Tag Archives: doctors

A Day In the Life – This is just CRAZY

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I’ve been waiting for a while now to be contacted by the Evalve trial.  I got bloodwork done as soon as they asked for it two weeks ago (after waiting five months to be contacted by them).  They told me they would be in touch right away to get the rest of my testing under way.  Since then… silence.  I even left a few messages for them.
Today I get a call from the assistant of the doctor who is running the trial.  She called, concerned that I didn’t get my bloodwork done.  I explained that I did get it done, two weeks ago, and she should call and ask for it. This was the beginning of a very unsettling conversation:

The very nice assistant then told me I’m “all set for tomorrow”.  Tomorrow?  What is tomorrow? I asked.   Apparently they booked a very big test for me and never told me about this.  No phone call, nothing in the mail, nada.  I proceeded to ask questions.  The assistant explained I would be getting an echocardiogram.  No big deal I thought, I’ve had those before.  But then I thought about it and I asked if it was in fact a trans-esophageal echo (the one I need to complete my review for the Evalve trial –the one I’ve been waiting forever to have done).  This is a pretty big deal to me considering I will be put under anesthesia and I had less than one day’s notice. And sure enough, it is the test I am going for in the morning.  Good thing I know I cannot eat past midnight tonight AND that I would need to bring someone along with me tomorrow.  Because not one person called to prepare me.  How crazy is that?

This all made me very unsettled.  If they can’t even get themselves together and organized to schedule my tests how am I supposed to feel good about any of this?  How do I trust this operation to go into my heart through one of my main arteries and stick a microscopic clip onto a valve in my heart?!!!  It’s scary enough and it’s even worse when you go into a situation where you do not trust anyone because of the rampant incompetence.

I’ve had my share of bad experiences in hospitals so I am already scared of procedures because I have seen doctors act carelessly.  I have a hard time putting my trust into someone’s hands so when stupid stuff like this happens I feel so incredibly helpless.  It makes me really nervous and while I just want to get this over with I am super nervous about tomorrow.  I am headed to Columbia first thing.

I am getting these two tests tomorrow and from what I understand I will then be told if I have been accepted into the trial.  I will then meet with the doctor in charge of the trial itself and ask my questions.  I’m not even sure how I feel about any of this at this point…  It’s all so fast.

Osteopath today

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Today I am off to the Osteopath.  I credit him for a lot of my progress this year.

When I first started seeing the Osteopath I had never heard of this type of doctor before.  I started seeing him one year ago this month and it was right after one of my many awful ischemic colitis episodes.  I suspect these attacks happen from all the medication I was taking and it is basically the worst pain I have ever felt in my life.  I was hospitalized 13 times in 2008 alone mostly from these awful episodes. The blood vessels in my stomach contract and prevent any blood to reach the intestines causing lack of oxygen and mind bending agony as well as some other gross stuff which I won’t get into here.  So basically, when I saw Dr. V for the first time my stomach was in shambles and I was incredibly underweight and weak after yet another hospitalization.

Over the past year I have seen him at least once a month (in the beginning it was once a week).  I noticed how great I felt after each adjustment and since I saw him two weeks ago I’ve felt more and more amazing with each day.  I really trust my Osteopath because not only does he know what he is doing (super smart dude) but he also really cares about his patients, and he knows the human body well.  He is also a true natural healer, a believer that in most cases the body can and will heal itself if given the right conditions.  I was immediately drawn into Osteopathy because of the holistic approach it takes to the human body.  The belief that every organ must work harmoniously to create an optimal environment for health and healing makes perfect sense to me.

A treatment at the Osteopath is as simple as lying on your back for thirty to forty five minutes.  There is no cracking or pulling as in Chiropractic medicine.  This is completely gentle, and the doctor usually places his hands on your lower back (sacrum), back of my neck and head, face, and over my stomach.  You can feel him manipulating the muscles and bones very soft and easy.  There is no discomfort or pain involved.  It’s basically nap time.

I am so grateful to have found a doc like Dr. V.  From my experiences I know doctors like him are very hard to find in a city filled with cold ego maniac physicians.  I know that with his help I will be healed and brand new.  He says my disease is regressing.  He says he believes I can be one hundred percent healed of my condition. And I believe him.

Biofeedback Therapy

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I have plans to look further into therapies like Biofeedback Therapy to manage my chronic pain as opposed to painkillers and meds. I can’t go one like this forever –in pain and exhausted for about 70% of my life.

It’s been on my mind for a while now to give it a try. I found this article interesting.  I am always amazed at how slow the “medical community” is on the mind body connection.  It was only in very recent history that this has become an acceptable thought in the medical world.

They are finally acknowledging legitemate treatments like acupuncture, cognitive behavior therapy and bio feedback therapy as medicine!  Great news. I look back and wonder what took so long?  Another twenty years from now this “lag”  will seem ridiculous to everyone, not just some of us.

The Phone Call

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Rheumatologist finally calls.  I am underwhelmed.

After waiting a day and a half to speak with him it is clear that he is rushing on the phone with me.  I don’t blame the doctors themselves anymore, they simply don’t have time, and I don’t really take it personally anymore but it doesn’t mean that it’s not incredibly irritating.  I always feel alone and a bit helpless after one of these phone calls.  The truth is the doctors really don’t “get it”.  They don’t know what it’s like to be in this sort of pain.

I was put on hold two times for four minutes at a time during our short conversation (he had to go because he had patients in the hospital to attend to).  It was a very rushed conversation… I even forgot to ask him a few things.  After discussing quickly what I’ve been doing to maintain my pain he suggested a new type of drug for me to take: a line of drugs that are currently being used to treat chronic pain in Fibromyalgia patients such as Lyrica, Cymbalta, and Savella.  He suggested and has had most improvements with Savella.

Luckily I have been able to avoid these drugs up until now and I don’t like the idea of taking them at all.  They may be good for some people and I know some who have taken them to alleviate pain, but I personally prefer to keep my prescription meds to a minimum considering all that my badass liver has weathered.  That, and I like to be extra careful because of my heart.  You never know how these things may affect your rhythms.

Also, I am not so psyched to take a medicine where the side effects start out with this statement:

You may have thoughts about suicide when you first start taking Savella, especially if you are younger than 24 years old. Your doctor will need to check you at regular visits for at least the first 12 weeks of treatment.  Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself. Avoid drinking alcohol while taking Savella. Alcohol may increase the risk of damage to your liver.

Um, no thank you.  I think I’ll pass on the hostile, aggressive mood swings and panic attacks.  Been there done that with the ROIDS (Prednisone) and it wasn’t pretty.

And here is my favorite part:  “Be careful if you drive or do anything that requires you to be awake and alert.”

Wtf?  That’s hilarious.

Guess I have to keep up my pain management, and when it’s bad take the painkillers and stay home on the couch.  These other medications are not an option for me.  Not cool.


Rheumatologist today

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Off to an appointment with my new Rheumatologist Dr. B.

There is a controversial decision that I am about to make and hopefully today will help.  So far, I’ve spoken to all of my trusted doctors and healers and they seem to be 50/50 on the subject of using antibiotics (minocycline) as a cure/ control for Scleroderma and autoimmune diseases.

The theory is best explained here Roadback.org

It is an interesting theory and out of my desperation I will try anything to get rid of illness and disease in my body.  I am not sure what my gut feeling says anymore, it’s a battle between knowing there probably isn’t a quick fix to anything health related and wanting to be better… taking a pill and BAM it’s gone!  I want to believe that but after speaking with my Osteopath yesterday he made a good case to stay away from months of antibiotic therapy.

I’m so confused.  It’s so hard to make decisions when there are no answers.  I want to be patient as Dr. V (my Osteopath) advised me yesterday.  He says he believes I will make a full recovery, that I’m in the process of doing so,  but it’s up to my body to decide how long this will take.  Patience is hard however when you feel stuck and you’re wondering when this will end.  I always like to think I’ve tried everything I possibly can…

At this moment I am leaning away from the antibiotics.  Something about it doesn’t seem to be “right” for me.

Trauma

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I have been meditating a lot on this idea of TRAUMA lately.  I’m certainly affected by everything that’s happened but the trauma… well that is the gift that keeps on giving.  When I knock out one obstacle there always seems to be a new and exciting one waiting for me.  I’m not complaining here, more like marveling at the layers upon layers of the human psyche that are affected by events in our lives.  We humans are pretty incredible.

Trauma is also what’s kept me away from writing.  I’m stuck.  In a funk.  Sad and frustrated.  I get like this when I’m overwhelmed with information.  Two events have recently pushed my “trauma” button that made all of my hard work to get to a “good” place seem useless.  When that button gets pushed I am right back to raw terrifying feelings.  I go back to fear and obsessing over small things like trying to find the exact moment the scarring started to suffocate my heart muscle.  “If I could just see the time, the place, the day, what I was doing….”  what then, Lauren?  Well, realistically nothing would be different.  Knowing is a control thing I guess.

It was clear that I was better in September.  I was so happy, full of confidence in my body again.  It didn’t take more than a sentence to crush me that day at my cardiologist. Actually, it didn’t take more than three words “open heart surgery”.  Button pushed.  The weeks since then have been tumultuous.  How does someone live when you know that’s looming?  Then, a new Rheumatologist last week.  Certain truths were brought to my attention and I felt so sad for myself. Mistakes that may have been made by certain other doctors in the past.  Mistakes that may have been avoided if I had just chose to see someone else or if I was just more in control at the time…  The button was pushed and this time I just felt so sad for my body.  For everything I’ve been through. For the doctors I’ve trusted that let me down.  This is one of those times I cried myself to sleep thinking “I didn’t do anything to deserve this. It’s so unfair”.

Maybe it’s better I don’t write when I’m like this.  I like to contain negativity not spread it.  Although I wouldn’t be telling the truth if I said I was always fine.  Trauma and sadness is a very real part of my life right now.

A Newer New Rheumatologist/ Take 5

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A constant subject here is my quest for a Rheumatologist.  I have had terrible experiences in the past with this particular breed of doctor and I find it is a very hard job to fill in my overall picture of health. I have lost trust in doctors because of some of these dudes.

You see, my illness is so rare that quite often these doctors guess and suggest medicines (many of them toxic) to treat the symptoms without ever fully grasping the weight of the underlying problem (in my opinion, of course).  I cannot tell you how many times I have made a decision to take a medication putting my trust and my health in the hands of a Rheumatologist only to see a different one cringe when I tell them about it.

It is a terrible feeling to find out that you were misguided, but worst of all to feel you are not taken seriously as I experienced when I was in severe heart failure and my Rheumatologist of six years brushed me off numerous times telling me it was “anxiety” (but that’s another story for another time).

This will be my fourth Rheumatologist that I visited two days ago.  I could tell from the start that he just “got it” –as much as anyone can “get” these diseases.  I felt I was able to have an intelligent conversation with him, he asked tons of smart questions, and seemed caring but totally business at the same time.  After I finished my 20 minute monologue of my health history, he is the only Rheumatologist to date that hasn’t looked at me with fear or intimidation or confusion in his eyes.  This makes me feel I am in capable hands at the very least.

I left there feeling optimistic but also quite upset.  I know I can’t do this to myself but I couldn’t help but wonder if I had found him sooner.  If it was him I was seeing for the past seven/ eight years… would he have prevented my heart from getting scarred?  Would he have put me on a path early on to proactively watch this aggressive illness?  I always felt I wasn’t “sick enough” for my other Rheumatologist to take me seriously.  I can’t help but wonder how things would be different.  It sucks.

It is also quite unsettling that he had a puzzling look on his face when I told him I was put on 60 mg of Prednisone (the Roids) last year and have since been tapering off (ended in September).  He could not believe my current doc had given me such an unbelievably high dose!

C’mon people.  This is my life!  I was a maniac mess on those steroids.  I can’t believe once again I was at the mercy of a doc who didn’t know what he was doing and just couldn’t admit it and hand me off to someone else.  Instead I was put at risk AGAIN.  Here’s hoping the new guy doesn’t disappoint.

He prescribed me new meds to take for the next two weeks for pain.  Let’s see how this goes.

Oh, did I mention he said my symptoms sound more like Fibromyalgia?  Nothing like getting a new diagnosis!  More on that to come…  my head is spinning.

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I woke up feeling so great today (rare).  This weather (also rare) definitely has something to do with it.

Of course, something is bothering me.  Why is it that I went for a test for my esophagus almost two weeks ago and not one of my doctors have contacted me since?  I have left messages for both my Cardiologist and Rheumatologist and nothing.  The truth, and the impression I got from all of my doctors is that this is time sensitive.  We need the results to move forward with other testing to assess my leaky valve.  So why is everyone sleeping on this?

When this happens I feel so unprotected.  Yes, we all have to advocate for ourselves but at what point are the docs negligent?  I don’t feel safe, and I certainly do not think any of them truly have a grasp of my illness nevermind think of it enough to take control or even create a plan!  Frustrated!

So the search for an efficient Rheumatologist continues.  Is there one out there?  Who can ease my anxiety a bit?  Grrrr

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I’m sure it comes as no surprise that I did not vibe with that new Rheumatologist last Friday.  I don’t even care to get into specifics because I will get annoyed all over again but there it was once again… the TRUTH.  NOBODY KNOWS HOW TO MANAGE OR CURE MY ILLNESS.  It completely intimidates anyone I sit down with the first time I go through my list of issues.  It’s not only tiring to tell my story from the beginning but it also makes me sad.  Rehashing it all is painful.

I’ve been pretty down since then.  I try not to dwell on these things but I can’t tip too far in the other direction either.  Either extreme doesn’t work out so well for me.  I just keep telling myself to live my truth, make my own life and drown out the docs and test results.

One thing is for sure, this month has brought one hard piece of information to digest after the other.  I am so ready for things to be smooth and groovy.  Maybe it will start today…