New treatment plan

My dad and I went and saw my electrophysiologist on Thursday and I now have a well established treatment plan. I feel such a sense of hope and peace just knowing that I have steps to take towards getting better. It will still be a long road but I at least know what the first mile of the course looks like.

I have dehydration issues that effect my kidneys and don't help my heart so on Monday or Tuesday I will be getting a PICC line put in and 2 times a week I will get 2 liters of IV fluids to keep my kidneys functioning correctly and help my heart to work properly. BJC home health will teach me how to do this and do dressing changes and all that good stuff so that will be fun but it should help me to feel a lot better because my kidneys are already showing signs of the dehydration.

I was given some ideas for home exercises and a list of diseases to give to any physical therapist that whether they know my condition or not they will know one of the 7 diseases on the list and if they treat me like they would treat those it will be effective.

I was also given more drugs to help me with retaining fluid and a massive potassium pill to go a long with it as well as another form of nausea medication. So, I have surpassed most people in pills and I will soon have a permanent IV for saline infusions to go along with my compression stockings and abdominal compression band. In conclusion it is now official I could not become any sexier than this. goodnight and sweet dreams.

new start

A big piece of the puzzle of my pile of life problems to figure out was solved for me. I was staying at my parents for a little bit and my roommate was home when she hears a knock at the door. Upon answering it A BJC man asks if she was Allyson Hartman after replying no but she is my roommate but she isn't here right now he asks her if she would sign for a packet and ensure I got it. Of course she did and called me.

Now, when someone from a large company pulls up to hand deliver a package full of letters that must be signed for it is not usually a good thing. I answer her call and listen to the story and my heart drops, I know what is coming. She opens it and reads the letter and as of April my employment with BJC is terminated and dropped all the down in the ranks to where I can't even apply through a different system we have for current or previous employees to apply at. Thanks BJC. As she reads I am thinking wow they really twisted those words to make it the perfect amount of subtle regarding who's "fault" this is. MINE. My favorite is it describes the things that I should have done to extend the process that I didn't do. bahahaha hey idiots I did do them. Twice actually. I'm gonna need you guys to get it together. Well, I won't anymore but for the sake of my co-workers than I love and will miss so much.  Anyways, she finishes reading it and I begin to process it.

I knew my exact job position with the nurse practitioner was going to be given away and that was fine but to be completely fired from BJC all together is not the vibe I got before. In fact, I had just spoke with the one who signed and typed up the letter the week before and she was trying to help me with one of my paperwork issues. I have remained in contact with everyone through this whole process giving updates and having doctors fill out way too many forms and this is what happens. BUT this is the proof that I have been asking God and searching for about trying to get a job at Mercy or SSM and I think I just got the most clear answer possible. This is so bittersweet though I have AWESOME co-workers who have been there for me and covered 2 and 3 docs while I was out aka they had no heads and you just run around and have just always been there to lend a helping hand and the nuse practitioners and doctors are some of the best I have EVER met in my life not just as a MA but also a patient. So yes, I have been terminated with the official start date of April18th. Bittersweet. God is still in control though so now I just get to sit back and watch his big picture unfold and do my part when asked and that sounds pretty good to me right about now. A little scary but it is mostly more peaceful giving it to God by force to deal with. The rest of this is directly to my co-workers I don;t care who reads it but I was just informing in case you have had enough of my novel already ;)


 Dear IMS,

You all have become such a big part of my life and I will never forget any of you. After being on the float pool this is the first job I had where I realized that I can go to work and not everybody hates everybody and if you need anything you can just ask and someone will help without going postal on your eyeballs. How refreshing. I truly care about each and every one of you and especially Heather who put up with my antics, whining, and mental retardation everyday without complaining. I will never forget all the good times we had and I know I will cherish the friendships that I have made as I go forward. I did not expect that me having a seizure one day would result in my job being terminated but I guess thats how it works these days. I also want to send out a huge thank you for those of you that assisted in any way on Dec 18th. You all saved my life and there is no way to repay someone for something like that but I do want to say thank you from the bottom of my still beating heart to all of you. I am going to stop now so I stop crying but as of April 18th I am officially terminated and I guess it lets me focus on my health.
                                                                                            Never a Final Goodbye,
                                                                                                         Allyson

bahahah good one God. 2 POSTS IN 1 DAY GASPPPPP

Whoever thought God does not have a sense of humor is trippin. When I wrote that last post I knew that I was going to have to make some calls and deal with a bunch of disability and work people that annoy and piss me off and then I get off the phone and I cry more because companies come up with the dumbest policies just to make someone who is trying to physically stay alive have mental handicaps as well. I had already developed at least 2 mental handicaps from dealing with these people and we all know I can't afford anymore or I will be "put to sleep".

Anyways, I'm cranky and emotional before I even begin but here I go. First call goes to my electrophysiologist. saying that they received FMLA papers and record release papers from me last week and I wanted to make sure that the records were sent because Cigna is saying via letter they weren't. Lady finally gets computer up and informs me that yes they were sent on the 12th and then I also make an appointment to see if I can get more guidance on what to do with myself because I am just a little lost.

Alright Cigna's turn! The call goes like this; ME: "I am just calling to check on the status of my claim. I got a letter saying it was delayed because you hadn't received records but I just spoke with my physician and they said they faxed them on the 12th." HER: "Let me look here it looks like it was delayed do you know when you got the letter?" ME: "no" HER: " hmm let me look in another spot. ohh actually it looks like it was approved and I don't see anything pending so he (my actual case manager) must have gotten everything approved and it looks like you are good to go. Due to BJC's 90 day policy your first paycheck will not be until April 11th but after that every month you will get $991 a month."

UHHHHHHH AFTER GETTING THE DELAYED EMAIL ON FRIDSAY THIS WAS THE LAST THING I WAS EXPECTING. ALSO HAHA GOD FUNNY FUNNY FUNNY I SPEND ALL NIGHT/MORNING IN AN EMOTIONAL NOTHING IS WORKING OUT OR WILL WORK OUT STATE AND YOU KNEW THIS WAS ABOUT TO GO DOWN. I FEEL LIKE YOU PROBABLY FELT BAD FOR MY LACK OF TRUST BUT ALSO HAVE A PRETTY GOOD GRIN ON YOUR FACE. YEAH YEAH YOU PROVED YOUR POINT!

puzzles and having a really hard time

My current emotional state is  the equivalent of an adult contemplating how to fix a 1,000 piece puzzle that a 2 year old tried to put together with duck tape to connect the pieces.  Basically a mess. I can't think of what I have to do and in what order right now without having an instant anxiety attack. This means I am having about three a day and if you have ever witnessed one it is not pretty. Crying, hyperventilating, shaking, occasional puking, and if it goes long enough I have passed out before. Luckily due to medications I only have the first 3 symptoms these days but when you have 10ish minutes of that 3x's a day combined with a heart condition and a faulty nervous system it is a slight problem.


I am at "that point' ya know the one where you break into the above massive deformed puzzle and God has to fix you and He is your only hope given ya know kids and duck tape would be a total disaster for any adult. I have 4 saved deeper and happier (gasp. I know you are all beginning to think I am emo) blog posts that I don't even have the motivation or desire to post. My point is I am so picking tired. Tired of sitting on the couch, tired of laying in my bed, tired of not leaving my house, tired of not making steps forward, tired of becoming so much fatter that my fat pants no longer fit, tired of the possibility that I will have to join a nudist community soon because I can't find clothes, tired of having to sit on the bathroom floor for 10 min after a shower so I can breath, tired of bothering those around me, tired of looking for a PT to take my case, tired of BJC making my life 20x's more difficult, tired of being tired, tired of feeling alone, tired of fighting for disability and living off savings, and I am just tired of EVERYTHING. LIFE. I feel like curling up in a ball until this is all done but since that isn't really possible the closest thing to it is GOD TAKE THIS AND GIVE ME STRENGTH TO KEEP BREATHING AND GET THROUGH EVERY MINUTE WHETHER I AM DEFEATED OR NOT cause I sure can't do it I already proved that to myself as I sit in my curled up ball right now unable to think or move or process all I can do is cry because I don't want to be on the couch but don't have the strength to get off it. God, I need you NOW. like legit NOW and stay here and hold me; well, after we uncurl this whole fetal ball position cause that could lead to back problems.

 "'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise"

What a day that will be

  http://www.youtube.com/watch?v=fa8w7mGug0c

"And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagle's wings
Before my God, fall on my knees
And rise, I will rise

And I hear the voice of many angels sing
Worthy is the Lamb
And I hear the cry of every longing heart
Worthy is the Lamb"

I hate support

The reality of not being allowed to drive for 6 months is just now really hitting me for some reason. You don't know what ya got till it's gone really is true. Needing a prescription is almost a daily occurrence and normally that is a quick 3 minute run to Walgreen's. Not anymore. It is asking my awesome roomie or one of my parents to go out of the way to get it for me. The same situation for everything. Need shampoo? Rely on others. Need groceries? Rely on others. Need to leave the house so you don't loose sanity? Rely on others. Have a stupid want that isn't a need? forget about it. Need to go to the doctor? Rely on others. Need the driveway shoveled? Rely on others. Need the trash and recycling taken out? Rely on others.

 It is not worth asking others to go out of the way for something stupid such as my recent random love affair with QT cubed ice and donuts. OK fine the donut affair is nothing recent, I have issues. QT ice on the other hand is a new one that was discovered when oral thrush invaded my mouth and throat. Ice+fungus=heaven and TMI. 

Anyways, As you can see almost everything is relying on others and I know I have the support of Chatham I would only rely on that for things such as doctor's appointments or getting me out of the house for my own sanity. I don't see the point in using that resource for the mundane things of life that require almost daily assistance. The problem is I hate relying on my roomie and my parents for stuff almost every single day. If it gets old for me it has to get old for them too. After some recent reflection I am now taking my roomie out of that daily mundane equation to the best of my ability and do the (insert parents here) thing.

I hate support. I hate it because no matter how much everyone says they will support you they will fail you. They may always DO what you need but you can tell by the sound of there voice they are annoyed about having to do it. "Support" doesn't want to listen to you whine about your problems but then is upset when they find you crying all alone. "support" says that you need to let others serve you and don't worry about it and while you try to take that advice you can sense and hear the irritation in there voice when you need them to go out in the snow or the cold to do something for you. While I say this I can say I have been just as guilty as anyone else of everything that I have ever typed about in this blog. I am not above my own complaints that's for sure. I have failed to support others who have been in similiar situations as me and of all people to step up it should have been me and I didn't and I am sorry for that. I am sorry for any of you that expected me to step up and be able to hop directly into your struggle knowing that I have been there before and God brought me through and I should have been there to do the same for you.

I am not perfect and I don't expect any of you to be. We will all fail. We will all be selfish. We will all not want to go out in the snow to help someone. We will all not want to hear others problems when we have our own to deal with. We all have our own struggles. I get it. This is mostly why I hate support. I hate having to bring people to these positions and putting them in these trains of thought. I don't want to drive myself or anyone to sin for sure and at times I feel like this situation can be a breeding ground for sinful hearts. Not really sinful behavior because on the outside I think we all look like we will rally around everyone and they will feel happy and we will feel happy and everyone is all kinds of giddy but internally in the mind and heart the feelings are different. I won't lie it has caused me to have a sinful heart on so many occasions that it almost feels constant since December 18th and I have seen it in others as well.

It is just hard. Life is hard. Everything is hard. Being 22 in the body of like a 90 year old is not normal. It is expected that you have to go pick up granny and take her to get her meds and to her doctors appointments while you and everyone else who comes in contact with her prays that her depends will stay clean for the whole trip and then if she is senile enough and you can afford it you put her in a nursing home where the mundane daily tasks are taken care of by others that you pay to do it. Well, I am not quite to nursing home status yet but give me a few more near death brain damage episodes and I might just get there!!!

Hopefully, I don't offend anyone with my humor because I have to do it or I will cry and I refuse to do that. The point of this is really just me venting some of the stuff running through my heart and soul but it is also a thank you to those who are there for me for the mundane and non mundane activities. Starting with my three mundane helpers!!! For starters, my mom has been my personal driver to and from doctors appointments and hospital tests which requires patience because hospital time is unlike anything else and with her own health issues it is hard for her but she does it anyway and buys me expensive signs that make me smile without thinking twice or really without thinking of what dad might have to say about the cost of said sign. Secondly, my dad who is my rx picker upper and "somehow" (God) always ends up catching me when I am off huddling by myself crying somewhere in a corner because I don't want anyone to know but then he catches me and holds me on the couch for an hour like I'm a baby again until I am calm. My last and possibly my currently most important support is the roomie. She always makes me laugh without fail like I am pretty sure that when we talked on the phone after my seizure while I was still fairly confused and in the hospital I almost peed in my pants from laughing after IV fluids and how painfully long it takes the tech to get there to turn off my butt pad so it didn't yell at me to "sit down. Do not get up until assistance arrives. sit down please".  She does the trash and recycling and shovels the driveway like a boss! Like legit boss.  I could not be more thankful that God put her in my life back in 7th grade knowing that I (and thus her) would have to face all this crap thrown into our friendship. He knew what He was doing because she is my only friend that has been around and is sticking this out with me. It is hard, really really hard and not something that a friend should have to deal with at all but this girl takes it all like a boss just like everything else and I could not do it if she was weak hahahahahaha Thanks friend for being there and being strong while I am whiny and weak and you suck it up and move on. Hey, one of us has too!!!!

A LOT of jumbled thoughts just warning but if you actually care about my life here you go

I have so much going through my head so this will probably be a spewing...excellent word. pardon my other half word you find in here too. I had to do it.

For starters, I hate Mondays (I am aware today is not a Monday but I didn't feel like dealing with people on Monday). I know NOBODY likes them and I am sure you are thinking pshhhh girl please you trippin you don't even have to work can veg all day. smh. I know that exact phrase went right through your mind. Admit it. Here is the thing with Monday's: They are a semi-sudden bit** slap to the face, a reminder of another week of what feels like (to me) no progress. Stagnant. I don't feel like I am going in any direction. My heart meds have helped to an extent. My pulse is between 85-98 while laying down and then it goes crazy again when I stand but I also have a BP pill and I haven't passed out completely in a little while. Thank you God. Close calls but those are more tolerable.

My lack of progress and well more so my lack of access to the correct resources to achieve progress. Here is the deal: my electrophysiologist hasn't really sent anyone to physical therapy for this because they train themselves at home using this booklet thing she gave me. I have no clue what those people did because I am in phase one: the lying down phase and all this booklet really says is "5 minute warmup" 10 minute exercise" "5 minute cool down" uhhhhh what does a warm up look like when you are lying down?  what does a 10 minute exercise look like when you are laying down? (planking? lol) same goes to cool down. I am beyond confused and besides that I am one of those people that need specific direction and guidance in most things and this is no different. She is in full agreement on PT but I can't find someone to take my case. Postural orthostatic tachycardia syndrome and autonomic dysfunction apparently aren't studied by physical therapists and I don't expect experts but they could read up on it and use there knowledge combined with research to come up with something you would think. grrrrrrrr. STAGNANT!

Also, my complete or nearly complete loss of independence is making me go postal. You don't realize how important it is to be an adult and to be able to drive until it is taken from you. I can't go pick up my own prescriptions, deposit checks, get groceries, get essential items such as shampoo from Walgreens and I hate it. There is a stir crazy factor in there too which one would think would be off the charts but when you feel like crap most of the time it isn't so bad. Having said that stir crazy and bored and lonely are two different things. Most of the time I don't feel up to going places but I long for human interaction sometimes just to make the time go faster and I like people. Most people. The not driving thing though is tough.    

I had 3 more meds added to my mound today due to these migraines I have been getting since the seizure. The verdict is up in the air if they are caused by said seizure or triggered when my heart rate goes high or maybe a little of both but regardless I now take more meds than a lot of old people. So that happens and I have two symptoms that are the most prominent and crazy annoying going on right now that I could use prayer for because they are wearing me out. The worst is this shortness of breath, the cause isn't exactly known but it's cardiac or nervous system related. I have some days where I can do dishes, fold laundry, and clean the litter box without feeling like I literally can't believe until the end of said duties then there are days where I have to mentally prepare myself for the journey ahead of me to walk into the kitchen to get ice for my cup. As soon as I stand up and begin hobbling and wanting a walker and an oxygen tank to get me to the freezer so I don't die. Not going to happen I know but it sure feels like it. Those days are absolutely the hardest. laying there with a constant awareness of your breathing is a form of torture.

The other issue is just weird. Every night when I try to go to sleep my body is cold but my face feels on fire it is red and so hot that ice packs and cold rags must be applied and sometimes re-applied in the night just to sleep. Weird but annoying. So yeah that's my jumbled thoughts that aren't exactly happy and I won't apologize for it because life isn't all roses.

I do want to include the following message: I have some really special people in my life that deserve recognition for fighting this with me. My roommate gets the most because she is not only my roomie but my best friend and I know it is hard for her to only be a friend in this. All I want from her is a friend not a home care nurse and 24/7 worrier lol Also, my parents are great too. My mom drives me to all of my doc appointments regardless of how bad she feels and my dad is well just my daddy, my guide towards God, my personal drug dealer prescription picker upper no matter how far out of his way it is. Lastly, My dear Terri, who provides me with wisdom that can only come from God or someone who has been through similar situations and is the best listening ear with the most compassionate, selfless and loving heart I have ever encountered.

Some days just suck

I can't find a physical therapist that will take my case, Dealing with all of my disability stuff and BJC might make me go postal. The last 48 hrs have been horrible. I haven't left the couch much. I can't breathe and I'm lightheaded which makes me cranky. Yeah, so I am trying to keep it together but I am getting worn down. I hate this. I feel like a beached whale on a couch. Society? what's that? I really only see doctors and for the most part they come really close to destroying the effectiveness of my meds. They are good at that. I am going to go back to being a whale now since I have no deep or happy things to say.

I must still live life: the life of a rebel

So, yesterday I decided to be a rebel and not listen to my doctor. You see this weird dandruff that keeps falling from the sky is really messing up the world. The roommate was at work and I was laying in my bed that is now my command center like I always am. I looked outside to see that this dandruff had made it so that said roomate couldn't pull in the driveway and would have to park on the street then shovel at 2am. Now our neighborhood is very safe minus a chicken coup/crack head house caddy corner but we won't talk about that. I got really sad when I looked outside and realized my roomy would have to do that.

I went back and forth in my mind, do it, don't do it, do it. The do it won. I told myself do what I can and if things get bad at least some would be shoveled. People with OCD should know better than to say such things. I went out at 12:15pm and finished at 2:18 and have decaying physically ever since. I am trying not to show how bad I feel around my house because it doesn't help anything to make the people around you miserable as well. However, it gave me a huge mental satisfaction knowing that I could shouldn't have done it but I did without passing out. I caught my form of a red dot yesterday in realizing that I have to follow my docs instructions but I also have to do what is best for my mental health. It's a shaking red dot that goes back and forth and one day I will find the correct ratio of activity and catch that red dot once and for all.

Will I be an idiot and shovel the driveway again? umm no bad idea but I will with each day try to have a happy attitude and at least accomplish one thing whether it's the dishes or laundry or cleaning the cat box. I am aware that these are everyday activities but my body hates them and they make me feel like crap. Luckily they aren't life threatening side effects to my heart other than I could pass out somewhere and hit my head or some stupid thing like that, really the only thing it does is weakens my heart and makes my condition worse. I know bad. BUT I have to live. I can't let this stop me from living at all, I have to get up and do at least one thing productive day or I am not living. I am a beached whale staring and moving my head as the little red dot moves and I can't catch it. Time to change my attitude and find the balance that is best for me and right now doctors orders of stay laying down at all times isn't it. I am changing it to most of the time so I feel like I  have a purpose in life and am a part of society. So here I go being a rebel and just sucking it up the best I can. My move of shoveling I will admit lacked common sense and was a stupid idea but I did feel beyond accomplished!

GOOD NEWS FOR ONCE

My pulmonologist who deserves a gigantic award has come through for me once again and said that since he has been in contact with me since DEC 18th he will fill out my FMLA papers from that date to when I got my diagnosis. Thanks God. This doctor puts all the others to shame since if he can then they could have filled it but chose not too. Too much writing or something. So I thank God for coming through for me and this pulmonologist that has been put in my life for a very special reason, obviously.

Now what is pending is my electrophysiologist to redo the papers correctly and my LTD to be approved and social security approval but a huge part of my prayer was answered today so yay for good things to dwell on!

sexy trucks, ugly guys, rednecks and sheep and a little "looking good"

This happened without trying

I am not sure how many people are actually reading these compared to when I posted updates on Facebook. I don't know if I just think that because I don't have "likes" and comments showing me directly that it is looked at but I am going to continue to do it anyway. It confuses me but what doesn't anymore.

I had the joy of reading, comprehending, google searching big words, and eventually filling out the 50 cow loads of paperwork for long term disability and state disability. I mean cows are fat and dumb and the paperwork was too so it fits. I was going to go with sheep but then the minute that thought popped into my head I got the chills and had a minor anxiety moment so that had to change. I will explain my dislike for sheep at the end. never fear I will not leave you to make up your own stories as to my fear of sheep. (A part of me would like to because I feel like that could get weird and I love weird)

Anyways legal type of papers are dumb and confusing. PLEASE PRAY THAT THIS AND MY FMLA WORKS OUT BECAUSE IT ISN'T EXACTLY GOING SMOOTHLY. I went to monster jam last night and it was super cool because I like the sound of loud trucks and destruction. I don't know what it is about loud trucks that is appealing but I know I'm not the only girl who thinks that, right?! someone, anyone?! The only issue with this is then the guy gets of said truck and all of your hopes and dreams have gone on a vaca to Florida when you see what the person behind the sexy truck looks like. Sometimes good and a lot of times bad and on occasion it's a female and you hang your head in shame. Unless you role that way but that's a whole different story. Let me just end my discussion about hot guys and sexy trucks with the fact that monster jam is probably the only reason why mass quantities of rednecks would come to downtown St.Louis.

I lied here is a quote from two rednecks behind us. (the speaker asks those who are firemen, EMT, or police officers to stand.) Two guys behind us stand and one looks at the other and told him to sit down, he complied. Then the real firemen asks the other guy what "service" have you done that makes you think you can stand?" he goes "I don't know" firemen: "Which are you" and this next part made me laugh in a pure drunk redneck voice he goes " shoot I don't know what I am. I thought I was something and they said stand so I did it."

So, yeah I did something fun yesterday. It took it's toll on my body as today hasn't been all that great but worth it. I have been getting the comment "you look good" or "you look better than I thought you would" by a lot of people. This message is going out to everyone besides my parents because they know I might look good compared to other days. I know it is said with good intentions but please don't say it. It comes across as wow you look good so you must not be as sick as you say are or wow you look good and are walking so you must be able to walk "this" well every day or you walk ________ far without passing so I don't believe you actually do pass out. It really comes down to you don't have to look like you are on your death bed in order to feel like it. I might look good with a smile on my face and I am standing up and walking across a room and I don't ever pass out or grab onto something so I don't faint; I may just look like any other perfectly healthy individual but that doesn't mean I am. Just don't say it. Replace it with something like oh it's good to see you out and about or yay you made it or simply ask how I am doing. Only ask if you want the answer and can accept it not being a I'm great in passing otherwise don't try.

I will end with my promised sheep story. My aunt lives in a rural area and they do 4-h fairs. My cousin was raising 2 sheep in preperation for the auction so of course you want your sheep to look good and that means exercise. I know this will be hard to fathom but you put collars and leashes on said sheep and take them for a walk down a nearby gravel road. Well, in true sheep form they had no interest in walking they wanted to stop and eat some grass and had the willpower to prevent us from walking them home until they did so. We perched in the grass and the sheep ate while me and my cousin sat and watched. Of course the one car a year that comes down said gravel road came through at that time and I was trampled by the sheep. I was maybe 11 or so and the fat one stepped on my arm creating a hoof print bruise and kicked me in the head and that began my dislike for sheep and really all farm animals. Now everyone from St.Louis you may now sit and ponder the concept of leashing and taking sheep for walks at this time.