Hashimotos

It has been a while since I posted.  I have been going through some “stuff.”  After months of waiting, my Endocrinology appointment came.  The weeks preceding, I was having terrible nightmares, waking 3 times a night, only to still get up at 3 a.m.  I know it was the fear of seeing another doctor.  Another doctor who would probably treat me like I was crazy and again for the millionth time offer me anti-depressants.  After 18 doctors in almost 3 years, you start to get a little PTSD about doctors in general.  There have been a few good ones along the way, but their answer was always, “I’m sorry I can’t help you, this isn’t my field.”

So I take along to my appointment my two page documentation of what life has been like in this chronic limbo of no real diagnosis.  It has pictures, lists of symptoms, lists of diagnoses I have received, lists of medications I am on and I added a fun little list of “test results of interest”  After awful traffic that I was sure would cause my blood pressure to soar, I found the doctor’s office.  The nurse was incredibly nice!  I gave her my documentation and she entered everything in the computer.  Oddly enough for the first time ever, my blood pressure was great! She handed me the doctor’s card and put her own cell phone number on the back so that if I have any questions, I can call her directly and bi-pass the reception desk – WHAT?!?

The doctor finally came into the room, with my documentation in hand.  “WHOA!!! WOOOOWW!!  This is some major documentation!!!”  She spread my papers out on the exam table and pulled her chair up next to mine.  She said first pointing at the pictures of my blood filled boils, “What is this??”  I shrugged my shoulders.  She said, “No, seriously!  What IS this?!?”  I said I didn’t know.  It was something that was happening to me in the beginning.  It would fill with blood each time I menstruated and then go back down until the next month.  I had it about a year. And she asked, “but it is gone now?”  I said that yes, it stopped after I started the Depo Provera shot.  I told her that I had thought it was skin endometriosis but my Gynecologist wouldn’t even look at it.

So she moved down to the “test results of interest.”  She started with my A1C.  Interesting that my GP was like, “all your tests are good,” when my test results clearly showed I was pre-diabetes.  The Endocrinologist said it concerned her, especially because I have diabetes in my family.  Then she pointed at my cholesterol.  That also concerned her.  She talked a little about something called Metabolic Syndrome and told me she also had suspicions of PCOS.  She put me on Metformin and drew out a plan that I would start with one pill, working my way up to 4 daily after a month.  She was convinced that the 30 pounds I have gained in the last two years would just fall off.  That sounded good to me!  Sign me up!!

Then we discussed my thyroid tests from a year ago.  I explained that my mother had been diagnosed with Hashimoto’s and that I asked my Rheumatologist to test me for it but he refused.  He would only test my TSH and T4 and since there was nothing “out of range” with those, he would not test me for the antibodies.  She said she was going to test me for everything.  She said if I have the anti-bodies, she would start me on a low dose Synthroid.  She asked, “how is your daughter’s thyroid?”  I said I supposed it was good for now, but I can see the path she will be following.  She also said she would test my cortisol and ACTH.  I asked about growth hormones and she basically said that is pseudo science and she’s not going there.  She said treating that can be dangerous because if you have some underlying cellular changes, it can increase the growth and basically cause cancer. She sold me on that and I didn’t ask further!

She looked at my vitamin d and said she didn’t think 2,000 a day was enough to get my levels up from a 15.  I told her that no one had ever re-tested that for me so I had no idea if I was taking enough or not.  Again she said she would re-test that as well.  If it comes back low, she will prescribe me a higher dose.  She asked, “Who diagnosed you with Fibromyalgia?”  I said my Rheumatologist had.  She gave a sideways glance.  She said, “Looking at all of this, I definitely think you have something autoimmune going on!”  She said, “Looking at you, talking with you, you are clearly NOT depressed, but this, all these symptoms,” she circled my pages of documentation with her hand, “and the fact that no one is helping you, THAT is depressing!”  I had kept it together so well, but with that, I started bawling.  Through my tears I asked, “Could you tell my Rheumatologist that???” She handed me a tissue.  She told me that as far as the Empty Sella goes, just “put that out of your head.  It’s nothing.”  I laughed ’cause it’s already out of my head! A literal hole in my head! HAHA!  She said, “We are going to take care of you.  Take the Metformin like we discussed, I will call when all your tests are back, it will take 3 days.  I want to see you back here in 6 months.  If your levels are down and your weight is down, I will turn you back over to your GP so she can monitor you.  Any questions?  I can tell you already know a lot about this stuff.”  I said, “well, I’m practically a doctor these days.”  She laughed and said, “I bet you are!”

Before I even got to work the pharmacy called to say my prescription was ready.  I took my first pill with dinner.  The next morning I sat cautiously waiting for the terrible stomach symptoms my mother had told me about – she had tried this medication once too.  Nothing happened.  Well, this isn’t so bad!  I had given up coffee creamer again in hopes to lose some weight, even before I had gone to my appointment I knew that 30 pounds is way past my acceptable limit to myself.  At work I noticed my pharmacy had called again.  I listened to the message and it said I had a prescription ready.  I thought, well this must be a mistake because I picked it up last night.  I called them back.  It was a prescription for vitamin d.  My levels must have come back deficient again.  I said I would pick them up the next day (Saturday).  When I got there, I gave them my name and they asked, “two prescriptions?”  I was like, um that must be a mistake?  She read off, “vitamin d and levothyroxine”  I started laughing.  Three prescriptions in 3 days and I hadn’t even heard back from my doctor yet.  They couldn’t believe she hadn’t called me.  I explained that she had already gone over the if/then with me so I already kind of knew what the plan of treatment was.  The pharmacist went over the prescriptions with me.  I said I would just wait to start the thyroid medication until I had a chance to talk to my doctor on Monday.  She said she thought that was a good idea.  They do make mistakes sometimes.

Monday morning came and I waited until 9:30.  I knew the doctor didn’t get in until 9.  I pulled out the card the nurse had given me with her cell number on it.  I called.  She answered!!  I totally expected voicemail!  I said who I was, that I had been there Thursday and that 3 prescriptions had been called in for me.  She said that my vitamin d was 30 so the doctor wanted me to get my levels up.  She also said that I had tested positive for the anti-TPO antibodies so I do have Hashimoto’s.  I asked if I should stay on the Metformin as well and she said yes, just as the doctor had discussed with you.  She said because the thyroid medication can’t be taken within an hour of eating nor could it be taken within 4 hours of iron, multivitamins, etc, etc, I may want to take it before bed instead of first thing in the morning.  I asked if it was ok to take it with my Gabapentin at night, she said yes.  “Come back in 6 months.  Do you already have that appointment scheduled?”  I said yes.

I was kind of in shock.  They seemed a little laissez faire with it.  On the other hand, the doctor had spent a lot of time talking about everything in the office.  I was overcome with emotions.  Elation – finally a real diagnosis that I have been waiting for!  I knew it was autoimmune!!!  Anger – I asked my rheumatologist to test me for this a year ago!  Where would I be right now had he done it??  All my co-workers who had laughed and mocked me!  Especially my “Frenemy,” I will never forget her words to me last year, no matter how much apologizing she has done since!  Fear – what does this really mean for my health?  Hope – maybe I can get my life back???

I sat there going over the ever-growing list of medications.  NINE. Nine pills a day, that doesn’t include the regular shots, 9 months of allergy pills a year, Tylenol for headaches (I have taken a whole bottle since Christmas) and Tramadol when needed for pain.  Of course I’m going to lose weight!  Who has room for food when they are stuffing themselves with pills from morning to night!?  Speaking of shots, I had mine the day after seeing her.

Tuesday was my dreaded Rheumatology appointment.  I hate him.  He is nothing more than my drug dealer, but I need my prescriptions renewed so I have to see him.  I told the nurse of all I had been through in the last six months since I was there.  Empty Sella Syndrome, the bone loss my dentist had noted in my jaw, Metabolic Syndrome, that I am still vitamin d deficient, Hashimoto’s, all my new prescriptions.  She typed everything in and then said the doctor would be in.  He must have already fired his last new nurse because I had never seen this one before.  I could tell by the last one’s attitude about him that she wouldn’t last long.

He came in the room.  I found it interesting that he didn’t look all smug like usual.  He sat down and asked me a bunch of questions about everything.  He never once said the word “Fibromyalgia!”  What a dick!  That was all he wanted to talk about in all my previous appointments!  I asked him if all these new medications start working, could I cut back some of my other prescriptions?  He said that yes, if I lose the weight – here we go – I will not experience as much pain and it will relieve my joints and I may not need them all.  Interestingly, he couldn’t sing the praises enough of Metformin!  He said that his wife suffers from PCOS and that they were finally able to have a baby after she had been on that for 6 months.  Well, that was interesting!  I knew I had to tell my infertile endofriend.  He called it a “miracle drug.”  He was also very concerned about bone loss all of a sudden.  Hmmm.  He said he sent a note to the lab to see if he could justify a DXA scan with the insurance company.  The length of time I have been on the depo and the length of time I have had a vitamin d deficiency, coupled with the bone loss from the dentist, had him worried.  Oh, all of a sudden he cares?!  He refilled my prescriptions for Meloxicam and Gabapentin and I made my re-check with him for six months.  He said he would let me know if we can do a bone scan.

The first night I took the Levothyroxine, my eyes were wide open at 1 a.m. UGH!  The second night it was 2:15.  Ok, maybe we are working our way up to normal hours.  The next night, 2:30.  Finally back to 3.  Well, at least I have made it back to my “normal.”  I had been having stomach aches since starting the Metformin or maybe it was upping the vitamin d.  Who knows?  I had only gone to the bathroom twice in a week.  I hate constipation!  Thursday I added my second Metformin with dinner.  The next morning the diarrhea began.  Here we go.  Peeing coffee out my butt!!  I was nervous so I wore a pad in the back.  We have been super short-handed so I didn’t want to disappoint my co-workers by not being there.  With the cramping and my bowels back to their bipolar state, I was really in no mood to put up with their shit!  I told one co-worker off on Wednesday and another on Thursday.  Lord, let me get through this week without being suspended!!!  I couldn’t seem to hold it back!!  I just had no patience for ignorance this week!  I’m still trying to process everything!  I sent notes to my GP and GYNO letting them know about my Endocrinology appointment and new medications.  I haven’t heard back, but I really didn’t expect anything.  I feel like I have lost weight, but I got rid of my scale years ago.  Maybe I will check at the gym on Monday.  Until then, just popping pills and getting by.

First Spoonie Vacation Part One

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My husband worked 6 and 7 days a week so that he could save up enough money to take me on a vacation.  We haven’t been on one since we were dating more than 4 years ago.  I chose to go to Colorado because I had some kind of fantasy in my head that they had a magic elixir for my problems.  In fact, I had been nagging him that we needed to move there.  Let’s just say, I’m over it!

So we stopped in a small town along the way and went to our first dispensary in Ft Morgan.  He was like a kid in a candy store!  “Come on!  Hurry up! Get out of the car! Take my picture!!”  He stood next to the door and posed proudly.  He was smiling so big he had dimples!  He didn’t even smile like that when I was coming down the isle!  We walk in the first set of doors and the smell of pot is overwhelming.  I never liked that smell.  There was a girl behind the counter with bullet proof windows who asked us to slide our ID’s through the slot.  She buzzed us in and we went around to the counter she was at next to a big, tough looking security guard with a gun in his belt.  It was a waiting room that had some t-shirts and other gift items.  She asked for our first names, put them in the computer and told us someone would be in to get us.

A kid came out looking like a blond version of Pete Davidson from SNL.  He escorted us in.  Everything was behind the glass counters – it looked like a jewelry store, except they were filled with pot in glass jars, candy bars, baked goods.  There were pipes and bongs along the walls and shelves behind him.  “Is this your first time?  Do you guys know what you are looking for?”  My husband starts with, “You got any skunk weed?”  Pete (we’ll call him Pete) says, “no man, lots of people have been asking for that.  Where are you going?  You might find some in Denver.”  My husband replies, “We are going to Denver.  I haven’t had a good skunk in like 25 years.”  My guess was, that was exactly how old Pete was.

My husband asks him about edibles and he goes over the long list of choices.  I butt in, “I’m looking for high CBD, low THC.”  He laughs because I know exactly what I want.  I had done a lot of research.  He pulls out a container of gummy pucks.  My husband also buys some pucks, but the high THC kind.  He also picks out two different kinds of weed and a small one hitter. and then tells the guy to throw in a bottle of the juice.  I am not really experienced with all of this, but it all seemed like A LOT.  I think our bill was $86.  That seemed pretty cheap.

We drove another 2 hours into downtown Denver.  By the time we got there, I had a raging headache and after eating 2 meals out, I could feel my gallbladder rebelling.  My husband was supposed to be navigating and I had texted him all the screen shots of the maps for where we were staying, where we were going, etc.  He kept directing me back to the place we were going on Saturday.  I kept saying that wasn’t right.  We argued.  Finally, I pulled over and looked at the map.  It was in the direction I kept telling him it was.  We got to our hotel and my husband realized he was looking at the wrong map.  We checked in and went to our room.  It was non-smoking, but it was a motel so our door opened to a courtyard where there was a chair outside to smoke in.  I was complaining of my headache and my husband suggested I eat one of the gummies I bought.  Then we went back to the check in area to grab a bunch of brochures for area attractions.  The nearest restaurant was a mile walk.  We decided to order Domino’s.  I don’t understand why people like that crap!

It was an hour before the gummy kicked in.  My husband asked how I was feeling and I said the pain had finally subsided.  He asked what I thought and I told him my pain pills work way faster and better.  I had a mellow relaxed feeling, but at least I can drive on Tramadol.  Perhaps this magic elixir wasn’t really what I was looking for.

There was an hour time change between home and Denver and I woke up at 1 a.m.  Very disappointing.  I thought these gummies were supposed to cure insomnia.  I decided to eat another and go back to bed.  The next 2 hours were filled with vivid, crazy dreams.  I kept dreaming that my daughter was there with us and she was wearing something sexy to the Zombie Zone and these 3 guys were hanging around our motel door waiting for her and I kept yelling at them, “That’s MY DAUGHTER!!”  She is beautiful so I suppose I was trying to protect her from these leering men.

I got up at 3 and decided to stop fighting it.  I went outside to smoke and went into the main office for coffee.  I had already asked ahead of time if they were open all night and had coffee because of my insomnia.  As I was walking over, I saw the most beautiful skyline!  I suppose insomnia pays off sometimes.  The smell of pot was thick in the air and I was looking around for clouds of smoke – there were none.  I sat outside my hotel room watching people come and go.  I had no idea how many people check in at 3 and 4 in the morning.  There were homeless people with their backpacks of stuff walking down the street.  I’m used to being the only one up.

My husband got up around 6:30.  I decided to start getting ready.  He kept asking why I was getting ready so early and I said I wasn’t sure how long it would take to apply my make up and then his.  We went to breakfast with me all decked out in my zombie costume.  I thought I did a pretty good job.  Some man was making casual conversation with me about the food as I stood there with part of my cheek missing showing my teeth.  After breakfast we went back to the room and my husband put on his raggedy clothes.  The sad thing is, that was his favorite sweatshirt and work jeans.  He dresses all holey and torn up on a daily basis.  He fussed and didn’t want much make up or wounds.  We went back to the office and had them call a cab.  It was only 9 by then, but we had no idea how long it would take to get a cab in a big city.  At home you could wait for up to an hour.  Ours was there in 15 minutes!  We got to the mall and of course, it was not even open yet.

We walked around looking at what stores they had.  The Pavilions is a huge mall that takes up 2 square blocks and is 3 stories high.  We went to Starbucks for a coffee.  It almost feels like you are in the middle of an exercise class with all the women in yoga pants and work out clothes.  So do they jog down for a coffee?  Counter productive I would say!  Or are they telling their spouses they are going to exercise when they are really going out for a coffee?  It all seemed ridiculous to me.  As we walked around 2 homeless guys headed towards us.  One of them outstretched his arms like he was going to hug me as he approached.  My husband moved out of the way.  He puts his hands on my shoulders and says in a concerned voice, “what happened to you?”  I replied, “He got me!” and pointed to my husband.  He laughed and told me I had a great costume.  Good thing he wasn’t coming to attack because my husband had moved quite a distance away.  My hero *sarcasm*

The stores opened at 10 and we went to Claire’s.  I was wearing my contacts for the first time in a long time and had no sunglasses.  The sun is evil in Colorado.  By then I needed to pee.  We go to their “public” bathroom on the second floor, only to find that they are locked with a code!  There is a note, you must purchase something from one of the stores and they will give you the code.  Wow.  So we go to Bath and Body cause I wanted some bubble bath anyway.  I asked for the bathroom code and she wrote it on the receipt.  She commented that it was to keep the homeless out because they make the customers uncomfortable.  WOW again!  “Welcome to Denver!  Peace, Love and Happiness – as long as you are not homeless.”  I am becoming unimpressed with this town!  With legalized pot, they have the money to help people.

Next we go to a souvenir shop.  They had a sign on the door – NO ZOMBIES! Is that for real?  We walk through the shop.  There are signs every where – YOU BREAK IT, YOU BUY IT.  More welcoming…  I picked up a shot glass for my collection.  We went to pay.  The lady at the counter was making an even bigger NO ZOMBIES sign.  She was obviously proud of her work.  I said, “Sorry we broke your zombie rule.”  She said no, it was ok.  On the way out I saw they had rocks and geodes and stuff.  Dang it! I was looking for those, but I don’t want to carry a bunch of rocks around all day!  Little did I know we wouldn’t be there all day.

We walked around as my husband mapped out all the dispensaries and he decided to go in as soon as they opened.  We bought a couple candy bars, more juice and some salve – I’m still looking for my magic elixir.  We got a cute little gift bag with pictures of bongs and weed all over.  As we walked out, I raised the bag and said, “Back home they call this a ‘felony'” We looked at each other and laughed.  Since public consumption is still illegal, we went back to the coded bathrooms.  I put the cookies and cream candy bar in my purse and my husband took the sack.  I went into the stall and broke off a piece, but 2 chunks came off.  Well, I didn’t want a poor little chunk broken off by itself so I ate both.  I mean, I ate 2 pucks the night before and it didn’t really do anything anyway.  I just forgot this wasn’t the high CBD, low THC version.  And that was the beginning of the end.

We met back up and went down to the courtyard.  More people were coming and my husband choked when I told him I had eaten 2 pieces.  He knew where this was going.  My daughter texted that she wanted me to call.  The cat wasn’t doing well with his allergies.  She asked me a bunch of questions.  “Have you seen any dispensaries?”  Duh!  We have toured every one we come across!  She kept talking and talking.  I could tell my husband wanted me to get off the phone.  I swear she was just trying to gauge if I was high or not.  She is such a totalitarian!

I got off the phone and the candy was kicking in.  My husband was hungry, but every restaurant we looked at was too eclectic for him.  I told him we could go to the Hard Rock Cafe.  Just give him a regular old burger!  By then I was completely stoned.  I mean, I was playing the zombie part really well!  He put out his elbow and told me to let him lead.  We get to the restaurant and I could not focus on the menu at all.  I ordered a burger and the waiter asks, “would you like that cooked…?”  I’m like, yeah!  My husband responds, “medium.”  OH!  Not would you like a raw burger, but “how would you like that cooked?”!  Yep, I was HIGH!

As we sat there I was looking around.  My own thoughts were interrupting my thoughts.  The music was loud.  The waiter kept coming back and talking to us.  Why??  Go away!  I can’t focus on words right now!  He was jabbering on and on.  Why is this same song still on?  Why is this guy still talking?!  I heard him say there was supposed to be 100,000 people there for the Zombie Zone.  Is this guy joking??  It is all like kiddie stuff.  Cheesey photo op places, a crappy little stage.  I couldn’t even eat half the burger.  I just wanted to get out of there, away from this chattering waiter!  What the hell?!?

We head out of the restaurant and my husband suggests we leave.  We go out to the front and I get the giggles.  I’m laughing and my husband is laughing at me laughing.  All of a sudden, I feel something.  Oh lord, I hope I just peed my pants!!  I get all paranoid.  I have to go back to the bathroom!!  Get in there, nope, I got my period.  There are no sanitary dispensers in the bathroom.  Homeless women have the hardest time getting those.  HELLO! YOU DON’T EVEN ALLOW THE HOMELESS IN THE BATHROOM!!!  I’m wearing a mini skirt, with crotchless fishnets and bikini bottoms.  I can’t stuff toilet paper in my pants!!

I get out of the bathroom and can’t decide what to do!  I wanted to stay!  I wanted to see if things picked up.  But, I didn’t think people would appreciate real blood at this thing.  We are standing out at the railing of the second floor looking out to the courtyard.  I’m debating on saying anything to my husband.  I didn’t want to ruin it.  He looks out and referring to the waiter’s comment he says, “Wow.  There are tens of people here.”  I start laughing (and leaking) again.  DAMN IT!  STOP MAKING ME LAUGH!  He looks down and starts laughing again.  “You are really white knuckling it.”  I look down, I didn’t even realize I was grasping the railing for dear life.  There were tons of security guards all around all of a sudden.  I was getting real paranoid!  I looked at him and whispered, “I got my period.  There is nothing in the bathroom!”  He springs into action.  There’s a 7-11 around the corner we saw.  We go in there and he leads me straight to the feminine products.  Oh man, this is embarrassing.  I get some pads and he grabs some gum.  The only place to pay is right in the middle of their “restaurant.”  I didn’t even want to check out.  I’m mad at myself.  What am I, like 12??  I can’t handle getting my period?!?  

I was so messed up I just wanted to sit down.  But I didn’t want to leave a blood spot behind.  UGH!  I put on a pad in the locked bathroom, giving the code to anyone and everyone I saw.  FREE BATHROOMS FOR EVERYONE!  Screw this!  I tell my husband we needed to leave.  We go back out front.  I try to call for a cab.  We had made a mental note of their number – it was all the same digits, easy to remember.  Except they weren’t advertising the area code!  DANG IT!  We finally find the right number.

The lady on the phone was obviously not trained in customer service!  “We need a cab at the Pavilions Mall.”
“We need an address ma’am”
I look around, there are the street signs!  “We are at the corner of blah, blah blah.”
“We don’t pick up that way.  We need an address ma’am.”  At that point, I feel like I am playing a game of charades.  She asks, “Is there a store nearby?”
Excitedly, I call out “H&M”
Again she says, “We don’t pick up that way.  We need an address.”  This lady is really pissing me off!  Get me a cab!!!
My husband all of a sudden gives me an address and I tell it to her.  She asks, “Are you at that address?”  Hell if I know!  I am just yelling things out trying to get a damn cab!

I get off the phone – the longest damn conversation I have ever had!!!  Why is everything taking SO LONG today???  Cause I’m stoned out of my mind.  That’s why.  I ask my husband, “Was that a real address you gave?”  He points at the building across the street that has the address on it.  Oh.  As we stand there two excited girls with their dad yell out, “A cheerleader!”  I’m looking around.  Oh, that’s me!  “Can we get a picture with you?  You are the first one on our list for our scavenger hunt!”  Why sure!  The cab finally arrives.

We get in and I tell him we are staying at the Super 8 Midtown.  “Oh, ok,” he says.  He starts in, “So who you guys voting for?”  OMG!!!  My husband responds, “I don’t like either of the choices.”  Don’t you know you NEVER discuss politics?!?  He starts in.  Blah, blah, blah.  “Trump’s a rapist.”  Blah, blah, blah, blah, blah, blah.  I do NOT remember the cab ride taking this long!  He starts going on about the pot and how everyone was worried a bunch of dirty hippies would move in.  I’m sitting there high as a kite while my husband holds the bag covered in bongs…Blah, blah, blah…does this guy ever shut up???  STOP TALKING TO ME!  We pull up.  Thank GOD!!!

My husband looks up.  This is not our hotel!  I’m so glad he was paying attention cause I was ready to run screaming from this political guy!!  The guy turns off the meter and apologizes.  I googled the address of the hotel and give him the exact address.  He says, “just pay me what you think is right.”  I remembered, somehow, how much we had paid the first one.  Then he starts back in…”Hilary’s plan, blah blah blah”  UGH!!  We finally get back to the hotel and I hand him the money.  Get me to the bed!!!  I changed, take off my wounds and lay down.  I felt like there was a 500 pound elephant on me.  I tell my husband.  He laughs.  Then I sleep blissfully for 3 hours.

Undiagnosed, Over Diagnosed, Misdiagnosed

imag1149This has been quite a journey and I am only 2 1/2 years in.  After 40 years of being relatively healthy, I woke up sick one day and have never turned back.  I have been to 16 doctors in all types of fields.  I actually feel like I am just being ping ponged between specialists because no one wants to be the one to take on my problems.  Maybe I just haven’t gotten the right referral yet.  My first official diagnosis was Allergies.  Hayfever, dogs and mold.  With the mold tests I had a delayed reaction that turned into blisters.  The doctor was surprised, he had never seen anything like that.  Yet, he did not feel he needed to investigate further.  He could find no food allergies which is why I ended up there in the first place since my stomach always looked and felt like it was going to explode.

So, as all chronically ill people do, I turned to Google.  Constantly plugging in my symptoms, reading and researching.  After several months of suffering, I came across Endometriosis.  It took some convincing and several visits to the Gynocologist to get her to look for it.  I demanded a tubal ligation.  I was done having children anyway.  She went in and sure enough, it was Endometriosis.  I now have my tubes tied AND take hormones for birth control. She wasn’t a “skilled enough surgeon” to remove it.  Her words, not mine.

20150823_060632I began the allergy pills.  I began the hormone shots, but there were some things still happening to me that could not be explained.  With each hormonal cycle (you still have them even when on Depo Provera), I walked with a limp.  I kept asking, what does my vagina have to do with my ankle??  As a friend said, the vagina bone is connected to the ankle bone…yeah, I don’t think it quite works like that!  Then one day after going to the fair, the veins in my ankle exploded.  I thought it was a rash.  Maybe I had gotten into something.  I went to the doctor.  Mine was out that day.  The replacement sent me for an ultrasound because he was thinking blood clot.  No, all good.  My right leg measured an inch and a quarter bigger than the left.  A month later I brought this up to my regular doctor at my physical.  I showed her the picture.  She decided to do an ANA test.  Pain, stomach problems, peeing blood, now this.  She was sure it was Lupus.  It came back low positive 1:80, but I had several different patterns which concerned her.  She did an ENA – negative.  She sent me to the Rheumatologist anyway.  He ran a ton of blood tests and did xrays on my low back and ankle – pain areas.  It came back that I have Arthritis in both places.  I added daily Meloxicam to my pills.  Upon my next few visits, because I continued to complain of my problems, he threw in the diagnosis of Fibromyalgia and IBS and referred me to a Gastroenterologist to confirm.

A year and a half after having a sleep study done, someone decided to go over my results.  Insomnia and Severe Periodic Limb Movement Disorder.  Add Gabapentin to the growing list of meds.  After many expensive tests, including a lovely colonoscopy, the Gastro found I have gallstones.  It took 2 years, 2 ultrasounds, 2 different Gastroenterologists, a HIDA scan and colonoscopy to find something as simple and common as gallstones.  Surgery was recommended.  At this point I passed on that.  I am stubborn.  If they won’t remove the Endo, then leave the Gallbladder too!

In the meantime, I turned to a chiropractor for help with the migraines.  He found on xray that I have “military neck,” as he called it.  I have lost the curve in my neck completely.  At least his treatments do not involve pills!  And he has all but cured my migraines!  If I go too long between visits, they start creeping up again, but in the meantime, he is able to keep them at bay.

The Rheumatologist did another round of blood tests.  Add Vitamin D deficiency.  More pills.  While we are at it, let’s double the Gabapentin since I am still not sleeping.  Finally, some relief!!  Four months flare free!!  I was finally able to exercise!  Finally getting back out there and socializing again, though I had cut many people off of my “friends” list when they abandoned me during my time of need.

Out of curiosity, I had my DNA done.  I still felt like something just wasn’t right.  I do not like being completely dependent on all this medication.  These pills are only masking the real problem, not fixing it – whatever it is.  My DNA came back that I have 112/129 genes for MS.  Well that was something we hadn’t considered.  So my doctor decided to order a brain scan.  No MS, but they did “incidentally” find that I have something called Empty Sella Syndrome.  My pituitary gland is flattened to the point that it cannot be seen on MRI.  The pituitary is involved in almost every hormonal process in the body.  Interesting that my flares coincide with hormonal fluctuations.  She decided since I had already had my TSH and T4 tested, that we should check my Prolactin.  Upon further investigation, I read that the Pituitary is connected to insulin production and asked that she check my A1C as well.  In fact, last time I was at the eye doctor he saw cholesterol deposits and suggested I have my cholesterol checked as well.

As usual, after a week of waiting, I contacted the office.  At the end of the day the nurse called back and said my results were all within normal range except for my “Good Cholesterol” and I should exercise more.  Ah, yes, the proverbial – your obesity is causing all your problems.  Not to mention the 25 pound weight gain thanks to all of these medications.  I emailed my Gyno (she prescribes hormones) and told her of the Empty Sella and TSH, T4 and Prolactin tests asking if she thought there were any other hormones that should be checked.  Of course it has been a month and a half with no response.  I guess I will ask in person in November when I have my exam.  Perhaps I just need someone to refer me to an Endocrinologist.  Maybe I just need a doctor who cares and is willing to try to put this whole puzzle together.  Finally, a month after my testing, my actual blood test results showed up on my online chart.  Every one of them were flagged.  LDL too high. HDL too low, A1C 5.9 – pre-diabetes.  Yet the nurse said everything was within normal range!!

After my initial anger, I realized that none of the numbers by themselves is anything to worry about.  In combination with everything else, I wonder.  I still feel like there is something they are missing.  Something that ties it all together.  Autoimmunity?  It all seems to be connected.  Endometriosis causes inflammation.  Rampant inflammation causes arthritic damage.  A lack of vitamin d causes pain.  High cholesterol – deposits in the eyes and gallstones.  But how, why did it all begin??  And how to fix it??  And WHO CARES???  Where is Dr. House?  Where is the doctor that is supposed to want to get to the bottom of it?  Hasn’t anyone asked, why does it take up to 7 years for a definitive diagnosis of an autoimmune disorder??  Interesting that that is also the number of years women with Endometriosis often go undiagnosed for.  Is there an autoimmune connection to Endo?  Many suspect there is.  In the meantime, I will keep popping my pills, taking my shots and complaining when I need to.  There is an entire community of people out there that are among the undiagnosed, over diagnosed and misdiagnosed.  Those are my people!  Together we suffer.

Me and My Empty Sella

COFFEEThe week of my MRI, my daughter moved in with her boyfriend.  It is closer to school and work for her, but it made me so depressed.  I was a single mom for the majority of her life and every decision and choice I made was for her.  All of a sudden, I am alone.  Empty nest.  I know she had been preparing me for this.  As high school went on she was home less and less.  Work, school, activities.  Then after graduation she spent the summer coming home just 2 days a week.  And now she is gone.

The day of my MRI, I go in and of course the machine is down.  They rebooted 2 times and finally had to unplug it and plug it back in.  That gives you real confidence…  The workers (I assume they were technicians?) were very nice, but they took my glasses when I got there and put them in a locker with my purse so I really couldn’t see anything but the color of their clothes.  They asked if I was claustrophobic, I said I didn’t know because I never really tested it before.  I had just had that conversation with my husband that morning.  They had me lay down with my head in this cradling pillow.  Then they stuffed something down beside both of my ears.  First they take my sight, then they take my hearing!  Then they put on the face mask I had seen in pictures and videos of head scans.  I wondered if I looked like Hannibal Lecter.  I was in my regular clothes and had warned them that I had metal on in my bra.  She said that was fine.  For some reason I was under the impression I would break the machine with it.

The scan was completely painless.  It wasn’t loud at all because of the ear muffs or whatever they had given me.  I warned them that I was a gusher when they were getting ready to give me the dye.  She said that was good to know.  I explained when I had the HIDA scan I forgot to warn her and made a real mess.  The whole thing was over in about a half hour.  They said the radiologist would look at them in the afternoon and I should have my results by the end of day and if not, call my doctor in the morning so I wouldn’t have to worry all weekend about it.  I laughed.  I said you don’t know my doctor.  She is probably on vacation and I will hear back in 3 weeks!  She said she hoped not!

Friday I couldn’t take the waiting anymore so I called the office.  Surprise, surprise.  No she won’t be in all day.  Great.  Monday Jason called me (he was wearing black that day) and asked if I had gotten my results and asked how I was feeling.  I told him feel fine, my normal anyway.  I said no, my doctor had been out of the office Friday.  He apologized and said he wished I could talk to the radiologist directly, but that isn’t allowed.  That scared me!  WHY? What’s wrong??

Monday afternoon I called my doctor’s office again.  I told them I had an MRI Thursday and was still waiting for the results.  They explained that Jyl had been on vacation the entire week, not just Friday and her schedule was full on Monday besides having a lot of calls to return.  Oh, well excuse me for wanting to know!  They asked if I had left a message and I said no.  They said they would give her the message that I called.  Why is getting test results like pulling teeth!?  I thought this was the doctor I liked.  Now I am wondering.

Tuesday morning I took my phone to the bathroom with me.  I had been carrying it religiously since the scan.  She called.  She went over the results.  Everything was fine, brain, veins, etc etc.  Then she said, “There is a side note here.  He said you have empty sella syndrome.  Apparently your cerebral fluid has pushed into a space where it doesn’t belong and has flattened your pituitary gland to where it can’t be seen on the scan.  I am sure it is there or you wouldn’t be alive.  I will be honest with you, I have never heard of this before.  I had to look it up.  You may want to google it.”  She went on to say, “This could be the cause of your headaches and visual disturbances.  Have we ever checked your prolactin levels?”  I said no, I have never heard of that so I’m sure we haven’t.  She said, “There is one symptom listed that I don’t remember you ever mentioning, do your breasts leak?”  NO!  But that happened to my sister once when she was in exercise class!  I mentioned that at my last eye appointment the doctor mentioned that I had cholesterol deposits in my eye and next time I had blood work I should have my cholesterol checked.  She said ok, but you have to fast for that.  OH, GOD!!  I told her she is killing me!  At least I have insomnia.  I will get up at 2, drink my coffee and then fast the rest of the day.  She laughed.  When I can’t have my coffee I get headaches so bad I want to throw up.  Yes, it is an addiction…

I get back to my desk in a daze.  I have to look this up.  I put the word out to my support team and they hadn’t heard of it either.  So I started reading about this empty sella syndrome. Everything contradicts itself – imagine that! Another disease of theories. Some say it is as rare as 1% up to as common as 25% of the people have it.  Theories of causes are traumatic brain injury – haven’t had that. Child birth (pushing so hard it causes intracranial pressure enough to break through the membrane). Idiopathic Intracranial hypertension could be a cause – that is checked by a spinal tap. Inflammatory autoimmune disease (like Lupus) could be a cause. So they say most people that have it don’t experience any symptoms (or are the doctors just not listening??) But some have headaches and pituitary dysfunction. Turns out the pituitary is involved in EVERY hormonal process. I suppose you would need an endocrinologist to figure out if it is effecting any of your systems and we don’t have one closer than an hour away.  One of the possible symptoms is that you can leak brain fluid out your nose!!  How would you know??  Every time I get a cold or my allergies are acting up I am going to worry that I am literally blowing my brains out!!!

The tests for many of the hormones are long and drawn out. But my doctor said since my flares go with my hormones, it is very possible something is effected by this.  I called her back after my research and asked her to check my A1C since it can effect insulin and diabetes runs in my family. I have already had my thyroid checked and that was fine (even though it was on the lowest “normal” level. Then there is a long list of other hormones that are nearly impossible to test. Cortisol, FSH, ATCH, etc, etc. I just felt so down (the fasting for bloodwork probably didn’t help). It just seems like it is never ending. Why can’t it just be like – it is this and here is the cure?!?! When I read that it is usually “incidentally” found on brain scan, I was like, if someone wasn’t experiencing any problems, why would they be having a brain scan?!? They say it isn’t hereditary, but oddly enough, when my niece was like 8, my sister signed up for an exercise class. During the class, her nipples did start leaking. She was like what the hell??? She hadn’t had a baby in 8 years, she shouldn’t have had any milk. Can’t help but wonder if she didn’t have it too! She was cremated with no autopsy so it isn’t like I will ever know. I read one page on Chronic Fatigue Syndrome where they were proposing a study. Apparently it occurs higher than average in people with chronic fatigue (that was the theory), but I don’t think they did the study. Like endo, doctors don’t seem to care. I’m so depressed.

More tests.  More waiting.  I feel like my life has been put on hold for the last 2 1/2 years.  After a week of not hearing anything, I called.  The nurse finally called me back at the end of the day.  Everything was great.  All of my tests came back perfectly normal.  Of course they did!  I am the healthiest sick person you would ever meet.  At that point I had had a headache for 3 weeks solid.  Every waking moment.  I just want to yell and scream!!!!  Those tests were good enough for her and we are done investigating.

I put out the question in a support group.  Anyone else have this?  Is there a connection between this and endo?  I got a response.  Then the group admin said there had been no studies on this and closed my thread.  I messaged the woman who said she too had it.  I had a lot of questions.  She has Idiopathic Intracranial Hypertension.  She has to get periodic spinal taps to relieve the pressure of too much fluid, but she said it makes her head feel so much better.  Well, that’s depressing.  My doctor doesn’t seem concerned so I guess we will never know what caused mine.

I tried another group I am in for chronic migraines.  Anyone else have this?  Another response. She has Idiopathic Intracranial Hypertension as well as Chiari syndrome, but never heard of Empty Sella.  Sympathy, but not much help.  I put it out on my Facebook page.  Anyone else??  I got a response from another Endo Sister. She has it and the prolactinemia.  She takes a dopamine agonist.  That was one of the choices my doctor offered me for the insomnia and leg movement disorder.  I chose not to take it because side effects were hypersexuality, addiction and gambling problems.  That was the LAST thing I needed!!  She said it made her lose a lot of weight – I could use that!  And her addiction isn’t bad – chocolate milk shakes, which she doesn’t like but her brain tells her she needs.  I could go for a chocolate milk shake addiction that still allows me to lose weight!!  Unfortunately, knowing me, it would be the hypersexuality.  My husband couldn’t take it!  She leaks brain fluid from her nose and told me it is watery and pink.  Good to know!  I will keep my eye out!  I don’t think I have ever had that.

I debated.  Should I push the issue?  Should I keep looking or just give up?? My intuition (or maybe it was the depression) said just give up.  But part of me, the one that drives me to constantly read medical articles, said send a note to your Gyno.  She is the one who gives you the hormone shots.  Maybe she knows something. So I did.  Last Friday.  Today is only Wed. and I haven’t heard back.  I explained that the MRI showed Empty Sella Syndrome and my pituitary is smashed.  My TSH, T4 and Prolactin levels are all within range.  Should I have more tests?  I don’t know why I asked her.  She is the one who thinks endo is no big deal.  I get to see her again in November.  Lucky me.

I keep praying for an answer, but I guess I need to be more specific in my prayers.  Who knew God played with semantics?  I don’t want an answer like, your tests came back fine.  I want an answer to explain what happened to me that 2 1/2 years ago made me just wake up sick one day never to get better.  Sure, Endometriosis, Arthritis, IBS, Fibromyalgia, Vitamin D Deficiency, Insomnia, Severe Periodic Leg Movement Disorder, Allergies and Gallstones – Those are all answers I have received.  That’s why I have a handful of pills every day and hormone shots regularly.  But how could all of this happen over night?  No one cares enough to investigate further.

Doctors and Genetics

I have spent hours going over my genes.  Some people I have talked to or shared my reports with have asked me, “weren’t you afraid to know?”  The answer is no, not really.  I already know my family medical history.  I know that my paternal grandmother died of Cordoma (cancer of the spine).  I know my maternal grandmother had a stroke.  I know my paternal grandfather had his first of five heart attacks at age 48 and my sister passed from hers at 43.  I know my uncle died of cirrhosis and my other uncle brain cancer.  I know my paternal grandfather also had osteoporosis and Alzheimer’s, which is what finally took him.  My mother and daughter have peanut allergies and asthma. I even have an uncle with adult onset ADHD. Alcoholism is rampant in my family.  None of those genes surprised me in the least.  Based on what I have been through these last two years and meeting new distant relatives found in my family tree, I wasn’t even surprised I have many genes related to Crohn’s.  The part that surprised me was all of the genes related to MS.  No one in my family has ever had that, as far as I know.

Because I have an insatiable appetite for knowledge, I extensively researched that disease.  It is often misdiagnosed as Lupus (which is what my doctor thought I had) and Fibromyalgia, which is what my rheumatologist diagnosed me with.  Besides genetic risk factors, other risks are smoking and living in the northern hemisphere – due to vitamin D deficiency – which I also have.  It not only causes chronic pain, but also stomach problems, brain fog, eye problems, headaches, sleep disturbances and menstrual problems – all of which I have.  I couldn’t believe that I never looked at that disease before.

Before my last rheumatology appointment, I contacted the office and told them that I had had my DNA done and asked if my doctor would like my results.  They said yes, bring them to your appointment.  I have never been impressed with this clinic before and the doctor is underwhelming at best.  He had a new nurse this visit.  She was young.  She comes in and tells me that the doctor has an intern.  Then she tells me the guy is creepy and like 70, but good for him for going back to school.  She told me not to worry, he was just following the doctor around and not meeting alone with patients.  I thought that was a bit unprofessional for her to say, but whatever.

People talk to me differently than they would talk to most people.  I remember one time when I was working at my father’s gas station a woman came in to pay and told me she had just been diagnosed with cancer and that her daughter, who was outside washing the car windows, didn’t know yet.  Sometimes I wonder, what in the world am I supposed to do with that information?!  But I guess my young, cherub face must bring out some kind of confessional in people.  At 42, nothing people say to me surprises me anymore.  At 20, that news was tough on me – and I didn’t even know the woman!

The nurse was completely fascinated with my genetic report and told me she and her husband were considering having it done.  She asked where I got it and how much it costs and asked if she could look at it.  I told her, “of course.”  She flipped through the 16 pages of bad genes that had a magnitude of 1.5 or greater – that was the report I printed.  Every once in a while she would read one out loud in surprise, “You have a gene for a peanut allergy!?!”  I shared my mother and daughter are both allergic.  There are actually two of those genes in there.

When she left, the door opened and it was the intern – alone.  I chuckled because he was clearly in his late 40’s or early 50’s.  When you are young, everyone older than you looks old.  He asked how I was doing and I told him, great!  I haven’t had a flare since March.  This is the longest I have gone in 2 years.  I have even been able to begin walking 5 miles a day and even took a belly dance class with my mother and daughter.  I wouldn’t have been able to do that a year ago.  No stomach problems, no pain.  I feel like my old self!  I am even socializing again.

He left and the doctor came in.  He said, “my intern tells me you feel better?”  I told him the same thing I told the other guy.  He leans in and says, “That is great that you are walking now, but we need a plan in place for what you will do in the winter.”  I told him we have a gym at work.  He follows up with, “Now that we have you exercising again, we need to work on the weight.”  He makes a circling motion in the air with his hand towards my stomach area.  This guy irritates me to no end!!  He basically listed a bunch of fad diets I could try.  He goes on to pretty much say that my “Fibromyalgia” is doing better, not because of the handful of pills he has me taking everyday, but solely due to the exercise.  What a creep!  He didn’t even mention the Vitamin D – which was clearly the key to it all!  I had my blood drawn before the appointment and he went over the results.  My GFR (kidney function test) has now fallen to 58.  Chronic kidney disease – which my aunt now has – begins at less than 60.  I have now dropped 40 points since all this began two years ago.  He told me he isn’t concerned at this point because the Meloxicam that I am taking is hard on the kidneys and liver.  He said to make sure I drink plenty of water – dude, I am waterlogged daily, that is not an issue!  How many times in a day can you pee?  Obviously a lot!

When he came in, he had laid my genetic report back on the desk.  He turns to it and condescendingly patted it.  He said, “this is all Greek to me.  We didn’t study this in school.”  Um, even my chiropractor had to take a class in genetics!  He said, “I’m not going to put this in your medical file.  I think the best place for this report is in your file at home.”  OH MY GOD! THIS GUY IS SUCH A DICK!!  He went on to explain, like I am some kind of idiot, that genetics is just one piece of the puzzle.  Environmental and other risk factors are needed to set them off.  Sometimes I seriously think I must be smarter than the doctors.  I don’t know what kind of Cracker Jack Box this guy got his degree in, but I am so done with him!

Worse, as he was saying all of this, a nurse burst into the room.  “I’m sorry doctor but that patient who broke out in hives over the Remicade is now coding.”  He says, “let’s take this out in the hall.”  WHAT?!?  He comes back in the room as if that didn’t just happen.  He continues talking to me, refilling my prescriptions.  At that point I wasn’t even paying attention to him.  There is a woman down the hall CODING from the medication HE gave her and he is in here with me???  If I were coding I would want that damn doctor at my side, holding my hand, resuscitating me or whatever!  Then as an after thought he said, “I guess I better give you an exam.”

He had me get on the table.  He looked in my mouth.  Then he ran his finger down my spine and finally he bent down and squeezed my ankles.  He said, “ok, see you in January.”  That was your exam?  I am so done with this guy!!!  I left the clinic walking past the ambulance and fire trucks that were obviously there for his poor victim.  I wondered if it were any of the sweet little old ladies I had chatted with in the waiting area of the blood center.  I left my original clinic because I thought the doctors were incompetent.  They cannot be worse than this guy.  At least they wouldn’t be an hour drive each way and a half day off work.  I may switch back to them after this.  Just give me my Meloxicam and Gabapentin and I will be on my way!!  Last time I had begged my primary doctor not to make me go back there.  She can prescribe those things!  She can monitor my blood work.  But she said no, I have to keep going.

I drove back to work, completely IRATE after this visit.  I decided I needed to contact my primary doctor.  Maybe she will take a look at my genes!  My primary doctor is in a small clinic in a neighboring town.  They have a patient portal, but I have never registered for it.  I called the clinic and the only way you can register is if you come in.  I decided if I have to go there anyway, I would just write my doctor a letter and hand deliver it – the US Postal Service has gone so far downhill that I wouldn’t trust them to deliver something so important.

The letter began with giving her an update on how I am feeling and the things I have now been able to do without the pain or stomach problems.  I explained the medications I am now on.  I rehashed a little of the visit with my rheumatologist.  I told her my GFR score, which he wasn’t concerned with and how the doctor said I have improved my “Fibromyalgia” solely based on the exercise with no mention of the Vitamin D.  I don’t even know if he retested it!  Then I told her of my genetic report and that I have 115 out of 129 known genes linked to MS.  I explained that it is often misdiagnosed as Lupus or Fibromyalgia based on the symptoms and that I have all the environmental and lifestyle risk factors.  I told her at this point the medications are working, but we are treating the symptoms, not any specific disease and that my good health is solely based on taking those medications.  I told her that I am uncomfortable with that situation, even though I feel better.  I told her that I have been to the eye doctor 4 times in 2 years and they keep coming up with nothing.  “Oh, you have ocular migraines.  Oh, I wouldn’t worry about that giant vein that popped out in your eye.  It may go away, it may not.  Oh, you can’t see anything because you have eye strain from needing bifocals…”  In the last several months, whether it is because of my new medications or the disease, I now get nystagmus when I am tired – scary when you are fighting to stay awake and driving!  I ended my letter with, “We have ruled everything else out, at this point I would feel better if we could rule this out as well.”

I hand delivered the letter and signed up for the patient portal while I was there.  Then I waited.  When I hadn’t heard anything in almost a week, I initiated contact again.  I decided not to let her decipher all 16 pages of my bad genes.  Obviously it was too confusing for the rheumatologist.  So I made a report of just the MS related genes.  I sent an email on the patient portal and luckily this one allows attachments.  Most do not.  By lunch I already had a message to call her.  We are swamped at work and working overtime so it took me a couple days to get back to her.  We usually play phone tag, as I think most offices do.  It almost feels like the doctors want to be the ones to initiate the call (control freaks, or maybe egotistic), but shockingly she got right on the phone.

She asked me a whole bunch of questions about my symptoms.  She asked if I ever have tingling in my limbs.  I asked, you mean like falling asleep?  Yeah, my feet fall asleep all the time when I am sitting weird.  She asked what about when you sit normal?  I said I don’t sit normal.  I have short legs, furniture doesn’t fit me.  She laughed.  She asked if I would rather have an MRI or be referred to a neurologist?  I said I would rather do an MRI.  If I don’t have any spots on my brain or spinal cord, we will just stick with Fibromyalgia.  Just the idea of having spots on your brain is scary, but on the other hand, it sure would explain a lot!  She had me make an appointment.  I told her it will be a couple of weeks because we are working overtime right now and can’t take time off.  Really, it’s been two years so I don’t feel super rushed at this point, plus I do feel better.  I guess we will see.