Life’s Downward Spiral… Dreaming of the lottery…

I’m sitting here with a heavy feeling of depression in my gut and tears at the back of my eyes. I feel despondent and at a loss with gut wrenching disappointment and pain in my heart, dreaming of winning the lottery or coming into some money to pay off my debts and simply disappear to a new place far away from my current one. People have let me down. I have let me down. Family, what’s that anymore(?) have let me down.

What is wrong with people in our world?? Why is it that so many look to take advantage of others and then throw it in their face, blaming them instead of manning up and taking responsibility in life? Why?!

I’ve always been a giver, someone who would never leave my family to suffer without offering my hand. We’ve helped nearly every one of our family members at some point in life, even at the expense of ourselves, always at the expense of ourselves (my own family).

Finding out that family doesn’t have our back in kind, doesn’t care about all we’ve done, doesn’t even hold to their basic obligations is worse than a slap in the face. My son says I’m too soft. I’m a bit of an empath, absorbing the emotions of those around me and always trying to help those in need to the best that I’m able. We’ve made decent choices in life to get us where we are financially, living a middle class existence but even still have middle class bills so though we bring in more than some each month, we put out just as much, leaving us still struggling to stay on top of things. Yes, not the best choices and expensive bills. We could have done better. Hindsight..

We actually were doing better just a few years ago, finally paying off bills minus the mortgage and car and living in a nice house that we updated with blood, sweat, and tears as well as a lot of money. We didn’t bat an eye at an evening out for dinner or having a wild Christmas as we worked hard to get us in that place in life. (Or rather hubby did but my disability helps since my health was destroyed and so I guess I earned it by taking one for the team many many moons ago).

Yes, I spoil my children as is my right to do so and my money as well. It is not your business or anyone else’s why I do what I do or how I spend what I spend and most are long term consequences of growing up poor and living on the streets and not having the things my children now do so damn it, I earned that right!! And people who judge and think spoiled actions are the cause of certain behaviors from a child with disabilities can fuck off and try raising their own child with disabilities or maybe do a little research and realize that regardless of ‘things’ the children get, those with the same disabilities still act in kind. It’s the hand we were dealt and I know I’m not alone in this struggle as many many families have children with the same hardships and behaviors regardless of how their raised or the money they have. I’ve LEARNED that and it’s not hard to do a little research realizing the same so you can get off your high horse and quit assuming their, “simply spoiled..”

When you punch a 5 year old in the chest, leaving a red mark for hours, don’t you judge me. When you make your own decisions leaving yourself struggling financially, don’t judge me because we have and you do not. When you complain about having to pick up your own dog’s shit once a week saying my own dogs shits are bigger than her dogs shits… WTF? When you say that you want to live near us so you can help with our burden and don’t want to be a burden on us yet you move out leaving a room full of trash, not cleaned, furniture in our backyard and don’t bother to take care of your mess…. WTF? When you think your phone bill to me, that I pay for on my account, is not as important to pay as your other bills, constantly putting it off and paying late, leaving me asking for the money… WTF? (That’s all I’ve got for you, kid, cause you’ve grown up and become a man. Proud of you). When you call your son’s a pregnant wife a “fucking whore” just because and leave out pictures of his ex wife on purpose, someone you also hate… WTF? When you rant and rave during your son’s wedding, causing a scene and ruining the moment… WTF? When you look at my happy little ultrasound picture of the baby inside me and you say, “Looks like she has a penis nose…” WTF? When you purposely come out into the garage while my child is in a raging meltdown just to bate and record him, egging him on, WTF? When you ask whether I’m your sister or you landlord when I’m asking for money you owe me, WTF? When you lived barely paycheck to paycheck, sleeping on couches, cars, ect cause you didn’t have a home of your own and then you tell me living at my home is like living in a Palace and you’re grateful but then when money is due and you move out, not wanting to pay up and then complain about the living conditions, WTF?

I’m just sitting here with a heavy fucking heart thinking about, dwelling on, all the things family has said and done to me over the years and it just blows my mind. Yet we sold that beautiful home of ours to buy a run down giant fix me upper with tons of room and no storage so we can have a place for family to stay, mainly my mother who can’t afford to live on her own, and gave up our great neighbors, children’s friends, and a comfortable fat financial situation to live in a home at the top of our means, with credit cards and loans maxing out to do the necessary fixes to this crappy house and all I can think is hindsight…… Why the fuck can’t hindsight be foresight and work just as well in my disabled foggy ass brain? Cry me a river, I regret it all.

Now I sit here dreaming about winning the lottery after knowing where all the ungrateful family stands, wishing for that sliver of financial security again and a nice pot of gold so I can give what you gave and finally stand up tall against those who’ve thought it cool to simply take advantage cause we were in a good financial position and rather than working with us, you decided to work against us and act like an ass during the process.. That would be nice. My son says I’m too soft. Well I’m not so soft anymore. I’ve hardened my heart or will be after it’s done being broken and I finish my pity party, pull up my boot straps and start moving forward again. I dream of winning the lottery, knowing it’s not reality and like Murphy’s law, when your down on your luck, I already had the almost winning ticket with one number off on each one, like a taunt and a poke… and yet I still keep dreaming.

On top of all that, a man who thinks he’s rules the roost, taking money away from my mom’s spousal support, 4 of 5 hundred court ordered and yet he takes and she has no backbone or knowledge to get it handled, depending on me to help her while I sit here bitter knowing that she rarely helps in turn and yet on top of that money, he owes her 2100$ (ish) in tax money he stole, $1200 in the stimulus check wrongly deposited into his account, and half of a check sent from the escrow on the house they sold… He thinks he can continue to control and dominate her financially while getting away with it and ignoring the court’s order and so far he has. She just needs to file the paperwork which is actually not easy to find due to crappy court system but I’d already started it for her and she’s too intimidated to get it done, again, waiting on me. If I don’t help her then she’s stuck with very little funds to live off which means it falls on our shoulders in the end. That will change. Mark (his name, haha) my words. That WILL change. Only scumbags take money from others…. Seems a lot of those around.

I’m not perfect. I make my own mistakes, I’m a sucky parent, mostly due to being disabled and having severe fatigue and body wide pain keeping me laid up on my back most days and brain fog with sensory issues leaving me seeking peace and quiet due to brain overload and I feel the heavy guilt every single minute of it. The guilt weighs me down and drags me to dark places knowing I don’t provide enough of the emotional support my children need even though they are indeed spoiled, making it up in one area but leaving deficits in others and I hate myself because of it. If I had one wish between money and health, I’d choose health every time cause I have enough skills and knowledge to do great things and yet I sit here, a blob, doing nothing but day dreaming of winning that damn lottery.

This crisis with the virus has really given prime opportunity to see how family reacts and how seriously they take the health of others, namely myself who suffers too many health issues placing me at high risk. I found it to be the old folks, who are also suppose to be at risk, who could care the least, living with the mentality that they if they get the virus, oh well, not stopping to realize that those actions can directly affect me, or not caring in the least… Yup, I know where everyone stands now. A bitter little pill I’m left to swallow. Daydreaming about living in another state, Oregon maybe, and buying a little homestead with lots of trees, where I can live in my own little oasis in peace away from all those who don’t truly value family and put their needs above themselves, a trait ingrained into us military folks… So I sit and dream…..

Mixed Emotions… The Virus Experience

I’ve discovered, during this virus situation, that my obsessive need to control my situation has led to intense bouts of anxiety and a ping ponging mix of emotions while living life in lock down and practicing social distancing. One minute, I’m perfectly fine with thoughts of this virus situation being overblown while the next minute I’m freaked out and obsessively trying to avoid catching it. I’m living with a roller coaster ride of emotions and ultimately, it boils down to my need for control.

Uncertainty sucks. With little being truly known, or simply being kept from us, about this virus, it’s hard to know how seriously to take it. I rarely get sick, but when I get sick, I get seriously sick! My immune system is actually pretty good considering how many health issues I battle but when struck with even the flu, it’s pretty serious for me. I do NOT want to catch this virus. I’ve heard everything from it being like HIV to being similar to the flu. From being immune to having it settle in the body and reactivating. Those living with ME/CFS know all about viruses living dormant in the body and choosing to come out and attack you from within. Though we don’t even have certainty with the cause of ME/CFS, the thought process is out there regarding a virus being a possible culprit. Are we adding another, even more damaging virus to the possibilities that already exist for us, living dormant in the body and breaking us down over time?

Those of us who struggle already with health issues that keep us living a normally functioning life understand just how precious life can be and just how serious we need to take this virus, regardless of the mixed messages about it. Those who are healthy will never truly understand our fears, our precautions, our anxiety… they don’t live day to day fighting to simply get up without pain and/or fatigue to manage even self care on the daily. Never has the above been so apparent than it is now, while dealing with a potentially devastating virus. Seeing how family members respond and how they either seek to protect themselves and us during this time or act carelessly around us has been very enlightening.

I discovered that most of my anxiety revolves around control. I simply do NOT have control over my own life and this virus when living with other members of the family and finding myself having to depend on each and every one of them to keep both themselves and each other safe during this time. I’ve dealt with control issues since I was a child. I simply cannot control every factor of my life and have the assurance that those around me will have my best interest in mind. Trust is hard to come by and I’m learning that truly, you can only trust yourself and that’s a sad reality that’s become glaringly obvious during this pandemic.

Trust is a fragile emotion, easily broken, and hard to build or maintain. I have little trust, reassurance, or control and that causes my anxiety to flare and my emotions to bounce all over the place. It is what it is and it’s just who I am. I’m not a very emotional person and tend to compartmentalize quite well. This makes me appear cold at times but it’s simply my mechanism of handling emotions that I hold close to the vest and keep guarded quite tightly. I’m not cold. I just handle my emotions differently. Childhood had a major impact on making me who I am and how I handle things. It is what it is..

When dealing with a situation like this, it becomes apparent who really has your best interest at heart and who doesn’t. That doesn’t help those with anxiety and truly highlights that obsessive need to control and the obvious little control we truly have. Each and every person in the home has the same job of protecting each other and themselves during this time. Each action affects those in the household. We’re not simply responsible for ourselves in a situation like this, we’re responsible for each other. Each action having a ripple effect that touches those around you leading to possible consequences that can be deadly. Think about that for a minute. It’s a good opportunity to see who is taking things seriously, who is flaunting their control in your face, and who could care less about your life when it comes down to the bottom line….

Maybe they don’t realize the psychology of it. Maybe they don’t realize the very basic need that exists to survive and how paramount trust is right now. Are they so shallow and self absorbed that they don’t even realize the reality of it? Poking fun and taking risks just to laugh inside themselves and thinking it’s all a game? Maybe this virus isn’t as bad as some say. But maybe it is. I don’t have all the answers. I can only live and react with the information given and give this experience a trial run of a SHTF apocalypse situation, with much self evaluation and garnering insight about those around me.

I have time on my hands at the moment and being a deep thinker, this situation has truly given me a look into my world during a crisis and rather than simply reading about it in one of my post apocalyptic story books, a chance to actually live in a SHTF situation on a small level, giving me more insight into both myself and that of my community. I just wish others would take this time to reflect on how fragile life can be and how important building trust and community really is. Those of us with health issues that dominate our lives already know a little about this. We know about isolation. We know about the need to rely upon others at times and how fickle people can be. Now we have a chance to really know seriously or not those around us take things. How important they place our life and health and how well we can trust they’ll have our backs, making sure not to expose us to something that can be more devastating to us than most.

I wonder how those people would feel if the shoes were on the other foot… How paranoid would they be if they’re own lives were lorded over by someone else. How they would react knowing the risks to themselves and having someone else take that risk so carelessly. Deep down inside, I’d be lying if I didn’t admit to wanting to show people exactly how that feels. I’m not cold, I’m just tired of people being so damn self absorbed and careless with their own actions. Tired of seeing others think it’s all a big joke failing to realize the domino effect they put in place with their own actions and how failing to realize how important it is to protect each other and build that trust, is the real foundation to a deeper relationship with others.

I don’t have all the answers. I don’t know what the truth of this situation is. I only know I have anxiety over the severity of it, the need to control those around me to keep my own life and my children’s life safe in the event that this virus is as bad as some say and the realization that some of those closest to me don’t have our best interest at heart. That’s a hurtful discovery. But at least now I know. It just makes me think, that if I had money and a bug out shelter in the event of a large scale SHTF scenario, my circle of peeps would be quite small. Trust. It’s important. Maybe think about what truly matters in life.

The Corona Covid-19 Virus Experiment… My practice run

Is it real? Is it fake? Is it as bad as they say it is? The virus situation has caused a lot of mixed emotions… I find myself ping ponging between intense anxiety about contracting the virus and complete calm wondering if the whole thing is being overblown… So much misinformation and lack of total transparency. With so much time on our hands while we socially isolate and spend time as a family, this situation has led to a lot of deep thinking and pondering about life and what if’s…

With this experience, I’ve decided to just treat the situation as completely real, very dangerous, and go along with the government mandates of social distancing as well as wearing masks/gloves in public and washing my hands so much I have to soak them in lotion.. I’ve also decided to use this experience as a bit of an experiment.. a test per say of an apocalyptic event with SHTF. How well does my family respond? Can I trust them in this kind of situation? Will they have my life in mind and the life of my children if it came down to it? Can I trust them to have my back and put our family first?

So many questions that have netted some sad answers and put me in touch with a harsh reality I wish I hadn’t discovered. Scratch that, I’m glad I know. I’m just not happy with the outcome, but now I know. Who can I trust if SHTF and our world collapses and people need to band together to have each others back? Most people don’t think about that kind of situation but history often repeats itself and the world is fragile and fraught with dangers and possibilities even while life goes on and people are absorbed in their own little bubbles unaware of how precious and precarious life can be.

Things can change in a heartbeat and it’s important to be aware of that and know how you and your friends/family, even neighbors, would respond and react in those situations and this virus experience has provided a nice little window into exactly that… How do your friends and family respond? Can you trust them to take this seriously and do what they need to protect you and your family while protecting themselves? Or do they act recklessly putting you and your family of danger? Something to ponder…

I am happy to report that many in my community have risen to the occasion and stood up to help their neighbor. So many working tirelessly to help get hand made masks to people, food to those without, whatever needs that are not able to be met are being taken care of by many in our community of helpers that have stood up to help those in times of crisis.

This is good to know. It is my hope that if the world really went to shit and we were left to fend for ourselves that our community would band together to protect each other in time of need. Of course there will always be those who rise up to take and seek to dominate and control. I just hope there are more of us and less of them if something did happen in our country and we could indeed band together to keep our area going and protected and strong enough…

This little window into an apocalyptic event situation has been enlightening and disheartening while also encouraging and sad. I know who has my back within my own circle and I have a little glimpse into how my community might respond to a bigger event. I know which family members take my life and the lives of my children seriously, seeking to protect us and keep us out of harms way while also seeing the ones in my circle who only put themselves first and show no care or caution to me and my children. I was surprised by the outcome.

I also learned beyond the virus, who in my circle still stands to maintain obligations and agreements during financial crisis and who has kept in mind all that’s been done to help them on my own families dime. Money matters is a delicate topic that can make or break many. What I’ve discovered about family in general, to include other situations besides my own, is that some family seems to think that because we are family, bills are not as important or pressing as would be with a typical creditor. This is disheartening as we all have bills to pay and even though some are in a better financial position than others, that simply means there are bigger bills to pay as most of us spend more rather than save as we should and live below our means. A lesson we should all learn from. Hind sight…

It’s been an interesting mix of results. Family A might have my back with the virus but not with financial matters… Family B might pay those debts but could care less about exposing us to the virus… Which family member has loose lips and which guards our meager resources? Which member helps to secure needed supplies? Which member makes sure to secure their own supplies so they don’t come looking to drain my families?

An interesting experiment during this virus crisis has opened my eyes to how family would respond during a SHTF event, answering those lingering questions about my circle of people if the world did go to shit. I can’t say I’m happy about the results but I am happy to have an idea of who would take our lives seriously and who would have our backs. What does the future hold with this current situation? Will life eventually go back to normal or are we forever altered in how our lives will be from here on out? It’s hard living with this uncertainty and not knowing what life will look like even months from now. For now, I will continue to play it safe, keep my eyes and ears open and gather as much data as I can. Better safe than sorry, right?

Covid-19 VS the Flu

This is how I see the virus situation in relation to the flu, if as bad as they report. The flu does kill a lot of people each season but the difference is that the flu spreads slowly over the flu season.

Of those exposed, only 8 to 11 percent contract the flu with well under 1 percent that die. So the exposure and contractility is low in addition to it being spread out over time. This keeps the hospitals from being over run by those sick with the flu. Cdc.gov/flu/about.

If the reporting is true in regards to Covid-19, the exposure rate of this virus is extremely high compared to the flu with those contracting the virus and becoming symptomatic also being much higher.

With the numbers we have so far, and this is ever evolving, of those symptomatic, 80% experience mild illness while 20% experience moderate to severe illness. This is largely different from the flu rates. In addition, from reports I’m reading, the 20% who experience moderate to severe symptoms are the ones who end up in the hospital, taxing our hospital system. Of those 20% the death rate is between 1 and 5 percent depending on where you live.

So to recap, with less that 12% that contract the flu and less than 1% who die from the flu in addition to the slower spread over the season, this current virus could be much worse on our system and on our people due to how quickly this spreads and how high the rate of hospitalizations and death are in such short times.

Also the flu typically lasts 3 to 7 days. This new virus apparently lasts 2 weeks or longer with some having permanent lung damage and taking 6 plus weeks to gain strength back.

It’s odd how it largely affects the elderly and those with chronic conditions, vastly different from the flu which is dangerous for our young.

So if the situation with Covid-19 truly is a pandemic, the dangers to our society and hospital situation is largely that 20% who require need of the hospital and that need seems to require much longer times in the hospital compared to the flu as well as how large the exposure rate it compared to less than 12% with flu exposure.

Stay safe. Please share your thoughts in the comment section as I’m curious to what others feel about our current situation and if my post seems accurate to the situation at large.

The Day the Toilet paper sold out…

I realize how fragile our society truly is. How many of us live with fear just under the surface hidden by a false sense of security or calm. The day the toilet paper sold out speaks volumes.

Our country was sold out on the backs of hard working people to a group of corporate sponsors and money hungry vipers. Cheap labor overseas, corporate farms, pesticides, vaccines, yes vaccines, cheap polluted medicine, and parts from other countries that fall apart in short order.

It was good once. Barbie dolls were passed down to our little girls, foods fresh from local farmers and furniture that lasted for generations. We were healthier without as many chronic conditions polluting our bodies.

We’ve become a cesspool of toxic poison and broken parts all in the name of few at the expense of many.

I’m awake. Are you?

Our medical system failing in time of need, compassion going out the window, our world is waxing cold all the while people horde the toilet paper in a crisis and leaving a populous confused. Who would have thought… toilet paper?

The mad dash to empty stores of basic necessities during the calm before the storm shows how fragile our society is, the fear under the surface, the paranoia of what’s to come. Jesus, come quickly, our world needs to change, to be cleansed from the greed and uncertainty, the pain and the sorrows. We need to reset.

I don’t know what tomorrow brings. Will I survive the virus? Will there be food enough to feed us in the coming weeks and months? Will the fragile world fall apart and be broken into pieces or will we pick ourselves up by our bootstraps and say no more? No more greed, hate, broken systems,leaving people to suffer.

Fix our health care. Fix our government. Bring back our workers, farm to table, real goods, the way it use to be where we can be proud of what we bring to the table. Fix this!

No more wolves in sheep’s clothing, smearing the truth, the way, and the life. Bring the light back and let us see through the darkness. Let us see. Wake up!

Quit hording the toilet paper!!

Failures of the medical system….Why They Hit the street, taking medicine into their own hands

(The title may seem misleading at the moment. By the completion of this article, it will make more sense. This is a work in progress. ) While working on this article, I’m publishing early to allow for comments and ideas if anyone is interested in sharing to highlight the issues with our medical system. I can only share my own experience and what I’ve witnessed. So if you have anything you want me to mention that needs change, please comment so I can look into it and possibly add to the article.

Our system needs to change. It’s not working for millions of people and lack of awareness of the brokenness of our system isn’t helping. Repeating the same mistakes isn’t helping. Even with studies highlighting some of the issues leading to this disfunction change is not occurring.

I want to change the system. I want to bring awareness to some of the problems within our medical system and highlight some ways to bring change so we can avoid making these same mistakes that lead patients to taking things into their own hands; to avoid leaving patients in pain, limit their suffering, offer support and fix the errors that lead to confusion, dismissals and lack of care, especially to patients who don’t fit into neat little boxes. And maybe to bring attention to the fact that too many of us are suffering from chronic illnesses and conditions that aren’t as rare as they purpose.

I want to share my story and my son’s story as well to highlight the difficulties and challenges that have led to a breakdown in patient care. My story is not unique. I’ve discovered so many of us who suffer the same. This should not happen. We need change.

Textbooks are great for basic knowledge. But textbooks lack an essential component to doctors who treat or come upon patients suffering with unique symptoms or simply chronic conditions. What I’ve learned, simply by joining patients groups for various diseases and disorders, is that no two patients are completely alike and that textbook knowledge doesn’t come close to understanding what it is that patients suffer with on a daily basis which leads to a great misunderstanding and often dismissals of patients concerns. For example, I was once told, “MS doesn’t cause pain,” by a physical therapist. Join any Facebook or community group and see for yourself how many MS patients suffer with chronic pain, as well as how many have been told what I was, “MS doesn’t cause pain.”

We need a website set up for each disease or condition. A database that patients can access and share their symptoms that can be cataloged and graphed. It can have oversight and a team set up to verify information, diagnosis, ect. A separate site can be set up for those undiagnosed to share symptoms and other information. There’s a lot to go into it but it can be done and managed with access given to researchers, doctor’s, patients in some form or another. A section set up for patient chat with the understanding that researchers and doctor’s can have access to read, monitor and understand the day to day life of patients who suffer with whatever they specialize in so they can draw a better understanding beyond what the textbooks teach. Researchers and textbook writers can then take this information to expand upon the current information being taught in medical school. We need to get rid of the idea that doctor’s should always assume patients are horses, ignoring the zebra standing in front of them. We have way too many zebras in our world today and many of us are not being seen, heard, understood or taken care of.

This is a work in progress. I plan to edit and add to this blog as I go until I determine how I want to proceed in shaping and sharing my story. I thought about simply saving it as a draft but decided to publish it for now to allow input from anyone wanting to share their ideas, struggles or their own story.

It may take me a while to bring this to completion but it’s my goal to do just that. Being disabled is tough. In addition I’m taking care of a child who has his own disabilities.

Parts may be written offline and incorporated later. Eventually, I’m looking to publish this work and advocate for this change our medical system needs.

Dying… One day at a time

I’ve been sick a long time. As I’ve navigated the medical system trying to solve all the pieces to the puzzle, I’ve been left adrift at sea, floating aimlessly towards the waterfall taking me over the edge and to the other side. Unfortunately, doctors don’t seem to see the waterfall in front of me.

My body is falling apart. I have so many health issues taking my body in different directions but one in particular is driving me downwards on this spiral towards death that I feel deep in my gut, my heart, and my mind and yet I don’t think the doctors and specialists have an inkling of how serious my condition is or even a true understanding of what I’m suffering. I can only feel it as I fight the system, begging them to figure out what is tearing my life apart.

It’s not my ME/CFS causing this spiral. It’s not my connective tissue tearing me apart. Fibro doesn’t escalate. In 2015, I began to experience body wide vibrations which feel akin to holding onto an electrical current that pulses through my body at various intensities. It’s not left me since it first began though at times it’s barely perceivable. It’s either an issue of the muscles or the nerves but not one answer has been forthcoming. At it’s strongest, it’s been felt by others in my thigh muscles, where it seems the strongest.

In addition, my legs became like jello with heavy weights and difficulty in moving them. That feeling is not as bad as it use to be and seems to have gotten better. I’m left with fatigued muscles and a perceived slight weakness in my legs. I developed weakness in my hands as well. Not terribly, but enough to notice as I drop things much more often and don’t seem to have as much strength as I use to. I had a tremor at that time which has since disappeared only to rear it’s ugly head every now and then. Shaking in my legs that are visible and annoying that comes on out of nowhere to simply disappear once again.

I do have something neurological plaguing me. My feet lack sensation. My legs and hands go numb or tingly and I’ve had burning sunburn feeling for months in my back, a warm liquid sensation down my legs, burning patches on my skin, cold ice sensations in the back of my head and random neurological symptoms that come and go out of nowhere. The pain is body-wide. The pain and fatigue rule my life like no other. Pain in my muscles, my joints, and what I can only explain as a raw nerve like pain which predominates in my lower back, hips and legs.

My gait changed on me several years ago. It’s like the signal in my mind did not match the signal in my body. My mind tried to walk at normal pace but my feet did not operate at that speed and I took a few falls. My legs don’t seem to want to take the fast large paces I’d been accustomed to as I now walk with a short slower shuffle. It’s odd. When I try to walk faster, I can trip over my feet. The pain in my hips, thighs and butt has been severely intense requiring around the clock pain meds in order to function. I can’t stand long nor walk far without the pain increasing.

I developed faciculations about two years ago. Predominately in my thighs and butt muscles. Last year around August, I started dropping weight. In addition, my butt muscles atrophied. They’re gone. My round bulbous fat booty is no longer. My skin sags off my backside and I’m flat and unsightly back there. The fasiculations continue. On occasion, they have moved to my mid spinal area on the left side. I developed pain there shortly after. My back muscles feel weak. My shoulders and neck are weak. It’s hard to sit or stand unsupported. I’ve not had many fasiculations in the upper body though recently started them in my right arm in the back with a single muscle that flared up in pain. Will I atrophy there next?

Back in 2015, I developed cognitive dysfunction. Words were coming out backwards, memory issues, and brain fog. I told my hubby something was wrong with my brain. They found lesions. Only three small lesions, two in the frontal lobe and one in the occipital lobe but tiny and nonspecific. No answers were forthcoming. Though my speech has gotten better, my voice box is not the same. My voice had become more horse and deeper than it had before around the same time as my memory issues hit. Recently, I’ve had a few minor episodes of losing my voice momentarily. I developed a cough around two years ago. I am a smoker so there’s that.

I suffer from internal spasms. Colon spasms, diaphragm spasms and esophageal spasms. I can choke on my own saliva. This too got worse a few years ago. It seems to come and go like a roller coaster ride but the difficulty in swallowing is more consistent, there are period where I can ignore it as well as periods where I can hardly eat. Last year, I started dropping weight. I lost over 15 pounds in a few short months and from then, 135, to now 110. I have difficulty with my appetite. I don’t often feel the sensation of hunger. My bowels don’t often feel the sensation to defecate though I feel it at the sphincter area, not in my abdomen. Sometimes eating causes pain and or nausea. It’s hard to eat much and I get full quickly.

I just recently had surgery both exploratory and a hysterectomy. The doctor found endometriosis and removed it along with adhesion’s on my liver which were removed. The shocking part, during exploratory, he watched as my bowels danced in front of him, on their own accord, something he’d never seen in his many many years as a doctor. Even under anesthesia, my bowels had a mind of their own and they spasmed over and over again. I can only be thankful this was seen so that I can get a write up to share with my gastrologist who has yet to dig deep into my digestive issues. I feel no one has really taken me seriously thus far. Symptoms of pseudo-obstruction or volovus which I’ve mentioned yet no scans were ordered for me..

My surgeon, upon meeting with me during recovery, immediately mentioned my need for a neurologist. I’ve seen three already…. He gave me a suggestion and I realized it’s one I’ve researched prior and tried to see but was denied a few years ago. Maybe now, with his recommendation and write up, she’ll accept my request. Will I finally get answers to the neurological part of my health issues that have plagued me for so long?

Is it one progressive condition or two separate conditions due to the length of symptoms over 20 years and recent seriousness or change over the last 4 to 5 years.. I don’t know. I do know I’m progressing. I feel my body dying and yet the doctors around me are oblivious of my plight until I’ve hit the anger stage and simply told them straight up, “I’m dying.” That’s a huge risk given how often we’re accused of being ‘hysterical’ “somatic symptom disorder’ or simply ‘overly anxious.’ But I’m simply done caring what they think of me mentally, something that bothered me greatly before. Now, I just want some damn answers. I need help. I AM DYING. The roller coaster ride has had a downward trend over the last several years and the progression is noticeable.

It’s fatiguing to talk. I can no longer sing without serious exhaustion. My body is tight and painful and never seems to truly relax. My thigh has spacisity. My butt is atrophic. My spasms persist. My inability to hold myself up without fatigue and pain has intensified. I’m uncomfortable in my own skin. I am in pain. I have lassitude.

The system is slow and uncaring. Prayerfully soon, I’ll get answers. Since surgery, I’ve had this insistent clicking/clunking in my sternum/chest area. My hubby can feel it and I can hear it. It’s bizarre! Is it my sternum due to my connective tissue disease or my mitral valve? Is it diaphragm spasms? The hiccups are constant but an issue I’ve had for a while now. The clicking is new. I’ll mention it to my doctor during my follow up. Just another annoying symptom to add to the list of many. Will I get answers? Will I ever know what ails me? I’m starting to think I won’t….