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.

Genetics Continued

Friday morning on the way to work, I was thinking how perfect it would be to get my DNA results back that day so I would have the whole weekend to read up on it.  It must have been a premonition because as I pulled into the parking lot I got the ding I have been waiting for.  “Your results are in!”

Back up a bit first.  After working on the family trees of my husband (which did not lead me to any answers) I became curious about my own background.  I went to and signed up for a free trial.  I began putting my own family information in that I knew of and I had “smart matches.”  From there I began researching obituaries, other people’s family trees and  My mother’s mother’s line was actually the easiest to trace.  It turns out we are actually direct ancestors of Capt. Myles Standish who came over on the Mayflower.  Turns out he is a big deal out east!  I am still learning about him.  I began to wonder, when did my other ancestors get to the United States.  I started talking to my family.

It turns out my dad really wanted to know about his own family.  His brother had tried to search in the past and he could only find information about 3 generations back.  I had a new mission.  In the meantime, my mother and I began speaking of all the research I had already done and I told her I was having troubles with her father’s family.  She told me a story.  Apparently a few generations back my grandfather’s family had a dispute over the support of Hitler and the family actually dropped a letter from their last name to detach from the supporters.  Now I had another clue!  I was looking under the wrong name!

It didn’t take me long to find the rest of them once I had the correct information.  My grandfather’s grandfather was a concert pianist in Germany.  His son moved to America and settled here.  Eventually his father joined his family here, but they continued to support loved ones back home.  It was my grandfather’s father who changed his name.  He didn’t just change the last name, but also changed his first name to the American version.  My grandfather is still alive and lives with my parents.  Even he did not know that his father had changed his name.  My grandfather had served in the American Army during World War II.  I think the best part of all of this is that I have gotten to know more about my close family and we have bonded over this whole experience.

I received an email through My Heritage.  “Hi, cousin!”  We emailed back and forth for a week talking about genealogy, all the exciting things I had already learned.  She used to camp in the Myles Standish State Park when she was a little girl in Girl Scouts!  I didn’t even know there was a State Park!  I finally sent a message, “I have a personal/medical question.  Does anyone in your family have endometriosis?”  She replied with, “I did!  I had to have a hysterectomy!”  She said she had a lot of first cousins and she didn’t think any of them had it, at least they never talked about it.  I told her that I didn’t know about it until I received my own diagnosis.  Then I found out it went three generations back and on both sides of my family.  I explained to her that I am actually having my genes done because I have had all these health problems and I was hoping it might be a clue for my doctor.  She went on to say that if we are related through a particular line of her family, they all have Crohn’s.  That was very interesting!  I shared with her my website and the fact that I had written a book on my experiences through diagnosis and “treatment.”

Throughout the week I was also able to find where my dad’s family “got off the boat!”  I traced his father’s line clear back to the 1600’s.  Turns out they were Catholics who came here fleeing religious persecution from England.  The information is cloudy as to whether they were from Kent or their ship was named Kent, but at least I found them.  I found it interesting because I always thought my whole family line was German.  We all had German sounding names.  I am still researching the last leg of my family, my father’s mother’s side.

On to my genetics.  I didn’t have much time in the parking lot but the very first thing I checked was my husband’s DNA compared to mine.  Thank God!  We are not even a smidge related!!  I sent him a message, “I got my DNA and we are not related at all!”  He responded, “Nice!”  We had a VERY busy day at work and I hardly had time to look at anything at all.  I went to my parents’ house at lunch thinking I might use their computer to find more information.  Well apparently they all three were out golfing!  So I sat in my car and used my phone.  I am 99.9% European.  That is no surprise with my blond hair and blue eyes.  What was surprising though is that I am only 9% German!  My grandfather’s family is the only family from Germany!  The majority of my genes are from Northwestern Europe.  Particularly British and Irish with some Scandinavian mixed in.

Then I saw it! <.1% “Unassigned.”  I click on it.  “Sometimes your DNA cannot be assigned to one of the reference datasets used by our algorithm. You may be interested to know that this means that your DNA is unlike most of what we’ve observed before! As we collect more data and update our algorithm, less of your ancestry should fall into this category.”  Alien!  I knew it!  The song from X Files starts playing in my head.  I had to text my friend in Florida.  She will love this!  We email back and forth.  “I am coming back to visit next month, let’s get together!”  I reply, “Definitely!  Unless the government is watching 23 and Me, looking for the Alien DNA, in which case I will probably be kidnapped and probed before you get here!”  “LOL”  On the way home from work, I tell my mom about what I had found.  She could not believe I was only 9% German.  She too thought our families came from there.  Then I tell her about the X factor.  She says, “Ooh!  It could be alien or maybe it’s Sasquatch!”  Haha!  My parents watch all those finding Big Foot shows!  My dad is just sure they are going to find one any day now!  I was a little disappointed that I didn’t have any cool Neanderthal skeletons like Cheddar Man.  But I guess I got my claim to fame from Myles Standish.

I uploaded my information to Promethease over lunch, but you have to wait a little bit for your report.  By then it was time to go back to work.  I had the opportunity to look a little just a little bit in the afternoon.  First thing that catches my eye:  Narcolepsy!  What??  Well that explains A LOT!  I can’t watch TV or I will fall asleep.  I can barely get through an afternoon of work without doing the head bob a couple of times.  I told my mom about that on the way home also.  She said my father’s father really struggled with that.  Every time he would sit down, he fell asleep.  In fact, since my father retired, he is the same way!  Doesn’t matter how many people are over visiting.  As soon as he sits down in his chair, he is snoring away!  Neither of them had a desk job.  They were always busy, always moving around.  Makes sense why I struggle so badly sitting in my desk chair.

Saturday morning I spent hours going over my genes and I have a much higher frequency of genes related to MS than to Lupus, though there are several related to the latter.  MS wasn’t something I had considered.  I also had tons of genes for Crohn’s which is what the gastro thought, but once she found the gallstones she was like, well there you go!  I must be closer to my new found cousin out East than I thought since she had mentioned everyone in her family had that.

Technically it’s a total crapshoot.  It’s like, what’s it gonna be?  Stroke, heart attack or cancer?  They are all quite high for me.  I already knew from my family history that these may be what is in store for me. Or, I could just get hit by a car while out walking.  Who knows?  It’s nothing to fret over really, but it may be beneficial for my doctor.

I go back to the rheumatologist next month. I printed a sheet with my info to take to my next appointment.  I also did one for my husband.  He has a lot of pain in his hands and his doctor just keeps saying, well that’s just part of the disease.  He offers him nothing for relief.

To be honest, I haven’t had a bad flare in 5 months.  That is the longest I have gone in two years.  The chiropractor has fixed my headaches, the Meloxicam really helps with the arthritis pain and apparently I just really needed that Vitamin D!!  My bowels have calmed down a lot.  I have begun walking most mornings at 5 a.m. for about three miles and I started a belly dance class on Wednesday nights plus I am still walking the two miles during our breaks at work.  I would not have been able to do all that a year ago!

I did read one interesting study done on the particular MS gene that had a 72% frequency in my genes and it basically said that it could be helped by strategically treating it with Vitamin D during certain times to help stave off the disease.  The more I read, the more I wonder if my rheumatologist is as bad as I first thought.  I still do not like the way he treats me, but again, I am way more mobile than I was before I started seeing him!  I also was surprised to see I had 4 genes linked to Fibromyalgia.  I didn’t even know genetic studies had been done on this!  There is so much information in these reports, I couldn’t possibly read everything in one morning.  I will continue to study and see what I can find.  I will check back next month after I hear what my rheumy thinks.

Adventures in Genetics,d.aXo&psig=AFQjCNE67nEGPrmsJ-bKiseO_WBJuAtRhQ&ust=1466159831647998

Descendant of Cheddar Man

My husband was adopted at age 5.  He does not have enough tangible memories to find his biological family.  When computers first came out, he and his first wife tried to search, but only reached dead ends.  The only family medical history that was given to the adoption agency was that the family had diabetes.  He has Ulcerative Colitis.  Then came the barrage of commercials and advertisements for 23 and Me.  His curiosity was piqued.  The more we saw, the more discussion we had about possibilities.

For his 45th birthday, I gifted him a DNA kit from 23 and Me.  I could justify the cost because it was his birthday after all.  We did not expect the results back for months as I had read complaints on their Facebook page from people waiting for theirs.  One morning we were getting ready for work and both of our phones dinged.  We looked thinking someone had tagged both of us in something and instead it said “Your results are in.”  I asked him, “Do you want to look?”  He said, “No, we don’t have time.  Besides I know you are going to read all about it at work today.  Just text me if you find anything.”

I was giddy with anticipation as I drove to work that morning.  I was so nervous for him, I was shaking all the way there.  I don’t know if he felt the same.  I am sure he had as much fear as excitement.  I always get my work done before I screw around on the computer so I couldn’t even look anything up until after 10.  I pulled up the page: 1609 possible family matches!  That is A LOT of people!  Unfortunately, no one closer than a second cousin on his mom’s side.  I texted him, “You have 1609 people in your family!”  He asked, “My mother?”  My heart broke for him.  You imagine this 5 year old little boy who was told, “Get your things, we are going to the sitter.”  I don’t think a baby feels the abandonment that a child of 5 would feel.

As I scrolled through the pages of unknown family I learned a lot about the service.  Apparently, in the past, they allowed people to sign in anonymously.  Many of his close matches did so.  You can also choose to share your information with any matches or keep it private until you request to share information and they accept.  You can use your name, post a picture, share information about yourself and your family history.  Some people post the last names that are associated with their family.  I clicked down the line of people to request sharing.  Before I had a chance to explore more of the site, I get a message.  “I’m sorry, how do you think we are related?”  It was a man who is related by .77% who shares the exact haplogroup as his father.  I explained in my response that I was his wife and that I gave this to him for his 45th birthday as he was adopted.  At first the man was very helpful.  He is a genealogist.  His entire family tree is posted on a website at My Heritage.

We emailed back and forth all day.  I felt a little guilty because I hadn’t given my husband the chance to say whether or not to pursue these family members and worse, we share an email on our phones so as my phone dinged all day, so did his.  Once this very helpful man realized we were looking for living family, he clammed up.  He said several times in his messaging that he “cautioned” us and “warned” us to “tread lightly” and that there is a possibility they may not want to know him.  I told him that I realized this, as who would give up a child at the age of 5?!  Then I explained that my husband had Ulcerative Colitis and a family medical history would be VERY helpful for his doctor.

That night over dinner we discussed what I had found that day.  I told him of the family members.  I told him of the conversation with Craig.  I found an interesting fact: he is related to Cheddar Man – which I found hilarious and fascinating!  Cheddar Man is the oldest skeleton ever found in Britain.  He is 9000 years old.  I also found a picture of a facial reconstruction done of him.

Then he questioned the medical history.  Well, of the 39 rare genetic diseases they test for, he did not have any of them.  Unfortunately after the FDA put a smackdown on them, they cannot give any helpful medical information.  You can download your raw genetic data, but it would take a geneticist to decipher that.  I have studied a lot of diseases on my own health journey, but reading genetic data, forget it!

With his permission, I pursued his family history.  I contacted the one closest match that is probably his mother’s cousin and almost instantly got a response.  It was her daughter responding for her as I was his wife responding for him.  She is interested in genealogy because she does not know anything about her biological father.  We chatted back and forth, but she offered no information on her mother’s relatives.  Another dead end.  Turns out, people aren’t very forthcoming when they realize what you are looking for. It is frustrating that people are so guarded.

So taking the information from Craig on his father’s side and Joyce on his mother’s side, I began my research.  It is amazing how much information you can put together from reading obituaries.  It is also depressing as hell.  I put together 2 large family trees and still can’t figure out the connection.  I found people from the families that ended up in our state and thanks to the help of Whitepages, I went on a letter writing campaign.

In the meantime, I went in search of his medical history.  As many people have complained, our computer forced a download of Windows 10.  So we have Cortana in the bottom left of our screen.  I remember seeing commercials of how awesome this thing is supposed to be.  When it first changed, my husband blew a gasket.  He does not like change or technology.  In fact, his phone updated and changed the icon of his clock and now he can never find it.  It is still a clock.  It just doesn’t look the same. So this is what I am working with.  He wanted to send his mom flowers for her birthday and he could no longer find Internet Explorer that had all his favorites and passwords saved.  I put Cortana to the test.  I asked, “where is Internet Explorer?”  Not only did she pull it up, but she pinned it to the taskbar so he could always find it!  Whew!  Disaster averted!

So I challenged her again, “Can you decipher DNA?”  She pulls up a Bing search.  To be honest, I don’t like Bing.  I am a Googler.  I thought, ugh, she is nothing more than a search engine.  But oddly enough the first article that came up was a blogger talking about what to do with your raw DNA!  Apparently there is a website called Promethease that for just $5 you upload your raw data and it sends you a report.  That day I told him what I had found.  “Yes!  Let’s do it!”  I was hesitant.  “Are you sure you want to know?”  I mean, this could be a death sentence.  On the other hand, I already know my family history.  I know we have cancer and heart disease and endometriosis.  I know that the majority of my family has died before the age of 62.  Some in their 50’s or in my sister’s case, in their 40’s.  We have alcoholism and allergies and asthma as well as some other autoimmune diseases.  Is it fair that because my family kept me that I should have this information and he shouldn’t?

We uploaded the information.  Within 10 minutes we had the report.  We sat down together.  I could not believe the size of the report or the detail of information!  There was information about his heritage.  There was information about his personality traits – and they described him to a T!  And he finally got that family medical history he was searching for: cancer and heart disease.  He also had genes linked to bi-polar disorder and schizophrenia.  That could explain why his mother gave him up at age 5.  A manic state can feel so bad that she probably imagined he would be better off with someone else.  Little did she know that they would kick him out at 16 and he would live out of one garbage bag of belongings for years, moving from couch to couch.  I don’t know if that was the life she was imagining for him.

He had tons of genes related to autoimmune disease, particularly every type of arthritis.  No wonder he hurts so bad.  Crohn’s, colitis, diabetes, scoliosis (which is already confirmed) disc disease… The list goes on and on.  Then I saw it; Endometriosis.  What???  Ok, now I HAVE to know about me!  What do my genes say about me?  My personality?  My ancestors?  Marrying someone who is adopted, especially because we have the same undiluted hair and eye color, there is a part of you that fears – what if we are related?!?  I called my mom, “What was uncle Rod doing in 1971?!?”  She says, “what’s the big deal?  It’s not like you are having any children!”  EWW!  Just NO!  My uncle, cousin twice removed, husband!  So I broke down and ordered my own test.  I am impatiently awaiting my own results.  The saga continues…

Fibromyalgia Denial

When my rheumatologist said “fibromyalgia” I was pissed.  I thought he was just saying that because he believed I was feeling more pain than I should for the conditions I have (endometriosis and arthritis) and just plain crazy.  For months, whenever I discuss my conditions, I always put “fibromyalgia” in quotations.  The gastroenterologist doing my colonoscopy was listing my conditions and she said that word.  I responded with, “that’s what Dr. Pittman says.”  I do believe Fibromyalgia is a real condition.  I also believe there are doctors who say that because they can’t figure out what is wrong so they have to put some kind of label on it.  A lot of times they seem to throw that on “crazy” people who have “imagined” pain (absolutely NO disrespect to my authentic fibro friends).

I started researching Fibromyalgia – not because I believed I had it, but because I wanted to prove him wrong.  Like, see, that’s not me!  I came across several people who either had fribro or doctors who work with fibro patients and they always question, “why do you think you don’t have it?”

Well, I don’t hurt all the time.  Just during flares. – Oh, there is such a thing as fibro flares?

Well, I had a positive ANA. – Oh, there is a subset of people who have fibro and a positive ANA?

But I don’t have the trigger points. – Oh, that isn’t required either?

What I do have is a long list of symptoms.  Paralyzing pain flares that put me in bed for at least a day.  Eventually I take pain pills so I can go to work.  I am completely exhausted, yet sleep eludes me.  I walk around in a fog (sometimes referred to as Fibro Fog), not able to follow conversations, transposing letters and numbers in my work, speaking my words out of order and unable to read and decipher the meaning of what I just read.  If I am not in bed, I am on the toilet because of the stomach problems that come with it.  They sometimes come with migraines where I put my headphones on at work for the sole purpose of drowning out the conversations that are amplified background noise that make me want to throw up.  My neck, back and ankle hurt so bad I can barely stand or even turn my head when driving.  Even after the pain subsides, the fog and exhaustion stick around, sometimes for weeks after an episode.

In researching, I came to the conclusion that perhaps my doctor does know what he is talking about.  I actually do match up with having Fibromyalgia.  It took me months to come to this realization.  I was in denial.  I am sure most people diagnosed with a chronic illness go through this in one way or another.  Anyone else have this?


Coping with Fibro Flares –

Fibromyalgia symptoms –

Immunologic Profile of People with Fibromyalgia –

A New Way of Diagnosing Fibromyalgia –

Follow Up

I met with the gastroenterologist last week for my follow up appointment.  By the time I got there my blood pressure was 141/101.  That’s the highest it has ever been.  I was feeling dizzy.  Each appointment it gets higher and higher.  I suppose it is because of the frustration I always have with each appointment.  She started by saying “I really thought it was Crohn’s, but your biopsies came back normal.  It is still possible you have it and it is hiding somewhere in your small intestines.  Normally my next step would be a camera enteroscopy, but since you are on Meloxicam for your arthritis, I don’t want to do that.  The ulcers that medication can cause look like Crohn’s and the capsule can’t take biopsies it would just muddy the waters.  You would have to be off your medication for 30 days and I don’t think that is an option for you.”

I asked, “Can’t we just do an ANCA test?”  She asked if I meant ANA and I said no, I already had a positive test for that.  I spelled it for her, “A-N-C-A”  She responded with, “that would just tell us if you have the antibodies.  Then the question is, do you have it now or will you get it in the future or maybe you have the antibodies and you will never get it?  The drugs for that disease are very powerful and I don’t want to put you through something like that unnecessarily.”  Ok, I am no doctor, but if I don’t have the antibodies, we can stop looking at it.  If I do, we know we are on the right track!  Am I the only one with common sense?!?

So I asked, “Can’t I just get an MRI?  We could look at my kidneys, liver, ureters.  Maybe the upper right sided pain is because my endo is blocking my ureters.  We could find out where that lump is. We can look at my ligaments.”  She said she can’t justify an MRI.  We could do a CT enterography, but usually the insurance companies want you to exhaust all other possible causes first.  Again, here we are letting the insurance company dictate what we do.

She said the doctor doing the colonoscopy had suggested I get a test for lactose/ lactulose intolerance and SIBO.  I asked her, “If I had those things, wouldn’t I have them all the time and not just during a flare?”  She agreed.  I said it is probably all just IBS caused by my endometriosis.  It is a very common symptom.  She agreed those tests probably aren’t what I need and that if I think it is IBS, she usually prescribes a low dose tricycline anti-depressant – she emphasized, NOT for depression, but for the stomach problems.  I said, I tried the anti-spasmatic and I gave it a fair shot and it did nothing.  I tried Cymbalta for the Fibromyalgia and it made my heart go crazy.  I don’t want to just keep taking pills without a definitive diagnosis, I am already taking a handful of pills a day.  She said I probably shouldn’t if I reacted that way to Cymbalta because my blood pressure is already bad.

She asked if I had already had an upper abdominal ultrasound.  I said it was almost 2 years ago.  She asked if I had ever had a HIDA scan.  I said no, but another doctor had brought it up to me once.  She said they would do an upper abdominal ultrsound, then if that is clear, they will make another appointment where they will inject me with dye to watch how my gallbladder functioned.  She said my gallbladder could be causing that baby’s foot feeling I always have up under my ribcage.  I said, well my sister did have her gallbladder out and I found out my mom also did.  She said, to be honest, only about 50% of her patients get relief with the removal of their gallbladder.  She said if you ask a surgeon they will tell you more like 60%.  Those don’t really sound like very good odds to me.  On the other hand, 50% is better than 0.  I agreed to the test.  I asked if it could be done in a hospital near me because I hate driving all this way all the time.  She made the appointments to the nearest hospital.  To be honest, they don’t have a very good reputation, but none of these prestigious doctors are doing anything for me either.

I scheduled my appointments and then decided I am going to make an appointment with my GP.  Maybe she will give me the antibody test.  Maybe she will give me an MRI.  I called to make the appointment.  I have a week off between my daughter’s 18th birthday and her graduation.  I don’t want to keep missing work for these appointments so I tried to schedule it during my vacation time.  Wouldn’t you know, she is on vacation the very same week?!  I swear the Force is NOT on my side!  I was able to make the appointment for directly after the ultrasound and told my boss that my appointment will take longer than I first thought and I should be in by noon that day.  I was disappointed by all of this, but after thinking about it, at least we are still looking.  At least I have some kind of imaging scheduled.  At least they will look at my kidneys and liver during the ultrasound.  I am going to try to get them to find that illusive lump.  How can everyone feel it yet no one can see it on imaging?!  Endometriosis comes to mind…

As far as the rest of my life, I have started walking in the morning with my dental assistant.  I swear she is my long lost soul sister!  We both have endo.  Turns out both of our husbands have Ulcerative Colitis (I swear there is something in the water here!).  We are both terrified of bugs!  We are both short so our walks are much more tolerable than with my Frenemy – momma long legs!  I don’t have to triple step with her to keep up!  I needed this both physically and mentally.  I have been sore, but energized each day!

I am anticipating a great flare.  I was thinking about this yesterday.  Anytime anything big is happening in my life, my first thought goes to “I’m going to have a flare.”  It is always lurking.  I fear enjoying myself for what may come after.  It is like that shadow in the corner that is always waiting to snuff out my light.  It shouldn’t be this way.  Life shouldn’t be this way.

So my daughter is turning 18.  There are a lot of emotions that come with that.  The time is going faster and faster.  We have registered her for college.  She is completing her CNA certification.  She is about to graduate high school.  My mother in law is coming and the house is a complete disaster!  My husband is building me a beautiful double decker deck in the back and wants to get it done before she gets here.  I have been furiously scrubbing the house every weekend, but everything just fills back in behind me and you would never know how hard I worked.  My husband is a pig.  I asked my daughter why she won’t help me and she said, “you married him!  I shouldn’t have to clean up after YOUR husband!”  I said, “can’t you just think of it as helping your mom instead of cleaning up after him??”

She had been adamant that she did not want a graduation party.  She was not going to do announcements.  All of a sudden, everyone tells us that they are coming over after the ceremony!  Great.  We are not having a party, but we are having a party.  So I made her sit down and figure out who all is coming.  What will we eat?  My husband now HAS to finish my deck because I want the party outside.  We are going to grill out.  There will be about 15 people.  Then it dawns on me, since we are having a party after all, we have to get announcements out!!  I sat down last weekend, designed the announcements, addressed all of the envelopes and off in the mail they went.  I have ordered the food.  I have been trying to be as organized as possible hoping to avoid the looming flare caused by stress – and of course hormones (because all of this lands directly during that time of the month).  If I survive this, it will be a miracle!!

I originally had taken just a couple days off work to get the house in order before the arrival of my mother in law.  The panic attacks began and I realized I need the whole week off!  I have to clean up the poop in the back yard from the dogs.  I want to plant some flowers.  I need to scrub this house, better that I do it when my husband isn’t home to fill it back in.  The carpets have to be shampooed.  I have to make a shopping list.  And on and on my to do list grows.  Throw in a bunch of doctors appointments, why not??  And comic con is smack in the middle of it all!  Mother’s day, CNA testing, senior night, other people graduating…Calgon take me away!!!