Connecting the Dots

It was 3 months of waiting around for the rheumatologist appointment. 3 months of realizing my entire life was practically a lie, a lie told and set in stone by someone you should trust and depend on.

I was walking around on a day to day basis telling myself I don’t have POTS. It was hard and honestly it was weird. Every pain I had, every inability to complete a task, I never went back and associated it with POTS. It was something else, something yet undiscovered.

The cardiologist left us with the lingering thought that I might have some terrible nerve damage or some other extremely rare and untreatable ailment. But through research my mother and I came to the conclusion before the appointment that more than likely I had fibromyalgia. It was shocking reading articles online about the condition and how just with a quick google search the top 10 symptoms of fibromyalgia I had. Before the POTS diagnosis one of the things my mother was thinking was fibro but no one ever told us to pursue it. Now here I was 6 years later about to find out the truth and have a definite answer.

Going into the rheumatology appointment I had made a list, just a general “all the things I can remember that are wrong with me” type list. This time no stone was being left unturned and everything was being ruled out. The list goes:

  • Head tingling
  • Neck pain with/without headaches
  • Difficulty focusing eyes
  • Brain fog (memory & concentration; slurred/stuttered speech)
  • Face rash with chills
  • Elephant on chest
  • Rapid heartrate (heart feels “weird”)
  • Chest pain (worse when active)
  • Acid reflux and gastroparesis
  • Arm/hand rash (little clear bubbles & at random times)
  • Bathroom habits (half constipated or not normal)
  • Can’t feel feet/legs (sitting or at random times)
  • Cold hands and feet
  • Muscle spasms in leg, feet, back, arms
  • Chronic fatigue
  • Constant aches
  • Severe insomnia
  • Random pain like electric shocks in various locations
  • Chills and sweats
  • Dizzy spells

And that was just what I could think of off the top of my head that I have experienced in the last month on going. As I wrote it I felt this wave come over me like, oh my gosh am I messed up. I could think of no area where I was so and so “right”. But at the same time I felt like I was regaining some power in my life. I was about to go to a doctor that hopefully could help me and really look at this list with a brand new set of eyes.

Can I just say he is the nicest man. He comes into the appointment with his aged face and wrinkled hands and cracks a joke. He goes on to crack wife jokes about how he is a “bad husband” but all in good fun. But then he got down to business. I gave him the list after telling him my story and his first response was.

“Some people might look at this list and think these are all random, unrelated things, but I am looking at this list seeing a connection between each and every piece.”

I almost cried. I was so happy inside. For once it was recognition that I wasn’t making this up, it wasn’t all random, and best of all IT WASN”T ALL UNRELATED. The pieces of the puzzle were finally coming together.

The referring cardiologist suggested somethings for him to rule out and it was all done with simple blood tests. He was a little suspicious that I might have celiac but the results came back negative. In fact the results came back negative in everything. The only area was my thyroid which had me going to a different doctor to rule that out. After that was ruled normal, and just a skewed blood test result, it was time to give a final diagnosis. It was after all fibromyalgia. All the symptoms fit together, everything made sense, and it was time to discuss treatment.

For some people fibro seems like a grim diagnosis, and to my surprise it is so far from it. Like so so far from it. The first medication we tried was Gabapentin, which I could not handle on a higher dose so we switched to this magic medication called Savella. We have been figuring out the dosage and at this moment in time I am on a very low dose. I was having to severe side effects to continue upping the dose so for now it is on the lower end.

The first few weeks of taking it was a miracle. Literally a miracle. I woke up feeling WELL RESTED. I woke up PAIN FREE. I woke up feeling human. I spent my days like someone without all these things would do. I was normal. For the first time since early childhood I felt right. It didn’t exactly last long, but I can say for 3 whole weeks I felt alive again.

We started playing with the dose after 3 weeks and I crashed. The headaches were insane and I couldn’t really eat since the side effect of this medication was extreme nausea. So where I’m at now is getting my sleep issues resolved. My rheumatologist believes after I can have normal sleeping habits again we can play with the dose and prescribe maybe a counter for the side effects.

The hope is seriously there. Every day I wake up and believe that this year might be the year I finally get a handle on my medical issues. And with each appointment that passes my hope grows stronger and stronger.

hope

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Dark Depths and the Woman in White

My entire life I lived with symptoms, symptoms that seemingly didn’t fit together. All the doctors looked only at what they were trained for, sticking with what they knew best. But when more than a decade goes by and you are still struggling to live a normal life isn’t it time to wake up and realize that there might be a bigger picture.

After completing high school and entering into the world of college everything seemed to be going pretty steady. My symptoms were manageable enough to attend class, but after my classes ended I would travel home weary and tired. The brain fog consumed my thoughts. I slept when I could and never went out at night. My life consisted of going to and from the university just for educational purposes, the social life was still at a standstill.

Having been diagnosed with POTS my life consisted of maintaining the symptoms and hoping flare ups would be left at bay. My life was also very limited after seeing the cranial osteopath, I was told what I can and cannot do. The list of activities I couldn’t do grew practically every trip. It was hard to have fun when you knew that anything out of the ordinary could mess you up. Even sitting in a different chair could jam my tailbone, or lying on a pillow too high which would push my skull forward. I had to calculate my life down to a tee. Anything else would result in a flare up which would cause me to miss class, and even the disabilities office refused to work with me on my absences. I had to push myself through or face the thought of being forced on medical leave from the university and be pressed further behind on my degree progress.

Year after year went by and I could control most of my flare ups, I was far from perfect but it was still better than being bedridden. I was succeeding in school maintaining a high GPA even with my numerous absences and brain not being there half the time. In my junior year my cardiologist called me and told me he could no longer see me because his practice was refusing to see POTS patients. This happened once before when I was a minor still and the practice said no minors. He referred me to another doctor in the practice who would solely fill my prescriptions. When I finally had an appointment I was told he would only fill some of what I needed. The main problem was the sleep medication I was on, which he refused to refill. My entire life I have had sleep issues and after seeing the old cardiologist for a while he put me on Trazadone and after the Trazadone didn’t work he prescribed Ambien. The thing with Ambien is that doctors really don’t want you taking it every day for long periods of time. By this point I had been on the Ambien almost 3 years, prescribed to take up to 20mg a night every night. The next doctor refused to fill it, and I was left with my lingering supply to hopefully make it to the next doctor. Ambien has a nasty withdrawal and to flat out not prescribe it to someone who has been on it for years is wrong, especially when you know it does have a withdrawal process. And the real kicker was that not sleeping was a huge trigger for my flare ups.

I decided it was time to leave that practice all together since the doctor that would see me was not filling half of my medications and not caring about weaning me off of anything. Luckily I was able to make an appointment at a top heart center in the area and see a doctor who specifically treated POTS patients. The appointment was months away but I could wait, my hope was that she would recommend something else to help me feel like a human again. My life was so controlled by my diagnosis and I couldn’t break free no matter what I tried. I was starting to think I was a lost cause.

When the day of the appointment rolled around my mother came with because this was an incredibly important event to attend. The massive heart center must have spanned over 3 football fields with an extremely modern design. I was hopeful just walking through the door. I needed desperately a fresh take on my POTS diagnosis. When we were ushered into the backroom the doctor enters wearing the typical white doctors garb. She was beyond intense for having the thinnest frailest body imaginable. She talked fast and at some points I couldn’t even understand her. She asked me to tell my story, which I did.

“You don’t have POTS”

Excuse me? Wait what? What did she just say? I looked at my mother, as she looked back at me almost in a rage. What do you mean I don’t have POTS? She asked me to take away the POTS diagnosis and describe my symptoms.

“Because of my POTS…” She stops me and says no, take out POTS, and just describe the symptoms.

“I can’t exercise without my POTS symptoms…”

“Without the POTS…” she exclaimed.

I continue. Explaining my situation was very difficult without adding in the POTS symptoms. I was associating everything with that word. My brain fog, the blood pressure changes, the intolerance to hot and cold, the inability to exercise, the aches and pains I have all over, the chronic fatigue, all of my stomach problems, the cold sweats I would get, even my sleep issues. Everything I could think of I associated with the POTS diagnosis. Well after all I’ve been told this over and over again for years by my former doctor. Everything I had was POTS. All the symptoms were POTS. I couldn’t do this because of POTS. I couldn’t do that because of POTS. It was hard explaining it any other way.

But it was a misdiagnosis. Everything I was told was not true. After living with this diagnosis for 6 years I was told I do not have POTS. I was skeptical. So was my mother. In fact she started back talking the doctor who immediately talked over her. My mother is no wimpy woman and would never let me be pushed around by a doctor. She voiced her opinion while I sit there stunned, now rethinking practically my entire life.

The doctor told us that POTS is a regularly misdiagnosed syndrome since there is no official test to prove you have it. It is simply diagnosed by looking at your symptoms and labeling you with something so they can begin treatment. She also added that most people who truly have POTS are elderly people who can’t get up since they immediately pass out. Things like this did anger me since I knew it wasn’t true. I know in my case it might not have been POTS but by doing research it is most common in adolescents. Not once had I heard it be diagnosed to elderly patients only. She also questioned if my stomach problems actually existed which also frustrated me till no end. This woman sat there and decided to pick me apart piece by piece and tell me it was all a lie. I was questioning POTS but I was not questioning my stomach issues or migraines. Let’s just say this woman was a straight up bitch in white that had no problem exploding your brain with completely new information then stomping on you by insulting the support at home. To end the appointment she told my mother to be more accepting of this news and for me to keep a journal every day, then I would see her in 6 months. To see the look on darkmy mother’s face must have been priceless. But I signaled my mother to not say anything so we could get out of there and have a real discussion with just the two of us.

As we were walking out the door she also added that she would refer me to a rheumatologist because she thinks I might have nerve damage that might be causing some of the symptoms. We finish up the scheduling and head back to the car where I immediately start having a meltdown.

And there I was, back in the dark yet again.

Fall of a Titan

How long do you wait when you’re status isn’t improving?

Midway through my junior year of high school I was being home schooled and was completely bedridden after a diagnosis of POTS. My days consisted of waking up with deep pains all over my body with no energy to even drag myself out of bed. By the time I made it to the bathroom and back I was completely out of breath. I would collapse in bed and wait the day out. Time seemed to not exist. My mind was completely blocked with brain fog and any attempt at doing anything just wouldn’t work. I couldn’t read for my mind jumbled the letters and exhausted itself within minutes. I couldn’t talk because the stutter was so bad. The very thought of opening my mouth caused such immense pain. On some days I would strictly text to communicate with my mother since the slight movement of my fingers was less painful than actually opening my mouth.

The fatigue was all-encompassing and most of the time I needed the assistance of my mother to get around the house, most of the time leaving me with no choice. I mastered what I called the “zombie walk”, when forced to get up I would drag my legs and walk with my arms and back hunched over. In a sense I looked like a zombie walking around the house, which could come in handy if I needed to blend in during the apocalypse. For me this was the best I could do, my energy levels were just not there. Then to mention the actual process of changing positions, once I got some place I liked to stay there for a while because getting up was going to just absolutely be miserable. My eyes would “change” and my mother would hold on to me for a good 5 minutes. I felt pathetic. I felt weak.

My entire life I was raised to be strong, to be independent and rely on no one. And here I was not even able to get out of bed by myself. On plenty of occasions my mother would find me in bed broken out in such a cold sweat unable to move that my then step-father would pick me up and plop me in the car to then go to the hospital. For those of you suffering with the POTS diagnosis you know how much fun the hospital trips are. When I would go to the hospital the doctors would shake their heads and find nothing really wrong, so all you get is hydrated and sent home. For me personally I struggled with severe chest pain and the inability to breathe, which had me going to the hospital frequently. But upon arrival my vitals were fine and the doctors just didn’t care. When I described symptoms that were considered heart attack symptoms I would be practically laughed at and told I was far too young to actually have a heart attack. And throughout all the extreme flare ups I was never admitted to the hospital, well with clear vitals why would they? And back in the day doctors had no idea what POTS even was which made hospital trips even more pointless.

Each and every day I slept, sleeping was all I could do. I would dream of a life where I was actually living. Waking up with my reality was a nightmare all itself. Since I was unable to move much my doctor put me on medication to keep my muscle retention and keep my body from creating bed sores. From there we tried medications for energy, all serious controlled substances that all had the adverse effects on me. I tried Adderall and Ritalin, both made me so exhausted and in so much pain that we stopped immediately. The doctor was stumped since he never heard of those medications having that effect. I tried every supplement in the book, all with no success. My life consisted of staying in bed and sleeping my life away. I felt like I was hibernating and some day I could return to the land of the living.

sleeping titan

After a year of suffering with POTS my stomach started having issues again. This time I felt like I had a rock in my gut every time I tried to eat. So the combination of not eating, not being able to move much, and everything else made my migraines start to flare horribly. When we called the doctor treating my POTS he suggested I get tested for gastroparesis. The two tests to check for this was an endoscopy and a stomach emptying test. The endoscopy was scary since I did have to be put under, but it came back clear so we proceeded to the emptying test. This test was pain free but did require me to eat radioactive eggs, so that’s always interesting. The results told a clear story of how my stomach would not empty properly and the diagnosis of gastroparesis was given. When on average it takes a person to digest a meal maybe 2 to 4 hours, it took mine 8 hours. Again I was happy, another question answered! But there was at the time no FDA approved medication for treatment.

My body was failing and there was nothing I could do. I went through hell as a child and came out stronger, but this diagnosis knocked me down and took my life. I was unable to be like everyone else. I was unable to feel like a person. I was alive, but I was nowhere close to living.

Where It All Began

Taking you back to the start requires a bit of thinking and remembering, some of which might be hard to remember. But even with this I will try to tell you the whole story from start to finish.

I was born July 12, a month earlier than I was supposed to. My mother had gone into labor unknowingly and by the time she had realized it was too late. She was forced to deliver me without any medication to ease her pain, and worst of all I was stuck inside of her. My shoulder was stuck on her pelvis and I had to be delivered via forceps. The pain she went through was something unbelievable and something I will always appreciate. I was born a healthy weight with only a mild case of jaundice. My mother on the other hand was having complications. Although we both went home a few days later my mother had collapsed and was rushed to the hospital. She had a fever borderline brain damage levels and the doctors had no idea what was going on. Her kidneys were failing and all the antibiotics they could think of were doing nothing. She was deteriorating quickly, and only by a luck chance did a nurse whisper a doctor’s name she might try to ask for. In her delirious state she kept saying the doctorsTwo Blooms name until finally he came. He was a doctor of infectious disease and almost immediately he was able to treat her. The cause of the infection, contaminated environment.

So why am I telling you this? Why does this matter? Well for one my entire story revolves around my mother and everything she has done for me. Without her I would be nothing. She is my number one supporter and would do literally anything for me. As for why exactly this all matters, well later on this is the basis for a fair amount of my misdiagnosis.

Growing up I had a generally typical American household life. My parents were divorced so I was with my father every other weekend. The rest of the time I was with my mother and after a while my so called step-dad though they never were remarried. We lived in the suburbs and had a typical lower-middle class life. My mother worked a full time job and focused on her only child, me. Coming from her own abusive childhood her parenting techniques were a bit from the norm. She did everything the opposite of what her family did and in the end created a very independent little girl.

Things started to swing south when I was just starting 3rd grade, making me only 8 years old. I had caught the nastiest flu possible which I then passed on to my mother (which she says is the 2nd time in her life she thought she was going to die, the first being the after birth experience). Good to know I have constantly tried to off my mother. After everyone recovered I was left with a nasty stomach ache. I couldn’t eat, I was in constant pain, my bowels were all sorts of messed up, and the pain all along my throat would rage day in and day out. No one could figure out what was wrong with me. Soon the pediatrician recommended I go to the hospital, and off my mother and I went. It was a fun 16 hour trip filled with no answers, also my first hospital visit since I was born.

I don’t remember much about this visit but what I do remember is all the horrible things my 8 year old brain were thinking. The first task I was given was to drink two gallons of this chalk like substance to make my intestines glow in the dark. Fun right? I was young and I was not having it. I hardly drank any of it, in fact there was a sink in my room and my step-dad dumped most of it out when no one was looking. Then came the needles. As a young girl I was extremely needle-phobic. The mere utter of the word would throw me into a panic. And here I was about to get an IV (if you haven’t had an IV, it’s a needle like tube that stays in your arm so they can administer medication and fluids if needed). Next came the CAT scans and ultra sounds. Every test the ER could think to run, still coming up short with answers. After 16 hours and all the results coming up negative for life threatening conditions I was sent home.

The months following I was treated like a guinea pig, test after test, doctor after doctor. Until one day the 5 month waiting list was up and I could finally go to the children’s hospital. The first visit wasn’t exactly lovely. The nurse couldn’t find a vein to draw blood, and needle-phobic self was in full meltdown mode. It also wasn’t helping the nurse was giving me attitude to shut up. Then to the actual doctor, first step fingers up my rear apparently checking for damage. The amount of trauma my 8 year old self was going through today was enough to last a life time. Only two visits later was the minor tale of severe acid reflux diagnosed. Because it was left untreated for so long my esophagus was literally burning away. The doctor told us acid reflux is fairly common in children and slapped me on Prilosec which had me feeling better in a matter of weeks.

Then for the next two years my life was back to normal and I could go back to being a normal little kid.