the only conclusion I have found is that this battle is long and hard. Most have ups and downs but still spend months in bed despite the treatments. I can't really even wrap my brain around the concept of "no cure".


Some do get into a remission like phase but it usually doesn't last long. Some have seen 30+ doctors in the search for just one doctor who will believe and listen and help. I don't understand why so many doctors refuse to do this. Like didn't you become a doctor to help people? Apparently not. I am tired of doctors with inferiority complex's. Be real and honest with me, if you don't have an answer or help to offer please humble yourself to just say you don't know, this is my LIFE we are talking about here. I know I am just "another" patient to you, it is written all over your face but put yourself in my shoes for one minute.


If you did you would see the struggle of waking up everyday to fight passing out spells, fevers, brain fog, plummeting blood pressures, a racing heart that feels like it could explode, endless injections, needles and pumps, nausea, shower chairs at 24, canes, wheelchairs and migraines. You would see what it is like to be bed bound just staring at the ceiling and crying for hours, you will forget what it even feels like to be healthy and do simple tasks, you will learn how it feels to have someone tell you that it is not as bad as you make it sound, it is all in your head, your lying, and my favorite, you are out of options.


As a doctor you have the opportunity to change people's lives. You can build them up with a sense of hope and you can shatter there soul with the words you say. You can enable people to fight or give up. You are not God but you do have people's lives in your hands, they are looking to you for help and sometimes you just need to let go of your "I'm super smart and I know everything there is to know about everything" attitude and humble yourself to help, not hurt. After all, God did not give you the gift of intelligence so you can go around feeling mighty.


 I went to my oncologist office to pick up blood thinner injections and since my case is complex I have to have a hematologist treat my blood clotting issues. I was sulking and exhausted as I walked through that door but when I glanced over I could see the chemo infusion room. This oncologist office's main goal is to keep people on chemo without having to be in the hospital all the time, they want you to heal at home so all infusions are done in office and then you can leave after. I looked at the lines of chairs with IV poles hanging and the people who are going through hell on earth and fighting with everything they have just to survive. A room of Bald, pale, and thin people, one in tears as the poison ran through. Life is hard. The effects of sin is shown in everything.


These struggles we all have should not exist. God didn't create the world to be faulty. We got that part covered. I realized how precious the gift of eternal life with a God who loves in a way we can't fathom really is. This world and these trials is not all there is. For those who believe, we will be cured of cancer,  nervous system failures, tearful hearts, and downcast souls. We will  be made new and this hard life will fade away and we will be cured. Cured from our sin and physical ailments. There is a cure He just isn't here yet but believe me, He is on His way and you don't want to miss out on the mercy He provides. The things of earth will go strangely dim in the light of His glory and grace. Seek and you shall find. Because of this we can take comfort in knowing that in all things there is hope. This is what I am clinging onto, it's all I have.

shattered miracles

I went and saw a new doctor yesterday that my other doctor referred me to and it was horrible. Here is your overview.

Side note: I also just called this morning for more information and between that info from her nurse and the actual appointment this is the result:

1.She has no compassion
2. She is REPULSED (she used it) at everything Dr.Quattromani did
3. She would never and knows nobody who would ever do any of it
4.She wants me admitted to the telemetry unit at wash u and cold turkey stop ALL of my meds and infusions INCLUDING all psychiatric ones
5. put me through all the withdraws WITHOUT those "withdraw symptom relieving meds" because-- no meds is the point
6. it would mean 2-3 weeks inpatient to get through the withdrawals and just see what my nervous system does.
--Basically put me through hell on earth with no relief.


I left the office crying and cried myself to sleep and cried all morning. Cry was all I could do. That is why you are just now hearing from me. I never would have imagined that I would ever get an answer like that.  Shattered, broken, beaten, lost, stuck, and alone all describe how I felt and I could not talk about it.

This morning I got so desperate that I texted through my blurred, teary eyes  Dr. Quattromani (my original doctor) and a miracle of all miracles happened, she said she still has privileges so she will sign off on my infusions and she said I am getting better but it is just a crazy slow process.




 I am doing way better than I was when I was diagnosed therefore her treatment is working (unlike what the other one said) it is just a slow and hard thing to treat and regain functionality but I am not where I was when I was first diagnosed and just keep doing what I am doing and getting out more and more and eventually my body will re-condition just slow and all meds and infusions are what is enabling me to be able to do that. If I would have been admitted and tried the other plan it probably would have killed me. A girl actually died recently because of something similar to what this doctor wanted me to do.

She gave me her fax number to send all orders too and her cell phone number to contact her. She is going to renew my infusion scripts because she still has practicing rights here and still plans to eventually open the clinic near her once her malpractice insurance goes through.