The Demon That Is Sleep and Restless Leg

Since I could remember I’ve had sleep issues, so naturally the next progression of my medical journey would be to tackle the never ending cycle of no sleep.

A few weeks ago I finally had my appointment with a top sleep specialist in my area, and quite a bit was discussed. To start off the consult we discussed everything about my sleep habits and any issues I had. From what I could remember my sleep issues started when I hit puberty and since then it’s only gotten worse. My nights consist of routines in order to even fall asleep which include finding the proper amount of weight in the blanket combinations then being able to breathe in the cold air, and if the air isn’t cold then I need to make it, then on to my legs and feet which have always been a problem. About every night my legs have some sort of pain, whether it is a deep ache that spans my entire calves or sharp shooting pains that go into my feet. Regardless my legs and feet twitch, and some nights I even sleep with sneakers on so that my toes don’t bend backwards and spasm. Finding the right spot in order to keep my legs happy is always a challenge. Sometimes it keeps me up for hours or wakes me up periodically throughout the night. And I never wake up refreshed. I never actually feel like I slept at all.

When I actually reach the critical point of falling asleep is when I hit more trouble. Even when I was a small child I had vivid in depth nightmares which continued through my adolescents and into my adulthood. The nightmares typically do not have a reoccurring theme, but always play on my fears as nightmares would do. The main issue I have is not that they wake me up in a panic, which sometimes they do, but the fact I wake up and remember a majority of the dreams well into the day. Then to add to this I feel like I was actually living my dream the entire night so I wake up exhausted. Many times I wake up feeling like I had been running the entire night or have the bottoms of my feet so sore as if I was standing around just like in my dreams. Then I also have lucid dreams, and not the cool awesome kind, the sleep paralysis ones where it feels like someone is there or you are about to be killed. The dreams are so bizarre because my eyes are essentially open (I think, at least my mind creates the exact picture of my room as if my eyes were open) and there is either someone coming up the stairs to kill me or a ghost in my room. It freaks me out and those are the dreams I wake up in a full panic because it really throws you for a loop. I mean it seriously feels real!

During the night I also wake up with extreme thirst and typically have to get up to go to the bathroom 2 to 3 times. This of course wakes me up and doesn’t allow me to fall back asleep for about 30 minutes since I have to hit all the proper items I need. Every time I wake up I reset all of these processes. My nights usually end around 10pm, and I typically wake up around 6 or 7am to actually get up for the day. Even though that seems like a long time to be in bed, I am really only getting about 5 hours of sleep if I am lucky. Between taking forever to fall asleep and having issues staying asleep my sleep cycle is a nightmare.

So finally after seeing my rheumatologist for a few visits and getting medication for my fibromyalgia started he strongly recommended I have a sleep study done since a majority of my pain could be caused by the lack of restorative sleep.

When I did actually reach the sleep consult we discussed an overnight study then a day study. She strongly believes I have restless leg syndrome and potential for daytime sleepiness and nightmare disorders. The day study consists of a series of 20 minute naps throughout the day which can show more results than just the night study. My appointment, which was the soonest they could do, is April 12th and it couldn’t come any sooner.

For years I had thought of restless leg but always thought it was a disorder for the elderly, plus I had no doctor suggesting it could actually be something. And even though I have been on a variety of sleep medication not once has a sleep study been suggested, but as soon as I get a second opinion for the misdiagnosed POTS and the correct doctor it was practically immediately told to me that I need to have that addressed.

I have to say that in the past few months my sleep has been getting worse and worse just on my leg habits. During the day they fall asleep and at night they ache like someone has been beating me with a bat.

Since the consultation my mother has been doing research on ways to help my legs until we hit the actual study. The night last week where I had a horrible flare up (which still hasn’t subsided) and I came home like a zombie, my legs were at the point I just wanted to rip them off. The pain was beyond words. And worst of all the pain was all over my body making it harder to handle. That night when I went to bed my mother came in with a bunch of heating pads and wrap for my legs. She thought that wrapping them might help, so I laid there in bed completely out of it ready to cry as my mother carefully wrapped each leg making sure it was just tight enough. She searched all over the house for her old knee socks and put those on as well to keep the wrap in place as I slept. Then she wrapped the heating pads around each leg and got me a bunch of potassium filled munchies. I was so thankful for everything she was doing and the support she was able to give me when I literally couldn’t move. She is amazing in every way.

rest

For now each night I heat my legs and wrap them before I attempt to go to sleep. Today of course I woke up with extreme pain since last night I felt I didn’t need to wrap them, so I wrapped them today which seemed to help. All I can say is that I’m ready for this sleep study. It is so overdue and so needed.

Imagine if I fixed my sleep and my pain subsided. Now that would be a miracle. Imagine if fixing my sleep could fix a majority of my problems. Imagine waking up refreshed and happy! Now that is a future I can look forward to. It is a future where I can truly begin to bloom.

Caged Bird

“I see at intervals the glance of a curious sort of bird through the close set bars of a cage: a vivid, restless, resolute captive is there; were it but free, it would soar cloud-high.” ― Charlotte Brontë, Jane Eyre

It hacagedppened yesterday, another flare up out of the blue. I woke up early to head out for my Praxis II exams, which was then followed by my teaching assessment class midterm. I wasn’t worried about how much testing I was going to have to go through, it was more of just wanting the day to be over with. Once the exams were complete I headed home, finally able to rest. I had a nice lunch and took a relaxing shower, then decided to lay my head down for a few before heading out to my education based math class for yet another exam. And that’s when it hit me.

I was laying there and I could feel it, the creeping pain spreading from my neck to the front of my head. It wrapped around my left eye and started to pulse. My back started to tingle and the shooting pain exploded to every inch of my body. I told myself it was just a headache and to not worry. I took some Tylenol and hoped for the best. It wasn’t helping, and my status was deteriorating at an even faster rate. My legs ached and were ice cold. I was having rapid hot/cold flashes. I was in pain from head to toe.

But I pushed through, what choice do you have when it’s an hour away from exam time and at a university that could care less about your medical condition. I was forced to get out of bed, get dressed, and drive myself to my exam regardless of my pain.

By the time I was at school my mind was completely absent. I looked around and it felt like I wasn’t even there. By the time I sat down in my chair for the exam it felt like I was in a dream, those moments when you are dreaming something so real it feels real. Except mine was the exact opposite. I was there, and this wasn’t a dream.

As the exams were passed out I realized I was screwed. It was a packet of 10 pages with questions we hardly even covered. I went through each page and picked out what I automatically knew. When I hit the simple addition problems I stared at the page blankly. The question was to write a real world example for -5 – -5. The answer was 0, but my brain could not think of anything that made sense. I flipped to the next page. Find the error: 10 – -14 = 4. I looked at the problem, stared at it for a good five minutes. The error was obvious and could be applied to the rest of the problem, but my brain just stopped. I looked at the numbers and they seemed so foreign. I went to write my answer and explanation but my hand didn’t want to hold the pencil. Attempt after attempt I failed, I couldn’t hold the pencil and write properly. My handwriting on the test was so poorly written, the spaces between large font letters and sentences made it seem like I was in grade school. But no, just a senior in college having a horrible episode.

When the test was over we had class, 2 more grueling hours of mathematics. By this time I could no longer speak, or sit up straight, or even really look up. I sat in my chair hunched over with my hoodie bunched up around my neck. I was an icicle. At some moments it felt like my breath was even cold. The class passed and I wiggled and waddled out of my seat, having to pause while my blood pressure caught up with the rest of my body. Walking back to my car I was so dizzy and I could hardly breathe. The massive change in temperature blasted me as I went from a lukewarm classroom to a freezing windy outside. As I managed into the car I just wanted to cry.

I was so out of it that even the emotional process of crying was too much for my brain to handle. So I drove home with this heavy feeling in my chest. I felt like a failure, a down right absolute failure. I cursed all of this medical garbage I was dealt and thought of all my other classmates who could care less that I looked like I was dying in my seat. I thought of how wonderful it must be to not be sick all the time, how amazing life must be when your wings haven’t been clipped.

At moments like these I wonder what my life would have been like it I never would have gotten sick. How much different would things have turned out? If I was given the ability to fly from day one would I be someone completely different? If I was given the ability to fly forever would I be like everyone else around me?

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

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.

The Journey

The Start:

Ever since I could remember I was sick in some way shape or form. It all started when I was in 3rd grade and only progressed from there. Every few years a new diagnosis was given and the list grew on the thousands of reasons wrong with me. Because of that I have always identified myself as disabled, someone who is living with chronic illnesses that impairs their quality of life. The term has many different interpretations depending on who you are asking, but that is what it means to me. Life was a struggle day in and day out. You never knew what the day would bring or what drama would occur because of your illnesses. Surprises rested around every corner, and typically not good ones.

On top of the many medical conditions I was struggling with I was also dealing with an abusive household. When I was 2 years old my mother divorced my father, and it was for all the right reasons. Drugs, abuse, alcoholism, you name it and that was my father. The marriage was toxic and my mom needed a way out for her and her new child. For the longest time my father had every other weekend visitation, but that all changed when I was 12 and everything went downhill. My father was in a bicycling accident and broke his pelvis, and collarbone. I was young and he bribed me, and at the end of the day I thought why not spend every other week here. And so the abuse began.

By the time I was 16 I had been to court two times and dealing with domestic relations for years. Finally after the last court appearance I was out of being forced to go over to my father’s house. In fact that was the last time I ever spoke to or saw my father. 6 months later I was completely bedridden with a new mystery illness that forced me to be home schooled. The short and sweet diagnosis of POTS was slapped on me and I carried about my life as a weak fatigued girl.

The years from then until now have shaped me tremendously. When I entered college I haUpward and Outd no idea what to expect. After struggling with my mother through her cancer diagnosis, and my step-dad leaving us midway through treatment I was shaken. I was in a long term relationship that was falling apart all around me. And here I was trying to start over at a new school working towards a degree. Once my ex of 5 years left me because I found out he had been cheating on me the entire summer I was nothing. I did not know who I was, what I was, what I was doing. I was lost.

The Present:

Now speed up to the present: for once in my life I feel whole, I am healing. This year brought second opinions and new diagnosis which have changed my life dramatically. The ongoing struggle seems to be connected. All the symptoms have been brought together. I have started doing things I love again, thrifting, going out on photography trips, even caring about my appearance. These are slow steps, but they are steps in the right direction. Next semester (Fall 2015) I will be student teaching and graduating college. The man in my life now is the support I need. And the direction I’m headed is where I was supposed to end up all along.Through all the pain and struggle I have come out the other end knowing who I truly am, knowing what I want, and how I will get it.

How things stand right now I am dealing with a re-diagnosis of POTS, a new diagnosis of fibromyalgia, on-going chronic migraines, on-going and unresolved stomach issues (gastroparesis mainly) plus all the other weird symptoms that don’t really fall into a diagnosis. On a daily basis I typically feel horrible but I know things are on the upswing. I know if I keep on pushing I have almost reached the end goal, a life of true happiness that I have made for myself.

The Future:

So you might be asking why am I here? Why am I sharing all of this with you? And the plain and simple reason is because I know by sharing others can feel comfort. Each person has a story, some which want to be told and others that don’t. But at the end of the day it is inside of you and by sharing what you have battled through others can find comfort in knowing they too know the feeling. In this blog I plan on sharing the entire story and every battle I have won. Even in the way future when the war is won my stories will be told because in every story lies hope. I want to share with you, my readers, the everyday struggles I go t301hrough but also the days where I do something I never thought possible. Sharing the highs and the lows, and letting everyone know that there is always a light at the end of the tunnel.

Along with stories of my past I also want to share what I love to do and give advice to anyone who needs it. Photography has gotten me through a lot of my dark places and I plan on sharing as much as my work as my readers can stand. I am a beyond novice but it is a love that fuels me on days where the pain is too much. I would also love to share my other love of fashion. Since at heart I am extremely frugal I of course love to thrift and think that others might like a tip or two about how I achieve my look. On days when you aren’t feeling so good about yourself, a fun silly day of thrifting might cheer you up. In the past it has for me, so why not share it with my readers!

And on a final note I want this blog to be a space for people to share their own stories and feel safe doing so. I would love for this blog to turn into a community space where people can come to for support, a laugh, some thought provoking questions about saving a dollar, to vent, or whatever anyone needs to get through their current battle. In the end we are all warriors looking to get by.

So here my blog journey begins, feel free to comment or email me at familiarfragments@gmail.com. I hope you enjoy.