Pillcations

Anyone following my blog is probably curious as to how things are going.  I tried to up the Metformin as instructed, but after 3 weeks of suffering, I couldn’t take the pain and diarrhea any longer.  I called the Endocrinologist’s office begging to get off of that medication.  She told me to stop, take a break and start back with one pill.  After 2 weeks try to add another and then 2 more weeks, etc until I got back up to 4.  I now call it a Pillcation.  I did some research on how to make the medicine more tolerable and I started eating a salad with dinner each night.  That really helped.  I also read one woman said she ate Kashi Go Lean for breakfast and it really helped with the morning pills.  I started tracking what made things worse and eliminating them.  Can’t over eat.  Can’t eat sweets.  Have a salad with supper, Kashi Go Lean for breakfast.  Every once in a while I take another Pillcation.

I weigh myself on Wednesdays in the Wellness Coordinator’s office.  It is best to stick with the same scale.  I have lost 16 pounds since this began (of the 30 I gained in 3 years).  I guess the Endocrinologist was right – the weight would just fall off!  She just didn’t mention how!!  It was hard at first to walk past the treats that always showed up at work, but now, knowing what it will cost me if I eat it, it is NOT WORTH IT!!  My wellness coordinator compared the medicine to Anabuse except for food, not alcohol.  Good analogy!

My insomnia hasn’t changed which is a bummer, but the Levothyroxine seems to have made my hormones kick in.  There were a few days where I was completely hormonal and crazy, but luckily that hasn’t come back!  I had 2 weeks in February where I was so horny I couldn’t get enough.  My husband was an exhausted but willing participant.  I did have another flare and a period so I contacted my gyno and they had me come in for another shot at 8 weeks.  I finally stopped bleeding.  She said the Levothyroxine isn’t necessarily making me hormonal but changes in medication and weight can bring it on.  We shall see what this month brings!

As for the Vitamin D, I have been taking 5000 daily.  I had a coupon for a free spray tan and tried it out.  I decided I looked much better with a tan than skin that is so white it is a shade of clear and talked to the tanning salon extensively about Vitamin D.  I decided since Comicon is a couple months away and I do NOT want to be frumpy ol’ Velma again this year, that I should get a tan so I joined their monthly program.  I can only go for 8 minutes at a time, but somehow I feel even more energetic.  I also started using 8 pound weights to work my arms.  I would love to have toned arms again!  I pulled out an old favorite picture from when I was in Spain the first time and use that as motivation to keep going.  I still walk the 30 minutes every day and all the chores on the weekend.  I have taken several Tramadol in the last couple of months, but I have decided I have the medication, I shouldn’t wait until I am in complete agony to take it!  I have only used half a bottle in over a year so I am not abusing it at all.  Thanks to the lovely weather the allergies have started up way early this year.  Add more pills to my day…boom! Sinus infection!  Antibiotics, more pills…  It has been rough, but I am going to keep going.  For the most part, with the changes in diet, smaller pants size, working on a tan, it seems to make the other stuff more bearable.  Sometimes people ask me, how do you keep going?  My answer is always the same, how can I not?

Endometriosis Awareness Month

For the start of #endoawareness month it is fitting that I should be bleeding, I guess.  I haven’t posted since starting my new meds.  By week 2 and pill 2 of the Metformin I was getting so sick that I called the nurse and told her that I don’t even want to eat supper anymore because I know that with supper comes the pills and with the pills comes the worst stomach flu like symptoms.  She told me to stop taking them for 2 days, reboot and try again.  This time, just take one with supper for 2 weeks, then add the next one for 2 weeks, etc, etc until I am up to the 4 they want me to take a day.  I started eating salad before every meal and it really helped.  Maybe I just needed more fiber?  When it came time to add the morning pill I was scared that the stomach problems would happen at work and that just wouldn’t do!  I read online, someone said eating Kashi Go Lean cereal really helped when taking the pills in the morning and I will try anything, so I bought a box and it really did help!  No problems making it through the day at work!

The Levothyroxine has made me completely hormonal.  I went from off the charts horny to furious with my husband – for no reason really.  We had fight number 3 in 5 years!  I went to bed angry for probably the first time ever in our relationship.  The next morning he asked me if I remembered getting up that night.  I said no.  Apparently, I got up a couple hours after going to bed, walked out and glared at him, went to the bathroom and went back to bed.  No recollection of getting up.  He went on to say that he came to bed 20 minutes later.  I rolled over, started stroking his hair, and then started to strangle him.  He said I was squeezing his throat so hard that I was digging my nails in.  That really freaked me out!  I said I should send a note to my doctor!  The meds for severe periodic limb movement are obviously not working!  He told me not to and I asked why he didn’t wake me up??  He said it didn’t hurt that bad.  I asked, what if I had gotten up and gotten a knife or something?! That scares me!  My father punches my mother in his sleep and before Christmas he strangled her with 2 hands.  He has undiagnosed sleep disorders and I obviously inherited them from him!

Besides the stomach problems and hormonal swings, I am now down 15 pounds.  That is half of the weight I gained since getting sick in just 1 1/2 months.  I am excited about it and have more energy.  Nothing has changed with the insomnia, which I had hoped it would help.  I had a bone scan with my rheumatologist, but as usual, I have not heard the results.  My last blood tests were posted and my kidney function has finally gotten out of the red.  Just slightly, but any improvement is improvement!

Last weekend something happened where my husband and I were both experiencing excruciating joint pain.  Him in his hands, me in my ankles.  Both of them this time.  At least when it is just one I can limp along.  This time I barely made it through the grocery store hobbling on both feet.  We had a blizzard the day before, but the weather was beautiful Saturday and Sunday.  Usually my joint pains happen when there is a change in the weather for the worse, not better.  Then the spotting began.  It was brown/black and made me think I was rotting from the inside out.  I had six days of that mess.  Wednesday I bloated up so bad again at work that I had to undo my pants for half the day.  I took a pain pill both Wednesday and Thursday.  I emailed my Gyno and asked if I should move up my shot since I was bleeding and not scheduled for the next one until the beginning of April.  She emailed back and told me to come in any time.  It seems like since my Hashi’s diagnosis, the doctors are taking me more seriously now.  It kind of makes me mad.  Same illness and symptoms, just now I have a name for it.  Or several names for it.  I felt like maybe I had a cyst burst yesterday, but I’m not going to waste my time with an ultrasound.  They never find anything and when they do, they don’t do anything about it anyway.

I joined a Hashimoto’s support group and they are so helpful!  If you ask a question, you will get 50 responses.  Many suggest magnesium and said it would help with insomnia.  I tried taking liquid magnesium yesterday in the afternoon (during a block of time when I am not taking any other pills).  It tasted TERRIBLE!  Within an hour my stomach sounded like a volcano was about to erupt.  I felt like I was going to lose control of my bowels.  I was sitting there sweating, praying that the diarrhea wouldn’t come.  Nothing happened.  Then all the way home it was the same worry, and still nothing came.  I was up at 2:45 a.m. today, so it did not help my sleep any.  I wonder how long it would take to start working?  I don’t know if it is worth that kind of torture!  Last night I went from spotting old blood to full on period.  I should have known that the most recent flare was an Endo flare.  All the old symptoms back again.  Stomach problems, back pain, limping, foggy – oh yeah, and don’t forget bitchy!  I had a customer tell me on Tuesday that I was rude and hostile…Not that he didn’t deserve it!

I guess it is fitting that since March is Endometriosis Awareness month that I should be having my usual flare.  I hoe everyone else is doing better!  Spread the word!  #Findacure #endowarriors

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.