The Rheumatologist

The office is quiet as I sit here waiting to meet my new specialist.  I cannot help but think…  damn, this is how the world might be from now on, all of us wearing masks, staying six feet apart, walking into sparse rooms with the allowed number of people…  Oh, and how can I forget being approached by a masked, gloved nurse to have my temperature taken upon entering the building.  If all this was not stressful enough, there is the reason I am here in the first place;  to meet the newest member of my medical team, the highly recommended rheumatologist, to add another piece to the puzzle of my dysfunctional body.  I want my quality of life back… 

  So here I am in my N95 mask, waiting to meet Dr. Bones (no names or centers will be released in this post).  My heart and mind are racing.   I have so many questions!  I have been prepping for this appointment for over two months.  At a glance, I might appear calm as I sit with my notebook placed on my lap until you notice one of my legs bouncing up and down.  Breath! I tell myself.   The door opens slowly and a petite, dark-haired, very young woman walks in (wearing a mask of course).   “Hi, I am Dr. Bones”.   She sits down and immediately starts to review my medical records.  There are almost no words exchanged,  but it is okay.   I felt she was really trying to make sense of the numbers before her;  maybe something has been overlooked in my previous labs, or maybe there is a false negative.  Whatever the case might be,  Dr. Bones put on gloves and started the trigger point test.  It took only a second before she touched my arms causing me to jump.  I told her to stop.  It felt like sharp razors were being dragged along my skin.  My body’s immediate reaction was to give me goosebumps and put me on high alert to protect myself- as if I was experiencing major physical trauma.  She cautiously continued as she monitored my reactions.  She broke her silence and confirmed the speculations of my other doctors.  She told me I had a very severe case of fibromyalgia that probably started with my birth and accelerated with certain events during the first few years of my life (you can read about that in a previous post).  So it seems,  at a very early age my nerve endings were already heightened and more receptive to developing fibromyalgia later in life.  Then, when you sprinkle on more physical trauma as the year’s pass, it leads to nerve endings that are angry and ready to cause unbelievable pain for no reason in the blink of an eye. The worst part is it will continue for the rest of my life!   UNACCEPTABLE!!!     

  I should be ending here with one of the most painful of all diagnoses of fibromyalgia,  but there is more to tell my doctor.   I describe an extreme pain in my spine that makes loud, deep cracks when I move a certain way.  Without a word, she ended the physical exam today.  With pen in hand and an intense look on her face,  the rheumatologist began writing several pages worth of lab tests, x-rays, and scans that would need to be completed before our next visit.  Though I will be proactive and get all my testing done,  technically,  I am in a state of limbo until my next appointment.  So, to be continued…  

 

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

Resource Page

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The Fine Line Between

If there is one thing I am unable to stand for it is that of non- transparency of businesses. That is why I am here to give a little more understanding of how I went from being bi-polar, to I have severe anxiety, PTSD, Fibromyalgia, and some unknown auto-immune disorder. The line between mental and physical health is a fine one, so many symptoms overlap, present themselves as something they aren’t. Even the best can get it wrong, but not so wrong that it does not make sense.  So here is the evolution of how it went from mental diagnosis, of Bi-polar, to actually being severe PTSD, which has now turned into severe physical conditions.

Bipolarbree1, started as a way for me to process my thoughts, and the desire to connect with others who might be going through, and or has gone through a similar situation as myself. As time went on, therapy sessions took place; medication checks up’s and changes were frequent but my irritability, inability to stop drinking, think before I took actions, night terrors were all still present, something is not fitting with this bipolar diagnosis, not to mention this is the beginning of when my body started to turn on me.   During my next visit, Dr. Matt and I decided we should retest me, using the CAPS-5 gold standard in post-traumatic stress disorder testing.

As I sat in the cool waiting room reading and answering each question as my life depended on it, because it did, but I did not know it at this point. So I finish up this and returned it to the psychologist whom I just had to disclose three of the traumatic events.  It was one of the hardest things to do because I believed I had cleared the trauma and was able to talk about them, but within the first few words, I was physically and mentally in a different state.  She advised, I keep seeing Dr. Quintal because I am a long way away, and it seems to her I might not be Bi-polar, but severely traumatized, but we will have to wait for the CAPS-5 test to come back.  I had scored off the charts for Posttraumatic Stress Disorder, and it was advised that I stay in weekly therapy along with Rapid Resolution Therapy.

As I cleared the troubling events, a lot of the symptoms were left at a manageable level with therapy, medical marijuana, and writing. Writing is my way of best self -understanding, and expression. There were some, that no amount of therapy could fully cure, especially if the threshold you have for trauma was started damaged, so from a medical standpoint, I was at high risk for developing fibromyalgia, So that with all the events that caused me to be traumatized added to this life-altering, extremely painful diagnosis of fibromyalgia, and there is still one mystery diagnosis on the table we are testing for, this one goes under the chronic pain condition they also gave me, because they have yet to figure out why my spine feels as it is being crushed, and the horrific spanning sound, not normal at the young age of 29. So this is now the journey of life with Anxiety, PTSD, Fibromyalgia, and a mysterious auto-immune disorder.  I will cover everything from how I manage each symptom, what it feels like,  how I am going about with research, and everything in between.  So thank you for taking your valuable time to read my journey.

 

 

Resources: https://www.ptsd.va.gov/professional/assessment/adult-int

/caps.asp

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

 

 

 

 

 

 

 

 

 

 

 

 

Fibromyalgia – The Flare

So here I stand wearing nothing but a soft sports bra, and very soft panties because anything else against my skin is complete agony.  The breeze from the fan keeps my body cool, maybe cooler than I want to feel, but turning it off would make me feel nauseous.  This is how it starts.  There is a mental checklist of red flags that signal I am about to have a flare-up.

I can almost feel my brain telling the over-active neurons within the central nervous system what body part it should attack.  It usually starts with an intense tingling sensation in my right hand,  moves quickly across my upper shoulders, then shoots down my spine, and then zap!…  My body now starts to feel as if it has been set on fire, with nails being dragged across my burning flesh.  Agony is what I feel and this sensation is called Allodynia.  *

Did you think I was in a “ full flair” yet?  Nope, this is just the start.

Ugh.  My ears are so sensitive to sound! Why is everything on max volume?  The fan that is keeping me from feeling nauseated, is making me freeze now.  A few hours have passed and my body is experiencing about five to seven different sensations all at once, whether they go together or not. The feeling that my brain is too big for my skull, is a strange one.  Around this time I usually start to throw –up, because the pain and my senses are on over-load.  So now, here I lie on the hardwood floor, with a low –grade fever, my skin on fire, the bones in my spine and upper neck, and sometimes my face feels as if it is being completely crushed, and… I still have that burning sensation that feels like my skin is on fire that has not gone away! I need it to stop!  Frustration!

 

If being physically robbed of your quality of life wasn’t enough, it takes your mental clarity, memory, and energy as well. One of the most frustrating. A symptom is called something called “ Fibro Fog”.  Fibro fog is a cognitive dysfunction, which affects your ability to think clearly, and even remember the simplest thing.   I have learned I do need a sense of humor when it comes to having fibromyalgia.  More than once my cell phone was found in the refrigerator.  If there is not humor towards yourself,  this diagnosis will try to control your life. This is part of the reason why I have not posted in literally forever. I have been trying to manage my fibro and all the horrific and painful symptoms no one can do anything about.

 

* Technically Allodynia is the experience of feeling pain from stimuli that aren’t normally painful and the result of a pain processing dysfunction in the nervous system. *  Though usually associated with migraines there is a crossover to fibromyalgia. There are three types of Allodynia:  Static allodynia is what one feels from a light touch on the skin; Dynamic allodynia happens with movement across the skin; Thermal allodynia happens in response to mild changes in the temperature.  Though usually associated with migraines there is a crossover to fibromyalgia.  This is only one of the hundred life-altering symptoms one can experience, but this is enough for one day, at least for these fingers it is.

 

 

 

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

 

Reference: https://americanmigrainefoundation.org/resource-library/what-to-know-about-allodynia/

 

Infants needing touch

Mood State- 5 Feeling Good!

 

From the moment we are born, we are comforted by our mother’s warm touch, safe in her arms and feeling love for the first time.

If only… if only I had been held as a newborn would I have all the relationship issues I have today? That was the question that was burning in my brain as I woke up this morning. So much for entering the new day in a calm state of mind. Now I am hyper-focused on my birth and the lack of emotional and physical attention I had in my first few months of life most likely the cause of my trust and bonding issues I live with.

I was abandoned at birth in a Russian hospital where I spent my first four months of life, fighting to survive as a 3lb 4oz premie. I was moved to an orphanage that had one hundred children under the age of five years old with only five caretakers. About 20 of those children were infants.  Needless to say, I missed the attention and physical touch that calms the brain and develops the necessary human bond of trust. These are basic things I missed – knowing I   would be picked up when crying and fed when hungry and held with love. Apparently, and according to my therapist, it has impacted me throughout my whole life causing havoc.

Developing bonds with friends, partners, and even my parents were challenging. I tend to keep everybody at a distance,  and only share bits of important information that one would need to know to understand me. I do not attach myself and always prepare for the worst. I am always ready for my new friend to hurt me, but as a pattern, I would usually do something to cause the friendship to end before I got hurt. I have ruined and lost a few good people because of this.  When I do make a friend I question why do they want to be my friend and what do they see in me?  Can I trust them?  Would they have my back and cherish the information I share with them? I also don’t want to be a burden to them. I know I can be a lot to handle and do talk a lot and have energy when I shouldn’t, and especially annoying to some,  love deep conversations. I am overly caring at times, but also super mean and distant somedays. I know these behaviors can be worked on to an extent –  I’ve been made more aware of that.  Making friends is easy, but keeping them is the hard part. Getting the anxiety to calm down enough to realize I am worth their friendship and I am not a burden. To have them understand that if I am up at 3 or 4am, walking back and forth in the house, it is anxiety and to just let me be, or hold me if I allow. That brings me to my control anxiety. I have to always be in control…. but that will be, for another day…

With therapy and understanding friends,

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

Mood State Pyramid

There are so many days where I want to post and talk with you, but my mind is too distracted, unfocused, anxious, and or depressed.  I have been thinking, there is no reason why that should stop me from posting.  Every mood is just another part of my daily life.  As I learn more about my bipolar illness I have become familiar with the Mood State Pyramid (created by  DBSA San Diego).  This pyramid was developed to be an easy tool to track mood swings by assigning a number to a mood level.  The rating system starts at 0 -Extremely Depressed, Suicidal and goes to 10- Full Mania.  Having a general idea of how I am feeling each day helps me understand why I may get upset easier or why I wake up angry or agitated, or why on some days I can’t do anything but sleep.  My mood will control how I write, edit, and interact with you.  I am starting to be okay with each post not being consistent in writing style or attitude because depending on my mood number,  it will reflect how I am feeling that day.  So from now on, I will put a number with each post.  Mental Health is something we all need to be open and talk about, so let’s start here.

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

First Time For Everything ….911

Mood State- 8 Beginning of Mania

My hands are shaking, no time to think, I just act, 1,2,3,4,5, 1,2,3,4,5, call 911!  Hello? my friend just stopped breathing!  I could hear her gasp for air then silence.  You have to send EMS NOW!  My basic medical training kicked in and I started CPR.  Two police officers were the first to show up,  followed by EMS and the Fire department. As they flooded into her house Christina’s heart started and she began to breathe again.  Christina was annoyed, had no idea what happened and just wanted everybody out of her house but me.  She said they could take her vital signs but no hospital (and no health insurance).  It was not my choice but I would stay and look after her. We relaxed, watched movies and talked all night, she started to ask me questions about what happened. I explained there were paramedics in the house because she had stopped breathing. Her response blew me away – she said it was okay, it happens.  Say what!! No that does not just happen, not to a young, healthy, women. Unknown to me at the time was that she had a history of heart issues.  The next morning we decided to get breakfast, so we casually hop on her scooter to just go a few blocks to the supermarket. Everything was going great, wind in hair, laughs, then suddenly a car hit us from behind as we turned onto the street, and sped off.  We crashed!  I was lucky.  Witnesses said I jumped off the scooter like a ninja before it hit the ground, but Christan stayed on and hit the pavement.  I quickly got to her, and about six neighbors and a passing car all came running over to us. Christina slowly tried to get up, I gave her my hand to just sit up, and let me look at the injuries. They weren’t good, but she was conscious for now. She told everybody she was fine, and we got on the scooter and drove to her house where another friend was waiting. Given everything that had happened within the last twenty-four hours, we really wanted to take her to the Emergency Room but she refused.  I made a deal that if she was not better by 9pm I’m calling 911.  The next few hours gave me some time to process everything that had happened within the last two days and focusing my energy on her was the only way I knew how to cope at that very moment.

It is 9pm and Christina is complaining of her head hurting, Chest pain, and her lower back, than just than she lays back and doesn’t respond to me. I can not wait this out, she stopped breathing the other night. so I called 911, and told them “I have a young female, not really responsive, but conscious and breathing.” They ask, drugs, no, they ask me if sure? Yes, just hurry!

Remember this is my second night without good sleep, and constant worry, my mood is changing to fully manic and I knew if I didn’t get some quality sleep soon, it would end up with us both in an emergency. Paramedics, firemen, and police all show up, Christina finally came to, but was so confused, scared, and did not understand what happened, she thought she just took a nap. After some arguments, explaining and reassurance she agreed to go to the hospital to get checked out. Relief!! So I thought! That next moment she went crazy on the paramedics, they kept asking me what drugs she did. I said over and over she did not take drugs, and either do I. I said I swear this is not an overdose, they all didn’t believe me. Once at the hospital, the drug test came back a negative, and we both said duh! This isn’t an overdose. Christina was not having it with this nurse, named her big Bertha, and kept calling her that, big Bertha got upset and decided to call security on us, for laughing and joking. Just trying to keep my friend clam here! Laughter is the best medicine; I also did not get how I was the one in the room and had to take full responsibility for Christina’s life and safety that evening. I’m freaking. That’s a lot. So this security guard truly was no help, after assessing the situation, he just smiled, and gave a little laugh to both of us, because he knew it was ridiculous the nurse felt threatened for her safety with us. We’re both tiny women. We just wanted answers, which in the end, they failed to give us. So we head home, I do my best to stay awake, to keep her up for an hour then she can go to sleep. I am not sure how long I can stay up for but my adrenaline is flowing, so I knew I could not fall into a deep sleep. expect I did, and that is what worried me, but everything turned out great. It is crazy what our mind and body can handle during stressful situations.

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

Irma and New York City

Bright lights, tons of people, all different unfamiliar loud sounds, with no idea where you are heading next. A person with Bi-Polar, or Anxiety worst nightmare, The feeling of being trapped.  Nothing was going to scare me or trigger a PTSD flashback. As I sit on the train into the city, looking out the window, remembering the last time I was here, NYC is like a playground for adults. As we approach the city, I collect my things and make my way to the exit. From the moment I stepped out of the train, it was complete craziness. I had forgotten, how many more layers of security had been added to the city.  As I make my way through Penn Station I see military soldiers with guns on their backs placed all around.  In addition to the military soldiers were the NYPD scattered in small groups, with some including an explosive-detecting dog.  I absorb everything but my excitement to see my best friend is all I am thinking about. I find my train, and take it all the way downtown.  It is so crowded there is nowhere to sit so I stand as I hold my bag close to me with my phone in my hand.  My stop approaches, and I quickly exit the subway, look around fast, and find my way out of the station. If there is one thing I started to remember is to be careful who you ask for directions.  It is easy to get turned around in this city and for safety reasons I found myself asking only police officers for directions. One officer downtown I asked for directions offered to escort me to where I had to go.  I wasn’t sure if he was serious or not so I just smiled and gave a little laugh and said thank you.

Having lived in New York City just shy of four years ago now, I was not completely clueless.  I knew how Avenue and Streets ran, and what went uptown, and what went downtown, iPhones can only help so far in a city this packed.  I also learned real quick how expensive the city really was, and it made me realize how blessed I was to have had lived there for two years, not had to hold a solid job, and enjoyed modeling and working in nightlife.  Anyway,  in this city,  anything can happen, I had to stay sober, strong, and alert. Which was not a problem because I was so nervous about really getting lost.  The evening starts to approach, and I finally get to my second friend’s apartment, where I end up staying the night, unplanned. I was super excited to be shown nightlife again, but on a much different level, I got to wear jeans and flats!!! We found the only pool hall on the east side, only known to locals. It was packed, I closed my eyes took a deep breath, grabbed my friend’s hand, and pushed our way to the back, where the pool table was. I felt safe, not crowded, and I wouldn’t get bumped into and pushed around. I laughed, danced, and drank too many red bulls. Wired, we made our way to the next bar around 2am. This bar was my favorite, it was very laid back with a more hipster feel.  As 4am approached, either of us was ready to go home, so we headed out to Brooklyn, to this underground club, that was super tiny and quietly packed.  I felt in my old element, house music playing, and all the most beautiful girls around me. Yep! not going home anytime soon! I have never been happier to be dancing in flats! Although I was making the best out of the worst situation possible, having to evacuate the state of Florida, where Irma was about to destroy. I was not ready to think about all the damage, and maybe not having a home to go back to. As my time in the city came to an end, I met up with one last friend and attended my first hot yoga class. I loved it instantly. and can not wait to attend one back home. That is if the studio is still standing after Irma. Coming back to my Aunt’s house, was the only anxiety I had felt since I left the Island. I finally had time to think, maybe too much time. My Aunt’s house is so beautiful, set on acres of land, with chickens and alpacas, and children playing soccer at the school next door, it is pure serenity. I only have a few more days in New York, excitement and nervousness are all I feel, excited to get my life going again, and to see all my close friends from my hometown, who stayed through the hurricane.
Going back home is going to be unlike any return trip home I have ever had.  There is so much uncertainty, but I keep telling myself, what others have told me, these are just things.

During this whole time away I have been closely checking in with all my friends back home, and I am glad to know they are all safe. I think they are just as excited as I am for me to be home.

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

The Creativity Process

 

Taking time to be creative is so important to embrace when you are learning how to manage daily life with mental health issues.  Whether you have a Masters Degree in writing or Art or you just like to sit down and let the thoughts flow out, finding your inner voice and expressing it creatively is cathartic.   I love to paint and I love to write. The direction I go in depends on the mood of the moment (I am a rapid cycle Bipolar 1). That being said, as a result of many therapy sessions, I am getting better at being able to know where I am in the mood pyramid and plan my activities accordingly.  I also have an app on my phone that I use to take notice of my feelings and the little things that happen to me throughout the day. During the course of one day in Mania, I can experience a wide range of moods from so anxious that I am sick to my stomach too so productive I cannot keep up with my thoughts. Usually, long hours of sleep from twenty-four to forty-eight are required to reset the mood cycle. I use the emotions and feelings I have just experienced insight into how I will express myself.  It all starts with a feeling that directs me toward writing or painting for a release.  Today I will express myself through writing and gather my thoughts and piece back information I am feeling or have felt. When I put the words on paper, they are mine and agree or disagree they are still mine. I find it empowering.

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.

24 Hours with anxiety​

The unexplained fear, racy heart and sweaty palms, the three daily symptoms of my anxiety and panic disorder.

The room was filled with silence my mind so stressed out I feel like my heart is going to come right out of my body, my breathing becomes labored and shallow. An anxiety attack, the best way to ruin a good day. Some days they are so bad I can’t function, the littlest things set me off, unanswered texts, a friend who is late to my house, food taking too long to cook, and the most simple of all showering. Self-care is one of the hardest, my curly hair tied up in a messy bun, unbrushed for a few days, put up to dry from my shower the day before.
I grab myself a cup of coffee, take my medication, and let Bailey play outside. As I sit there, enjoying my medical joint of the morning, I think Not today Anxiety, Not Today! As it comes to the end, I call for Bailey, and we go about and start the day. My first house task, cleaning the kitchen, I look around and imminently feel overwhelmed, and disorganized. Disorganization is one of my biggest triggers for a panic attack, so I try and make sense of the situation as fast as I can. As the kitchen gets under control, I am able to think of the next, daunting task, the worst of them all, the process is so stressful, and timing has to be just right. This task is laundry, which can take me up to a week or 10 days, to go through the whole process. I usually just found it easier to buy new clothes. That is another story. As the day goes on I am very aware of my daily limit on what I can do, this did not happen overnight, but with great help from therapy, and self-help little progress is possible.
It is not 1 pm and I am exhausted and ready for a nap, I try to fight the sleepiness, sitting outside watching my little girl play outside, while the sun shines on my pale skin. I have had a very strong change of thought and heart about being in the sun since I was a teenager, Bronzer can do wonders! As time passes I just become more and more anxious, about what. who knows. Due to my illness, I have not to be permitted to work, so I started Bipolarbree, it is more than just a blog, but a way to interact with others suffering.  I started a twitter account and Facebook accounts for all of you.

 

FaceBook: Bipolarbree1
Twitter- @Bipolarbree1

Business Inquiries Email- Bipolarbree1@gmail.com

 

 

 

Disclaimer: No portion of this may be shared without my written permission and used as your own.