Nobody is a pain in the ass. I am honestly starting to believe that Nobody doesn’t like me. Nobody offers to take my daughter to school when I’m hurting, lost in my own thoughts, too tired to move… Nobody doesn’t offer to pick her up when I’m in, for once, trying to cook a meal because I have to start soooo early, while I have the energy, the ability, to get one prepared. Nobody doesn’t offer to pick her up when I’m laid up on the couch and exhausted and it hurts to walk and I just don’t have it in me!!
Nobody doesn’t take over when I announce that I’m not adulting today. Nobody doesn’t offer to cook when it’s my turn and I am done and spent and it’s not happening. Though my hubby does. My hubby offers. My hubby gets up at 4am every week day to go to work, coming home around 5:30, tired, exhausted, running on lack of sleep and usually hungry but fatigued from taking over my responsibilities on top of his own. We often eat take out. Poor choice for those who should really eat healthy. But you do what you can.
I was sooooooo proud of my son the other day. I was spent, exhausted, in severe pain, my hips killing me and my legs refusing to carry me without their loud complaints. It was grandma’s turn to cook. We discussed it the day prior, she makes the sausage meal so we use up the peppers before they expire, and then I’ll cook the chicken and dumpling meal after that, so the rest of the veggies get used. We talked about it. We did. 6:20pm, hubby is home but about to be running to the store and nothing is cooking. No sounds from the kitchen, no smells through out the house, unless you want to talk about the dogs, but that’s not what this blog post is about.
I asked if hubby will once again, pick something up while he is at the store. A rotisserie chicken, some bread, ( I will NOT give up my bread), and a salad. I know we had that last week, but hey, it’s something. I asked my son to start the water to boil for the rice that we usually have with it and he did. Hubby called. They’re out of rotisserie chicken…
The tension followed, the evil word, once again being discussed, brought to the forefront, focused on, admitting to our guilt, our in-competencies, just another thing that shouts ‘FAILURE’ to my psyche. Dinner is the evil word in our household as it’s the one thing I simply just cannot keep up with as lassitude drags me down and my legs hurt to stand on, and my arms are fatigued, my brain mush, and dinner just simply does not happen on a happy little schedule, meeting our family’s needs as normal people who live in this world. Who cares about the housework, the disorganized chaos, the dust, the dirt, the clutter… those don’t NEED to be done each day, you don’t NEED it to survive, to live, to adult, to parent, to keep up with, it is just simply not necessary as dinner is.
My son, I’m so proud, his mild autism severely affecting him especially under times of stress, of pressure, of duty. My son simply offered to cook the pepper meal. He offered to take over, to take initiative and simply get it done, providing for the family, all his years of 14, growing up, stepping into his own, even with his depression, his anxiety, and his autism, clutching his soul, tormenting him, controlling him, and keeping him down, he offered to cook.
My mind immediately worries. Will this cause too much stress, will he put too much pressure on himself, melt down, make messes, get frustrated, yell…. He saw my unspoken worry etched on my face and I said no. I’ll do it. I was in the bath, warming my muscles, trying desperately to reduce the pain as my meds were not enough, never enough when I’m in such a state. I threw a towel on, I got out of the tub and simply told my hubby, the phone to my ear, that it will be handled, come home, don’t worry about, it will be done. My son, seeing my determination through the pain simply refused to allow me to do it. He said he’d ask grandma to help him. Me secretly relieved, knowing this would remind her that her task was undone and it was her turn to cook as we’d discussed and planned the day before but she just did not remember the conversation, didn’t ask, didn’t think but she did agree to help him.
My son got overwhelmed. I was just spent, didn’t care, didn’t worry anymore, just crawled into bed, undressed, the water left in the tub, and I just laid there, resting my legs, letting go and putting it out of my mind, spent. My son shewed my mother from the kitchen, her presence so blase faire, causing too much chaos for my son so he pushed her out, prepped the meal, with his friend in tow and started cooking. This, I found out later when I finally emerged from my room to the smells of food simmering in the kitchen wafting to my nose and it smelled good. He told me he burnt the onions. No meltdown, no complaint, just a statement as he carried on and told me how he cooked it, which was different from how I cook it but I let it go, didn’t care, didn’t intervene, just allowed it.
Hubby came home, the table was set, dinner was delivered and announced and everyone joined together at the table to eat but my pain was too much. I crawled to the couch and laid down, starring up at the ceiling and listening to the sounds of my family joined together in the dining room to eat the evil word. I heard my mother call out to me but I was too exhausted to yell back. I simply laid there, silent, lost in thought until the evil word was done and my son started cleaning up, not asked, not expected, just doing and I couldn’t have been more proud of him in that moment.
It is a rule that when someone cooks, the rest clean up. I asked my son to make me a plate but hubby had beat him to it so I asked him to bring it to me and I laid there, plate on my chest and slowly took bites of it and it was delicious. It was fabulous. It was better than my own. Again, I was so proud. Somebody answered that day. Somebody was listening. But Nobody washed the counters, the stove, a task often forgotten after the evil words are cooked, the dishes cleaned, the food put away…. My husband tired after a long day, moments from dropping into bed and starting all over again.
Nobody visits me quite often. My husband tries and does a lot, more than he should, my daughter cleans my own personal bathroom without prompting, my little tornado, her messes left in her wake, she tries. She helps where she can, her little 9 year old mind, my social butterfly, chatting for hours with friends, planning, scheming, playing on her computer, terrified of losing me.
My dog is matted, overgrown fur twisting itself and clumping up, she needs to be shaved. Grooming her is not cheap, she’s over 80 pounds with tons of curly hair leaving little masses of mess throughout her body. She’s difficult to brush. I finally have her set up to shave her body and cool her down and probably make her feel better but it’s weeks away and I don’t want to travel far so we’ll wait. But I finally got scheduled to see a pulmonologist and unfortunately it’s scheduled the same day after my appointment begins so once again, she will have to wait because Nobody has appeared by my side and has not offered to take her for me.
My own failings in asking for help, hold me back. My own failings since being in control through most of my life, handling things, taking initiative and micromanaging everything around me but now taken from me have left me struggling with Nobody, a constant companion reminding me that I am alone, slowing down my life, adding to my lists and leaving me drowning in things unfinished, undone, mocking me, torturing my mind, and making me feel like such a failure with a useless body struggling with my frustrations of wanting to accomplish but left unable, slow, and useless. Nobody doesn’t care. Nobody doesn’t take control or offer to help, take over and manage what needs to be done and maintaining the balance of living. Nobody simply reminds me of my inadequacies, my in-competencies, driving a wedge in my family, creating chaos in my surroundings and highlighting my illnesses with so much left undone.
Nobody is my constant companion, my silent reminders, my aching frustrations as I seek to find Somebody. Somebody costs money. Somebody does not work for free, does not offer to take over or manage my life or selflessly give of themselves to help me navigate this world of invisible illnesses and stay afloat. Somebody must be sought after, paid for, faught for and pursued because nobody is willing to give so freely of themselves.
I have had to fight for my healthcare, my tests, my appointments, for help, answers, understanding but am still left with Nobody, my constant companion, who doesn’t lift a finger without someone to do it for them. For three years I struggled for help with my hip pain, 3 years of suffering with no answers, begging for imaging to find out WHY my hips hurt so bad, my legs refusing to hold me up without pain and fatigue, muscle spasms, twitches, faciculations, vibrations, and oh the pain. The pain can be so excruciating, it feels like my ligaments in my groin are being twisted and ripped apart. The top of my femur bones, aching and bruised inside, hurting to simply brush the exterior of them, the deep ache inside like my bones are rotting away and dying. My tail bone feeling crushed, the pressure, the pain, my iliac wings and sacrum being clutched on both sides and pulled apart taking my muscles and ligaments with them. This is not fibro. This is not ME/CFS. This is something different. This is a new pain, struggling for 3 years before I finally got my doctor to agree to an MRI. Finally, finally! MRI later and it was discovered that I have bilateral labral tears in both hips and subcondral edema in my sacrum and iliac wings.
I thought I finally had the answers to what plagues me. “There’s nothing mechanically wrong with you, push through it….” I was sent to orthopedics. The doctor was sincere. He listened, he understood, he knew about things most civilian doctors don’t. He knew about military exposures and gulf war illness and that some of us didn’t make it out in one piece inside. You can’t see it, the invisible wounds, not of war, but of our service, the overload of vaccinations, the possible secret experiments, the unanswered question of why so many of us suffer alike. The probably cause of my fibro, my ME/CFS, my IC, IBS, migraines, so many issues that slaughtered my body from within, unseen, not understood, and taken for granted, judged, pushed aside and ignored. But in the end, my orthopedic doctor does not work on labral tears. So he sent me to someone else within the office and another wait, another appointment, more frustration.
The new doctor thought I was an anomaly. Severe joint pain not replicated upon exam. I don’t make sense, I don’t follow the typical patterns of disease. Not enough arthritis to be causing the pain, The pain too much to be from the labral tears. Having no idea why my bone marrow is inflamed. Follow up with rheumatology…. See a neurologist…. I’ve been there, don’t that, got the t-shirt, cleared of their typical understanding of disease, I do not fit any of their neatly packaged conditions and they do not think outside the box. A zebra among horses and once again, they have forgotten the zebras among them. I am too ill to have the surgery to repair my labral tears and I react too badly to steroids to take the shots. Back to physical therapy…. but this time knowing, there IS a mechanical issue going on.
I LOVED my physical therapist. She may not have understood ME/CFS but she did not push me, force me into a disproven and harmful path of graded exercise. She simply worked on stretching, slowly working to improve the tightness in my limbs. She discovered my butt muscles were not activating. More questions. She was great. I would have stuck with her if winter didn’t come and take me down, flaring up my body pain and fatigue and leaving me housebound once again beyond that of my normal. After many months but with some minor improvements, too many complications in my life, I put PT on hold.
My mother was hit with divorce papers. Nearly 18 years of loving a man to have him simply push her away, find someone new, and then think he could simply walk without paying for it. My mother has been pampered nearly 18 years. Don’t work, don’t push yourself, be dependent, be the wife who stays home and leans on her man. She didn’t even remember how to fill her tank with gas. She also was hit with vertigo, a fall, a hematoma on her brain, and spinning eyes, dizziness, and a slow recovery. She is better now, but it will come out of nowhere, spinning her world around her and keeping her from certain movements without paying the price. She had taken her social security early, paid the penalty since her husband was going to take care of her, retire in style and she was set for life. $550 measly dollars left for her to live on. She will be fighting for alimony, heavily contested with an attorney that feels as incompetent as my body. So we moved. We moved into a larger and more expensive home to make room for my mother. She wouldn’t have survived it financially on her own. HUD applications closed due to too many applicants and not enough housing. We gave up our forever home, packed up our stuff, drained our savings, and moved. That move felt like it killed me.
Constant cleaning before showings, leaving my home, back and forth, the pressure, the pain, the anxiety. Living on my pain meds to get me through each day, to keep pushing, keep reaching, keep killing my body slowly and painfully, but we did it. I survived. I am paying the price of that move. My ME/CFS flared up, my limbs heavy, my body beaten, a disorganized clutter of things not put away, the list growing, the duties behind and ever filling up the pages of my to do list but my body has quit. Forced rest, reading books to keep me from moving and allow my body to heal as pacing was thrown out the window to accomplish our goals and it has taken it’s toll on me, chewing me up and spitting me out, raw, broken, bruised, and just utterly exhausted, spent, done, waiting to recover enough to even take care of myself and I think I pushed too hard, passed the point of no return, the volume turned up on the pain, the fatigue, the brain fog and now my brain is just as bad as my body, spaced out, confused, overwhelmed and drained from even simple mental exertion where even making simple phone calls are overwhelming to me. I’m ready for a caregiver now. It’s constant. It’s not a roller coaster of good days and bad days, and a little here a little there, it’s a endless ride of NO, can’t do it, can’t function, can’t shower, don’t even take care of myself and I am left with Nobody.
Nobody to pick up the pieces. Nobody to care for ME. Nobody to take the initiative and get things handled and pay back for all the Somebody who so selfless gave of herself without cost, without prompting, but out of love and care and compassion even when my emotions seem cold, my feelings blank, still so freely gave as Somebody but I got Nobody in return.
It is very very very difficult for me to ask for help. Type A, take control, independent, focus driven, micro-manager and do it myself ME. But ME has turned into a severely flared up ME/CFS. I was a somebody but have been reduced to a Nobody and Nobody does not want to help me.
In 2015 I lost my appetite. I started having increased esophageal spasms. I’ve had them before but they were coming on much more frequently and I was beginning to choke on my own saliva. There were times where I felt a lump in my throat, difficulty swallowing and choking on food and medicine. This lump was new. The loss of appetite was new. I was not on any new meds. I did not change my diet. There was nothing different going on to cause this issue. I had an upper GI with a new doctor and she showed me that I had blood in my stomach and a ring in my esophagus, it looked like I had Eosinophilic esophagitis but the biopsy came back without answers. She never told me why I had blood in my stomach, she simply shrugged her shoulders and left me to my own devices. More questions.
The lump feeling came and went and eventually left me and rarely makes it’s appearance now. I still choke on my own phlegm, on liquids, occasionally foods. My appetite took a nose dive in 2018. Food did not interest me. I had to force myself to eat. Forgetting the feeling of hunger as it disappeared on me. I developed stomach pains, some I have experienced for 20 years, simply told it’s gastritis but no drugs have ever touched the pain, relieved the trapped gas that doubles me over and leaves me laid up, the only way to relieve the pain, on my back, my side, and waiting. I would get these pains every month, sometimes weekly, sometimes daily, always coming on after 4:30 in the evening and lasting several hours but this time it was different. I began to awake with the pain. They became so constant as to never leave and I was doubled over for so long so I ordered another scan and went back to my original gastrologist, refusing to see the lady I saw last who left me with unanswered questions.
They ordered a scope and the scope was done. He didn’t see the ring in my esophagus. He didn’t see any blood in my stomach. He did see inflammation. The biopsies did not reveal anything more. He was appalled at my weight loss. I had seen him four months prior at 124 pounds. By that point I had lost over 10 pounds during the preceding year but in that four month period between visits, I lost around 15 more pounds. I was 109 when I went for my upper gi. He was angry. He asked me if Somebody was looking into this and I told him I was left with Nobody. I was given a liquid med to take 4 times a day for a month. So far, it’s helping though I still feel the pain at times.
I had told my primary care doctor that I was losing weight. They assumed it was due to my lack of appetite. I told my primary VA doctor about it as well. She wanted me to try the keto diet. No answers. Nobody reared it’s ugly head once again. Back in July of 2018, on a flight home from visiting my brother, on the plane, I felt a lump in my groin. One of my lymph nodes was swollen and I could see it through my skin. I went to my doctor and showed it to her. She looked at my legs and said it was due to a tiny nick on my leg from shaving. I’ve lived in my body for 40 years. 40 years of knowing every inch, every feeling, every piece of me in a way that Nobody else will understand. This was not due to shaving or a tiny little, nearly healed up, nick on my leg. She told me to let her know if it’s not gone within two weeks. I asked her if I should let her know if it gets bigger or if there are any changes and she said yes.
The following week I told her that I have more glands swelling up. I went to see her. She felt the glands and told me that it was because I’ve lost too much weight…. Nobody showed up once again. The matrix of my mind was colliding together and swirling with anger and frustration but Nobody would listen. I had seen her months before for bruising and bleeding gums. She assumed it was due to a supplement I had been on a month prior. I told her my upper left abdomen had been bothering me off and on for a while and she said if it continued, we’d get some imaging of my spleen. This was in March of 2018. The bruising seems to come and go as does the bleeding gums. More questions.
I saw her in June for a cough that wouldn’t go away. I had had it since getting sick earlier in the year. I was fevered but not sick. I had been fevered almost every visit I had that year. Nobody noticed. I saw her in July for muscle spasms that wouldn’t quit in my left leg at the upper thigh. I was getting fasiculations, twitches all over my back side and left leg and that damn spasm that wouldn’t go away. I had restless body that chewed me up and spit me onto the floor, leaving me reaching for my Xanax, something I HATE taking during the day time. It works great as a muscle relaxer though. Normal muscle relaxers do nothing for me. I was also, still fevered….
She humored me and ordered a bone scan. I wanted to have it done on my whole body and be done with it. I got it just on my hip. A small delayed intense uptake of the radioactive material lit up in my soft tissue on the left side. I know, because he had me wipe the area down multiple times as he was confused as to what it was from. The report stated it was on my right side…. they blamed it on a bladder diverticulm they said was faintly seen on a previous MRI. The incompetency is mind blowing. Off to the urologist to inquire about this diverticulm on my LEFT side and she absolutely refused that I had one. Two scopes prior and she said she would have definitely seen it if it were there. More questions.
A complex cyst in my left ovary showed up on a CT scan of my abdomen when I went to the ER to do frozen stomach muscles. I had no urge to go to the bathroom for a bowel movement in a week and I was concerned. They blamed it on my pain meds and gave me a shot in the stomach. I’ll never do that again. I still have issues going sometimes, different from normal constipation. I do have an enlarged bartholin gland on my right side and I was told it would not interfere with my movements but I’ve had to push it aside at times to go. The right gland never bothered me over these 20 years but as soon as the left one was finally removed once and for all, the right one swelled up. I’m dreading the surgery and have put it off as it’s not infected and the gyn is not concerned about it. He did agree to completely remove the gland when I’m ready. The cyst apparently resolved on its own but I still get pain on my left side. He said he’d do exploratory surgery if needed. At least Somebody showed up. No answers were given as to the spot on my bone scan. Overly….Anxious…Female….
In August I saw her for the swollen glands. At that point I had had them for a week and a half. You know her answer to that one. I was fevered at that time. I saw her in November for my yearly follow up. There is no uploaded record of that. I saw my primary VA doctor in December for my yearly follow up with her and told her about my lymph nodes, my weight loss, my frustrations. Keto diet…
I saw my primary doctor again in January of 2019. I was FED UP. I reminded her of my swollen glands, now on both sides of my groin, behind my neck and intermittently under each arm pit. I reminded her of my weight loss, my chronic cough, my fatigue, a new sleepy fatigue that is not typical for me as my ME/CFS is muscle fatigue, I’m an insomniac type, not a sleeper type. I told her about my stomach becoming full so quickly and bloated so often. I told her I was frustrated and feeling like I’m dying, being ignored, and not being checked out properly. She told me she had followed protocol and did not do anything wrong. She ‘supposed’ she could send me to hematology oncology as the next step in the process. She thought she had ordered a whole body bone scan but I reminded her it was only on my hips. I showed her a newly found lump in my right breast and she found the spot unusual since it was so near the surface. I told her about the insistent itching in my right breast and intermittent itching throughout my body. She ordered an MRI of my breast and a CT scan of my chest due to the cough. There was no uploaded record of that visit. Who knows if I had a fever then. I don’t have a fever now.
MRI came back as normal. No breast lump was seen in my left breast. My prior lump found in 2013 was not mentioned. The new lump was not seen. My husband can see it. It’s still there sitting under my nipple, poking out through my skin. My right breast showed “Stable enhancing focus in the posterior lateral breast consistent with benign proliferative change.” I was told it was normal… Come back in a year. Nobody has showed up, once again.
My CT scan was shocking to me. I was diagnosed with emphysema. They found 4 nodules in my lungs. One just a granduloma but 3 were not. One in my upper right lobe and two in my left lower lobe. I have an appointment with my new pulmonologist on the 26th. First pulmonary testing then the doctor for staging of emphysema and how to proceed in regards to the nodules. I’m assuming there will be follow up scans to see if they grow, the threat of lung cancer hanging over my shoulders. I have to quit smoking. Somebody showed up.
I had quit smoking in 2014. I used vaping as my method of choice and it was the easiest quit I ever did. I was non smoking for a year and a half, perfectly proud of myself and elated that I had finally done it. I had quit!! But then I developed ulcerative colitis and it ruled not only my mornings but my evenings as well. Confined to the small space in my bathroom, constantly running to the toilet, not able to leave the house often and having to know immediately of the bathrooms location at any place I visited. This was before my last ME/CFS flare up. I wonder if this was my trigger. I had been doing fairly well for a while. Fibro reared it’s ugly head in 2013 but that was manageable at the time. My ulcerative colitis was not.
I had been happy, truly happy. My husband retired from the Air Force, we moved to Idaho to raise our kids, I was feeling good for the first time in a long time. I joined a gym! I started preparing to law school, buying books, learning about the LSAT, getting ready to test my fate at hubby’s transferred GI bill. Things were good. I was happy, chasing my kids around the house, playing tag, hide and seek, going out, living life. TRULY LIVING!! Fibro creeped up, I pushed it down, continued to work out, quit smoking, and UC knocked me to my knees. I got back up. I waiting for my morning routine of playing toilet games subsided, usually by 11 am, then off to the gym! Yes, a few times my UC pulled me back to the toilet at the YMCA, but I kept going. I didn’t quit. I WANTED to be in shape, healthy, tightening my muscles before old age tried to take them from me. But I was bleeding. A lot. The blood loss was depleting my potassium and affecting my heart. I developed severe shin splits and could no longer run on the track so I fought back and used the elliptical, easier on my shins and kept pushing. Somebody was on their A-game, refusing to go down without a fight. And I fought. But it won. Dizziness took over and chest pain knocked me down. I gave up the gym… but at that point, I felt it was a temporary reprieve.
I took potassium tablets and built my levels up and my chest pain got better, but my blood loss and toilet visits were taking a toll on me. I had discovered I was allergic to the first round of drugs they give for UC. They are not only in the sulfa family but the anti-inflammatory family as well. The second line were steroids. I already knew that would not end well. The final class of meds were biologics. Chemotherapy type drugs. I have an intense fear of chemo. I am so highly sensitive to medications that I feel deep down they would ravish my body and kill me. I read about the side effects, one being a chance at getting cancer. Four different types of cancer were a possible rare side effect to the drug. Knowing my luck with meds and rare side effects, I felt deep down, that would be me. I entered a study with 23andme for a free DNA test, ancestry report and decided to dig into my family history and look for my biological roots. It was fascinating. I was enthralled with all I learned and it was completely worth it to me. I downloaded my DNA to some health websites and learned all about the complexities of DNA and genetics. I discovered a significantly rare double metabolic mutation on my CYP2C9 which is the pathway that metabolizes blood thinners and anti-inflammatories. Justice, liberation, an answer in all the chaos, finally something to retort when assumed I’m a drug seeker and deny the ability to take anti-inflammatories. I felt vindicated. It also suggested that the medicine they wanted to try me on for ulcerative colitis might very well cause the significant rare side effects I wanted to avoid…
So I researched alternative solutions. Anything that would help put my body in remission and fight against this awful disease that I wouldn’t wish on my worst enemy. Nothing worked. All the different diets, supplements, possible solutions to my problems were a dead end. I discovered that cigarettes might very well be the answer I was seeking. Weirdly, absolutely devastatingly oddly, smoking might put me in remission. Apparently it creates some kind of barrier in the intestines that protects your body from the ulcerations. Success stories were out there. I talked to my gastrologist. He wasn’t happy but admitted he has a few clients that went back to smoking and reached remission. After all that success and elation at quitting and here I was finding a medical reason to go back to it. What a conundrum. One week later, I was in remission. I decided to pass the buck down the road. Never did I realize the road was a short one. And here I sit, writing this, knowing my UC is gone, my colon is cleared and now I have to quit again. And this time without the vaping that made it so easy. The thought of reliving that nightmare of UC hanging over me. Nobody is available to help me with this one. And I don’t blame Nobody. Not for this.
So now I sit worrying about lung cancer, emphysema, and my ulcerative colitis coming back. I have to quit. I don’t have much choice. I don’t know what stage of emphysema I’m in but even if it’s just “a touch of emphysema”, I know that if I don’t quit, it can quickly escalate. My kids need me. I desperately worry that Nobody will show up and be a constant companion to my children if I am taken from them.
I also have the hematology oncology referral to contend with and never in my life have I EVER fought so hard to be seen as I have with this office. New patient visits go through Sandra. Sandra doesn’t want to schedule the appointment. She says I need authorization through my insurance. With much irritation, I told her I was looking at my approved referral and authorization as we spoke. She said these appointments were very expensive. (Insert astonished, are you not listening to me face right here). I TOLD HER WAS APPROVED. She refused to schedule the appointment. She needed more information. Apparently the diagnostic code on my ‘suddenly appearing in her hands’ referral only mentioned weight loss and that was not a reason to be seen. I told her all my symptoms and that it’s the swollen lymph nodes in addition to the weight loss as the reason for the visit. She said the referral needed to be changed. So I called my doctor. New referral was in and approved the very next day. It simply stated LOCALIZED lymphadenopathy. I told her the doctor was wrong, it was generalized after calling and once again failing to be scheduled for an appointment. What the hell is wrong with these people? Seems Nobody showed up to the table or read my record or got it right. She said I needed my records faxed over first. She asked if I had been diagnosed with cancer. I’m speechless. Is that not what I’m trying to be seen for to get ruled out? Is that not THEIR JOB? She asked if my lymph node had been biopsied. She wanted the MRI results faxed from my breast lump. So I waited.
The third phone call and once again Sandra needed more information. I lost my shit. I told her I was tired of this game and to simply schedule the damn appointment. They were already booked out about a week or two. She refused. I asked her to tell me IN SPECIFIC everything she needs from me to be seen. She wanted the last years worth of labs, my first doctors visit with my primary and the last two doctors visit notes minus the very last one which they already had. I told her she would have them and immediately called my doctors office to tell them what to send.
I waited. I gave it the weekend plus three days. I went to my first Palliative Care appointment. They said they’d call the hematologist office to help it along. I called the office on Thursday, sufficient time to get all they needed. She refused to set the appointment. Now she’s saying that there are no images or biopsies of my swollen lymph nodes. (Insert massive angry face here). I unloaded. I unloaded quite a bit. I told her their names are taken, the notes are written and God forbid I have cancer. The pain is killing me in my hips and it is their job to get the imaging to get the biopsies and to rule out whatever the hell is or isn’t going on! Do I have cancer!!!?? I’m sure there was a lot more unwritten but spoken to her in that moment. An hour later I get a call on my phone and it is her. I have an appointment. I now sit and wonder what it was that lit a fire under her and the nurses ass to get me scheduled. The swollen glands didn’t do it. The weight loss didn’t do it. Letting her know that it was over 10% of my body weight lost didn’t do it. The bloated stomach didn’t do it. The fatigue didn’t do it. I’m not sure if I mentioned the fevers. Nobody asked about the night sweats. So what was it? Was it the excruciating hip pain? Or was it simply the threats? The threat that their names are taken down. The threats that they better hope I don’t have cancer while they sit idly by. The unveiled threats of a law suit that Nobody wants to deal with. So did it all come down to money? To tarnishing their name? To the fear of failing a patient who got lost in the shuffle and pushed aside, discarded, ignored, and disregarded from Somebody who threatened to fight back?
I had my first home physical therapy intake today. I told him of my frustrations, my symptoms, all that I am going through and he shook his head and shared his frustrations with the incompetency of some people sometimes. At least I felt understood. I felt heard and validated. I qualify for home therapy. I’m not sure how much it will accomplish with so much I have going on but it’s a start. It’s something.
So I sit wondering where this new road in life will take me, what revelations will be made and wonder why Nobody works so diligently to help me.
My mother-in-law will be moving down next month. She is overwhelmed by all her son is taking on. She won’t leave him to handle it alone. She will be the Somebody that he denies he needs, to help take some of the burden off of his shoulders. I know deep down, she’s not coming for me. She coming for her son. She’s his mother and she’s being a mother, protecting her own and stepping up to the plate to help. Nobody does that for me. Nobody is there in the capacity that I need it, always reminding me that I am alone but for my husband and my kids, reaching out and doing what they can to lessen the burden while dealing with the loss of what was. The loss of their mother to function fully and be there for them in a physical way beyond knowing simply, that I love them.