Lemons

You're Invited To: A Pathetic Pity Party
When: Now
Where: Here
RSVP Not Required
Comments kicking me in the butt are more than welcome

I am by no means Pollyanna and I am quite thankful for that because really, when I watched that movie even as a child I wanted nothing more than to find a well to push her into over and over again until she muttered a bad word. No one can possibly be so freakin' happy and cheerful about every single thing in their life all the time and be sane. Or at least survive long without someone finding the above mentioned well and dunking them. But I don't think I fall on the opposite end of the spectrum either where I let every issue and difference be a giant weight that I carry around with me and announce to the world as the town crier, bemoaning the injustices of life. I am somewhere in the middle, most of the time able to just take up whatever has been given to me and go forth into life annoyingly thankful to have been given another day that defies all statistics. However, there are days like today where I become overwhelmingly frustrated with the little things. Rarely is it the big things that cause me to hang up the decorations for an all out pity party (those mental decorations by the way are some black crepe paper, some wilted flowers, and chipped china place settings that don't match). Instead is is the little things that add up and cause an overwhelming sense of frustration. I can deal with the fact that I have a malfunction in my immune system that causes my blood to clot improperly and thus led to my oh-so-fun blood clots in my arm and stroke experience. What is driving me nuts is the inability of any doctor to get the level of my rat poison - err coumadin correct and the weekly scheduling negoation required to get my blood drawn. Unfortunately since I work full time I can not come in at 11:45 am or 1:10pm to get my blood drawn, instead it needs to be at the end of the work day when I can scoot in after home visits or slide out just before the busses show up. How many other 26 year olds have a steady date with the phlebotomist and no dates with guys? I can handle the fact that it takes a small village of chemists to keep me alive, and I don't mind too much swallowing more pills than an gereatric wing of a hospital each day. The issue is watching my hard earned money be eaten up to buy those chemical concoctions and to find out that even tough my insurance has a cap on out of pocket expenses, medication copays do not count. So even though I have way surpassed that cap with copays it is meaningless because they don't count towards that limit. To the CEO of the insurance company I would like to extend an invitation to spend a month in my shoes, in the shoes of any individual with chronic serious illnesses who are working incredibly hard and barely making it because you refuse to cover necessary services or place such high copays on items that we can not afford to get the care we need. I have insurance, and without it I would be screwed, but with it I am just making it. Frustrated. And then there is the mourning of things lost to these dratted illnesses. I hate losing at anything - board games, bets, competitions of any shape and size. I detest losing to these malfunctions of my body and having to surrender even an inch. So having to let go of things that I once loved is a very sore point and a huge frustration. Music is my escape, my haven, my strength and my joy in so many ways. There is one country band - Sugarland- that is my absolute favorite music ever. I have worn out CDs listening to their music. Theirs is the only CD I have in my car and I can sing ever word to every song on their two CDs. They will be in concert about 1 hours from my house next month and I can not go. Money is not the issue (well money is always an issue but it would be pair for if I could go). The issue is that the dysautonomia has stoled this from me. I can not go to concerts, to the theater to see musicals, or to any setting that is likely to be loud, crowded, have lights that flash on and off, that may be off from standard temperature (colder or warmer than normal), or that uses bright lights in a dark setting. I will "crash" - my blood pressure will drop, I will experience what can only be described as a migraine to the third power, I will become incredibly dizzy and light-headed, I will become indescribably nauseaous, I will often have difficulty with vision and balance and the ability to coordinate my own movement, and I will experience changes in my heart rate and rhythm. Fun! Movies viewed in movie theaters are starting to have the same effect and I predict that soon they too will be surrendered. Family gatherings where there is a lot of noise, it is crowded, there is louder music playing, it is warm, people are constantly moving around, there are bright lights, and it is stressful (families are stressful) also cause the same reactions. I am oh so popular with my family for this. I no longer attend most family events, and not just because for years I was the family failure. I have never been inside of a bar or club of any sort because the loud music, lights, crowded atmosphere seems like a recipe for disaster. Even if I were willing to brave the crash, there is the issue of the narcolepsy. My medication allows me to experience life somewhere in the realm of normal living-and-breathing humanity but it has a time limit. Usually by about 8:00pm I am starting to wear down. Yes, my social life is nearly invisible because I have the same sleep schedule as my three year olds. I can push and stay awake later but then I pay for it. Repeat the crash scene above, either after pushing it for a while or in a milder form the entire next day. So I have surrendered my ability to enjoy concerts and movies, family gatherings, my social life, money, and endless time to these malfunctions that I have no control over and that pisses me off. I hate losing. I hate giving in. I hate surrendering. I hate being different. Well, if that isn't something straight out of my middle school journal! Wow, I sure have come a long way in 13 years (rolling eyes). Okay, so now that I have ranted, raved and had a pity party (anyone want another cup of lemon juice? Sorry I didn't make it into lemonade this time.) it is time to kick myself in the pants and snap out of it. I have ten little ones that are expecting a teacher with a wide open heart and excitement about life tomorrow, and I can not give them anything less. I thank God for them, because they truly are my joy and my grace. And I promise that the next time the lemons won't be so bitter - I may suck at making lemonade but perhaps I will make lemon poppy seed muffins or something else. Lemonade is so overrated anyway.

* It is very hard to remain frustrated and upset when your iTunes player randomly starts playing Put Your Finger In The Air (folk music style) because you forgot to separate the music for the Circle Time CD from your own music. And to follow it? Little Bunny Foo Foo. :)

Choices

I have never cared much for politics, which is ironic since I find myself far too close to the nation's capitol for my own comfort. While I fully understand and appreciate the incredible blessings of living in a country that is a democracy, the intricate workings of said government are as interesting to me as watching cogs spin endlessly on an antiquated piece of machinery in a museum. Perhaps it has to do with the fact that I have never been good at lying, and that my negotiating skills leave a lot to be desired (I am a horrid bluff and tend to throw all my cards on the table much to soon)and politics is lying, bluffing, negotiating, and fakery. However, having to face the grown up world without the cushion of mommy and daddy to catch me and without the relative innocence of self-imposed invincibility has knocked some politics into my cobwebbed head. One area is education, which is a debate that I will jump into another day when I have my boots on and see a nice mud puddle. Another is health care. I am used to being poor, with various levels of poor fluctuating as I grew up. I am used to working incredibly hard to succeed and to give everything I have to the things I hold dear. I am not used to having to choose between medication and groceries. I am not used to having to choose which of my medications to take for the next two weeks because I can not afford to pay for all of them. I am not used to deciding my medical care based not on my health and the incredible balancing act it takes to keep me alive and functioning, but based on access to the things that I need most. This is not an issue of having medical insurance because I have insurance from a "good company" and I work a full time, respectable job. It is an issue of what it means to have chronic, life threatening illnesses in a time and place where the cost of living is high and medical care higher. I prioritize my medications when I refill them - critical for life, critical for functioning, required, and not causing immediate danger if skipped. For example my heart medication is critical for life because if I slip into v-tach and fail to reconvert then there is no need to worry about paying for anything else. My thyroid medication is not immediately dangerous because, while life sucks when you are in a hypothyroid state, it is unlikely to kill me within a few weeks. My blood thinners are critical for life - I really do not want to repeat the stroke event - but I am creative with how I add up pills and portions of pills to get to the necessary dose. My medication for insulin resistance and polycystic ovarian syndrome is not critical for life because I have always had normal blood sugars and the symptoms of the POS are annoying but not fatal. I choose which doctors I see based on who can cover the most symptoms and what seems to be the area with the mst malfunctions. I am seriously overdue for cardiology and neurology, and if I confessed to my rheumatologist how long it has been since my last eye exam he would probably withhold my medication until I completed the exam or otherwise make the exam required. Yet I can only afford so many appointments each month and I have to be cost effective. These are the choices that I should not have to make living in America, working full time, with insurance. These are the choices that no one should ever have to make. I had better health coverage when I was on medicaid - why should I feel like I am gambling my health because I choose to work incredibly hard, to sacrifice so much in order to give instead of just take, to follow my dream instead of continuing to allow others to be responsible for me? I may not have the most eloquent words to express the desperation, but when did medical care become a privilege instead of a basic right of humanity? When did the worth of my life, as measured by the care given to sustain it, become equal to the worth of my checking account?

24 Hours

It is amazing the differences that can develop in a 24 hour period. On Saturday I spent the day at a nearby state park hiking trails, enjoying the sweet sunshine and beautiful weather. I ended up hiking approximately 5 miles and the last 1.5 miles was done at an all-out push because I spooked myself. On Sunday I spent the entire day curled up on the couch unable to gather myself enough to do anything more than basic necessities, and even those were a challenge. A shower - forget about it, that was way beyond my capabilities. Microwaving food was a stretch, as was pulling words from some distant part of my brain all the way to my mouth and speaking them. The difference? Two little white pills that my insurance company decided would now require prior authorization before I would be given them. Did I receive any warning? Nope. I called the refill in on Saturday and was notified that my insurance would not cover it until they received prior authorization. Um, my doctor is closed until Monday and I am all out of those little white pills. After muttering a few words I would not use around my little ones I tried to call my insurance company, only to be told that they would open at 9am on Monday. Well, without these pills I cannot drive and it would not be wise for me to be responsible for other lives. Crap! I had to take a day off of work because my insurance company sucks!! So today once I could force my body out of bed I made a few phone calls. By 11:00am the prescription was filled. After making those phone calls I promptly fell back asleep on the couch until I used every effort to force myself awake at 2:00pm. Then I had to tackle the shower - I never knew a shower took so much energy. I will not reveal how the medicine got from the pharmacy to my house, only that it is here now and tomorrow morning I will blessedly return from the world of the sleepwalkers to a real live person. The reason I did not purchase the prescription out of pocket - those precious little white pills cost somewhere around $10 per pill and I take two a day. I don't happen to have that kind of money lying around. Right now I am functioning at a minimum because of the three pots of coffee (4 cup pots) that I have consumed since 2:00pm. Oh yeah, great for a heart that is prone to arrhythmias!! But its either that or I hibernate until morning. These pills are the only reason I can live anything like a normal life, and I am so appreicative to be living in a place where I have access to the "village" of medications that it takes to keep this damaged and dysfunctional body working. It is truly better living through science!! And I am sure that tomorrow morning when I am able to take my medication, the difference in the 24 hours between then and now will be just as amazing. what a difference a day makes...

Invisible

I am both incredibly blessed and incredibly cursed with the fact that even though millions of cells inside my body have decided to try to overthrow the establishment there are no outward signs of war. There is no way to look at me and tell that it quite literally takes a village to keep me alive - a village of doctors, nurses, phlebotomists and lab technicians, pharmacists, drug manufacturers, chemists, researchers, and of course family members and friends. It is an incredible blessing because I am allowed to enter into the world on the other side without notice, I am able to keep secret all that rages inside and create an illusion of normalicy. There is an opportunity for others to see me and know me before I reveal to them the rest of my life. I can be more than the quick label of "the sick girl" or "the girl with lupus". Sometimes that illusion is a wonderful blessing because it is an escape for me, a chance to let myself completely forget this reality and submerge myself in the world beyond, in a place where life is not such a balancing act and there can be an easiness. Yet sometimes the illusion is a burden and a weight. When I am having a hard time it is difficult for others to comprehend what is going on because on the outside I appear no different. I am able to "fake it" through the day so it is hard for others to understand why I then go home and collapse into exhaustion instead of going out, running here and there, and being social. Being a good actress and unblemished by the war within makes it confusing - I can chase after my little ones all day and dance with them at circle time but I can not manage to join in with something after work? How do I explain just how much it costs me to do my job, to do what I love and to give everything I have to those little ones every day? How do I decide where the balancing point is in revelation - how much do I share so that others understand who I am and where I am coming from and how much do I keep hidden so that I can have some pretense of normalicy, some refuge from the pity that I detest? Sometimes I think it would be easier if there were something visible that let people know what I have to throw into my bag and carry along each day. Not because I want them to treat me any different, but because then maybe they would understand why I am the way I am - why some days I have lots of energy and others I am just trying to make it through, why I don't always participate in events, why it seems like I sometimes keep to myself, why I am so determined to live here and now, why I can look so good and feel so bad. And then I am thankful for the fact that in spite of everything I do look so good and it is so invisible, for the fact that I can hide it and go out into the world and live at least part of my life as if there were not those issues, for the fact that what looks so horrible written on paper looks so much better in person. A curse can be a blessing, a blessing a curse, amd both a gift when they are invisible.

But I can't Juggle...

Tomorrow I have an appointment with a new hematologist (also an oncologist). My first reason for going is that my current primary care doctor has been unable to control the rat poison levels for the Lupus Anticoagulant and I am getting tired of changing doses so often. I am also tired of having to drive so far for a finger stick, especially when the level is never right. When I moved here my level was stable and had not needed to be adjusted in 6 months - it has not been stable in over a year. So task one is to get the PT/INR under control so that it is safer and I can stop spending half of the time hiding bruises. The second reason for going is that no one seems able to explain these lumps that continue to make their presence known and I would like a final answer. I am hoping that it will be easy to determine that they are benign and they can be dealt with without any major difficulty. I just need concrete answers. Especially with the lump on my ribs now sticking out close to an inch when I take a deep breath in (when my ribs are most prominent) and my ribs are aching more and more often. I am feeling like a broken record here - and if I could not actually see these lumps I would question my sanity. I am hesitant to say too much about them tomorrow because with the scans not showing enough to be helpful I am unsure what he is going to think, but I need someone to be willing to help, to find an answer, and to not be quick to dismiss things. With my history I am often a doctor's worst nightmare - just taking a history takes forever. Ugh! Sometimes I wish that I could just deal with "normal" things for a while - but then I realize that this is normal for me. Normal is juggling what you have been given and praying that whatever you drop is going to bounce instead of explode. So I am tossing things up into the air like mad, trying to catch them as they fall, and desperately praying that whatever I miss bounces instead of exploding into chaos all around me. Sounds normal to me! With that in mind I am going to throw tomorrow's appointment up into the air and we shall see if I catch it, if it bounces, or if it explodes. If you happen to see me running, try to keep up!! :)

Suck It Up And Deal

Have you ever seen a dog that has been chasing its own tail around and around in a circle and suddenly discovers that it has managed to catch it? That look of confusion and shock and total bewilderment as to what has happened? And you know the dog is wondering how the heck it ended up with a nasty hunk of fur in its mouth when it was chasing this wonderful glimpse of utopia just a moment before. Right now I am spitting fur and turning slowly in circles trying to make sense of everything. This week has been the standard chaos of getting ready for the return of school, only with the added enjoyment of having to unpack an entire preschool classroom inbetween meetings and home visits and more meetings and calling parents and reviewing files and more meetings. Unpacking a standard elementary school classroom inolves probably a dozen boxes, a few tables, some files, and desks. Preschool, we are like your grandmother who comes to visit for a week but brings enough crap to stay until the end of the decade. We had literally over fifty boxes not to mention all of the equipment and oversized items that would nto fit into boxes. Imagine trying to keep up to 12 young preschoolers entertained for 4 hours a day five days a week for 9 months out of the year in a single room without television, without DVDs, and while instructing them in meeting a whole laundry list of goals. It takes a LOT of stuff. Our art supplies alone fill two cupboards and three drawers and we have more somewhere. I also had the pleasure of assembling several items, and let's just say that when they fall apart I pray no children are in the area. My building skills are relegated to towers of wooden blocks that teeter and fall when a child breathes on them. School starts Tuesday morning and our classroom is not ready. It will be in "fake it" ready mode by the time the bell rings, after I arrive at 6:30am and work my butt off, but it will not be anywhere near where it should be. At this point it is the best we can do and any complaints can be directed to anyone but me. I worked my butt off and endured two autonomic crashes to get the room even functional. Besides, the first week is chaos no matter how well you plan and how perfectly every toy is on every shelf and every picture on every wall. It is about getting to know the children, establishing a routine, and calming down the incredibly protective and concerned parents (I understand that they are giving me their children for 4 hours a day and I really am honored, I take my responsibility very seriously, and I will do almost anything to make the transition easier but hovering in the room the entire first week - so not helping here!). I do need to find or create our picture schedule as soon as possible and get some picture symbols out for children to use. Fine details, like labeling the centers and toy shelves, can be done during the first few weeks. I am working with a new teacher and a new assistant who have not done this before - I am only one woman! :) Besides, I really want to get to know my little ones more than I want to worry about having the pictures on the shelves or the schedule just right. I would rather establish a great relationship with them from the beginning than have an immaculate and exactly organized room. I can organize, label, and "pretty up" the room anytime but I can only form that inital bond with them once. I have a great group of kids this year and I am so excited. I do wish I had taken Spanish in school instead of German because I don't forsee needing to order a beer or a prostitute anytime soon (the extend of my German - bad teacher!) but I could really use the ability to talk with my little ones!
Along the lines of having to just suck it up and deal I finally made an appointment with a hem./onc. The first reason is because my current primary doctor is holding my rat poison (coumadin) hostage until I have a PT/INR done because I am slightly (two months) overdue. Details, details. It is just too inconvenient to drive 45 minutes each way for a fingerstick, especially when he can not get the blasted level stable anyway. This doctor is ten minutes way from where I live and hopefully can get things balanced. Second reason is the fact that no matter how hard I use my magical thinking I cannot make the lumps and bumps disappear. My ribs hurting is getting a little annoying when I am trying to work in the classroom and I need to know that it will not progress to the point where it makes it too hard to lift children. I also would really like an answer as to what these things are, but that might be like asking for the winning lotto ticket at this point. So as much as I want to just ignore them and pretend they are not there I need to address the issue. Summer break was nice but it is time to get back into life.

On Paper I Should Be Dead

Earlier this week I called in one batch of my prescriptions to be refilled at the local pharmacy and after work on Thursday I decided to make a quick trip through the drive through to pick them up. There's nothing like taking the last dose of your anti-narcolepsy medication to encourage you to get your butt to the pharmacy. So I pulled up to the window and was greeted by someone I had never seen before. Ahhh, the innocence of fresh meat. I provided her with my name, spelling it out carefully to avoid the issue of "we don't have anyone by that name in the computer". She then asked me how many prescriptions I was picking up. With an evil glint in my eye I told her that there shoudl be somewhere around eight or nine but that when you are calling in that many prescriptions late at night you tend to lose count. Blinking she backed away from the window and headed off to find my stockpile. Returning she held up the bags and informed me that there were seven (my doctor is holding one hostage until I show up for labwork - go figure, two months late and he becomes a little testy). The price seemed to send her pretty brown eyes spinning just a bit and I asked her if they ever had a buy one get one free sale. It was when she ran my debit card, with my picture and name on it, that she made the connection that all of the medications were mine. I could see the exact minute because those brown eyes just about smacked into my car windshield. She gasped and stuttered out "Are all these medications for you?!?". I nodded and with a wicked grin replied "that's not all of them either." I then calmly returned her eyes to her so she could print the receipt. I used the standard line to reassure her, "I lost the genetic lottery" and then left her wondering with the parting line "Don't worry, on paper I should be dead". Something tells me that the next time I need to pick up a batch of medication, I will not need to spell my name for her. :)

Magical Thinking

Yesterday I ate dinner at 8:30pm because I had been working at school all day and managed to trigger a decent autonomic crash by the afternoon. Normally that would have meant that the rest of the day was spent lying either in bed or on the couch semi-conscious but yesterday that was not an option. Instead I chugged an incredible amount of caffeine to try and force my blood pressure and heartrate back up towards normal, took a dose of pain medication to try to combat the incredible headache, and laid flat just long enough for everythng to balance again (i.e. vision to return to normal from headache, shaking to stop, headache to settle to a dull background noise). Then it was back to work. I love my job and would never want to do anything other than teach/work with children but this is a job that has no set hours and that you almost always bring home with you. I finally stopped working around 11:00 pm and crawled into bed. I was awake at 5:30 am. I predict that my body has at least one attempt at a temper tantrum today because against my will it demands a lot more sleep than it got last night. Today I will be prepared with caffeine and tylenol in my bag (tylenol is kind of a joke but I refuse to take anything stronger at work). This week before school starts is spent chasing yourself - a meetinghere and here and here, a parent visit there, an entire classroom to unpack, an assistant who has never worked with preschool before and has no idea what she is in for this year. I am really regreting the three years I wasted takig German in high school and wishing that I had been smart enough to realize that I would need Spanish a great deal more here in America than I would need to be able to order a beer an a prostitute in Berlin (my German teacher is a whole other long story).
So amidst all of this chaos I am working hard at the magical powers of my mind. As long as I do not accept that my body is revolting against me then there is nothing wrong. I do not have time to be sick, I do not have time to deal with these tumors growing, and therefore it is not occurring. As long as I believe that there is nothing wrong then there is nothing wrong. Sounds good to me. Besides, I have no idea how I could afford more doctors appointments and tests and medications. I am blessed to have decent insurance but the copays are breaking me. Teaching is one of the greatest professions with the greatest rewards, but they are never monitary. Maybe I will stick a toe back into reality once the school year has started. Once the kids are in class, the parents are comfortable with the class, and I have a schedule down. Maybe then I can add one more thing to my juggling routine. Until then I will practice the great powers of my mind...and maybe just a hint of denial?

Not on the First Date*

I am old fashioned, quaint, simple, whatever adjective you would like to use. It is my practice to not allow strangers to undress me, most definitely not the first time that I meet them. So how I ended up lying perfectly still on a table on Friday while two complete strangers removed my pants is quite the experience. My first sign that perhaps it was not going to be the best day for critical medical testing was when I wrote down the date - Friday, July 13. Nice! How did I manage to schedule these tests for Friday the 13th? I am usually not superstitious but that just seemed like a glaring "Hey Stupid! Here's Your Sign!" to me. The next hint of the fun to come was the fact that it took 1 hour 40 minutes to find the place that was 40 minutes away. Thank you google maps! I was lulled back into complacency by the fact that the Chest CT went according to schedule. The nurse/radiologist even got in a great IV on the first try - that counts as major bonus points for anyone. Even more points for the fact that there is only a tiny bruise two days later. So I then head over to the MRI building. I am convinced this will be uncomfortable but not bad. I forgot that this is Friday the 13th. I forgot that this is me - that I am a lightning rod for freakishly odd things and stupid mistakes. So they call me back and I am expecting to have to change clothes (I bring a change of clothes because I have issues with hospital gowns - lots of issues with hospital gowns). Instead the girl says that I should be fine even with my very metal pants (lots of zippers and buttons) and my very metal belt. I question this but she is confident. Mistake #1 - I should have insisted on changing into my non-metal shorts that I brought along. She then leads me into the room where my wire framed glasses are confiscated and my sneakers that have tiny metal rims around the fasteners. Mistake #2 - not insisting I return to the changing room and put on my non-metal shorts. So then the fun of positioning begins. I ended up lying on my left side (painful thanks to the knob, blob, glob, mass on my ribs/chest) with my left arm extended out along side my body rotated palm upward and my body touching my arm but rotated slightly away. Sound confusing? Yes. Sound painful? Hell Yes! I am ever so greatful for every pound I lost over the past year because I do not see how I could have fit if I weighed another 5 pounds - and I am padded but not "Oh My God" fat. I can shop in either regular size sections or "Fat Girl" size sections depending on which has the best sales. :) So back to the MRI. As I enter the MRI the magnet discovers my belt and suddenly my hips are being lifted off of the table. I feel like David Copperfield only a bit afraid that this could end in disaster. Mistake #3 - I should have yelled for them to turn off the machine and let me change into my non-metal shorts. I somehow levitate into the machine and plop back onto the table. They begin the testing and come back in to try a new position because the images are funny. Hmm...metal pants anyone? So we repeat the levitation experience and I repeat Mistake #3. Finally they come back in and tell me that I am going to need to change into a gown (wait, I have non metal shorts people!) because there is too much metal on my pants. Okay, did I not say that way back at the beginning? Then the older woman says she has an idea but I am free to say no. If I am willing, they can help me take of my pants without unstrapping my arm and cover me with a gown (I HATE GOWNS) and then we do nto have to realign everything and we can just finish the test so much faster. By that point I would have sold my family members to have the test done because my left arm was cold, numb, and no longer responding as a part of my body. My left ribs were very much telling me they were a part of my body and were not going to allow me to forget them. My right shoulder and hip were joning in because I could not move them as they were either pressed up against the machine or strapped in place. Thus my dignity went out the window and I was stripped by wo complete strangers whom I could not even see because my glasses were safely outside the pull of the magnet. Thank God I had on nice underwear! :) 30 minutes later we were finally done and I ended up wearing the stinking gown and carrying my metal pants back to the changing room where my non-metal shorts were neatly waiting in my bag. When I was handed my pants the girl warned me to "Be very careful! Do not walk too close to the machine while holding those!" Um, sweetheart, you put me INTO the machine while I was wearing them! Thank you for making me feel so safe. I hope you enjoyed looking at my pink flowered underwear. You should feel special because usually, I don't do that on the first date and you are SO not my type! Now the cute guy behind the desk.... :) I should get the results from the testing on Monday and we can figure out what to do from there. Based on the increasing pain and the fact that the third lump that the doctor did not officialy diagnose is growing we need to do something, and pretty soon. Also there is an area on my back, around from my chest lump, bump, knob, blob that is really hurting. I am hoping it is referred pain from a nerve being pressed on around front. Honestly, I am scared. The masses are now not only palpable but visible on my arm and chest. This sucks and I am trying to hold it together. I just want answers and a plan. And to not have to show anyone else my pink flowered underwear on the first date. :)

* This is a rewrite of a post I put up yesterday.

Sharp Left Turn?

tumor
noun
an abnormal new mass of tissue that serves no purpose


tu·mor (tmr, ty-)
n.
An abnormal growth of tissue resulting from uncontrolled, progressive multiplication of cells and serving no physiological function; a neoplasm.
A swollen part; a swelling. (Thank You Dictionary.com)

In general I love words. I devour books and consume anything that I can read. Words are the most powerful beings to me, the things which allow me to comprehend and to explore, to express myself to and delight in the world around me. There are dozens of notebooks throughout my life and my home filled with words that have poured out of me. I never wanted to write the ugly word above. Sometimes it is absolutely awful to be right. For months I have been trying to tell my doctor that the lump, bump, knot, knob, blob, pain in my arm is growing. First it was nothing. Then it was the lymphadema and scar tissue. Then my side started hurting. Then it was the Lupus because both sites are over bones and muscles. Then there was a swelling over my hip that could have been a lymph node so it was scanned but since nothing showed up forgotten. Then he finally decided to do an ultrasound on my arm because I was insistent and my arm is significantly larger than the other. Oh, and I have a blood clotting disorder that places me at high risk for blood clots even when on proper medication. Only problem was that the soonest available appointment was four weeks away and he was fine with that. Enter my second opinion - a visit to the emergency room which cost me $100 but proved there were no clots. I also visited the rheumatologist and proved that I have no active lupus or autoimmune disease at this time. I had the second ultrasound done that showed nothing and he was content to write it off. Umm, No. By now my arm has a clearly visible and palpable lump, bump, knot, knob, blob that anyone can feel - it is between a shooter marble and a golf ball. My ribs have a definitely palpable lump, bump, knot, knob, blob that anyone can feel - it is more like a golf ball. Both hurt and are growing.
So I made an appointment and went in today. For the first time he really felt them. A little light bulb went on over his head. I am not losing my mind. He thinks they are lipomas but they are definitely masses, tumors. Gulp. I asked how we could know for sure and he said that the only way would be a biopsy with removal of the whole thing and did I really want that? Um, right now Hell YEAH I want these things out! I know that with dysautonomia and the Lupus Anticoagulant and the PFO in my heart I am a surgeons worst nightmare. I know that with the fact that I do not respond to anesthesia and sedation this would be quite tricky. But every cell in my body is screaming - get them the hell out of here! He was content to call them lipomas and smile. Um, nice try buddy boy but they are growing in me and I am not letting them move into the neighborhood without a background check. He said it would be difficult to convince the insurance - like I really care about the insurance right about now? I will argue with them and do whatever is necessary but that should never be the deciding factor in doing what is medically necessary. He decided to ask a few more questions.

Do they hurt? Um where were you a few minutes ago?!?
Are they growing? See above. My real response: "Um, yeah. The one on my arm is definitely bigger and, well, six months ago there was nothing on my ribs."
Anything Else? Yes, it hurts to take a deep breath now.

Those three seemed to get his attention. I have a CT scan of the chest and an MRI of my arm in two weeks. Two weeks is not bad when looked at from the outside, but from in here - I want them to be tomorrow. I want to know now. I want answers. I want to be on the other side of this not knowing. Is this a speed bump or a sharp left turn? Will this be a minor detour or an alternate route?

All of this was written without stopping to think about it, edit it, or any of the normal things I do when I write here. It is raw emotions. For better or worse raw is all I have to offer. For the next two weeks I will do what I know how to do - dust myself off and live in the moment. I may just live those moments with even more passion. Sometimes the best scenery is along the detour you never intended to take.