I have somehow and inexplicably been unable to write. I’m usually never been unable to express how I’m feeling and detail the events that have taken place.
However,since the Holidays,and the passing of my birthday, everything has been so cold. Outside. Inside,in my heart,has gone into a place that I dread it traveling to. The world of fear. It paralyzes me. Obviously,I can’t let this happen too often,but when it does,it’s debilitating. The way I’ve been physically feeling has also been a subject I’ve been in denial about.
The routine that I have had with Karen recently is of extreme concern. Her sleep is up to 18-19 hours daily if not at dialysis. When she wakes up,as soon as she sits up,she starts to feel nauseous. She is having increased short term memory problems. She is also having more concerning digestive issues. I’ve had to be even more diligent as far as cleaning her up,and helping her get ready to go to dialysis. Quite simply,I haven’t written because my time is consumed by watching Karen’s health progressively get worse while I feel powerless to make her quality of life better.
I ask you to bear with me while we navigate this new normal. When the year began over 3 weeks ago,I had to embark on more arguments with her insurance company as to why certain benefits have been inexplicably removed from her plan. Mind you,we were promised that while some things were getting reduced,they weren’t in any possible way supposed to be completely taken away.
I have been trying to fight multiple battles on multiple fronts. I’m not winning,but I’m not giving up. I have been through a dark few weeks,and I’m looking for light. I’ll find it one way or another. There are others going through similar scenarios. I hope we can find strength through each other. I’m going to resume writing as much as time will allow. I just wasn’t expecting a drastic reduction in Karen’s already delicate condition. We will talk soon.
Please don’t misconstrue this post as me asking for anything. I’m simply writing about yet another sudden issue that was completely unexpected,and in addition,was something I addressed before the new year with Karen’s Insurance company. I just sometimes don’t understand when people in positions of authority, people who control the very purse strings as to your survival,can tell you a “fact” that you believe as gospel truth,only for that “fact” to suddenly become a falsehood without notice.
I’m sure some of you are enduring what I’m about to speak about at this moment. There were (and as of now, severely limited),programs for Medicare recipients who suffer from chronic diseases that provided a small monthly supplemental benefit that would be issued to a card. This amount could be used for OTC products,and healthy food options.
We were aware that this benefit was going to be reduced as of January 1,due to budget cuts. However,when we checked the website that tells you your available balance on said card,it simply said “Not Available” Naturally,this instilled a state of panic within me. It might not be a lot of money,but every penny of it was essential to my management of Karen’s multiple conditions. Upon calling her care coordinator at the insurance company,he not only had limited access to any information,he confirmed that the program is indeed for people with catastrophic illnesses, of which Karen sadly possesses. He also tried to tell me that the insurance company doesn’t make the decision as to whether Karen can still receive it,but Medicaire itself. This is not what we were told in December when I tried to settle any possible issues that would arise. It is now January 6. Since Friday,I’ve been searching for and hunting down answers. Finally, her care coordinator called this afternoon to say that the government hasn’t gotten around to determining if every single person that were in this program are still eligible to be in the now reduced benefit amount of what’s left of it. So,much like everything else,we have to wait.
The most upsetting aspect of this is that when these things occur,it just seems to chip away at what dignity I fight so hard to retain. Now,like I have in several other situations,I will make my usual calls and we’re emails to politicians who are already too busy to do anything about our issues,or are already “working” on an issue I’ve already had.
Why am I writing this? I keep thinking of the thousands of disabled people who have nobody to advocate for them. I also have witnessed some of those who are alone while we’ve been at numerous doctors offices and hospitals not have the strength mentally or physically to do anything but accept a refusal to something vital and necessary to their well being at face value. That pains me greatly. It pains me for Karen and I,who already feel like burdens to society in general. Sometimes,there’s only so much fight, resolve,and strength to go around. However,I don’t have a choice but to keep manufacturing it no matter how every single day. I just hope that the ones that are alone can have someone fight for them as well. I also pray none of you or your loved ones are experiencing this at the moment.
For example,if you receive Social Security or Social Security Disability,in Karen’s case,she got a $40 increase in her monthly payment. That $40 increase resulted in a $25 monthly reduction of our food stamps. In addition to that, despite having a dual Medicaire and Medicaid plan, every single one of Karen’s medications I must pay a copay for,which we NEVER had to do. The copays on her numerous medications will add up to almost $30.00 a month. This obviously doesn’t just render the “Cost of Living Increase” useless,it actually decreases the amount of income she received prior to the start of this year. How does this compute?? It’s not fair,and I’m not pointing fingers, because I know there are a multitude of reasons why this travesty is occuring.
Anyway,just had to get that out of my system. We will see you Friday for the first OPLIVE of 26!
December 31. It seems like it’s a date that automatically beckons one to look back,reflect on the year. It should also be a time to prepare for a new beginning. I damn sure wouldn’t want to relive the nightmare this year was for us. However,I realize that I have learned many lessons from experiences I’ve had this year that I want to utilize in 2026 and beyond.
I want to take this time to tell those of you that don’t know. The intensity of emotion that I express in words in my writing is exactly the way I speak in real life. I’ve worn my heart on my sleeve since I’ve been old enough to express myself. It’s been both a blessing and a curse to me through the years. However,I will not apologize for it. It’s who I am. I do want to clarify though,that I in no way write the way I do in order for you to pity us,nor am I trying to pull on your heartstrings for donations. I’ve recently realized that some might perceive it that way. I will admit a shortcoming here,one that I’m still working on after 52 years on this planet. I’m a class AAA People pleaser and hurt when I think people are mad at me or don’t like me. This is something that has lived within my heart since childhood,as I had to grow up very young. I don’t know why it’s difficult to realize for me that not everyone will like or accept me,and some people just won’t understand or believe in me. I’ve been working on this my entire life. I’m naturally sensitive,and it’s not an easy thing to admit. When I do find out that someone doesn’t like me, I want to know why. I should just tell myself that’s the person who doesn’t like me’s business,and move on. Sometimes, I get stuck in it. Rest assured,I’m working on it. That’s just the way life is.
I haven’t posted on X through Christmas because we were not in a good space mentally or physically. I’ve only been focused on trying to keep Karen as comfortable as she can be. I’ve also been trying to focus on getting my own health questions answered. They aren’t yet,but they will be soon. Karen’s condition has indeed not improved. I don’t state this for any reason other than that’s the honest truth. Getting to the bottom of her ongoing respiratory issues are the immediate goal.
As far as the apartment..I told you last time,a pivot had to be made from a private,stand alone apartment in a home to a senior housing garden apartment situation. This will provide the peace of mind we desperately need. If Karen has a medical emergency,there will be people in a part of the complex that can assist immediately. It’s also more economically feasible. The rent is actually calculated based on what your income is,not just a fixed monthly rate for all. The minimum rent is $977 a month, which I believe will be where we can fall in at because the minimum yearly income required to live there is $18,000 yearly. With the small Cost of Living Increase this year, Karen’s income will come in just a couple of hundred dollars over that 18K. We will be paying 30 percent of that,taken directly from Karen’s SSD check. The utilities are factored in to a formula that we’ll know more about before we move in. In any case,the caseworker was here a few days ago,and told us to be patient but prepare and everything will be ok,but won’t commit to a date to move. I can’t force this process to move any faster,I wish I could.
In the meantime,when I look back at this year,I immediately think of all of you that made it possible for us to survive this year,with every type of support you could give. You know who you are,and you know we think you’re priceless. We have overwhelming gratitude for you. You deserve to have the best life has to offer you,and we pray that you will get it.
This last part is for anyone who is a caregiver or is a patient of a caregiver,or who is involved in any situation where a loved one or friend is critically sick or disabled. I’ve decided I can try to help others who are in our situation while taking care of Karen and fighting for our independence and quality of life. I have started a YouTube channel called “Caregiving Under Hardship” and if you want to find a place where you’ll find an empathetic ear, check it out. I have plans to make a community where we can all assist one another.
So,now that 2025 is all said and done,Happy New Year to you all. Your friendship and love are cherished and always needed. Thank you to everyone.
……We used to love Christmas. I would always have the tree up the first week of December if not before. I remember from the age of 12, because my Dad would usually be working at sea on the tugboat,I would often put our tree up myself. As soon as I started working for my own money at 13, I would do everything I could to make Christmas as beautiful as it could be for everyone. I loved writing cards, wrapping presents,decorating. My mother and I would always watch Midnight Mass,then A Christmas Carol. There wasn’t anything about Christmas I didn’t love. I do remember from a young age wondering why everyone couldn’t be that happy all year round. In the tumultuous childhood I often had, Christmas was always peaceful for the most part.
Karen and I started our own little traditions after we were married. Her and I shared the same spirit and heart. She helped me realize more what it’s supposed to be all about. Especially when Karen became disabled,and we couldn’t afford presents,we had our house,our cats,each other. It was never about material things. We made the best of it. Due to the fact that our family members mostly were deceased,and as every year passed by,we lost virtually all of them,there was a heaviness the holiday season that weighed upon us.
Last year at this time,we genuinely thought we were only going to have to spend a little more time in this hotel. Every single agency that we could go to for help we availed ourselves of. We never realized just how difficult our situation would be for the powers that be to solve. Once Karen began dialysis,the entire year of 2025 began a series of operations, consultations, applications,waiting lists, promises made to us that weren’t kept. Unfortunately,as every month passed by,the routine of keeping Karen alive and in the fight to reach a point where she either would get on the transplant list or the hope that her condition would stabilize had become more difficult. It has become more difficult. When people you entrust to help you tell you to constantly be patient,that you matter,and your situation is important to them break their promises,what else can one do to get them to act?
The truth is,YOU, our OPLive Family,morally, spiritually,and physically kept us alive. While we are and always will be eternally grateful, I know it not only humiliated me asking for support, it embarrassed me and depressed me and I never intended for fundraisers to go on forever. I had thought (wrongly) that everything we were promised was going to come to fruition. Even if it did,I always knew we’d be “in need” until we were completely settled and my plans for our self sufficiency could begin. I also wanted the original fundraiser to be spread beyond the OPL Family. Unfortunately, because it didn’t spread beyond the group, it became too much to keep asking the same group of people to help. We never wanted that. EVER.
So here’s where we’re at. Due to the pivot we have to make to a more supportive housing environment,our caseworker overwhelmed by the amount of clients she has,and now a mixup in the application causing us to be denied for the place where it’d be best for Karen,we’re stuck here at least until January 1. I am waiting to see if I will need a biopsy on the lymph nodes in my stomach. Karen is waiting for the results of the MRI on her lungs,which are causing her health to worsen overall. We are silently in pain,and I didn’t even want to write this. I don’t know what’s going to happen from one day to the next. I’m scared,but I have to keep fighting. I can’t give up, although I’m falling apart. What I’m saying is we’ve never felt so lost as we do right now. We are having difficulty surviving every month,as much as I do everything I can to make what little we make stretch.
I’m asking you friends,for this week only, if you can assist us with a few dollars to survive through the holidays. We don’t need much,but we are at a point where any amount can help. I had hoped this year to be able to give you all Christmas presents,but sadly,that didn’t happen. However,when you wake up Christmas morning,and every morning,even if you don’t know it,our hearts have and always will be grateful for you. I cannot wait for the day when I can tell you all that we’re finally on to the next step. I just want Karen to have peace of mind for the next week and a half. If there’s anything at all you can do,even if you want it paid back,
CASHAPP $BFN73
PAYPAL BN11473@GMAIL.COM or Brian Nearey
VENMO KAREN-NEAREY-1 (to the picture of Scootie,there are 2)
Or DM me on X for more info
Thank you all,OPL FAMILY
Rejection letter from Senior housing because caseworker (below) was supposed to submit it for us but never has time
Hello, everyone. I haven’t written in awhile,and that’s not something I like to say or admit. Writing,even if only for myself to read,helps me to “stay in the moment”,organize my thoughts,and close the chapters in my mind that are still open,which for me is to help avoid staying stuck in past bad events or problems that have yet to be solved.
It’s not easy to publicly hash out each and every detail of our lives. As open as I like to be,I fear what people will think of me,I fear judgment,I fear rejection. Those are toxic emotions that have lived within my soul since childhood. It stems from having to be an adult at a very early age. Once again,that era will be written about in the book that I vow to complete one day. As always,the focus of these writings will always be about Karen,how unique and special she is,and how I’m giving my all to keep her as happy and healthy as possible while life threatening disease wreaks havoc on her body,day in and day out.
I can’t believe how much time has gone by since this entire saga began. My mind wanders to 2017,right before I had to stop working to care for Karen full time. Our beautiful and beloved dog, Chocolate Lab Princess Mocha Isabella was still with us. She was the sweetest,most loving dog. I’ll never ever forget this one particular day. At the time,we didn’t have a storm door at our front entrance. I always had to be careful when UPS came,or someone knocked, because when I’d open the door, Scootie, middle aged and curious back then,would sometimes try and sneak out of the house!! The few times it happened he never went far,but he made it difficult for me to grab him when he’d run under one of the shrubs either in front of our house or on the side.
Anyway,one cold evening,I had to go out to the car to get something. I thought Scootie was in the bedroom with Karen. I was opening the door slowly when I see that chonk of grey and white tuxedo slither right past my leg like a snake,darting out onto the front lawn and right under Karen’s rhododendron bushes. Now,at that point in time people told me “Oh, Chocolate Labs are stupid compared to Black and yellow Labs” I was always insulted by this, because Mocha was a very smart, intuitive dog. Not knowing exactly where Scootie was,I grabbed Mocha’s leash,and I look right into her eyes and I say “Mochie,we have to find your brother, ok?” Without as much as a prompt,she dragged me outside and went right to the thickest part of the rhodie bushes,and pulled me all the way through EXACTLY to where Scootie was laying!He gave her a look like “I’ll get you back for this later” and his hide and seek game was over,Thank God. I’ll never forget how relieved I was that Scootie was safe,and I’ll never forget how proud I was of my baby girl for finding him immediately. I told her what a good girl she was,and gave her a big busy bone for her to chew on when we got back in. She always knew when Karen wasn’t feeling well. She’d go to the couch where Karen was resting and put her head right next to her face and gave her nose nuzzles to try and make Karen feel better. When Karen would pick me up from work at midnight,they had a routine. At 11:30 PM, Karen would say to her,”You wanna go get Daddy?” She would get so excited and twirl in circles. Karen would put her in the back of our minivan and when they got to the station,I would always come outside and Karen would open the door and Mocha would come running right to me,jumping and happy and woofing. She was the best dog. She was the first loss of many we would suffer starting in 2018,and continuing on and on to this day.
My daily focus is always centered on caring for Karen’s daily needs. However,like I keep being reminded by many of you everyday, I have to care for myself too. On Christmas Eve last year,I had a cat scan from my neck to my abdomen. This was because my lymphocytes in my yearly bloodwork were abnormally high for three straight years. My blood was checked for leukemia,which was ruled out.I was sent for the scan to check for lymphoma. The scan discovered several things. I had a hernia, degenerative disc disease,and several lymph nodes in my stomach that were swollen but not big enough to biopsy,but said to possibly be reactive (cancerous). I was told to repeat the test in 90 days. That would’ve been March,9 months ago. Karen was in the middle of all of the Fistula surgeries and dialysis. Then she developed the stone in her bladder,the infections. I kept pushing it to the back of my mind. I didn’t want to know. I dreaded turning 52 last January because my Mother died at 52 in 1997,and I cared for everyday for 3 years and watched her slowly perish. It was unbearable to think that I might have to endure the same thing. I needed to keep Karen’s health first. I don’t regret that,even though I know I should’ve made some attempt to repeat the test. Finally,today I went. It took so much soul searching to do this. So I get there. I fill out the paperwork. After 30 minutes, I’m still not called in. I ask the receptionist what was going on. She called downstairs,and she asks “Are you ready for your 1115 yet?” I hear the tech yell “NO” loudly through the phone,followed by indecipherable yelling. After the call ended,the receptionist tells me “I’m so sorry,Brian,the patient before you was halfway through his test and THE MACHINE BROKE..She’s going to try and reboot it but I don’t think it’s going to work,come back Monday at 1245” I had to laugh. Only me. It’s just the exact type of thing that has plagued every aspect of our journey to have a somewhat stable life. So,Monday it shall be.
I started noticing about a few months ago,as some of you know,that Karen had times where she could only walk a few steps without becoming extremely winded,forcing her to sit in her walker and deep breathe for a couple of minutes until she could proceed. Unfortunately,as much as Karen kept trying to tell me “I’m ok,I’m ok” ,I knew better. As days passed,then weeks,this phenomenon became a daily occurrence. Even in the hotel room,just going to use the bathroom. The pulmonologist can’t make a definitive call until she has an MRI of the groundglass opacities that are part of her Interstitial lung disease. That will happen this week. Reality tells me that being that oxygen only temporarily relieves this symptom, that it’s not going to be something that can be treated to a cure. Most likely the symptoms will only be able to be lessened. If this is indeed true,Karen will most likely not be a candidate for any transplant. This isn’t me giving up hope, because I’ll keep fighting for her everyday until I’m told by any possible hospital that could possibly save her that it’s impossible. However,watching her endure this heartbreaking and frustrating inability to walk is the reality I have no choice but to face.
As a result of this,and discussions with the medical team,housing caseworker and social workers,our housing destination must pivot from the conventional apartment we picked out and waited so many months for to a senior garden apartment complex in Kingston,NY. This will not be or feel like a hospital or nursing home. It will be a unique environment where there are apartments,but should I need immediate emergency assistance with Karen’s health,there is a building on site with people that can expedite help. As much as I had hoped that we wouldn’t have to depend on such an environment,her symptoms and declining health are demanding that this will be the best place for me to care for Karen and keep her as comfortable as possible without making her feel like she’s in a nursing home. I was so reluctant to write about this. The last few weeks have been some of the most difficult doses of reality I’ve had to swallow and accept. My heart is extremely heavy,and I still have no choice to not show Karen weakness,sadness,and hurt so I can keep her motivated and at peace.
I apologize that this isn’t the most cheerful of posts to read during the Holiday Season. I apologize for that. In the meantime, I am so grateful to you all for your support and encouragement during this entire ordeal. I hope we can all watch OPL this weekend together. This is still a day by day fight for survival. Please feel free to DM me for any more information. That’s about all I can write right now. I’ve stopped to cry over 10 times since I began this. We pray for you all everyday.
Brian
Top page results from my first Cat Scan bottom is the prescription for the follow up I was supposed to have todayWhere We Need To Move Description
CASHAPP $BFN73
PAYPAL bn11473@gmail.com or Brian Nearey
VENMO KAREN-NEAREY-1 (There are 2 the one with the cat is us)
It’s now Tuesday morning,2 days before Thanksgiving. This year,as I’ve stated, Thanksgiving falls on Karen’s Birthday. Karen has been a quiet warrior each and every day that she’s been disabled. She’s also been a quiet,shy,sweet,generous woman who has not had the best luck in this life. She’s sweet, doesn’t have a cross word for anyone,and has never intentionally hurt anyone in her life. She sacrificed for the good of those she loved. In 2013,about 6 months after we were married,she came home from work the night after Thanksgiving and found her Mom’s bedroom door locked. She couldn’t get her to answer the door. She was terrified. She called the police,then me at work. The police busted down the bedroom door,and Karen’s Mom was expired. Karen was beyond devastated. She blamed herself. She took care of her everyday for years,but still felt like she should’ve done more. Nothing could’ve been further from the truth.
She feels like she doesn’t deserve to be made a fuss over. She’s so gentle and warm hearted and kind. She doesn’t want much,has never had that much,but deserves so much more than she has ever gotten. That might include me,too. That’s how helpless I feel sometimes,as much as I give her all my care and attention,I always ask myself “Why can’t I do more to make sure her life is happy and secure?” I’ve been by her side for 8 years,everyday. I did this despite not being able to be paid by the state of NY to care for her. As I’ve stated dozens of times, a social worker at Dutchess County Social Services told me if I wanted to be paid,I should divorce her. I’m sorry,but I wasn’t going to do that for any price.
Before we ever asked the public for help to survive,we survived on everything we worked for years for,until there was nothing left. Now that we’ve had to live in this hotel for over 14 months,yes,we were accepted into a program to live in an apartment 45 minutes away. We still have to pay 30 percent of Karen’s $1,400 Social Security check (our only income) towards that rent. Yes,the move should’ve happened weeks ago. Yes,I’ve pushed everyday to expedite it. I cannot push any harder. I’m doing everything I can.
In the meantime,she’s had 6 operations this year. She’s suffering on dialysis,she’s weak, exhausted,and still doesn’t want to be made a fuss over. Doesn’t feel like she deserves it. I’ve tried to show her,tell her,and treat her like she does deserve. However,this moment right now,even though I suspended official fundraising, I only ask to help me give her a special day on Thursday. We don’t have a way to cook a Thanksgiving dinner,but that doesn’t matter. We only want to be together with the cats,and watch the parade and the dog show and have some food,and I want her to be surprised that people thought of her on her Special Day. We don’t know if she’ll be eligible for the transplant list. Her health is not good.
So please,for these next few days,if you can help at all, please DM me on X or
CASHAPP $BFN73
PAYPAL BN11473@GMAIL.COM or Brian Nearey
VENMO KAREN-NEAREY-1 (to the picture of Scootie)
This post I’m not ashamed of posting. This is not for ME this is for KAREN. She’s been through enough. She deserves some happiness,no matter how temporary. This will only run until Friday. I’ll delete the request for help after the show Friday night. Thank you for understanding my purpose here. I can’t help wanting this for her. Please help me make it come true
Bless You All
Brian
POSTSCRIPT…
Karen slept a lot today. She felt the morose atmosphere of waking up in a hotel for a second consecutive birthday and Thanksgiving. She wasn’t feeling well physically,but emotionally,as much as I tried to lift her spirits,there was a sadness in her eyes that wouldn’t disappear for very long. Yes,she was grateful for everyone’s well wishes and encouragement. That goes without saying. Karen is a person who has been hurt profoundly throughout her life. It took me years for her to even acknowledge that the things that happened to her were not normal,and that she never deserved them. Yes,she gets up everyday,and she is willing to physically fight for her life by going to treatments, surgeries,doctor and hospital visits. However,the wounds she carries emotionally are scars that are deep. These scars aren’t something she wants to burden anyone with. She doesn’t know how to express the pain she feels. Yes,she has a therapist,but she has still not opened up fully to her. It’s a process. She has a built in fear of asking for help. I know how to break through,but I can’t heal all of the toxicity by myself. She has to move at her own speed. It’s so difficult for her to trust anyone for fear of being rejected or dismissed or judged. The thing that makes this so outrageously unfair is she’s so gentle and kind that there is no amount of recompense that would be sufficient to heal her enough to release that deep,intense heartworn pain. I give her all I have within me to help her feel understood and cared for and loved unconditionally. However,I learned over the years that I can’t heal it all,and yes,it’s excruciatingly painful for me to know that. However,as someone who grew up way earlier than he should have had to,I fully understand and empathize with how she feels. I have my own perilous emotions that lie within my soul. Yes, I attempt to live my life with them in a place that I can advance forward without it being a daily hindrance. The truth is some scars don’t heal. Some emotions that are residual negativity from those scars spring up within me at my weakest moments. They cause anxiety,bouts of depression and sadness,self doubt,and damage to my self esteem. I try to recognize when they are affecting me,then use coping mechanisms to emerge from them in a short amount of time. My story is long and complicated and you’ll all hear it someday. I just wanted you all to know that when I do ask for help, my anxiety levels go to extremes. I don’t want to burden anyone,and being that I always worked from age 13 on, it’s terrifying to ask people for money and makes me feel like such a failure at the same time. I’m putting that aside because this is only for Karen. If I can focus on not worrying so much about finances,I’ll have more energy and determination to try and help Karen get to a better plateau in this journey towards a healthier and happier life,if that’s God’s plan. I realize the odds are against us as far as the transplant lists. I don’t care. Whatever time she has left should damn well be the most optimal experience it can be. So yes, that’s why I continue to reluctantly ask for monetary help so I can keep fighting this endless battle. I hope you all understand. We’re both eternally grateful for all of you,and we always will be.
I’ve always wanted to be a broadcaster,since I was a little boy in a household where I had to be an adult at an early age. When things would get crazy in my household,my transistor radio was my best friend. This would be especially true at night. Hearing people’s voices helped me fall asleep. Hearing people talk and not yell calmed me down. I also learned a lot from the people behind those voices. From that point on,realizing what a powerful influence they were on my life,my dream was to become a voice to possibly help anyone feeling the way I did at that time. This video is going to be the first in what I hope will become a safe place for caregivers to find comfort sharing their experiences when they need solace. It’s also another outlet to tell the story of our journey,that evolves and changes, sometimes by the hour.
Still waiting and fighting the powers that be. Karen is finishing dialysis right now and is exhausted,and not feeling well. A week from Today is Thanksgiving. It’s also Karen’s birthday,and I just hope we can even get to that day. Life is a fight for all of us right now. Thanks to you, I never surrender,and never will. We are and will be forever thankful for you,family.
In the meantime,the next steps here are getting Karen’s MRI on her lungs. When I first saw the words “groundglass opacities” in her lung cat scan,to the layperson’s mind,I translated that as “particles” groundglass sounds like tiny bits of glass looking substances no? So I automatically thought that meant it came from the defective CPAP machine Karen had that was part of the Philips Recall a few years ago. The pulmonologist said “That’s indeed possible,but I can’t sign off on that” so because of that we were dropped from the class action suit against the company. Why? After 3 years of non communication by them and unreturned phone calls,when we sent in the pulmonologist’s report,they said “you didn’t demonstrate injury in time” which was outlandish.
The MRI is not for any legal case,but It’s a condition to get Karen on the transplant list. It depends on the severity of her condition whether or not she meets the MEDICAL criteria to be placed on the list. I can’t offer an opinion right now on if I think she’ll pass this test. The way she’s been feeling lately, as strong as I want my faith to be, I might have to say she won’t. There has to be a reason why her pulse ox and Blood pressure drops so profusely after only a few steps. She never smoked any cigarette of ANY kind in her life. I believe it’s just the totality of her other conditions that is weakening her further. As always,if I project and worry (which I do anyway) it’ll take away from my faith. I’ve really had to learn to live day by day. It’s the hardest thing I’ve ever had to do. Growing up as a child who became an early adult,not knowing what was going to happen next created that need to want to know what lies ahead,in an effort to control what is uncontrollable. That’s no way to live. Anxiety itself is no lifestyle to live. I can sometimes feel it eroding my energy level sometimes. I fight it with trying to feel empowered. When I help my wife and she’s happy because of it,that’s empowering. If I can give a friend an ear and offer advice they appreciate,that’s empowering. Knowing that on Friday and Saturday night you’ll all be out there somewhere watching our favorite show with us,that’s empowering. It’s also all the reasons I never will give up.
So,as another weekend approaches,I want you to know once again I’m thankful for all of you,and so is Karen. I hope I can give her the best Thanksgiving and Birthday I possibly can next week. We will celebrate for show purposes this weekend. I just wish Reelz didn’t change the way we engaged with one another. It doesn’t matter,we’ll be there. Please DM me if you want to ask anything or talk. We treasure you guys. Hope you like the video.
As I sit here and watch her sleep,(which is unfortunately becoming the norm) I wonder what is going through her head as we prepare for yet another surgical procedure tomorrow morning. Since September when the bladder stone was removed,this is the third,and second in the past 30 days. 6 operations in 2025. Five of them on this damn fistula. When we were at the last surgery,I asked once again how many people have to go through multiple procedures in order to have a fully functional connection. I was told once again,that it’s not “uncommon”. That tells me absolutely nothing. I was also told that Karen’s overall vascular health plays a factor in the multiple failures she’s endured.
I am utterly amazed at just how gracefully she handles the rigors of dialysis and multiple operations and unclear answers and worries of an unknown future. However,juxtapose that with the utter hopelessness I sometimes see in her face when she’s laying in bed after dialysis,wondering when or if her life will regain any form of normalcy. I don’t force her to express her feelings,all I have to do is look at her and I know that my patience, support,and encouragement,as well as my unconditional love sometimes just can’t be enough to lift her spirits. I absolutely cannot blame her for feeling that way sometimes. She told me the other day “Papa,it’s either these 4 hotel walls or dialysis,it’s driving me crazy” What can I say to that? She’s absolutely right. It’s now been 15 months since we took the last look at our home on the way to the temporary housing lifestyle we never thought we’d still be living in now. I don’t and never will understand why my wife,who worked full time from High School until 2015,32 years,and caring for her Mom with no help,gets told in her most dire time of need and critical illness that not only does she have to wait for a home that she has to partially pay for,but not being in a home precludes her from receiving organs she needs that could potentially save her life.
The powers that be were aware of her situation before we even moved out of our home. Due diligence was done by me every single day,exploring each and every option that is supposed to be available to people like my wife,who never hurt anyone, never committed a crime, always paid her taxes,and never asked for any help from the government until she got too sick to not to ask. Dozens of applications for housing sent in with documentation that had every I dotted and every T crossed,sitting in a pile on a desk until someone decides it’s important enough to be dealt with. In the meantime, a light finally turns on to illuminate what is hopefully a bright future,a chance at a new existence,an opportunity to feel normal again,14 months later. Then the government decides to shut down,delaying not only that progress,but also the very resources we depend on just to stay alive while we fight these battles. Isn’t it enough of a fight to try and mitigate multiple critical and life threatening illnesses? I wonder everyday how many people die because their paperwork was ignored,or had nobody who cared enough to advocate for them in their most dire time of need?
I’m not going to allow my wife to become a statistic. My will to get us to the next level,though weary,shaken,and terrifying,is always alive and well and doing whatever I can to push this process forward,while keeping Karen as healthy and peaceful as she can be. In my private moments,I crumble. I cry. I’m plagued with never ending intense anxiety. Then I move forward. Yes,you’ve all told me I have to care for myself, and I promise you that I’m trying,but my focus is razor sharp and unbreakable. I’ll find time to collapse when we get to the next step. Until then,every minute of each day is consumed with problem solving,expediting appointments,coordinating medications,diets,protocols,and activities of daily living. This is my duty not just as a husband,but as someone whose heart won’t allow him to slack off even for a second. Time is precious,and I can’t afford to waste a second.
So,family,I ask you to pray for us today. I pray that this will be the last time Karen has to be wheeled into an operating room until the possible day she receives the liver and kidney she needs to enjoy the life she deserves more than I do,more than most people do. She’s suffered enough. Knowing that we will be in this damn hotel for a second Thanksgiving (which is also her birthday) is soul crushing. Yes, in my rush to attempt to stand on our own, I halted the fundraiser. For this week, I ask for any assistance that you might be able to give in order to provide fuel to ease the burden I’m feeling pressing on every part of my brain. I apologize profusely for yet another request. I only want Karen to not worry about one aspect of her life,and maybe even possibly enjoy her Birthday, because Lord knows she has more than earned that right. She has paid her fair share of sacrifice and heartache. Something extremely cruel happened yesterday. One of her siblings was in the area for an appointment,and not only did this person (who lives an hour away) not call to ask to see Karen,they called yesterday to tell her they DROVE BY THE HOUSE THAT THEY FORCED HER OUT OF. Not only that,took pictures of what it looks like now and SENT THEM TO HER. Can anyone read a room??? What would make this person think that Karen would want to see the home she lived in for 47 years now,when she misses it so terribly and is at the lowest point of her life???? Thank you all who send encouragement and prayers and well wishes,and for being there. We wouldn’t be here without it. I’ll let you know when Karen is out of surgery. Thank you for reading.
BRIAN
CASHAPP $BFN73
PAYPAL BN11473@GMAIL.COM OR BRIAN NEAREY
VENMO KAREN-NEAREY-1 (Send to the one that has Scootie’s photo)
Tomorrow morning before 11AM, go to YouTube, in the search glass,type “Life Of A Caregiver” I will be uploading a brief video to begin what I need to do,for several reasons.
Karen is having another surgery Wednesday. The last 48 hours have been intensely stressful. I have been battling with medical professionals,social workers, anyone who has influence over our very survival. I hate that they hold our future in our hands. They have made our life virtually impossible.
We are undergoing a temporary setback. Normally,I can push through these troubles. Right now,I’m telling you all that I am very close to being at the end of my rope. I can’t watch my wife waste away in this hotel any longer. I have absolutely no choice but to reach out and ask for your help. Please DM me on X to find out how. This is an extreme crisis point. Thank you.
Karen has another surgery Wednesday. I’m doing everything I possibly can to prepare her and keep her attitude positive. However, due to the delay that caused our food stamps to be late and the Agency that is partially funding our new home being affected by the Shutdown and their backlog, we have exhausted our funds for this month.
Karen’s health is getting worse on a daily basis. Everyday brings a new fear or uncertainty. I’m fighting as hard as I can,but I can only do so much. We’re in a crisis right now. I’m not advertising this post, because I don’t want to ask for help. However,I am with extreme reluctance and fear am asking for some small financial assistance to get us through the coming tumultuous week. If anyone can contribute anything,or loan us anything, please,the stress is overwhelming me. I’m hoping we can break the logjam of red tape and get out of this mess. As hard as I’m trying,I feel Karen is giving up. Please,I’m imploring you. Some of this pressure needs to be alleviated. As always Bless You and Thank you. We are very grateful for you all.
CASHAPP $BFN73
PAYPAL BN11473@GMAIL.COM OR BRIAN NEAREY
VENMO KAREN-NEAREY-1 (send to the one with Scootie’s photo)
Our Fight For Survival 