happy happy joy joy..not

This one should be quick it is really just a quick rant. So if you haven't noticed my blogs are not joyful and exciting and happy to read so I am sure some have stopped reading due to that exact reason. So be it if you don't want to share in each others suffering and would rather hear that life is grand and I just won the lottery and will now donate a million dollars to everyone who is still reading this. now what. Anyways, today is a thoughtful day because I don't have anything to do at all. No doctors to see today! Thoughts can be good and bad because I am realizing how much God has come through in the end after I have to go through about 5 hoops that seem to eat at my soul each time but He has come through in miraculous ways and I have seen more God moments since this began than I have in my entire life.

There is also the bad. The realization of childhood friends going to cool places to get cool jobs while others do more missions type stuff with kids and just start planning there lives finally after being burnt out on school for so long. The joy I have for them is overwhelming and I am so proud of them all for there hard work and dedication to get to where they are today. I also had to face the realization of my future. or lack thereof. I have one but it is filled with unknowns and kind of like being in a round a bout with 6 roads you could ghetto whip onto but none of them are fun or where "I" want to be. From my non Godly perspective they all take years to travel on and they are filled with bumps and flat tires and possibly a car crash thrown in there too. My dad has told me countless times to focus on the now which I never do so I don't know why he tries but the now and the later do not leave me with warm fuzzy feelings. I don't know what it will look like and I have also been told not to guess haha I'm a women do you want to repeat that but I know I am not the happiest person in writing. I am more happy in person where you put your happy face on anytime you go in public but I just ask for prayers specifically right now for peace of mind. I am filled with emotions from sadness to worry to fear everything and I have to find my peace in Jesus so that is my prayer request for today. thanks.

. God is good. God is good. repeat. Also, life is short.

These last 2 weeks have been a challenge. I got my port put in Last Monday and the procedure itself went well but the pain afterwards was way more than I was expecting. I couldn't really move my neck for a few days.The home care nurse came the day after my surgery and accessed the port for the first time which was an odd experience; since it was s o new it was sore as she pressed around trying to locate it but the actual needle part was not bad and then that was it which was amazing compared to 20 IV tries. The weird part is beyond the initial sting of the large needle you also can feel internally when it pops into the port. super weird.

Then I got a massive welting rash across my neck where the band-aid was and it shows no signs of going away and I have a horrible rash underneath the tegaderm that drives me crazy because there is nothing I can take for it and I can't scratch it. Pure torture. Add to that a wound that OF COURSE is not healing properly because I had excessive swelling (go figure) which produced tissue fluid and when steri-strips get wet they come off so they did quite early so now I have bleeding and tissue fluid that builds up under my tegaderm irritating said rash even more. It all just looks nasty. So today I have to make a follow up with the surgeon so he could take a look at the wound since it won't close yippee.

Due to these weird rashes and welts probably from an allergic reaction to something except I have never been allergic to latex. band-aids, steri-strips, tegaderm, tape, alcohol preps or anything like that and I have had them and dealt with them on a regular basis. So, off I go to an allergist who is going to search for skin condition's and an autoimmune disease. I also have to see a GI Dr. because I keep getting oral thrush for no reason that we can find so my pulmonologist thinks that it is possible that there is one piece of fungus/thrush hanging out down in my esophagus that almost goes away when I go on meds but then it is stubborn and goes viral and goes from the bottom of my esophagus to my mouth which is why I have had oral thrush like 4 times recently for no reason. So that is 3 appointments which will happen soon.

Today, I went up to work to say my final goodbyes and turn in my ID. This did not go as I had expected because it was supposed to happen before that but some "issues" occurred and I was very disappointed in the experience altogether. I felt like I was fired on bad terms and was illegally being allowed to grab my stuff and be escorted all the way to my car by 4 security officers. Where I am still on FMLA and my termination date due to lack of FMLA time is April 18th. I am still an employee just on FMLA anyway.  so I came in today and was escorted to the kitchen where they had packed up all of my stuff for me in a box. All of my stuff was not in the box and I was not allowed to go back to my desk to gather my own things my manager had to do it. All of my personal property had to be collected by someone other than me. Kinda makes one feel violated. Not only was some of my property not in the box they had to go hunt my stethoscope that I paid a lot of money for like over $100 and as it turns out someone had been using it the whole time I was off. Feeling very violated. Also none of the staff was sent a quick email letting them know if they had 2 seconds they could stop in and say goodbye. Let me just say that almost every other staff member that left got some form of a party I told my manager I don't need a party but I deserve to say goodbye to everyone. Well, when the parties occur an email goes out saying come back on your lunch and say goodbye. I don't get that much so I did not get to say goodbye to a lot of the people that I considered my 2nd family. I considered IMS my second family and felt loved but the true feelings really come out in the end and despite you all personally witnessing my seizure I get treated like I don't belong. I am sad that it has to end this way but it also shows me that maybe God has better plans for me. When you hand in a badge and you get a oh ok and the manager walks away it's time. I love my ex co-workers/ family though and always will so feel free to contact me at any time.


Lastly, I found out that the company representing me for my state disability called and said that they cannot because my Dr is stating that after 7-9 months of PT I should be able to hold a sitting job position. You have to be unable to work for a solid year to be considered for state disability. She also wrote that I will have to have periodic days off due to my illness if the symptoms are too severe. So, let me walk into this employer's office with my resume, sit down, and explain that I have an illness that requires that I sit the whole day and that I could miss work 1-4 days a month from the very beginning due to my illness. Yes, I am aware that FMLA benefits do not apply until you have worked for a total of one year and I am also aware that you have plenty of other applicants who can pick up a phone and talk just like me but would you like to hire me anyway? This will go well.

As far as I know my LTD is still in effect and will kick in sometime in April which will be a Godsend. Please pray with me that nothing crazy will try to be pulled to get out of having to pay that because it is a posssibility.

Right about now I am feeling very sad, overwhelmed, and overall just broken. I feel like one area of my life is on each individual card in a 50 card deck and it was just decided to play 50 card pick up so who knows what order they will get collected or when. Crumbled, I can't even think about the near future let alone the distant one. I am 22 but for now I have to live like I am 80 and I hate it. Honestly, I hate the spot that God has allowed me to be in....AGAIN. I really do. It is ok for me to hate it, I don't have to like and I would be a weirdo if I did. I do have to just remember God is good no matter what in my brain. If it goes to my heart that's great but for now it is chillin in my brain because that is all I can do right now. That is the only hope I have to cling to and with everything in me I will cling to it because without hope I have no point in living.

In case you forgot let me remind you. Your life as it is now is not promised to remain as it is for the next 5 seconds. You could finish reading this and get a phone call that could change everything. You could pass out in the next 3 minutes and find out you have cancer and it is terminal. You could suffer severe brain damage in a car accident tomorrow and your life will never be the same. Your child could become ill and you must enter into a battle you never imagined you would ever have to fight. All of you who just read that I am sure are cringing because you did forget. You forgot how fragile life is and everyone is not promised to live 80 years. Along with your forgetting you probably forgot where you or loved ones will go if tomorrow is the time for that fatal car accident. think about it. Do you know without a doubt or do you have a sense of fear lurking when I mentioned your ill child where would he or she go?  I can tell you right now if God chooses to end my life I have no fear and no sense of doubt in fact I look forward to that day when the troubles we face on this earth will be gone. Do you feel that same peace? There is only one person it can come from and if you fear where your children or your wife or yourself will go when this life ends whether it is ended too soon or they live to be 80 and I would gladly tell you. Don't wait. You may not have time to wait. You can reach out to God himself in this moment and He will answer, I am not the go to, God is you can talk to Him yourself, He won't turn His back on you no matter who you are or what you have done. Life is short. Don't wait.
My email: allhartmanmovip@gmail.com

surgeries, aftermath, expectations

The surgery to put in my port went well. The aftermath from the moment I woke up was not so pretty and very unexpected because I did not know they hollow a hole in your neck and shove stuff in it. I am not sure if that is what they did but that what it feels like occurred. I was so not expecting the amount of pain that I was in all from my neck not even the port itself but still woah crazy. Crash course in neck immobilization followed with a lot of dumb moments where I forgot and then I remembered and hated my brain.

It is better than IV pokes but it has already clotted once ending in me having a mental breakdown until the roomie calmed me down enough to say lets try flushing up here closest to your heart and then we sat there and slowly heperined it until the clot went away and it worked again but I was in full loosing it mode because nothing goes right not even one little thing. God must be trying to teach me patience and/or perseverance but it's not working. Obviously. He might have to use more of His strength to just guide me a little closer cause I sure am not going to get there on my own. So right now it is pain and more pain and recovery and finding things that sound good to eat and drink cause that's about nothing right now.

ports, realizations, Godly pinch collars

I haven't felt like blogging so I didn't. Be glad because when I do it gets weird and I will talk about poop or urine or my cats or how I was really curious to see what a prostate looks like once it is removed from the body, obviously. Too icky otherwise to speak about. I am speechless because it is a nearly impossible thing to find. I might have found one but I can't tell if it is in it's natural state or altered by a tumor. NOW YOU SEE THE PROBLEM! but really since when does the internet not have a pic of something?!?!? MOVING ON





I am still not entirely sure how I feel about blogging today cause I kind of feel like crap but an update is deserved and it will be done mostly the easy way for example below is a multiple used description of how my appointment with my surgeon went so we will reuse it AGAIN. YAY:

Really late and I am really sorry but my appointment with surgeon went great! He came in very skeptical asking why I needed a port, then needed to know what pots stood for, then skeptically asked who diagnosed me when I said Dr. Quattromani his whole demeanor changed and he said well she is the best in the state so go on and he wanted to know the prognosis because he was assuming this port was a 1... month deal when I explained lifelong with possible but hard to achieve remissions he just goes that is just crazy and you are only 22! Yup. I am aware. Even being skeptical he was very nice and gladly agreed to put in a port on my left side by my clavicle bone on Monday at 7:30. Thanks God for ultimately giving me the best doc even if I did have to see Dr. idiot first.

As you can imagine I am very ready for this surgery so that I stop looking like this: (reminder: God has blessed me with a lack of sensation on both of my arms so only one of these hurt *the wrist* but also God has given me a high pain tolerance for needles specifically as long as they are not going in my mouth so it looks very painful but for the most part was not) There are more just spread out so I look like I shoot up ALL the time. Is it ok to pretend like I am in a super awesome weird gang that nobody has heard of but we are rich and secretly rule the world and shoot up all the time? probably not. I did for about 10 minutes and decided the thug life is not all it's cracked up to be. Besides, I think I will let God take over this whole ruling the world thing because people are stupid and I have a hard time dealing with stupid people like in Walgreens where you want to carry them to the back and dump them in the Goodwill donation box since they cannot contribute good things towards society. See, being God is not my thing.

Lastly, I just realized that once I get my port in my battle really begins and I'm already done. Ince the port is in I start rehab what rehab will do is retrain my entire system well as a part of that no matter how slow they take it the rehab that will probably last a year is said to be the worst thing ever because it has to mess up my system to retrain it so every time I do I will feel like I did back at the very beginning before I even had heart and BP meds with the feelings of passing out but hopefully the meds will be at the right level so I won't but inability to walk more than a few steps without leaning against a wall, feeling like I can't breathe at all times, puking a lot, bp drops, the whole thing that I have fought so hard to get even just a little bit under control will feel like it is super charged again.

My bad day song will be on repeat a lot I have a feeling and I already know that this is going to break me to my core to where I have nothing left besides my savior and my God. I already know I won't feel him there because I will be upset and frustrated and done with everything and will have to fall back on my pure knowledge that I KNOW in my heart and brain He is there and find hope to face the next day in that and not in feelings. It is now real and my days of not feeling like death are numbered as I approach physical therapy time but in the end other than a miracle it is my shot towards a semi normal life and at 22 I have a whole life ahead so c'mon God go get your leash ready and you might need a pinch collar to drag me through this.

I will look like this. Hey God is strong!

Heaven bound

So, as most of you know yesterday sucked. I felt horrible in the morning and as time went by I just kept feeling worse and worse. As if that doesn't suck enough my IV blew and my veins were up to the usual antics so, it took 4 home care nurses, one being a NICU nurse to get one in all between the hours of 1-8. The one who actually got it was my last hope because if she couldn't it wasn't going to happen; as I was told she could put an IV in a rock. Unfortunately, I broke her record since it took her three tries for a grand total of 6 tries. around 8pm it was finally in though!!! Now God has blessed me majorly with one thing, due to so many IV's in my life I have very little feeling towards needles in my arms.


So with my migraine getting worse and the NICU nurse saying she was done trying and I have one more hope who she will call out I lost it. So,tired of everything being difficult and all I could do after the nurse left was sob on the couch and text my dad to ask if he would come over because I needed him to be there. I then did what I always do in this moment put on repeat a song about heaven it will be "I will rise" by Chris Tomlin or "I can only imagine"because in these moments I long for heaven. I of course will but I cannot wait to be with God and be away from the problems of this world. I have to thank Jesus for dying for me so that I have heaven to look forward to beyond this life because without that I would have no reason to be alive and keep facing my trials. Sometimes, I can lay there and mentally put myself in heaven and other times it gives me that piece of hope that I need to keep going knowing what is waiting for me "on the other side" no matter how long it takes and how many more trials I will have THEY WILL ALL END ONE DAY. That day will be one glorious day but until them I am heaven bound and will cling to that on days when it is so hard to even open my eyes. God is still and always will be good and have my best interest in mind even when I can't see the big picture.




On a totally not serious note that I have to share when I was searching for a pic that looked like the peace we will find in heave I google searched just the word heaven under images this happened: your welcome.

DOCTORS!

SO MANY OF THEM! Soon they will take over the world. Then the rapture will happen and God will reign and heaven will be awesome and all will be fantastic forever. Only part of that was realistic but hey right now I am awake and I don't want to be so I can temporarily think whatever I want.

So this Tuesday I have a consultation with the surgeon that you all can pray with me that he will agree to put in my port. I was so against this port until reality check 101 got stuck in my face and most of what I remember is you have a lifelong disease so you could need infusions periodically for your whole life so because of that the port is in your best interest. Something like that.

After hearing all that blah blah blah that won't really sink in for quite awhile I agreed to the port mostly based on the fact that it is under my skin so when it isn't accessed I can shower WITHOUT wrapping it with cling wrap. Guys cling wrap is not meant for bodies but that' what I have to do now and it is horrible. straight up ratchet. I'm semi-ignoring life long talk for now because I can barely deal with today so I start there.

Now I have done one day of an 8 hr IV saline infusion and the next day I went to get out of bed which usually goes something like I sit up get dizzy, stand up get more dizzy and lightheaded, walk stumble to the bathroom, walk stumble back until I make it into my bed and praise God that I made a safe return after about a total of 12 steps. After Fluids I got up, walked into the kitchen, emptied the dishwasher, made pancakes, then went back to bed and slept for 4 hours out of exhaustion but without the dizziness that made me feel like I was dying. HUGE STEP!!!!.

So at last, almost 3 months later a good step and I am thrilled so please pray with me that the surgeon will agree to the port and I can get that started and then get physical therapy going. Thank you all for all of your support and love I could not do it without God and you all.

Hillary Ann Rollpole and reality checks

So, it has been a little interesting around here lately. I never really know what is going on and neither does anybody else. I thought the PICC line thing was settled then it wasn't then nobody knew anything and everyone's brain fell out through there nasal cavity it all was just crazy. So I said I give up just do the normal IV's good luck they will blow a lot so dear nurse you might want to think about moving in. I finally get a call that says they they found a surgeon who might be willing to put in a port but per protocol they see you for an appointment and then schedule the surgery from there. Well, problem #1-- I do not want a port in my chest I want a PICC line but I went ahead and made the appointment since I knew a nurse was going to come out and do a regular IV in a couple of days anyway so we will do those until I know more and see this surgeon.

When the nurse came we were discussing it and she got the IV in on the 2nd try (miracle) and got me all hooked up and then called my doctors office to see if she could learn what the deal was. She "just so happened" aka God moment to call right when my Dr was standing near the phone and the MA on the phone let my nurse speak with the Dr directly. I couldn't really hear the conversation but when she got off,  the nurse said now I didn't know this part and I know you do but she said to put it delicately since it takes awhile to sink in; she is not refusing to do a PICC line she wants to do what is in your best interest and because your BP is really low at 90/70 which is an obvious sign of dehydration and your body has already shown us that it cannot keep itself hydrated it will need help. Your condition is not like a 3 month deal if it was then the PICC line would be perfect but since it will be something you will have for your whole life she wants to do a port because they can stay in forever with maybe a replacement needed every 10 years but you will probably need hydration therapy your entire life. Given that; the port is under your skin and as long as it isn't accessed you can swim and shower and live a  more normal life than with a PICC line that we would have to change every 4 months. SIGH. I am now going to introduce you to my new roomie Hillary Ann Rollpole: She takes 8 hours of my time twice a week and beeps at me really loudly when she is angry. I feel like I might have to kick her out one of these days but we will just have to see.

REALITY CHECK. I do know that my disease will never go away but just to hear it put that  way makes it real and I am still pretending it is fake. One of these days It will become reality but I am not there quite yet. The nurse explained that if she was me she would do the port and the reasons why and I completely agree with her so I have a surgeon consultation on Tuesday and then the surgery to have it placed will occur after that. Here is a non graphic pictorial example of a port so you have an idea of what I am referring too: When the port is accessed it is the same as what is above so Hillary gets to stay!

up down spin around (long post)

Title continued: up down spin around go down get back up get knocked down give up to last resort get back up after a phone call and then more waiting. Which is really what this has all been since the 18th of this month it will be 3 months since my seizure and not a whole lot on the treatment scale has occurred.

I haven't updated much because really the roller coaster of my life has been so insane that I cannot even update on it. The confusion that I have felt in this last week has left my brain in a half working state. I work in the healthcare field and love what I do and I always try to do whatever I can got my patients but man being on the patient side sucks! I know God is showing me that He is really here because every little thing I have been freaking out about or been upset because of how it ended has shortly there after been the best thing that could have occurred and in the way it did. Trust is so so so hard the longer this goes the more ups and downs I feel the more my female emotional highs get destroyed and then built back up and then destroyed the more upset I get and want to give up and literally become a part of my couch for the rest of my life.

God has shown me so may times recently how he is working things out but I am still getting upset and heartbroken with each bad scenario that in His choosing thus far H e has decided  to turn to perfect scenarios and in order to create it the bad one had to be thrown on too. Basically, I have been punch by the lord a good 20 times recently and although they have me thinking my emotional state and my trust issues barely gte better. I can sit and explain everything he did along the way and map it out and say how awesome it is but when the next thing hits those shakey feelings come baxk. I am not entirely sure if it is sinful to have those feelings in the first place but more so what I do with them. Becoming the couch is an obvious no no but if I add them to my map of figuring out how God will orechestrate people from heaven until that moment is over and I can see why it happened I just don't is the initial thoughts are sinful. People more Biblical than me care to answer???!!

So that's enough of that too many issues to explain so yesterday I had my good old IV pole delivered to me a long with a pump, heparin, saline flushes, alcohol prep pads, sterile dressing changes, and about 6 full bags of IV fluids. Due to issues I refuse to go into at the moment today at 1:00 I will have a nurse come in and put in a normal IV in me that can actually stay in up to 3 weeks before it needs changed. Please pray with everything you can that she will be able to get one in my veins are some of the worst but fortunately for her from so many IV's in my life I have very little feeling deep in my arms where needles go so she doesn't have to be so scared of the process. It is ALWAYS a 4-8 try process no matter what so please pray for this poor nurse who will be taking care of me and trying to find access because they never seem to believe me when I say just keep trying as many times as possible until we get it cause you aren't hurting me but it freaks them out. I will next explain the PICC  mess on a different post another day.

PICC line status

Nobody knows what the right hand is doing. I called my Dr. office on Monday to find when they scheduled my PICC line placement for and the person that schedules them was not going to be in until Today. I was like okay whatever. Well, last night my infusion nurse called and asked what time she should come out today to show me how to use it. When I explained the situation she informed me that there infusion specialist who I talked to at the beginning had called my cardio office on Friday and they were setting it up to be placed on Monday and at the latest early this morning and would call me with the details which obviously did not occur.

So, I spoke with cardio they are going to ask around and try to figure it out and then give me a call. Left hand and Right hand can we please just get a long. So now I do what I always do and wait, wait, wait, wait , wait, and more wait. after all, it is my favorite activity ya know. Hopefully they can squeeze me in somewhere and get it in because once I have that I can start PT now that I have a new order that The physical therapists will actually accept.weeeeeeee. life.

And I know that you can give me rest, So I cry out with all that I have left.

I think it's because I have been through so many health explosions that now when they just happen I am just like yeah ok 10-4 copy that in a very casual manner. I think that is also why people tell me that I handle things so"well" and why my dad was asked when I had my seizure why he wasn't or didn't completely panic and loose it. We both get asked about our reactions to these things I think every time they occur. My dad has been through so much with me and had so many of "those" phone calls that if he flipped out he would have had a massive coronary by now and what good does that do for me or him. I need him to be calm enough to have his sense of humor when he shows up and he doesn't need to do that to his body he just needs to pray on his way no flip out. I just say yeah ok because it's kind of like another day in my life at first. but that fades and the point of this post is that fading part. I don't take it hard and people think I don;t even hear what was told to me at first but I have received a lot of you have this and this is your crappy path so it's just like being on repeat.

Eventually though it hits. When it does it hits hard. Harder than it normally would because I add on everything else I have been through and say why can't all that be enough why do I have to do this one too. I am only 22 and people say the 20's are supposed to be the best years of your life where you work, "party", go on trips with friends, be out on your own, fall in love, and start moving toward marriage. I can't work, party, or really go on outings and I can't say that the prednisone fattened, 20 pills a day intaker, mostly couch ridden, PICC line dangling and generally ill and tired person that I am is attractive and going to put me on any guys radar besides God's so even though there is still quite a few years left in my 20's I can only pray that the second half gets better and closer to that thing they consider normal. Right about now is where the reality of my diagnosis goes from 10-4 copy that to grief and reality. I'm tired and the fight has just begun with my PICC line being put in next week and PT starting shortly there after. I have to fight and I have fought before and I will do it again but the memories of all of my bazillion fights of my past makes the thought of this one a very daunting one. I have had quite a few healthy emotional breakdowns just because I am tired of living like this, I don't want to do it anymore and I don't want to face the long road ahead. I just don't want any of it. It's not about what I want though it's about what God has allowed me to go through and for that I will do what I have to do from one day to the next whether it is with joy or obedience I am doing it because God wants me to and has allowed this trial in my life for a reason so I can't give up because who knows what He is using it for.

I will still have my days of tears and my days of determination to fight and both are okay because no matter what God allowed this so He isn't leaving me in something He allowed even if I stray away He will still be there trying to drag me back and reminding me He didn't throw this at me and run away.

I know I need to lift my eyes up
But I'm too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause I’m worn

My prayers are wearing thin
Yeah, I’m worn
Even before the day begins
Yeah, I’m worn
I’ve lost my will to fight
I’m worn
So, heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That you can mend a heart
That’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
Cause all that’s dead inside will be reborn

Though I’m worn
Yeah I’m worn