the best kind of sunday.  not feeling so so great today so it was actually perfect that my day consist of sitting on the couch and reading the entire day.  ny times, a good book, listening to the thunder.  not bad.  my back and neck always hurt. always. i am so grateful the terrible hip pain has gone with the presence of the roids, but this back stuff is really getting to me. always in pain. i did not fall asleep last night (well, this am) until 630 and woke at 10.  and we know that makes for a cranky girl.

friday’s appointments did not leave me in the frenzy that i usually find myself in after meeting with dr. S but just the same, i am always disturbed after leaving the doctor.  the most disturbing fact being that they JUST DON’T KNOW. i have to accept, and just be OK with the fact that there is no plan for dealing with my “illness” —or what i like to call my great mystery.  at least not according to traditional western medicine.  the one thing i do appreciate is that they were not “BS”ing me.  they are perfectly straightforward about this fact that “there is no road map as to how we treat Lauren” and “we are just going to take things as they happen”.  Basically, the plan is to just keep lowering the roids until I start to feel crap again and then they will keep me on the lowest dose possible at which I feel good at.  This is the big plan for now.  In the greater scheme of things they would like to take me off the chemo drugs but it just can’t happen now.  Too much at once is a bad thing.  So, I wait.  I wait with no choice but to slowly lower the prednisone month by month, and observe my body daily.  I have to be extra careful that I take care of myself and watch that I do not get sick considering the roids and the chemo drug suppress my immune system.  so much to think about!   the neurologist brought up dr S’ concerns on friday and i found it very interesting that he was so candid with me when he said something along the lines of:  well, i don’t blame your doc for 7 years being concerned, I mean, “we give prednisone like water” and “we do not worry about these other problems (side effects) until we are facing them”.  statistically speaking you should be ok but we don’t really think about the bad stuff unleess we have to face it.  awesome. i feel safe.

i left yet another office, once again, probably for the thousandth time, feeling alone.  me and this mystery of mine. just alone. like i am the only one who is going to make ME better.  that’s my best bet.  i only trust myself.  sometimes i let these thoughts wear on me and i start waxing philosophical and get myself sad and scared but i am kind of over that for now.  i am back in fight mode.

which brings me to lauren’s plan.  yes, keep on the roids becaus they get me out of bed.  but, i am going to use them to work on this bod of mine.  that means yoga, acupuncture, chiropractor, eating right, etc…  i am going full speed ahead on the alternative healing route.  i am in this position again where i find myself to be this “healing junkie”, where i will try (almost) anything if it promises relief or healing.  whole foods here i come tomorrow, i have tons of appointments this week including my restorative yoga on tuesday that i find my body craving.

so, here’s to a great week and great results.  here’s to a week of treating our bodies, maybe we can give them all a break —they work so hard for us!  whether it’s a nap, or a salad instead of those french fries as a side to your burger, this week i am all about making it easier on our amazing gifts.

i think i must have been a very difficult person to live with this week. something about the roids, they were in full effect. totally moody, irritable, and constantly uncomfortable. my body aches and pains were back —not as bad as pre-steroid but always there. there’s something about ALWAYS being uncomfortable that can really drive you crazy! no matter what position i was in, anything i tried, just didn’t work. i hadn’t slept through a single night until last night… FINALLY! which makes me a very happy girl today!

yesterday morning i began my new schedule of restorative yoga once a week. yes, i actually dared to set a schedule and i am going to stick with it! i am so so so happy that i’ve decided to give this a try. it was amazing. restorative yoga is meant to do just that… restore! your instructor puts you in these poses (you’re basically propped up on pillows and blankets) and then you hold the pose for awhile as your breathing is guided. every single position i went into brought relief for my back and i went into a trance with each pose, feeling the energy going to different parts of my body. i know i’ve only done it once but there was a noticable difference yesterday… all day long. i was not uncomfortable, and i had a new kind of energy. i felt relief and happiness and i cannot wait until the next time. i feel like this is going to be a great catalyst in healing my body and getting it strong again. that is my main goal: repair and then strengthen. i am tired of feeling like a wimp!

so today i am off to columbia. seeing the rheumatologist and the neurologist and i guess devise a plan regarding the steroids and what to do now?! i have lots of questions for them both and i am curious to see what each one has to say. one thing is for sure, i am asking to ween of the roids because the dose is just too strong for me. i can feel my heart pounding which scares me, and the sleepless nights have to stop. i love being able to walk around but i must find some happy medium. two nights ago i was literally losing it, antsy, irritable, pacing back and forth in my living room. couldn’t sit, lie down, nothing made me comfy. when things get like that it makes for days filled with anxiety. then i have dr. S in my head and all of his scare tactics, and they get to me. they really scare me. he scared me into thinking that i have a lung infection, and then my imagination just goes wild from there. i am pretty traumatized by how he chose to handle our last meeting. and for that, i have no problems seeing this new rheumatologist. eventhough dr. S portrays him as incompetent I much prefer a doctor who doesn’t scare me.

i am hoping to keep the peace and relief from yesterday’s yoga with me today. full report on the doctors visits later on today…

happy friday!

it’s been almost a week since i wrote when i was in that waiting room at dr. S.  i took a mini break partly because i was so confused and annoyed when i left there that i had to get my mind together, and partly because i just needed to be away from my computer. i wanted away from email, from blogging, just to feel far away.

to cut to the chase, dr. S did exactly what we all thought he would. he seemed genuinely concerned for me as i sat there but as i thought about what he said specifically over and over again during the past week, i can’t help but wonder if he was giving me the worst case scenarios and scaring me more than he had to.  i feel like he puts on this show. i left that office terrified. he highly disagrees with the dose of prednisone i am on.  he cannot believe that my immunosuppressant drugs were not altered and he said that i should be on an antibiotic as protection because the steroids suppress your immune system as well. he just couldn’t believe that this doc did not have me on antibiotics, i could get a lung infection!  he kept saying it over and over. he told me about this liver problem i could develop, kidney probs, etc… shook his head a lot. told me to get a third opinion.  also told me he wouldn’t touch anything —basically that doc got you into this mess let him get you out.  he wrote a letter to my cardio at Columbia explaining his concern and he urged me to speak to her about my dose.  he “couldn’t imagine it would be good for my heart.” when i called her the next day she says she “defers” to my new rheum at Columbia and she trusts him.  i really trust her, so do i then trust him?   all of this is so confusing. still so irritating.  who is right, who is wrong? what am i doing?!!

well, i see the rheum and the neurologist at Columbia on friday. BUT, i was so scared when i left dr. S that i did something i shouldn’t have:  i lowered the dose on my own slightly. i couldn’t take the strength anymore and it didn’t feel right to me.  i know i am supposed to ween but i cut down by 15 mg per day and have kept it at that dose since.  the panic attacks were becoming too frequent and i just can’t sleep at night and to be honest, dr. S got to me. ugh.

i do know that i am still walking around and not spending entire weekends on the couch in pain.  that, alone makes me happier than i can put into words.

i need some sleep.  i hope i sleep through the night!

good night.

awakening!

i use this word because i had an amazing weekend. i was … able to… walk AROUND! saturday night i got back to the apartment at around 9 pm from a day of experiencing one of my most favorites places in the world: downtown nyc. i smelled like i was walking around a hot manhattan all day: layers upon layers of the city covered me, the bottoms of my feet were black, and my sunglasses sat atop my head trying to tame my wild-from-sweating bangs. i couldn’t be happier; give me dirt and dust from the bus vents and grime from the backs of taxis any day. smoke from passing pretzel stands and the smell of gray’s papaya, the samples at whole foods, the argentinian restaurant on my corner, the music from our lunch still ringing in my ears, sweating in the city sun as we walked down the bowery wondering what the heck is happening to this place… i felt like a child! and the whole time i walked around i couldn’t help but think, thank you steroids for making this possible. thank you for making my legs feel a little lighter, for making those pains in my hips go away, for making my head feel more managable to balance on top of my neck. i couldn’t stop smiling. this is what it FEELS LIKE TO FEEL GOOD! and then cut to the bedroom scene, i curse the roids as i lie awake sleepless both nights, with my heart racing and sweating. what a love/hate relationship we have my fair prednisone. such a clever little game you play.

it all began when i (FINALLY) went to get contacts, a fete i have been attempting for years. turns out i am way more blind that i would have like to have thought, and it was really starting to affect me. i was getting very nervous as of late when things were becoming more blurry than normal. oh no! could this be something new? something with my heart? my nerves? is the scleroderma affecting my brain? migraines? am i fainting? why can’t i see when it’s dark out? i go down a long list everytime something happens and i panic when really it could be something as simple as bad vision! yup, plain old bad vision. phew.

glasses make me naush so off we went to get contact lenses. it was a huge deal for me, someone who cannot even put drops in her own eyes and even now, 3 days into putting on and removing contacts, i still get a gag reflex when i touch my eyeball. i definitely thought i would vom dot com in the office the first time the doc stick a contact into my right eye. but, it was like having new eyes! walking around with my new contacts all weekend only added to my exhiliration, my love for each and every single step, every single moment. street sign by street sign.

as i lie awake both nights (including last night until about 4 am), my brain buzzes. i worry worry worry, and i decide that the roids are still way too strong for me so i took it upon myself to lower my dose as of today. i simply can’t sweat and have the jitters anymore. i get terrible panic attacks and it’s not subsiding. if i’m not doing crazy things to disperse my energy, then i am a rubberband ball of roid rage. plus, i am always always scared of them. i have an appointment with the new rheumotologist at columbia and a neurologist next friday. by then i hope to be discussing what our next steps are, and when i can expect to fully ween off these things. i love having (quality of) life, but i can’t shake this feeling in the down time that i feel icky from the roids. it’s a constant battle. i am always uneasy.

today i was pretty tired and worn out, and my stomach turned into a knot when my phone rang around 5pm only to show Dr. S’ number. I feel like a student getting called into the principal’s office. I was afraid to answer. Turns out, he wants to see me. Tomorrow!!!!!

I agreed to go, and I have been pumping myself up ever since. Stay focused Lauren! Stay strong, don’t let him bully you! I want to stick to what I want to say and not end up getting yelled at again a la last Tuesday’s phone convo. i agreed to go and see him and that’s because i want to be clear about parting ways with him for now, i want to be clear about what i should do about my methotrexate (the immunosuppressant drug he has had me on for going on 7 years now), and i want to sit face to face with him and have a doctor-patient discussion. he owes it to me. only, i am so afraid. afraid he’s going to make me paranoid about the fact that i am on roids, scared to see other docs, etc… the best part about it? he’ll have no problem charging me $250 to go and speak with him. criminal activity on the upper east side at it’s finest.

until tomorrow…

send me strong vibes to hold my own with dr. S! let’s hope this all goes smooth.

here’s to a happy summer week for everyone.

i’m not really sure if now’s the correct time to write about this because i am completely CONFUSED.  so, if i ramble a bit i apologize in advance.

as we all know, making decisions when it comes to my health (especially most recently, when it comes to medications), i do not take it lightly.  it is very important to me that i feel informed, read a lot, do research; visit websites, support groups, etc..  i can’t say enough that my health IS my full time job.  i am very dedicated to it and as we all also know, the most frustrating part of my entire experience of the last year has been the healthcare (well, lack there of), and the countless doctors i have come into contact with.  it’s terrifying how many are just not good at what they do, they have terrible bedside manner, and most of them should just stop what they are doing and go away.  there are wonderful ones few and far between and they keep me hopeful but today i had an experience that brought me right back to my countless nightmares of the past year. and here i am, brain buzzing at 2 am, and i am a wreck.

we all can see from previous posts below i FINALLY decided to take the prednisone after much thought and of course, after getting an opinion that i was comfortable with at columbia.  i felt they were very efficient and i didn’t mind the muscle biopsy and other icky tests if it meant gathering as much information as we needed.

cut to today.  i am so upset, so confused, so … desperate again.  desperate for answers. the right answers —if they even exist.

we all know about dr. S. my rheumatologist of 7 years.  the one i was not comfortable with since last year when i went to him repeatedly over the summer complaining that i was fainting and he actually told me it was probably just anxiety (funny, turns out my heart was deteriorating). i don’t like putting blame on people, it’s useless, and at some points over the 7 going on 8 years he has helped me. but, i felt it’s time to have someone look at me from a fresh perspective. there are new things going on, serious things, and they seemed to be spiraling out of control; getting worse and worse.  dr S. even admits to me in his office that he isn’t all that familiar with “heart stuff” and i’m sorry, i need a doctor who may like to … learn? get involved?  relief came in the form of an informed team at columbia who all seem to speak the same language.

cut to today.  i cancelled an appt with dr. S this week and i received two phone calls from his office.  i had not called since my stay at columbia, i assumed he was brought up to speed by my docs over there as they said they would.  i told all doctors at columbia that he treated me for the past 7 years and i thought they were sending him all information.  i called dr. S back after two voicemail messages and we finally spoke this afternoon.  it was basically one conversation of raised voices through and through. heated conversation.  and looking back, i am angry at myself for being such a wimp but i was in SHOCK.  

he was “infuriated” that not a single person from columbia called him. he never knew i was even in there.  he was saying how amateur and unprofessional this is. when i told him i had an EMG (muscle test) as well as a muscle biopsy, he told me that they wasted my time.  he could not believe that they put me through all this for “nothing”.  he chuckled at it in disbelief.  he could not believe that even though there was no inflammation found in the muscle biopsy my new rheumatologist suggested prednisone.  everything i told him he shot down, angry, and it made me feel awful. it made me feel terrible.  when he asked how big of a dose of roids my new rheumatologist suggested i take, he was in shockto hear 50 mg per day , and said “that is the very last thing i would ever give you” “that is a large dose”  and “it can do more harm that hurt to you right now” “it causes myopathy of the muscles”  i had a sinking feeling in my stomach and i absolutely did not have the guts or where-with-all to tell him i’d been taking them for 10 days now.  i was speechless, confused and so intimidated (if that’s even the right word) that i couldn’t think.  all i could do was be sad and wonder what the HELL is going on?  this guy is telling me everything opposite of my new guy!  and what did he have to say about the new guy??  he is an amateur, basically, and he is not fit to diagnose me because what dr. S does is “sophisticated rheumatology” (yes, he used those words), and this other dude can only diagnose simple things.  i have never ever heard anything like this.  doctors will never talk smack about each other.  dr. S even went as far to say, well Lauren, if you want to leave me and see a rhem at columbia, i would send you to a more senior, more experienced doctor —-he basically told me a couple of times this guy has no business diagnosing me or doing anything especially since he never bothered to call dr S for my background.  

now, aside from the fact that most of this phone call was his large ego spewing out negativity and telling me how unprofessional the columbia team is, it really messed with my head. BIG TIME. who the heck do i believe? who the heck is right?  i went with my instinct and now this dude is telling me that this is the worst possible thing for me…. WHAT DO I DO?? at some point in the convo he even said to me “you know i care about you Lauren”. really?  cuz i really never got that.  i mean, almost 8 years and i am worse than ever, and i’ve been complaining about terrible intense pain for over a year and you’ve never done a test on my muscles?  are you THAT GOOD dr. S?  are you psychic?  aaaaahhhhhhhhh!!!!

and apparently, it is my responsibility to get dr. S all of my test results from columbia.  i really did think that he was kept in the loop during my stay at columbia. and why do i have to be responsible for calling him from a hospital bed? why is it my responsibility to coordinate the test results?  he has a large staff!  i mean, i am appalled, confused, wondering if i am doing the right thing, wondering if i even take these roids tomorrow.  lost.  lost lost lost.

one thing i have decided is that i am calling my new rheum (you know, the inexperienced dude who doesn’t know what he’s doing according to dr. S) tomorrow to tell him all of this.  i do not know what else to do.  i don’t even know where to begin.  i want to scream.

actually, i did scream when i got home. and then i sat in my garden and thomas and i stared at each other in amazement for a long time.  tired eyes, tired faces,speechless, exhausted from this run around: exhausted from a year of wrong answers, misdiagnoses, many many doctors, hospital trips, procedures, scary nights, rough days, consecutive days in bed, needing help to shower and go to the bathroom, never getting relief from a docor, never feeling safe in their hands !  we are feeling so helpless. how much more of this can we take?  who the heck are we supposed to turn to?  who the heck do we listen to?  this is my BODY we are talking about. my life.  

and now i’m supposed to sleep?  seems impossible.

i am trying to stay calm and positive and not even pay attention to the BS surrounding the real issue here. and that is: who is right? who do i listen to? i don’t even have a gut instinct on this one.  i am completely clueless. if it weren’t for my amazing Kicker i would not believe in western medicine at all. 

sigh.

hope the long weekend was restful and sparkly for everyone.

2 am sunday night/monday morning.  totally awake since i took my roids late this afternoon.  they make me quite speedy and anxious so the later i take them, the later i get to bed.  two days into taking them and i felt it, that unmistakable “buzz”.  the roid rage was definitely apparent and the total body pain has been growing duller by the day.

i am happy i made the decision to start the steroids last tuesday.  i decided that i would take them as a means to getting to where i want to be. meaning, they are not my answer, rather just a helper to get me out of bed and building up my strength and you know, not wake up and want to cry from pain.  that’s a big one.  so far so good, only i have to learn to watch my body.  on friday i had some friends over and while i felt great, on a roid rage high with lots of things to do and cleaning up afterwards, and so busy and ooh what else can i clean?! —and then bam!  sat morning i paid for it. actually, the rest of the weekend my body has just been jelly.  very sore and weak.  i have to learn that i can’t do it all in one day because i am just not ready.  but, i was still very happy to be able to accomplish what i did.  it’s a big deal to even host visitors let alone clean up, etc… although i had tons of help.  it felt great to have company, it keeps me on the right track.

ever since the fund rager i have been feeling more and more like myself again.  something about being around people, especially ones that i love, made me come back to the world.  almost like i was in a zone and nothing could penetrate it.  it had to happen naturally and lately i feel my personality coming back.  it’s the strangest thing to watch and i am happy to be aware of it.  for instance, about three weeks ago i started getting angry again … i stopped myself and was amazed.  when was the last time i was able to get angry over something?  like, pissed off over an annoyance?  that ability completely left me for almost a year.  being so sick i lost some essential “spunkiness” in my personality.  what’s a queens girl without a little road rage in the back of taxi?  haha. it sounds weird, but it was nice to BE ABLE to BE ANGRY again.  but, of course, even that must be curbed.  it’s way too easy to become irritated on the roids. the point is, parts of my body and self are waking up that have been dormant for so long and it makes me feel alive with energy.

this week is all about starting to get it together. meaning, with all of the support from the rager i am finally able to get some things done!  some medical bills offed, some appointments i’ve been wanting to make.  i can start restorative yoga and begin the energy healing.  i am very excited to make a plan and have something like a schedule!

no docs this week.  I HAVEN’T SAID THAT IN FOREVER. although, i do have the neurologist and the rheumatologist coming up soon.

happy monday to everyone.  here’s to a beautiful summer week and healthy, happy bodies.