Wednesday, May 15, 2019

How Can You Help...

One of the biggest frustrations my friends have expressed about my situation is they don't know what they can do for me. And honestly, because my problems all revolve around my government treating the disabled like leeches, the only thing people can do that really helps is give me money. So I've made a list of a few ways you can do that without just mailing me a check...

You can donate to my #GoFundMe. Everything raised from that now goes towards paying off the debt created over the last few year by the horrible shit we all had to go through. Until that is gone there is no way I can afford to replace my #ServiceDog, and as many of you know that is causing many problems in my life. For more about that check out #MorganFamilySupport or go to Morgan Family Support on GoFundMe and read the updates.

You can buy gift cards for my local grocery store Wegmans and have them sent to me. Wegmans lets you buy the cards online at Wegman's Gift Cards. If you need my address, please PM me. These cards will be used to buy things SNAP doesn't cover like toilet paper, cleaning supplies, personal care items, and food for Book my #EmotionalSupportAnimal first (yes kids he's been given an upgrade), then for food for me.

I have a wishlist on Amazon that's really more wants than needs, but if you'd like to help my mind as much as my body, this is a great place to go. The listing is open to the public, and you can order it through Amazon to have gifts sent right to me from Catherine's Wishlist

Last but not least, you can just send me money. My PayPal is linked to my adreamingone account and money sent to me directly will be used to pay for things like my meds, health care supplies that insurance doesn't pay for, clothing, and general expected and unexpected life expenses.

Thank you all for your continued love and support. I know Book and I wouldn't have made it this far without you.

Tuesday, May 14, 2019

Things I've learned

In the past, I have been afraid for very good reasons. Rape, abuse, neglect... Those experiences taught me what danger feels like not just from my side, but from other people as well. How other people feel when they are a threat to me. As I got older, I started to trust that and I did well in life. I don't know how linked those two things are.

The ex forced me to doubt myself all the time or risk being abused by him. Now, I can't leave my home I'm so afraid. I can't trust myself or anyone else. Everything feels like a threat. I'm not doing well. I believe the two are connected.

I don't know how to move forward with this knowledge.

Saturday, May 4, 2019

Together Rising

In my last post I talked about being thrown a thread to hang on to in the hope that I could improve my situation enough that I want to be alive and not just existing for the sake of existing. One thing that I've done to help me move in that direction is applying for help from an amazing group called Together Rising. This group helps people change lives, and in my not so humble opinion that's just about the most amazing thing you can ever do...but I digress.

One of the things they ask you to do is share information from others who know about your situation. I asked a few friends who are family, and a few of my providers, to write what they knew about me and my situation. Something about the platform wouldn't let me load several of the letters that people wrote, but I want to share them because...because when I'm feeling low and like the world is against me I'm hoping someone will drag my ass back here and show me it's a lie. I am more loved and respected than I ever could have imagined.

Denise and Courtney
Courtney's Letter:
I have known Catherine since 2011. I was in my senior year of college, and she was the receptionist at the chiropractor’s office I went to. In the magical way Catherine seems to do, we became friends. She is a caring person with an ear for listening and a heart for compassion. We bonded over our own different but similar chronic illnesses. After graduation, and my school plans falling through, she offered me a place to live, which required her to move out of the apartment she had been in for years, and into a new one with me. We didn’t live together long, but became wonderful friends. I don’t believe I have encountered anyone else in my life who is as empathetic and compassionate as she is.

Catherine has lived through more abuse, pain, suffering, and heartbreak than any human being should be put through. Most recently, she was in an emotionally abusive relationship, one that cut her off from friends and support systems around the globe. She wanted so badly to help him, love him, to be there for him, and support him. In return, he took his anger out on her and emotionally tortured her. After finally becoming physical in his abuse, she forced him out of her life, and in return he left her with thousands in debt, and more emotional scars on top of the ones she had already been carrying.
This man continued to stalk her and harass her to the point she no longer felt safe and sought an order of protection against him. It was granted, after battles in court, many tears and lots of pain. He still continued to sit outside of her apartment, just out of reach of the order of protection and intimidate her. She decided to move, once again, to a new apartment, hopefully where she would be safe.

Since her move, she has lost her long time service dog Mya, and her service dog in training Kaylee. These dogs allowed her to work long past when her doctors said it was reasonable for her to work. They allowed her to go to the grocery store, to the movies, occasional nights out, but most of all they provided comfort and care for her when her illnesses got the best of her. After the loss of both of her dogs, she is now in even more debt, she is sicker than ever before, and is running out of options.

Catherine has not been cut a break in this world. She has worked hard to pick herself back up again and again and again. After being left with the debt and devastation that man brought to her life, she is stuck paying off the debt on no income, an ever increasing rent and ever lowering food stamps. The system keeps cutting back her benefits, and she has no way to catch up. Catherine deserves a chance, the resources to start again.

As Catherine’s friend, I hope that you can find a way to help her out of this deep, dark place she is in, and to find a way to a better, more comfortable, more enjoyable life. She deserves to have the love and compassion she has given to so many, be returned to her.

April's Letter:
Everyone knows that a receptionist is the first line of action in any business. They must be able to greet people in a friendly manner, answer phones, deal with difficult questions and clients, etc. all while promoting the business and making people want to come back time and again. This is how I first met Catherine, while she was performing receptionist duties at a chiropractor office. She was walking and taking public transportation to get back and forth to work. Catherine was even occasionally volunteering at a local theater company and was having weekly gatherings with friends.

She was doing all these things with Mya, her service dog, quietly walking with her every step of the way, because when I first met Catherine, she had already been dealing with chronic mental and physical illnesses for over a decade. Catherine’s service dogs were able to act as a grounding force when she was facing CPTSD triggers in the thrall of strangers she faced daily getting to work, at work, at the grocery store or other local businesses she had to enter to simply live life.

While most of the time Catherine’s service dogs were silent pillars of strength and comfort, anyone who has ever had an animal in their life also knows that they demand a certain amount of attention and exercise to maintain a good quality of life. The service dogs demanded that even though Catherine was experiencing a fibromyalgia flare that caused her severe pain, that she feed them and take them for walks several times a day at a minimum. They kept her body and mind moving even when her illnesses were fighting against her.

However, as time has gone on, Catherine has gotten older and her body naturally doesn’t recover as quickly from illness or injury. Illness that Catherine literally faces every day and will continue to do so as long as she lives because there is no cure for her Fibromyalgia or CPTSD. Illness that is breaking her mind, body, and spirit-leaving her with fewer good days vs bad days, and lower quality of life. As time has gone on, I have watched Catherine lose several jobs due to debilitating pain from her Fibromyalgia. I have watched her lose relationships, both romantic and platonic due to her illnesses and not being able to actively participate in those relationships, or people in her life feeling overwhelmed or burdened by the realities of Catherine’s mental and physical illnesses. I have watched her lose financial assistance from governmental programs such as those that provide food stamps, housing assistance, and health care.

There have been numerous contributing factors to the increased difficulties in Catherine’s life, however, none have been so great a loss in this battle as the loss of her true constants, her service dogs. In February 2018 I offered what little comfort I could while my friend selflessly had her service dog euthanized do to her own ailing health. While Catherine knew it was the right thing for Mya, it didn’t change the fact that it broke her to lose the one successful aid against the mental and physical illnesses in her life.

Mya’s illness wasn’t acute, so Catherine was able to start preparing for this eventuality by obtaining another dog, Kaylee, the autumn prior. Even though Kaylee was already present in Catherine’s life at the time of Mya’s death, she was still in the process of training Kaylee as a service dog, leaving her effectively alone in the never-ending battle against her illnesses. Despite this fact, she attempted to continue Kaylee’s training and work toward a better future for them both. Kaylee, young, exuberant Siberian Husky that she was, proved not only to be a lot of work, but proved to be an ill-fit for Catherine’s needs when she could not overcome her own prey drive and desires. With a lot of time and training Kaylee’s spirit may have been able to be broken into submission but Catherine could and would not cause another being to suffer their quality of life for her own when she understands how truly important this is in life. Instead she made the difficult decision to rehome Kaylee in September 2018 leaving her truly alone in the face of her Fibromyalgia, CPTSD, and numerous other mental and physical illnesses.

Since then Catherine has been drowning and she is farther away from that seemingly normal receptionist I met 6 years ago than I ever could have imagined. In 6 months without a service dog, terror has driven her to become almost completely homebound. She has no service dog to ground her when she encounters the CPTSD triggers when she has to go out to the store or doctor appointments. Instead, her doctors come to her and she asks friends to pick up her medications and groceries for her, while simultaneously feeling guilty for being a burden. Forget even venturing out for leisure and social engagements. Being homebound has compounded some of her physical illnesses so she has also found herself having to ask for help with simple household chores from cutting up food for dinner to making the bed. Catherine’s needs are greater without a service dog, but I have witnessed her social circle dwindle in this time. Long gone are the days and energy for weekly gatherings with friends. Not only has she become isolated physically, but at times she is also isolated mentally/emotionally. For a time, she was absent even from social media, as the world can be a hurtful place and she, like many, feels helpless and hopeless in the face of negative news, but even more so, when she feels she has great difficulty providing for herself let alone others.

And truthfully, she can’t. Her chronic physical and emotional illnesses mean she can’t work, so as stated previously, she relies on government programs to help provide food, housing, and health care. However, Catherine is getting pummeled by wave after wave as the government decreases its funding to these programs. She can’t help herself, the government is not willing to help, and her small social circle is not in a place to offer great financial assistance either. Her situation is becoming dire, but either blessed or cursed, Catherine has a strong soul, and she is kicking back to the surface one last time.
The last 6 months have proven that a service dog is able to provide Catherine with the continuous, 24- hour support, that her friends, medications, and doctors just aren’t able to provide. Catherine’s quality of life right now is extremely poor, and she will not break through the surface again without another service dog to quietly support her while simultaneously demanding more from her than she can herself.

I would like to make note of the fact that Catherine isn’t asking for simple financial assistance to make all her problems go away. Partly because she’s a realist, and knows her illnesses will never go away, and partly because she has dignity and wants nothing more than to be able to live the most normal life possible for her. She isn’t asking for a pre-trained service dog; she isn’t asking for an obscene amount of money to live off comfortably for the rest of her life. She is instead asking for financial assistance to clear some debt to help spread her minimal funds a little farther to care for herself and a new service dog. She is asking for assistance obtaining a new dog that she can train herself as a service dog. And lastly, and most true to Catherine’s selflessness, a specially designed wheelchair that will allow her to properly exercise a new service dog and provide a good quality of life for said dog. I can only dare hope that the generosity of complete strangers can help with assistance for these things for Catherine, and by doing so, provide her with a renewed hope and fraction of the quality of life she deserves.

Me and Kaylee
Hallie's Letter:
I am a Care Manager with... Up until this past December, I had been Catherine’s Care Manager for about 2 years. At the time I began working with Catherine, she was experiencing a lot of life stressors. She had recently fled an abusive relationship and was in the midst of being stalked by her ex-partner, and was dealing with a mountainous burden of financial debt from this relationship. In addition, Catherine's service dog, Mya, had very recently been diagnosed with cancer.

Despite these obstacles, Catherine was extremely motivated to find a new apartment where she would feel safer and orchestrated the entire move by accessing resources available to her. She attempted to maintain financial stability throughout this process, but this was nearly impossible with the financial assistance provided to her. Because Catherine would need to purchase a new service dog, she would only add to this debt. Catherine looked for part-time, at-home work that could potentially provide her some financial relief. Yet the more she worked, the less assistance she received, and she was back at square one.

Mya's health continued to decline. She had reached the time where she would need to make the painful choice of euthanizing Mya. Catherine kept drudging on the best she could, however, she was continually concerned with the training progress of her new service dog, Kaylee. It became clear that Kaylee's training was not on track with where it needed to be, in order to be of service to Catherine.
Additionally, Catherine had been fostering some kittens for the Society for the Prevention of Cruelty to Animals (SPCA). This was a volunteer position she had held in the past and was happy to be a participant again. Unfortunately, Kaylee broke into the room where the kittens were staying and killed several of them. This was a very traumatic experience for Catherine; she had reached a crossroads with the new service dog. During this time, as her mental & physical health were already deteriorating, Catherine would have to make the decision to surrender Kaylee, who was proving to be more of a burden than a support.

With Kaylee gone, Catherine's health only declined more rapidly; the fight Catherine had once had was fading away. Many of the conversations I had with Catherine towards the end of our work together, centered around how difficult her life had become without a service dog. The safety and support it provided her were immeasurable. Catherine had been knocked down by Kaylee at one point, causing added pain to the symptoms of her fibromyalgia. She then had become fearful of falling again, and without the service dog, began to avoid leaving her apartment.

Catherine continued to work part-time, but this only created more problems with the amount of assistance she was receiving, and she was unable to tackle the insurmountable debt. Her mental health symptoms were exacerbated by the stress of her finances, making it more and more difficult for her to complete activities of daily living. And without her service dog, Catherine didn't have any of the physical or emotional support she had had in the past.

The biggest stressor in Catherine's life in the last few years has been her financial debt. She has done everything in her power to address the debt, but to no avail. Without this debt, Catherine would be able to afford the basic necessities with the assistance provided to her, while working towards saving up for a new service dog. Catherine's quality of life would improve as a result of financial stability.

2012 St Baldrick's Shave
Mina's Letter:
I am Catherine's current Care manager with... I started working with Catherine in October of 2018. At my first meeting with Catherine she told me that she had recently had to rehome Kaylee, the service dog she was training. It was obvious that this was a very difficult and emotional decision, but Catherine had to make it for the good of Kaylee and herself. Catherine made clear that she depended on her service dogs to keep her healthy and independent and requested assistance getting a new service dog. At this point Catherine was still quite mobile, doing her best to stay active, and taking care of herself to the best of her ability. However, it was clear that Catherine's spirit and drive were suffering due to her not having a service dog.

Although Catherine requested my assistance in getting a new service dog, she is the expert and did the bulk of the required research. Catherine knows the difference between training a service dog for yourself and purchasing an already trained dog in terms of cost and outcome, she knows what type of dogs are best, she knows what certifications are required, she knows what housing specifications are required, and so much more.

Looking back on our time together, Catherine has sent me information about a new resource to help obtain a service dog about every other week; she is tireless in her effort to improve her situation. Unfortunately, most of these resources have been dead ends for one reason or another. As time goes on I have seen a very clear decline in Catherine's health. This decline is partially due to not having service dogs because she is unable to fully care for herself without them. However, it is also due to her pushing herself beyond the limit trying to work. Catherine has been trying to work because the financial assistance she receives is not enough for her to survive on, and she is attempting to pay off debt that she was left with after fleeing an abusive relationship and training Kaylee. Catherine's hope of paying off debt by working has not been successful. The more the Catherine works the more her health declines and the less financial assistance she receives, when she works less she is threatened with termination and pushes herself to the point of breaking.

At this point in time, Catherine's health is at an all-time low. Catherine is home bound, she relies on her support network to bring her groceries and her medical providers have to make home-visits. Catherine's mental health has also declined. Catherine struggles with her memory and cognition. On the rare occasions that Catherine does leave her home she uses a wheelchair, has a bag of essentials that she can't leave the house without (medications, water, cell phone, etc.), and always requests that someone be with her.

Catherine and I have had many conversations about how to improve her health and financial situation and it always comes down to a service dog. Having a service dog would help Catherine improve her mobility and health which would allow her to work more and improve her financial situation and general quality of life. But, Catherine will not be able to afford a service dog until some of her debt is alleviated.

Book, the last man standing

With my life being filled with pain all day every day it is often hard for me to remember how blessed I am. My blessings don't make the pain go away, but they help me carry the load. Thank you to everyone who's supported me over the years. I wouldn't have made it this far without you.

Monday, April 29, 2019

Hanging on by a Thread

In my last post I told you all that I've been looking at options to end my life, because honestly, my pain is too much to bear, it's untreatable, and as I get older it will only get worse because of normal aging. Add into that things like the requirements to just maintain my life as it is mean that I can't compromise on things people often have to compromise about in normal healthy relationships, so I'm looking at most likely being single for the rest of whatever life I have left. With all of the people who love me telling me that I could never really have a service dog again because I didn't have the health to take care of them, and my doctor telling me the best I could hope for was things wouldn't get worse (but who are we kidding, life always get worse), things all seemed pretty damned hopeless.

And then I was thrown a thread...

I've often been told that given any excuse to fight I will, and I've always taken that as a criticism. But as it turns out it's really a strength (and if I'm honest more than a little of a burden). When everyone else has given up and gone home I'm still there beating my head against a wall trying to find a way to make the impossible possible. I solve the unsolvable and I can't not do it because something in the way my brain works won't let me put whatever it is down until I have an answer. But sometimes, there is no answer...or I think there's no answer.

And there's where I was about moving forward with my life. If there is no hope, there is no moving forward. Maybe hope is the wrong word. I've heard others call it different things, but at the end of the day it's the desire that keeps us wanting to live and not just exist. I just didn't have it anymore and for someone who will fight tooth and nail with her very last breath that's a very big deal. But without anything to fight for or with, I was fucked to put it politely.

But a friend gave me a gift. She reminded me that the world is bigger and more diverse and complex than any of us of even imagine. That if the option given to me by friends and doctors won't work for me, then I need to make up my own. If I can't think of my own, then ask strangers what they would do.

It takes courage and energy and strength, things I have in very limited supply these days. But there might be a way to get my life moving forward again. It's not pretty and many of the people who have loved me will not appreciate the things I have to do to make it work. But if this is the price for me being able to have the life I've always wanted but never dreamed I could actually have, so be it.

My pain is still unbearable, and there is still no way to treat it let alone make it go away. So at the end of the day maybe nothing will actually change and I'll decide the pain is too much. But before then, I'm going to fight. I'm going to spread my story far and wide and make sure others know there are options even when it seems like there isn't. I'm going to do my best to help anyone and everyone I can. And when I die, I will leave the world just a tiny bit better than I left it.

Sunday, March 24, 2019

What to do, what to do...

I'm trying to do the things my doctor has asked of me, but what he seems to forget is he doesn't have to do them. In fact, he has no idea what my experiences have been like for me because I have worked very hard to over come a life of abuse, rape, and neglect. I've been damned successful too! But now I'm exhausted. I have fought long and hard to have a good life, with a beautiful home, amazing supportive friends, and the safety and happiness I was denied growing up. I've had them all.

...and then life happened.

It wasn't my fault. I didn't do anything wrong. It's just one of the things that happens to people in life. I got into an abusive relationship. It destroyed me. Systematically my ex stole everything I had worked so hard for over the 40 years I've been alive. Once I got away, I was left with nothing and had to start building my life back up all over again. Because life is what it is, no one can do it for me, so I also have to do it alone...again.

And honestly, I just don't want to.

No, it's more than I just don't want to. I'm sick, and there's no way to make me better. Things like the abusive relationship will only make me worse, and because things like that just happen in life, I will keep having horrible things happen that will keep making me more sick. I'm exhausted from being sick and fighting my illnesses just so I can keep getting more sick.

There will never be Healthy for me. The best I can hope for is not worse, and as I said above, that's not going to happen either.

So my doctor wants me to go to trauma counseling, and he wants me to try ECT, and we've been looking into getting me into studies that are using LSD and ketamine to treat PTSD, and my nurse (yes I have a personal nurse I've gotten so sick) wants to try a treatment for myalgic encephalomyelitis that we have no idea if it will work, and I can't afford to replace my service dog, but even if I could I'm being told that I shouldn't get a new one because my health is bad enough that I can't take care of them (the only thing that has been effective at treating any of my illnesses)...

Or I could just give up. I could take the next year to tell the people who have loved and supported me all this time that they mean the world to me. I could get all my affairs in order so my family can't come into my life and make it a mess after I'm not around to protect the people who are my real family. I can enjoy what little my illnesses will let me, and come winter, I'll just take a walk and never come back.

Wouldn't that be better for everyone in the end? No more fight an unwinable war. No more exhaustion. No more fear, anxiety, depression. I could just go to sleep in the snow where it is peaceful and quiet and move on to whatever is next in this Universe.

I don't want to hurt the people I love, but I can't do this anymore. I need a win, and there aren't any left for me here.

Thursday, March 14, 2019

Ignorance is Bliss

I'm smart. Very smart if I'm honest with myself. But what does that even MEAN?!

I can't do calculus in my head. I have no idea when FDR was born even though I grew up in the town where his family summered and my high school was named after the man. My idea of a good read has nothing to do with anyone named Bronte. Electricity terrifies me. Chemistry is a great way for me to blow up a city block if I'm not heavily supervised. Relationships are a mystery I'm perfectly happy to never know the answer to. My cat regularly confuses the hell out of me. MY CAT!

His name is Book and he knows I have no idea what I'm doing.
Can't you just see the judgement?
So what makes me so sure I'm smart? I'm miserable.

I don't just mean depressed (I'm that too), I mean deeply miserable in corners of my soul that most people don't even know exist (lucky them). It's impossible for me to do anything without having a running conversation with myself that sounds something like this...


Inside Me: You know this land was razed destroying the nesting grounds of a very rare migratory bird after it was stolen from the local natives by developers who are on trial for polluting that lake right over there. 


Inside Me: The kids will probably die before they are 40 because we've ruined everything. 

And this is how every moment of every day of my life has been since I was a little kid. The older I get and the more I learn about the world, the more miserable I get. And the worse part is, I CAN'T GO BACK!! I can't unknow the real horrors of this world once I've seen them, so every time I learn a new horrible thing, Inside Me has more information to throw out as a counter to anything good I might happen across in this world which if you know anything, is in fact a shit show.

And what makes me believe my misery is a sign of my intelligence? My sister.

When we were kids, my sister was the smart one. She was the one who picked up everything like it was as natural as breathing, and I was consistently reminded that if I was just more like her, I wouldn't be such a waste of oxygen. But somewhere along the line, my sister made a decision. I doubt she was aware of having made it, but she did. She decided to stop looking at the truth of the world, and to just live in her little corner of it where it could be whatever she pretended it was. Most people do this, so I don't think it's really a bad choice, but her choice made me realize something about myself. I can't lie, even to myself. And that skill is ESSENTIAL to being happy in this world.

My sister is now completely happily living in a world where her daughter won't be living to the ripe old age of 45 only to died from micro-plastic poisoning but instead will have fat happy grandchildren for her to teach this magic of willful ignorance leading to more happily ignorant adults.

I want to live there too.

But you see, if like me you see the truth of the world, you can't pretend that your consumerism doesn't contribute to the state our planet is in because it does. You can't pretend that the mistakes you make purely because you're human don't sometimes have disastrous effects for those around you and that you are in fact responsible for those effects. It is simply impossible to tell yourself that your cat isn't judging you for not knowing what that Mee-oow means after 5 years of hearing it because you really should have been paying closer attention.

This is my genius. I see the world for what it is and my place in it, and how I have effected my little corner of it and it makes me miserable. At least I can say I've known since I was 11 that this was the way the world would end. Tragically and by our own hands.

At least Book and I agree on that

Saturday, March 2, 2019

20 Questions: Part 2

When people talk about the beginning of their #ChronicIllness journey, they often start with when they were diagnosed. I've done that myself, which often leads people to believe that I didn't get sick until I was an adult and able to do something about the pain I was living with. But the truth is, my journey started when I was 2 years old.

You see that was the first time I was #Raped It wasn't the last time, but that moment was when my #CPTSD started. It is also when the ground work was laid for all the other chronic illnesses I have been diagnosed with since.

In that moment I was taught not to cry when I was in pain. I was taught to never talk about my pain to anyone. I was told that no one would believe me even if I did tell them about my pain (many #Spoonies know this experience all too well). But most importantly I was taught that my pain was meaningless. Rather my pain existed purely for the enjoyment of others.

Nothing that has happened in my adult life has changed these lessons for me. I have found that if I cry when I'm in pain I am dismissed as irrational and exaggerating for attention. I have found that my friends and family start avoiding me when I again start talking about the pain that I live with day and night year round without break or improvement for 40 years. I have found that if my doctors can't find "proof" of my pain in their blood tests or images, then my pain isn't real. And since there is no proof of my pain, clearly it is causing no harm to me, and I should just ignore it so I can get on with my life.

So here I am, 40 years into my journey with no energy to keep moving forward and the world telling me I have so much more to live for when they refuse to sit even for a moment with the pain I can never walk away from. Maybe if they knew how little else there is in my life, how long my journey has been so far, how all consuming my pain is, maybe they would have more compassion for my eagerness to see my journey end.