Friday, October 19, 2012

Appointments and Doctors and Tests! Oh My!

Image Obtained Through Google Images

I feel like Dorothy from the Wizard Of Oz.  I feel as if I've been in a whirlwind that has displaced me in a  scary and unknown land.  All of the appointments are the Lions, Doctors are the Tigers, and dealing with insurance pre-approvals for tests are the BEARS!  I feel like I'm walking along a path, straight towards the unknown.  Being propelled forward by heart, soul, and positive thinking though, that I'll eventually come to the end and my wish will be granted.  My wish of returning  back to my home.  Back to my land.  

To think, that this long journey began all because of a simple little blood draw.  Having a doctors office call me up and ask me if I had a preferred rheumatologist, without even telling me why I needed to see one in the first place.  I was stunned, and stammered out that I don't know any rheumatologists so any would be fine.  I then said " ...but why do I need to see a rheumatologist?".  The doctor had been giving me shots of Tordol for my neck, shoulder, and back pain and had told me at my last visit that she was going to run some blood work on me to check a few things.  That's all I knew, and was in the dark.  The nurse said "Oh, because you had a +ANA in a speckled pattern on  your blood work and it also shows you have a lot of inflammation in your body.  The doctor thinks you probably have Lupus.  I'll give you a call back with your appointment date and time when I get one set.".  Then, she hurried off the phone before I could ask any more questions.  

Lupus?  What in the h&!! is Lupus, I thought to myself.  As I was still kind of dazed, I went straight to Dr. Google to learn what Lupus was.  I was disgusted in the way the doctors office handled it and that I wasn't even provided the opportunity to ask any questions about it.  I didn't like what I read on Dr. Google.  I was just completely dazed & confused.  

Long story short, the rheumatologist re-ran blood work on me.  That time my ANA was negative, but I still had the high CRP and SED rate showing inflammation in my body.  After waiting 2 or 3 months for my first appointment with him, he came in and gave me a brief examination then told me to meet him in his office after I got redressed.  When I walked into his office, he opened his desk drawer and handed me a brochure from The American Society of Rheumatology entitled Fibromyalgia.  He told me to read the pamphlet and he's sure I'd see similarities of myself in the writings.  He asked if I had any questions, then dismissed me.  He had to have the WORST bedside manner of any doctor I've ever seen.  His entire demeanor and attitude was just incredibly rude and condescending.  

Here I am a year later.  I'm still "sick".  My symptoms have become worse.  I live with constant pain and fatigue every day.  I switched from the rude rheumatologist that acted like I was taking up too much of his time, after the second appointment with him.  I still felt there was more wrong with me then having Fibromyalgia by itself.  I didn't trust the guy or his diagnosis.  I went for a second opinion appointment at The Cleveland Clinic.  I'd done my research and the rheumatology department was ranked first in the state of Ohio, and second in the entire country.  I felt that I could trust a doctor from there.  I really liked the lady when I met her.  She gave me a complete exam, and she also agreed with the diagnosis of Fibromyalgia.  

The Fibromyalgia diagnosis has always bugged me.  Not because I don't want to believe I have it, I'm sure I do.  But because too many other symptoms and test results also point to something auto-immune also going on within my body.  Fibromyalgia commonly co-exists along with auto-immune diseases.   Normally, people with Fibromyalgia have completely normal lab tests.  I haven't had one single SED rate or CRP come back normal.  As a matter of fact, when I had some new blood work ran in July, my CRP was a little over double, what the highest normal cutoff value is.  The doctor at The Cleveland Clinic hasn't ever ran another ANA on me.  She chose to accept the one that came back negative, rather then looking into the one that came back positive.  She did run another RF test on me though, with the results of that being normal.  She said that completely irradicated the idea of me having RA.  That isn't true though.  At least according to what I'd found online.  According to information I'd found, I could have what they call sero-negative RA.  Still, this woman is practically a God in the rheumatology field so how could I ever question her?  I couldn't bring myself to do it.

The hand x-ray above is not mine.  I found this x-ray of a right hand on Google Images.  But anyway, let's just forward to last Wednesday.  I'd have a large bump sticking up on top of my hand for quite a few months.  It never hurt, so I never thought to mention it to any of the doctors I'd seen.  Slowly over the last few weeks, it had started hurting at times.  Last Wednesday when I woke up it hurt like nothing I'd ever felt besides child birth.  It completely felt like I'd broke it somehow during the night.  I couldn't lift anything with it.  I couldn't open or close a car door with it.  I couldn't type without excruciating pain.  It was horrible.  My dad was going to be here soon, to take my daughter and I to the dentist.  My daughter was having a wisdom tooth pulled.  When I called my family physican, they couldn't get me in until the 25th of this month and suggested the E.R.  I finally broke down early that evening and went.  At first, the doctor thought I might have severed tendons and ligaments.  -How when I hadn't injured it, I don't know.  He told me to call my family physicians office in the morning and tell them that they need to schedule an MRI for me due to possible severed tendons and ligaments. He said just to be safe though, he was going to take a regular x-ray of my hand just to make sure nothing else was going on in there.

It seemed like hours after the x-ray waiting on the doctor to come back in again, but in reality he was actually pretty quick lol.  He flopped down in the chair, and asked me when and how I'd previously broke my hand.  I told him I never have broke my hand.  He asked me the same question again.  Again, I gave him the same answer.  He said "X-Ray's dont lie.  You've broke your hand in an old injury in two different places.  I know, because you have calcified spots on both of the bones.  That proves that you'd broke it before, and it healed.".  This guy was starting to make me feel guilty, as if I really was lying to him or something.  I absolutely wasn't lying though!  Finally, he told me not to bother calling my family physician for an MRI.  He instead referred me straight to an orthopedic surgeon.  

My ortho appointment was to be on Monday afternoon.  All through the weekend, my mom and I kept talking on the phone, racking our brain about when/how I could've broke my hand through the years.  We both came to the same agreement.  There is no way that I could've broke my hand in two spots and never had any pain, swelling, or bruising.  I've seriously never had any type of injury to either of my hands.  When the Ortho heard this, she looked through my chart and saw that I have Fibromyalgia.  She started asking me questions.  Then, she came and felt my wrist and top of my hand.  Next, she started feeling the side joint of my thumb and moving it around.  While she was doing this, she asked if anyone has ever diagnosed me with RA.  I told her no, that I've been tested 3 times and all three times my rheumatoid factor came back negative.  She immediately said "That doesn't mean you don't have it.  It can take years before your RF actually turns positive.".  While she was talking, it dawned on me that I also was diagnosed as having a calcified granuloma in my right lung about four years ago.  I told her about it.  She then asked me if I happen to know if I've ever had a positive ANA or not, and if I knew if my SED rate and CRP was normal or not.  I told her about the SED rate and CRP both always being high, and how high the CRP was at my last draw in July.  When I told her that I've had one positive, and one negative ANA she said "See.  I almost guarantee you that you have some sort of auto-immune disease that keeps popping up to show us it's ugly face, without fully manifesting itself yet.".  She did not like the idea that my rheumatologist is so hard core about not even speaking about anything besides Fibromyalgia when I've tried to bring it up.  In July, I started trying to and she cut me right off and wouldn't even allow me to finish what I was going to ask.  She also doesn't like that my rheumatologist won't give anyone with Fibro anything besides Amitriptyline and Tramadol, and then Prozac if you're dealing with the depression aspect of Fibro.  The med combo isn't helping me at all, and therefore I should be tried on something else she said.  She said that she almost thinks the lump in my hand was a rheumatoid nodule.  She wanted me to switch rheumatologists and said they're referring to Toledo.  I explained to her that I'd started in Toledo and that I can't stand the doctor.  She asked for his name and when I gave it to her, she said that she doesn't think he's there anymore.  Then, we kind of dropped it.  She sent an order in for a pre-approval to do an MRI of my hand so that she can better see what's going on with the two bones that look like they've been broken in the past, and so she could try to tell if the lump is a ganglion cyst, rheumatoid nodule, tumor, etc.  Well, I got the call yesterday afternoon that my insurance denied the MRI and wants the doctor to try more convential methods first.  I was told to keep my appointment a week from this upcoming Monday and she'd also leave a note for the doctor letting her know it'd been denied.

So, over a year later, I'm still just as clueless and in the dark about what's wrong with me as I was then.  My health is in worse shape.  Still, I sit here wondering & worrying if I'm going to get to a point sometime that I won't be able to get out of bed one day.  I still don't have any definite answers as what is definitely wrong with me. I've lost my husband (and therefore my income since I've been a SAHM for years due to my health) because he my illnesses "stressed him out".  I'm frustrated, worried, scared, etc.  IF something else is wrong with me, I want to know what it is. It probably won't have any cure either, but at least I'd KNOW what's wrong with me.  The Ortho kept telling me that if I have an auto-immune disease that I need to start treatment sooner rather then later.  -Which is why she wanted me to switch rheumatologists.  *sigh* I wish I could close my eyes, click my heels together, spin around, and wake up safe and sound back in my home, with my husband still here, and my body not hurting.  I wish my body would still allow me to go work three part-time jobs at a time along with carrying 18credit hours a semester in nursing school like I have in the past.  I feel like my illness (or illnesses) has robbed me of the things most important to me.  My family, my friends, my ability to support myself and my child (since child support STILL hasn't caught up to all of his job changes).  I'll never ever again, take one single day that I feel good for granted.  Last week I was crying and depressed and I had a friend say to me "Amy, this is rock bottom.  You've hit the bottom so now there's nowhere to go except for up.".  Oh how I pray that she was right and this is my rock bottom.  Every time I've allowed myself to think that, the bottom has fell out from under me and I've dropped even further down the dark hole.


  1. As bad as everything sounds, things could be worse. You need to be thankful for the things that you do have, a roof over your head, your beautiful children, your grandbaby, every breath you take.


  2. I am grateful for what I do have. Which is why I said that I'll never again take a single day for granted. Also, I'm grateful that even though I've *lost* my husband from this, I've *gained* valuable wonderful new people such as you.