Doctor’s Visit and Blood Test Results

Linking up with Being Fibro Mom‘s Chronic Friday Linkup

If you have been a regular reader you will know that I’ve been experiencing nausea and a low grade fever since last September with no doctor being able to tell me what’s going on.

I was finally able to see my Rheumatologist. When I explained my symptoms to him he said, “I’m curious to know why you would choose to see a Rheumatologist for these symptoms.” I was a bit shocked but I told him I always think of Lupus when running a low grade fever but he said that was not one of the prominent symptoms.

He said that when patients experience Fever of Unknown Origin (FUO) the first step is to see an Infectious Disease specialist and if nothing turns up, a Hematologist/Oncologist. He told me he was going to run a lot of blood tests and they took ten vials of blood plus a urine specimen. I may have gone to the “wrong” doctor but he was the first one to give me some direction.

It was the first time that certain tests came back as out of range and instead of being happy about it like I thought I would because I’m desperate for a diagnosis and treatment, the feedback from the doctor was that I should make an appointment with a Hematologist/Oncologist, which to me is about the scariest doctor to see.

I think of my therapist telling me that my nausea was probably due to depression and I am angry that she made me think for one second that this was in my head. Every time a doctor doesn’t know what’s wrong with you, they want to go right for a psychological diagnosis.

I picked my Hematologist/Oncologist out of the many from Cleveland Clinic. I read her patient reviews and one of them said that the doctor actually hugged her. I wanted a doctor that hugged people so that was a big selling point for me.

When I called to make an appointment the hold music and information said, “Welcome to the Cleveland Clinic Cancer Center.” There was even an advertisement for wigs that they sold at the clinic. It was one of the scariest things I have ever heard.

When I got through, the scheduler asked if they had access to my test results through the clinic’s system. She told me a nurse was going to study my results and they would get back to me.

In about a half an hour I got a call back to make my appointment which is in mid July. I felt like they had been looking to see if I was sick enough to be seen.

I am trying not to freak out but I can’t help it. I am doing better today. I know I can’t be a mess until I see the doctor, I’ve got to get it together for my son’s sake.

Next week I already had an appointment scheduled with my primary care physician with blood work ordered so perhaps she will be able to shed some light on my results. Normally I research my lab results, and I did to a point but what’s the use of making myself more upset than I already am? It doesn’t have to be cancer, it could be a blood disorder.

Your prayers and good thoughts are appreciated.

Hematology-blood_test

Not my real test results.

Lovely In Her Bones

I have been dealing with either Osteopenia or Osteoporosis for four years now. When I had my first bone density test I was classified as having Osteopenia. Despite calcium supplements, my next test (two years later because insurance won’t pay for having it done sooner) revealed Osteoporosis. I was told I couldn’t go on drugs like Boniva or Fosamax because they were only for post-menopausal women and I was getting my period regularly, and still am.

Yesterday I went for another bone density test. It’s a quick test but I got a little suspicious when the tech wanted a more detailed shot of my left hip…and didn’t do my right hip. I asked her when I would hear back from my primary doctor about the results and she said probably within the week.

A couple of hours later I had an email from my doctor.

“Your bone density is BELOW THE EXPECTED RANGE FOR AGE. I recommend that we establish with our endocrinologist, to see if you need medication at this point or not…”

I called the endocrinologist and my appointment is for August 8th.

WHAT AM I SUPPOSED TO DO IN THE MEANTIME?!

Exactly how brittle are my bones? Am I in immediate danger of breaking a hip? Do I have the bones of a 70 year old woman? An 80 year old? Why is this happening to me at the ripe old age of 43?

I can’t pull myself away from the internet. I learned that my diseases: Rheumatoid Arthritis, Lupus, Ulcerative Colitis and even Depression can contribute to low bone density.

So can Leukemia, Lymphoma and cancer of the bone marrow.

I can’t believe I have to wait nearly two more months for my appointment.

This reminds me of the time a radiologist told me I could have breast cancer based on my mammography. I was told to make an appointment with a breast specialist and I got one..two months later. The spot on my mammography was deemed an old cyst by the specialist, but I spent an agonizing eight weeks in limbo.

Has this ever happened to you?

How did you get through the waiting period?

bonedensity

The ShutMyMouth Diet

That’s right.  I am officially on a diet.  If I write it here for God and all to see then I have to stick with it!

When women have chronic illnesses, it often is very much out of our control what we weigh. Medications, our diseases, and not being able to exercise because of the pain and energy zapping we feel, all contribute to how much we weigh.

Now I am going to talk numbers, for me personally.  I am 5 feet 6 inches tall.  You may be envious of my current weight but the fact is that I am not happy about it.  Everything is relative, you know?  I weigh the most I have ever weighed, except for being pregnant, 157 pounds. Now, I know that some of it is swelling, but who knows how much weight that is, a couple of pounds? Less?  No one can answer that for me!  I seem to wear it well, and am currently wearing sizes 8s, 10s and 12s.  Sizes are crazy aren’t they?  How can I still wear my size 8s?  Why are some size 10s swimming on me?  I have what I would describe as a Rubenesque figure.  Only we don’t live in the 1600s:-(

For many years I was a solid size 10 with my weight being around 145 pounds, give or take. I got comfortable in my size 10 clothes, I accepted “size 10 me”, finally.  Some people would even praise the fact that my weight never wavered.

Then I had Tyler.  My pre-pregnancy weight was 146 pounds and I gained just 23 pounds as I had Gestational Diabetes and had to be careful.  When I came home from the hospital, my stomach had already shrunk considerably and I had already lost 13 pounds, which really is like the baby and the crap that you carry with the baby.

In one month or less I was down to my pre-pregnancy weight.  And then I just kept going.  I was not on a diet, I was not doing anything.  I had a stomach virus on top of that and so when Tyler was seven months old I weighed a horrendous 117 pounds!  I looked like a heroin chic model.  People at my new job were telling me, “YOU just had a baby?  You look amazing!”

But I hated myself.  This wasn’t ME.  I had gone from years of being a size 10 to a size 4! I would look at myself in the mirror and cry.  I was in shock over my skeletal frame.  While people were praising me for my weight loss and amazing will power, my doctors were flummoxed. My endocrinologist was telling me I was just plain crazy. He said it in a bit nicer way, he said I had post-partum issues and should be seeing a Psychiatrist and therapist, but I already was, the big dummy.  Is it even necessary to say I fired him?  I was being tested for every cancer there was since unexplained weight loss is a major symptom of cancer.  No cancer, thankfully.

I used to test the power of eating anything and everything I wanted.  I used to have half a pint of Ben & Jerry’s, sometimes more, every night.  After the stomach virus and a return to a desk job I did stabilize into a comfortable size six.  I started to like being a size six, and who wouldn’t?  Being able to wear trendy or classic office clothes without looking like I was trying to stretch them just to fit into them.  I was always the kind of woman who made it a habit to go the next size up, rather than attempt to fit into the size they weren’t any more.  It was more flattering.

I realize now that Lupus was starting.  It had taken over my metabolism, my endocrine system. Lupus wanted me thin and so I was.  I was finally that willowy amazon that I had thought could only be found in my dreams.  The only thing that I didn’t have was I have always wished I was shorter. Oh, they have such cute things for petite women, don’t they? Well, that probably IS going to happen too since I have Osteoporosis and have already shrunk a few inches.  Be careful what you wish for, right?

Enough with the past, let’s get to how I ended up being 160 pounds.  My meds for my mental illnesses, and my mental illnesses themselves, make me want to eat.  My pain makes me want to eat. Sometimes it is so bad, I don’t want to feel it any more, I want to feel an Oreo cookie, you know? Someone told me that eating releases the same pleasurable endorphins as narcotics or exercise or being happy.  For me the only thing that works is the food as I cannot exercise, I do not get high from my drugs and happiness around here is short lived.  I only have the Oreos!

I also have this weird feeling that I cannot nap or sleep unless I feel full.  The food helps make me sleepy and it is easier to get to sleep.  Or then I have insomnia and I get hungry, being up for two to three hours in the middle of the night, who wouldn’t?

But what really convinced me that I had to do something was the amazing Christine Miserandino, The Spoon Lady, of the amazing But You Don’t Look Sick blog.  I saw pictures of her recently and she is already so beautiful but now she has lost the weight she was lamenting about and she looks fabulous!

I don’t know how Christine did it, but I have decided to go on the ShutMyMouth Diet.  I have decided that I am stronger than Lupus, Depression, or my meds and I DO have control over how much I weigh.  I will not let them have their “weigh” with me any longer.

So far I have lost a pound on the ShutMyMouth Diet but more so, I feel like I am once again the Master of my body, the Queen of my Temple, or whatever you would like to call it.  I am not advocating that YOU should go on the ShutMyMouth Diet, you should consult your doctor before beginning any diet, but for me, what harm could the ShutMyMouth Diet really do?

My goal is to lose a reasonable 20 pounds in how ever long it takes, as I will be eating my usual meals and a treat when I want it, as long as it is within reason.  Maybe I am on to something with this new ShutMyMouth Diet?

At the Social Security Doctors – The Horror, The Horror

(I am sorry to keep you waiting so long.  I wrote this over the course of two days, starting on Monday overnight.  I am sorry it is so long but I felt that it is a story that HAD to be written. You may want to take it in bits, or perhaps you will find it so compelling you will read it straight through.  If I was you I would probably take it in bits because I cannot take long emails, posts, etc.  But I did try to separate it into small paragraphs for your convenience! Happy? reading!)

It’s is 1:30 a.m.  I fell asleep at 8:30 last night, in pain and traumatized FOR LIFE.

I do not want to scare all who have not yet been to see the doctors on the government’s side so if you subscribe to the ignorance is bliss way of thinking STOP HERE.  If you are a sick person who has already been through it you probably have a horror story of you own.  If you are a well person you NEED to know how the government treats disabled people.

Things were a little confused to begin with.  To review with some, I am in the middle of my disability hearing.  I know I have not put up Part II, yet, it was just sooo horrendous, so traumatizing, so damaging that it has been difficult to write down.  But at my hearing the judge from Hell asked, “Where are the reports from the Social Security doctors?”  Well I was never asked to see any.  If you’ve been through the process you are probably thinking that this is odd.  So did I, but I thought that it meant that they believed me.  That my case was so strong that they were going on my doctors’ testimony only.  And that I must have it in the bag.  To review, going back when I was turned down after first applying in October of 2009, when I was turned down in January of 2010 (Happy New Year!) I was in shock.  Shock did not even describe it.  The whole application process had already thrown me into such a state of depression and anxiety that I could no longer get out of bed, I just used to lay in my bed and when I was forced because of Tyler to go out, I resembled someone who looked liked they needed a heroin fix I would shake so badly.

If I am making you afraid to apply for Social Security Disability, I really don’t mean to.  You may not be as sick physically, you do not need to have 14 diseases and conditions like me or take 18 medications.  You may be going into the process with a stronger mental state.  This is just MY story.  I want to prepare you for the worst and tell you my truth.

So, I have made it nearly two years with no one asking me to see a doctor, how is that MY fault?  Well it may not be my fault but it is certainly MY problem because I got a letter in the mail after my trial.  I couldn’t understand it exactly, but the judge had handwritten on it “Mental, Neurological/RA”.  What did that even mean?  Grant and I s’ mind boggled.  It couldn’t mean that she wanted me to see three doctors?  Nah, at this stage of the game this is unheard of.  I mean, was she actually saying that she didn’t believe I was mentally ill, that I did not have Lupus?  I don’t even have anything neurologically wrong with me, so that can’t be, right!?

A few weeks later I got two letters.  August 11th was to be my physical evaluation and on August 15th I was to take my mental evaluation, in beautiful New Brunswick, NJ, folks.  I was very nervous, I wanted “prep” from my lawyer who only said, “Emily, you are a very sick woman, just tell the TRUTH. I am not worried about YOU.”  Two days before August 11th I got a letter and phone call saying “Sorry for the inconvenience, your August 11th appointment has been rescheduled to August 15th.”  Well, what happened to my appointment for August 15th?  Unlike my August 11th physical evaluation appointment,  I had not received eight of the same letters about it, it had just…vanished.  So, yesterday at around 10:00 I called the office to confirm and the administrative assistant or whatever she was, she may have been a nurse even, says, “Well you’re having two appointments today, but unfortunately not back to back.  You’ve got the one at 11:30 and then the one…well, whenever we can fit you.”

Grant had to drive me because we only have one car and he needed to pick Tyler up from camp at noon.  The Medical Evaluation center was in an converted old house, nice, right? Well I walked in and people are sitting everywhere, sick, disabled people who looked like they had been through a natural disaster are outside, and inside sitting on the stairs because there is NOWHERE for them to sit.  No one would offer you a seat because they are too sick. The admin. gives me four pages of paperwork.  I asked her why wasn’t I told beforehand that I needed to fill this out?  She just shrugged. Now I have to go on MY memory?!

As I mentioned there was no where to sit and I cannot stand for any longer than two minutes so I had to plop myself down on the floor, leaning up against the bathroom door and a vending machine that is out of order and even if it worked, who has the money for food, right?  While I am on that subject I have noticed that if I want to get some food, there is nothing around.  Some people came in with food that worked there and when I asked where they got it from they said, “Oh, well you have to drive to it, there is nothing within walking distance around here.”!!!  So, there are disabled people with nowhere to sit and nothing to eat and no means of getting to food because most people cannot drive and I have no car anyway.

Because I am on Orencia, an immunosuppressant drug, I have been sick almost all month.  I am getting angrier and angrier.  I am in a GERM FACTORY.  With 20 people who have God knows what. If I didn’t have to be there I would be home in bed because I have a fever and feel like shit.  I shouldn’t have had to come here, they should have had to come to ME and saw me in MY bed, I mean this shit is already RIDICULOUS!  

At noon, the doctor came IN.  He apologized, the other doctor was sick and he was stuck in traffic. My appointment was at 11:30, my FIRST appointment.  People have been waiting there since 9:30 and NO ONE HAS BEEN SEEN.  I have a choice, I CAN reschedule, but if I do this, this will further delay the judge’s decision, for God knows how long, and as you probably already know, I need the money, as soon as possible, I have needed the money for over three years now as I have had no “Substantial Gainful Employment” in three and a half years.  

After filling out the paperwork I went outside to call Grant.  I didn’t know that I would have to list all my hospitalizations going back the past 10 YEARS.  Before I made the call a man who was sitting on the stairs by me was smoking.  He asked me what was wrong with me and I did the short form and told him I had Lupus.  He started to shake his head.  “I am sorry, I am so sorry.  The love of my life, my baby’s mother died of Lupus.  She was my sweet heart. She died when my daughter was just five years old.”  I said, “Oh, my God, I am so sorry” and then it quickly hit me that I have Lupus and my child is nearly five and how in the last three weeks I have come close to dying twice and I lost it.  The man started apologizing to me, but it wasn’t his fault.  This is Lupus, my friends.  This too can be my reality, let’s not try to sugarcoat, it I REFUSE to.  We talked about how with Lupus, you never know what is going to happen, how sick you are going to be or not, how Lupus will attack you, how you may die from it but how you may not.  I told him that I would rather have Cancer.  Then I know, I am either going to live or die.  It is just that simple.  With Lupus, I don’t know when my time is coming, what organs Lupus will decide to attack.  I cannot bear this “up in the air” disease, that people do not understand, that people do not know how serious this disease is and what people with Lupus live with everyday, especially if you have children.

I composed myself to call Grant. I tried not to cry because it upsets him too much.  I asked him if I was correct on my hospitalizations and let him know I would probably be there for hours.  And then I went back in, to my seat on the floor.

Finally someone got up and I got the seat, though at times, if I got up, my seat would be gone, snooze you lose, you know?  I don’t blame someone sick or sicker than me for taking a seat.

I could write a post alone about every single person there.  The brilliant twenty-two year-old who has had to drop out of college from fibromyalgia.  The lady who keeps having mini strokes and was sweet but it is obvious she is no longer “all there”.  The man who walks with a walker, who worked for years installing elevators, whose legs were so swollen from arthritis that there are no words to even describe it.

Are these people faking?  Is this lady pretending to be a little “off”, did this guy strap on fake padding on his legs?  Yet in New Jersey alone, nearly 90% of those applying for disability are turned down the first time, and most of them were there for the first time, not in a trial like me!

At about two hours in I was called by a doctor.  He asked me a lot about my physical condition, it was like a mix of mental and physical rolled into one.  I couldn’t figure it out, but he seemed to be in my favor in fact he was feeding me.  “What are your mental illnesses?”  “Depression, Anxiety, and Mania.”  “Oh, so you’re bi-polar?”  “Well no, I have never been diagnosed as having bi-polar…”  “You’ve got Mania and you’ve got Depression…you’re Bi-polar.”  “Uh-okay”, I said, as he wrote it down.  “Do you get panic attacks?”  I do, but I would not have remembered to mention them!  After a bit longer he said that we were done.  “Aren’t you going to examine me?”  “Mrs. Cullen, I am the Mental Evaluator.”  I MUST really be crazy now if I thought he was the doctor who was going to examine me physically!  He must have wrote that down too!

Back out for more than an hour’s wait!  I was the talk of the waiting room.  We had heard everyone’s stories and no one could believe that the judge was making me take two examinations, that I had gone this far, was THIS sick, was in my trial phase and still no YES.  I probably scared the shit out of them, poor folks.

Then it was my turn again.  A nice elderly doctor called me in, where I found out he was going to give me TWO exams!  One, Neurological, one Rheumatological!  We talked for a while, and he did the same thing as the other doctor, termed me “bi-polar”, which I do NOT even believe I am, which is a very serious illness!  Okay!

“Okay Mrs. Cullen, now please stand up.”  As he started to twist my body every which way I called out “I am hypermobile!” “Wow!  You sure are!  I don’t think I’ve ever seen anything like this!  You could be in Circque du Soleil!”  Oh, Lord, please don’t let him write that I can work in the circus!

 “Okay, Mrs. Cullen, now please remove your bandages (I wear ACE bandages on my knees and my wrists because my hypermobility has gotten so bad, I may be heading towards ANOTHER disease that I don’t even want to name.  If you’re reading this and you’ve got it, God bless you, this is one disease I don’t know how I would ever manage!)

I got on the table.  “You are going to hurt me now.”  “Well, no, I am going to try NOT to hurt you, I am just going to examine you.”  I knew that THIS was a lie, that he needed to mash my joints around at the very least, he needed to KNOW that I am sick, that I am in the chronic pain that I say I am in. First came the Neurological part of the exam.  He got out the little hammer and said, “Now please don’t hurt me, please try not to kick me.”  He’s got to be kidding me, right?  Right?  

My legs made the appropriate little kicks, my reflexes are fine.  He had taken my blood pressure first and I had mentioned to him before he went for the BP device that I cannot use a BP wrist device because with my Fibromyalgia, the vibration of the BP device caused incredible pain.  He took my blood pressure with the arm cuff.

After the hammer, he did something that I have not had done in a long time.  He took one of those tuning forks and somehow made it vibrate.  I did not know what was coming, how could I?  He then put that godforsaken tuning fork against my leg and I literally jumped out of my skin and started screaming!  Those vibrations!  Coursing through my whole body!  After the screaming I completely broke down crying.  “You hurt me, you hurt me!”  “I-I am sorry. This is not the part of the exam that is supposed to hurt, I did not mean to hurt you!”  He had a horrified look on his face.  I know even though he works for Social Security he is, after all, a Medical Doctor, and he was not trying to cause me that much pain.

After that it was pretty much over, with my entire Rheumatological examination skipped and him doing a lot of writing.  He thanked me very much for my time and apologized for my having to wait so long.  I had been there four and a half hours.

I walked out of the office with tears in my eyes still.  Everybody was looking at me wondering, my God what did they do to her?  I called Grant for him and Tyler to come and pick me up.  By the time they picked me up, as per the usual Emily Cullen luck, it was pouring down rain and Grant could not park or come anywhere near the door.  Handicapped parking for the disabled? Hello?  And yes, I WILL be filing a complaint with the New Jersey Association for Disabilities.

As the cold rain fell on me, drowning me, I was screaming because it was so cold.  I finally got in the car looking as though I had showered in my clothes.  I screamed for Grant to turn off the A/C.  Tyler was so happy to see me.  Grant told me he had kept asking him, “When is your phone going to ring?” because he knew it would be me calling and I would be coming home.

Now, I wait.  For the doctor’s reports.  For the lawyer to call me back, to see what the judge wants, from me, if anything, and for the next step in this trial of my life.

Story and Contest! Win a Beautiful Anklet for the Summer!

First, the amazing story.  In February I did a contest with Michelle of Hope in Bracelets.  The winner of the contest was a woman named Caren who wrote to me about whom she would be giving the bracelet to:

“My daughter’s good friend was diagnosed this fall with an extremely rare form of Non-Hodgekins Lymphoma. She is being homeschooled for her entire high school senior year while she undergoes a series of chemotherapy treatments, each one nastier than the last. She can’t have visitors because her immune system is effectively shut down until the treatments are over. These last few weeks have been especially tough for her spirtually, and somehow while googling something about jewelry I landed on your page and knew I had come to the right place.

The girl is Jewish. There is a prayer for the sick that is recited during the Saturday morning service, asking God to grant a full recovery to the person who is ailing. The phrase for “full recovery” is “refuah shlema” but in normal parlance, “refuah” is the operative term which means both “health” or “healing”.

I would love it if (the artist) could make up a beaded bracelet that says:

refuah

It would be a constant reminder to her that she is in our prayers and that all we ask is for her return to good health. A health talisman, if you will, in a style that won’t be scritchy on her wrist after long term wear.

My daughter can give it to her friend when she’s between treatment series while they let her body “rest” for a couple weeks.”

Michelle was more than happy to oblige, of course. In fact, she donates 10% of her proceeds to charity.

I have been so busy lately, between being sick, resting, recovering and repeating, etc., I haven’t been able to even write to back to Caren my thanks for her update of the young woman who got the bracelet, whom we asked for all to pray or think good thoughts for someone so young to be that sick. Here is Caren’s email to me from late May:

“I was the winner of the “refuah” bracelet that we ultimately gave to my daughter’s friend who was diagnosed with a rare form of cancer. You’ll be glad to know that she loved the bracelet and was very moved by the gift. The girl has handled the chemo treatments very well and is now in remission. She will have to have follow-up chemo for several years more in a maintenance capacity, but that won’t stop her from going to college, which she will be attending next fall. Thanks once again for having your drawing!”

Things like this are what keep me writing my blog and are what makes Michelle, who is chronically ill herself, keep making bracelets.

And now the contest, the opportunity for you to celebrate summertime with something pretty and new!

I discovered Hope in Bracelets when designer Michelle followed me on Twitter.  I’m usually not into following product sites but when I took a look at her beautiful bracelets, I instantly became a fan.  The bracelets were very reasonably priced and when the one that I ordered came, I realized that they looked as good as they do in her pictures and were well worth the price!

Michelle has Rheumatoid Arthritis and Fibromyalgia and started her bracelets to bring awareness to these diseases in a stylish way!  She uses beads and ribbons to represent the various diseases’ colors and adds words such as “Hope”, “Lupus”, and “Cure MS”.  She will also custom make pretty much anything you want!

A couple of more reasons I love her site:  You don’t have to be sick to enjoy her work!  She also has a beautiful selection of just plain or name beaded bracelets!  Plus, there’s no need to worry if a bracelet or an anklet does not fit, as Michelle uses a stretchy sting material to strings the beads.  One size can fit all!

And now, you have your chance to win a beautiful anklet.  If your legs are already pretty, they will only make them prettier; if your legs could use some work, the anklet will draw alway from the flaws some of us ladies have, ahem.

There are three ways to enter:

1. leave a comment

2. tweet this contest out

3. link it on your Face Book page

Each entry counts as ONE so if you do all three, please comment THREE times.  Some people do not get this concept, and I do try to help people whom I see have made a mistake, but ultimately you are responsible for your entries.

The contest will run until 11:59 p.m. EST, Wednesday, July 20th, 2011.

Good luck!