The Right to be a “Lady” to which I identify

We’ve come a long way in women’s rights. I’m not a feminist but do agree we should be treated equally as far as being a human being is concerned. We’re still way behind in how we’re treated in the medical community and often fighting to be heard and taken seriously. This is still a huge deficit that needs fixing. So now that we’re making some progress, I was essentially told in a Facebook group that tagging ladies to a post is offensive. Wait what?

I know we have a lot of issues in our world with discrimination and acceptance. We have all kinds of groups standing up and demanding equal respect. I’m all for respect of persons. But what I don’t understand and I don’t think is right, is to tell a lady that she can’t make a post looking for the experiences of other ladies. This might be offensive to those who are transgender or other forms of genders that are carving outa  place in this world.

I’ll admit, I’m extremely confused on all the new labels being put out there but how in the world is calling yourself a lady and asking for the opinions of other ladies, offensive? Why should I have to change my wording to satisfy a group different from my own? I’d never ask another what their gender is to begin with nor would I bash another for adding their own experience to a post. So why should I have to change who I am to satisfy those who seek to be accepted? Wouldn’t that be discriminatory towards me or others like me? I just don’t understand how that makes sense. If you consider yourself a lady, then by all means, share your experience, I certainly won’t be calling you out and asking about your lady bits or lack there of.

I just see so many double standards playing out in our world today. I identify as a lady. I have lady bits. It’s who I am and how I feel. So why would that be offensive? If you are a trans person and changing your gender to be a lady, how is this excluding you? If your changing your gender to be a man, again, how would me identifying as a lady be offensive? If you don’t identify with either one, again, how is me, identifying as a lady be exclusionary to you when we all have our own niches to fit into.

There’s enough hate in our world without adding more hate to it. I understand that trans feel excluded. They feel misunderstood and are fighting for their own rights. I’m not going to debate my viewpoint on that as it’s my own view that I have a right to and your business is not my business. But how would forcing me to change my own understanding of myself and choosing different words for my own identity to make another feel better, be ok, or right? If trans are calling out others for ‘forcing’ them into an identity, then isn’t it the same to force others to identify differently for the sake of making another feel better about themselves? It’s truly confusing and frustrating.

I know I’m not alone in feeling the way I do. I’m not making judgements on another person’s identity. Please don’t judge me for sticking with the identity that feels right to me.  I’m happy to be a lady and happy to continue to fight to be heard as a lady and taken seriously as a lady in the world in which we navigate. You do you. Just let me do me.

Not the life I expected..

It hit me today that my life, the future I envisioned for myself, is not my reality nor will it ever be. My dreams to be a silly old lady one day making my grand-kids uncomfortable, dancing around with blue hair silly clothes, well…I probably will never live long enough to even see my grand-kids. I’m not even sure I’ll live long enough to watch my own children reach adulthood.  That thought is devastating to me. This is certainly not the life I expected.

I never expected to be ill. I never expected to be slowly ravished by this disease till there’s nothing left of me to give.

Emulating Lil Yachty My son’s passion in Jewels

Out of the blue one day, my son became obsessed with jewelry. Shiny sparkly jewelry. He was a huge fan of Bhad Bhabie and was geeked to see a concert coming nearby with Lil Yachty. Two birds with one stone. He was so pumped up and we even purchased his friend a ticket to go with him as that would have been his friends first concert. Imagine his disappointment when the show got cancelled and his hopes dashed. He held it in, but I could tell he was struggling.

Just the other day he made me sit and watch Lil Yachty go over his jewelry collection. His eyes, alight with glee, as he bugged out over the ‘beautiful’ pieces (beauty truly is in the eye of the beholder) and especially pumped over his Bort Simpson piece, the gang piece and the watches. He’s been slowly building his own collection but due to cost (poor us, lol), he has to settle for less real stones and damn, even those are wallet breaking. Seriously?  But this is his passion (besides animals) and I could truly see him selling jewelry one day or making them as he can tell you all kinds of the terms that is like speaking Greek to me.

Why he chose rappers as his inspiration and idols is beyond me (no offense to the awesome rappers out there, I just prefer a little more Jesus). Though he has a recent interest in Billie Eilish and is totally geeked about her but her concert ticket prices are through the roof! Both of my kids like her.  I feel for my kid, growing up in a world that is confusing to him, difficult to navigate and with a lot of limitations that make me question life sometimes. He seems to be developing my same health issues which I’m still trying to sort and life can be so damn cruel sometimes. Why do kids have to suffer? When God said he would never give more than one can bear, I question if I’m truly one of his. I must have failed Him and deep down I know I did because my plate is so full and overflowing with frustration and adversity, I’m struggling to hold on myself.

I live with multiple health issues and have been disabled for so long now. My time not being able to be used to help my kids navigate this world. Especially for my son who needs it most, suffering his own issues and feeling outcasted and alone. He has no real direction, motivation, or things to fill his time, nothing to look forward to or goals to work towards and I see this knowing it can cause more harm that good and yet I’m stuck like a log watching from a distance with little to offer and watching our world sink. A house note bigger than we should have in order to provide for family who needed a home, we give to much and receive so little.  It’s just in our own nature to help others even when struggling ourselves.

I wish I could find that special person to help my son. To give him inspiration, motivation, something to look forward to and a goal to achieve worth staying around for. Honestly, I wish it were Jesus. I wish I had raised my kid in the church; even though I’m a bible believer, church is a bit more difficult for me as I’m not a hypocrite and try to live my life not as a judge and executioner but as a guiding light that apparently fizzled out along with my health.  I wish I was rich and could take my son to meet his peeps he watches from afar, with glee in his eyes, and a smile on his face. I wish I could flood his box with the jewels he so desires. I know they won’t fill the void within but I also know it would give him a boost, some confidence, some happiness that is so few and far between in his young almost 15 years.

I’m his lifeline. I know this. I know that he trust me more than anyone in this world and he lives for me. His constant daily struggle of pain, restlessness, and deficits that he’s all too aware of and allows to bring him down.  I feel my own candle going out and know he might not make it without me in his world. I just pray if they find cancer, it’s treatable and I can live long enough with enough relief from the pain to get back  on my feet and truly help my son make it to adulthood.  I pray they can find whatever other condition that holds me down and maybe some miracle a treatment that can give me a bit of my own life back and my sons as well. I hate to see my kids suffer. I’m fortunate my daughter is doing well and pray she is never touched by what ails us. I pray for a solution for our family, for hope, for happiness. The boat is in a rocky sea with violent waves throwing us to and fro, lost and helpless trying desperately to drain the water threatening to sink us. I pray for a miracle. I pray Jesus gives my son a glimpse into him like he did me as a child. I pray for healing for us all.

My son wanted to be a rapper. He wanted to succeed. But right now, he’s staring down a dark hole without the light to lead him out of it. I pray for that light.

Bone/Marrow Inflammation: Anyone else?

I developed hip pain over 4 years ago. I was sent to physical therapy. Having ME/CFS, that makes any physical therapy pretty tough as this condition causes PEM with any activity.  Trying to explain to medical about ME/CFS was tough. Most PT’s have never heard about it. I was also told to “push through the pain, there’s nothing mechanically wrong with me.” How did he know? I’ve had no MRI done to show that fact. Why does insurance send people to PT without a FULL picture. Xrays don’t show a lot. This can absolutely cause further damage if there really is an issue going on. Does insurance really want to pay for that to avoid the cost of further testing? By the way, my insurance would have approved it, my doctor simply did not want to request it due to OTHER’S insurance typically not approving it. I told her mine would but it didn’t matter.  So failed PT and done. It just made me worse.

It took 3 years for doctors to really listen to me after multiple visits and many complaints. Essentially I flat out demanded it. I got my MRI. I had asked so many doctors to please give me an MRI and they all refused. My primary civilian doctor, my VA doctor, the specialists, all of them said no and to do physical therapy but yet, they couldn’t tell me why my bones hurt. Why it was so bad. Why it felt like my muscles were wanting to rip away from my bones, the pain was so intense.  Xrays were normal. 3 years!! MRI showed bilateral labral tears in both hips with bone marrow inflammation in my pelvic bones. Guess it wasn’t in my head, now was it? My orthopedic doctor did not want to do the surgery for my labral tears. He felt that there was too much going on and that it isn’t the cause of the severe pains. He also thought I was a bizarre case. He brought in their in house physical therapist and another doctor to evaluate, but that just resulted in feeling like a lab rat and no further direction or instructions on what to do besides….more pt.

I did like my new physical therapist. She was great. She listened about my ME/CFS and didn’t push beyond what I could handle. We tried a few things that flared me up so she’d back down. She discovered my butt muscles weren’t activating. My left was much worse than the right. A muscle near my knee was acting the same way. I stuck with it for months but then winter came and winter kills me. I hibernate under blankets and hardly move. My body pain is severe so I don’t like to leave my house. I stopped attending PT.

Eventually I went to palliate care. They organized home physical therapy for me which was awesome. It made my life so much easier. My therapists were also great but after months, I made 0 progression. They said insurance won’t pay anymore until we find out what’s causing the issue. But no one is helping me determine that. So home PT was cancelled.

One year later with progressing pain and they repeated the MRI to find that the inflammation progressed. They also noticed it was in my femur neck bilaterally, previously missed on the first MRI. And it’s worse! Also bilateral joint effusions and paralabral cyst in left hip. The radiologist had no clue what it is. He said possible ‘odd pattern of a stress reaction’. I asked my primary if it could be cancer. She had the radiologist look again and they said NO. She ASSURED me it could not possibly be cancer. Could it be a fracture that is hairline? They said NO. Then what it is??!!

My ortho doc refused to see me for it. He only deals with labral tears. Ok, now what? Primary told me to ‘rest my legs’ since standing and walking make it worse. i’m already in a wheelchair for any distance and can’t stand long. So I rested for months. I was in a pretty severe flare up due to moving and the cold temperatures.  I had a nearly 2 week reprieve of some of the hip pain, though my leg pains never quit, but once I started pushing myself to walk more, the pain came back in full force. Since it’s hot outside, I’ve been going to the water park, scooter in tow, and sitting on a tube while moving my legs as much as possible to build back some strength. I noticed there is NO atrophy in my legs. In fact, they are pretty muscular for being on rest. I do seem to have atrophy in my butt muscles though. Not one doctor has evaluated me from head to toe in regards to any atrophy. Not one.

So no one is treating me for bone inflammation. No one is telling me WHY my bones are inflamed and progressing. No one is helping me so Dr. Google it is. And yet doctors get angry when we use the internet to search our symptoms. Maybe if they did their jobs we wouldn’t have to. I don’t have benign transient bone marrow inflammation as that resolves within a year. I’ve had this for 4 years with progression. Could it be leukemia? It runs in my family. My cousin battled it as a kid. My uncle died a few years ago and my brother is battling it now. But no, I was told my blood work was normal and it would show something in my blood. What about my swollen glands in my groin, leg, and neck? They did a CT scan and it did show small reactive nodes but apparently they’re not swollen enough to be concerning. I was also told they only look swollen due to my weight loss…. Umm, I went to the doctors about my swollen glands BEFORE the weight loss. I also noticed I had a fever on the majority of my doctor visits during 2018. No mention of this.

I was told my bone density scan was normal by my primary but my VA doc told me it was low normal in that area. I asked my VA doctor what to do and that no one is working with me in regards to this and she didn’t know!! Heck, when I told her about my weight loss and was worried, she told me to try the Keto diet…. 😑 I’ve dropped over 10% of my body weight and am underweight and I should diet?? That makes sense.

So weight loss (over 10%), swollen glands, lack of appetite, bloating, gas, abdominal pains, lower back pain, intermittent pain in my pancreas area,  severe sleepy fatigue that is new and different from my ME/CFS and fibro fatigue. Fevers more often than my ME/CFS fevers.  Sudden bouts of nausea that come in episodes. (those have actually gotten better, still get them but not as severe). Bladder pain and burning, yes I have IC but I feel tubes inside me that feel inflamed. It’s hard to explain but they are on the left and right side. It seems worse at night but I feel it intermittently and it’s painful. I thought them either my bladder tubes that lead to the kidney or my Fallopian tubes.

My urologist was ADAMANT that it’s NOT my bladder.  Prior bone scan, which was normal (I’ve read there can be false positives) showed a bright white focus in my lower left abdomen. They had no idea what it was. They decided on a possible diverticulm in my bladder based on prior MRI that appeared to possibly show that. (never mentioned in my report). They call it ‘practicing’ for a reason. Again, my urologist swore there was NO diverticulum. Once I told her about the bladder tube or Fallopian tube pain, she immediately ordered me to see GYN and someone different this time, so I did.

By the way, the CT scan to look at my lymph nodes showed a few scattered lung nodules. One was concerning. So now I have a follow up in September to see if they’ve grown. I also have very minor emphysema.  Emphysema at 40 is not very common. I’ve read it more typical in those with EDS. Still waiting on genetic testing for that. I’ve also had my breast looked at as I found a lump. I was told it’s my implants. MRI of my breast showed “stable enhancing focus in the posterior lateral breast consistent with benign
proliferative change” in my opposite breast.  Report mentioned repeat testing in one year. I was told my breast MRI was normal. Ok, with all my symptoms, I’m downright paranoid. What does an enhancing focus mean?!!  That’s normal??

My crazy is coming out. My fears and anxiety are on overdrive. Bone inflammation, lung nodules, enhancing focus in breasts… and now my recent news from my new Gyn.

I went to see my new gyn as my urologist requested. I told him about my issues, that I’m severely estrogen dominant with almost no progesterone and very little testosterone. Apparently, estrogen dominance can cause female cancers. He examined me. He asked if I knew about my uterine prolapse (grade 1). Umm, no. No one mentioned this to me. He asked if I was told about my thickened uterus. Ummm, no. No one mentioned this to me. He asked if I knew about the water fluid and once again, no. I’ve had recent ovarian cysts on my left ovary. I asked the prior Gyn oncologist about cancer since I had the weight loss and swollen glands. After all, he is an oncologist. He assured me it’s just a cysts. We watched it and repeat ultrasound showed it disappeared after a few months. It’s possible I had another shortly after that burst. I had gone to the ER for severe hip pain, pain radiating down my legs, lower left abdominal pain and pressure in my abdomen with lower back pain. He simply xrayed my hips, yelled at me for taking advantage of the system and sent me on my way. Woke up with blood in my pants the next morning.

I’ve had changes to my period, some spotting between as well. My ovulation pains have increased in intensity over the last couple years, something I mentioned to my prior two gyn docs and they shrugged their shoulders. I also have worsening cramps and I won’t go into details about the other issues that have changed. I’m thankful to have a new gyn who actually listened to me. Who actually noticed the issues down below. He didn’t bother to take a sample. He went straight to schedule me for surgery. I’m now waiting on that and waiting to know if this could be the cancer I’ve been searching for. I feel like it’s there somewhere. I feel like I’m dying and yet no one has been listening. Hopefully, for once, it’s all in my head. When you look at the whole picture, it does sound like cancer. I’m not crazy for thinking that. But what of my bone inflammation? Could this be linked? Could it have started there and moved elsewhere? I never have presented like a typical patient. I’ve pointed this out to doctors many times. I have oddities that defy normal medical science. I’m a zebra. I’m different.

Anyone else suffer with bone or bone marrow inflammation?

The medical system is often a joke to me. It needs an overhaul. Both in how doctors/nurses treat patients with their consumed bias due to those with drug addictions and mental health issues that they automatically assume we’re all faking and must be drug seeking or just a mental health case. Umm, even drug addicts get sick and need care as do those with mental health issues. Not everything is in their heads. And bias. They should have had classes on this as they’ve learned, “first do no harm…” which somehow got lost in translation and as we are all humans, they’ve allowed their biases to creep in and taint them. Now with us who are zebras, we’re often mistreated as those above. There is not enough training other than to assume we’re all horses which puts us all at a disadvantage when we really are…Zebras.

I should know about the gyn issues this month.  I should know about my lung nodules later this year. I still sit wondering about my bone and marrow inflammation, dealing with bone pain and muscle pain, ligament pain. No one is addressing that. Back to Dr. Google..

Anyone else have this experience? Any thoughts?

Genetic testing! Zebra results soon

Well, I’m finally getting tested for ehlers-danlos! Excited to know if that’s the cause of my Zebra self. My genetic counselor is also running another type of panel on me. He said my symptoms remind him of….Dystonia.  F*ck. (scuse my language). I had run into that word before and felt it was reminiscent but wasn’t fully on board due to the literature not quite matching up with my symptoms. So I joined a Facebook group for patient experiences and sure as shit, it fits. My son is also showing those same signs. (disgruntled angry mom about this).

Those crazy vibrations? Well, it seems common in this group. My muscles are also pretty tight for being on bed rest most of the day. I should have atrophy, I don’t. Guess those vibrations are keeping my muscles from completely relaxing so I’m exercising without intent, so it seems. I’m really nervous about this one as reading about it sucks. I don’t think there is any family history of this. It also might not show in my genes so if it doesn’t, off to a movement disorder specialist to get checked out. Knowing that my son is exhibiting the same signs, I feel strongly, it’s in my genes.

I got my periodic paralysis panel back and they found a VUS. Variant of Unknown significance. Typically they don’t allow free family testing for a VUS but they are studying this condition and since the frequency was non-existent, they are testing my family. My genetic counselor said the lower the frequency, the higher the odds for a pathogenic mutation. Makes sense.

So maybe soon, I’ll have answers as to why my body has fallen apart and why I am not so normal. Maybe the physical aspect of the military along with the exposures caused it to express? I never had signs of anything during my childhood. Then maybe the constant physical therapy kept triggering it? I guess that part doesn’t make sense as obviously it was triggered to cause physical therapy. Still learning. Still wanting to know WHY I was so healthy before I joined the military and yet so ill upon leaving it. Why!? No one else in my family seems to suffer like I do. They’re all healthy in my direct family line. Vaccine reactions to the onslaught of toxic goo given to me all at once? My body doesn’t process things normally. Anthrax vaccine? Some mystery experiment done on me?

I have so many medical conditions it makes my head spin. It’s also extremely embarrassing to list them all.  ME/CFS, Fibro, Migraines, tension headaches, IC, UC, IBS, POTS, autonomic issues, mild emphysema, possible HKPP (I’m almost certain I have this), and others…

The wait sucks. I’m waiting. Will update…. soon(?).

The feeling of dying..

I’ve been dying for about a year now, at least I’ve felt it since then. I have a lot of health issues and developed an odd vibratory sensation back in 2015. At it’s strongest, it can be felt by others on my legs. I feel it everywhere though, lightly in my upper body but it’s like I’m hooked up to an electrical current and all my muscle cells are dancing. It was interesting at first, then a bit annoying, now it’s an awful feeling that not one doctor has been able to explain. It may be dystonia. I’m still waiting on genetic testing..

On a flight home from Texas in 2018, I felt a lump in my left thigh area. It was a swollen gland. I went to my doctor after if it didn’t go away and she said it was probably due to a small shaving nick she saw on my leg. I knew it wasn’t. I waited the two weeks and informed her that not only did it not go away, but others had enlarged in my groin area. My blood work was perfect so I was sent home. Looking back, I had a slight fever at the appointment.

I started dropping weight. At least I noticed I had lost a little weight but it kept on dropping until I eventually went from nearly 140 down to 108 at my lowest. The doctor then blamed the swollen glands on my weight loss. Keep in mind, I noticed the gland before the weight loss and they only enlarged more. I lost my appetite and felt full quickly. I was bloated and gassy. Eventually after arguing with my doctor, I was finally sent to hematology oncology. My brother has leukemia and my uncle had just died of it a few years before. It runs in my family. I also had an enlarged bartholin gland on my right side after having the left removed in 2017. The right had never bothered me before.

I developed pain in my lower left abdomen and she sent me to a gyn oncologist. He found a complex cyst and told me to come back in a few months to evaluate. He wasn’t concerned about all my symptoms. He said everything looked good. I felt in my heart I had cancer. Maybe ovarian cancer? He dismissed me. It couldn’t be that. I’m young.

Hematology doc was nice and listened to me. Unfortunately, because my blood work is normal, there wasn’t much he could do. In addition, prior (2) MRI’s showed bone and bone marrow inflammation in my hips and femur neck with progression. My palliate care team wanted a biopsy of the lymph nodes next time I went into surgery. But I have no surgery scheduled. The gyn said he could removed the bartholin gland if I’d like and do exploratory for endometriosis since I had some symptoms of it but he wasn’t concerned. He’d remove a gland for them as well. His laissez-faire response had no urgency, and assured me it wasn’t cancer, even when I pointed out the darker patches of skin on my vulva. So I left in frustration. The cancer has to be somewhere. I also noticed most of 2018 doctor visits had a low grade fever. But no one mentioned this to me…

My CT scan did show some scattered nodes in my lungs. One in a suspicious location. The pulmonologist is great. He will be doing a follow up in 6 to 9 months to see if any grow. He took me seriously and treated me respectfully. An incidental finding on a bone scan had shown a bright white spot on my lower LEFT (not right) abdomen. They had no idea what it was and determined it had to be a bladder diverticulm barely seen on prior MRI. So I went to urology. I let her know and she was adement it was not my bladder as that would have been seen on prior scope (2017). She was certain I needed to see GYN.

I went back to GYN and also showed a lump I found in my breast. He thought it was a weird part of my breast implant. He again dismissed my symptoms and said basically to relax. So I went back to urology after feeling tubes inside me burn intermittently when I urinated. I felt it worse at night and it was quite painful. I thought it was either bladder tubes or my Fallopian tubes. My urologist once again said, It’s NOT my bladder and that I NEED to see GYN. So she sent me to someone else. The referral came in quickly and I saw a new Doctor. He was great! He listened. He asked a bunch of questions that my oncologist never asked me. He asked about cancer history. He asked about my children, my sex life, ect. I told him how I’m estrogen dominant and have almost 0 progesterone and testosterone. I had just found that out due to my pain management doctor looking to add hormones to help with my pain. Well, shit, estrogen dominance can cause cancer.  I also started developing really bad leg pains that radiate down the back of my legs, sometimes the front. I have had hip pain for 4 years (damn bone inflammation of unknown origin and not one doctor treating me for that), but the leg pains like this are new as of 2019.

My exam revealed a grade 1 prolapse of my uterus. That sucks. It also revealed a thickened uterus with watery fluid, was very painful and irritated. He didn’t even take a swab was immediately scheduled me for exploratory surgery. I read about uterine cancer and the symptoms of that. It makes sense. But why of all people, would a GYN ONCOLOGIST NOT think of this??!!!  How could he dismiss me with all my symptoms going on?! My new doc is retiring so his colleague will do the surgery. I want my uterus out. I assume the prolapse will continue to get worse and sex already hurts so be gone! I might ask to have my left ovary removed as well since I have had pain in my lower left side and cysts there. Just to be safe. I feel like I’m dying. I’m just hoping it’s not too late…

Or maybe, I’m just a hypochondriac…. They sure make me feel that way sometimes.

My Letter About Opioids

I was once physically active. I was in the military ready to fight for our country and give my life if need be. But I got sick. I’ve been sick since service and getting steadily worse over the last 19 years. The last 5 years have been brutal on me. My life was taken too young. I’m too young to have a handicap plate, says one doctor. I’m too young to have a wheelchair, I’m too young!! Well, disease doesn’t discriminate. Here I am watching my children lose their mother. All the activities I did for my son, I can not do for my daughter. “I want my momma back” says my daughter. She misses our play time, my attention, my cuddles. Don’t touch me, it hurts. I can’t go, I have a migraine. I’m sorry I didn’t cook dinner…again… I have lassitude and standing hurts. I’m sorry we can’t go, I can’t walk and it’s not wheelchair accessible. I’m sorry I can’t play that game with you, I have sensory issues right now and am in a flare up. I’m sorry I can’t take my son to all his special needs appointments, my driving is being hindered and my body is in too much pain to leave the house. I lay here, my upper body not wanting to support me being upright. My frame is a skeleton as my muscles atrophy and my weight is gone. I get partial paralysis when the temperatures drop so I can’t move real well. I live for every few hours when I can take that little pill to allow me to move for two more hours. I have come to rely upon that pill to get on my feet. I still can’t walk far or stand long, but I can do a little bit with that little pill. Imagine what I can do if I had a dose strong enough to knock back most of my pain. Imagine having a bit of my life back again so I can be there for my children and keep them out of trouble, giving them the attention they need as a parent. I don’t know what my future holds or how long I will live to see my kids grow up, but I would like to. I would like to without the pain that cripples me because I’m undermedicated. I have a high metabolism and a high starting tolerance. It’s just how my body was made. I’ve exhausted other resources and opioids work and work well for me. I don’t get high. I don’t get euphoric or even sleepy. I don’t understand how others can abuse them as they do nothing to my mind, only relieve the pain either a little or a lot depending on how much I’m given. I’m tired of being treated like a criminal or druggy for needing a med to survive just like a diabetic who is dependent upon insulin. I need my benzo to sleep as I’ve tried all the others and a safe alternative made me stop breathing. My body is different than others. My benzo stops the muscles that tighten and spasm and cause dystonia like symptoms. It’s the only thing that works as muscle relaxers have no effect on me. I don’t know why. It’s just how I’m made. I’ve taken them safely for years. I don’t take them at the same time and I’m smart with my meds. It’s my body and my right, right? When did others acquire the right to make medical decisions about MY body?
Here it is in a nut shell, I would be more than happy to sign whatever form giving consent to increase my meds to a dosage high enough to combat the pain and give me a quality of living risking death any day. I would rather have some semblance of a life and risk dying from my meds than to live here in agony and risk dying from being unable to tolerate the pain anymore. Where does that leave my kids? My family? I’m the glue that holds them together. I’m in palliate care though see a typical pain management center and yet I still don’t get enough meds to function. I’m not going to ever get better and I’m now watching my own child deal with my pain as it passed down to him as well. He’s a teenager. He’s tried tylenol and NSAIDS (He’s lucky he doesn’t have my mutation that doesn’t process NSAIDS), but they don’t work for his pain. I’m so scared for him. Will he ever get the opportunity to use what has worked so well for me at the right dose? He already doesn’t want to live. He lives for me right now. I can’t imagine what will happen to him when I’m gone. He has no hope for his future and I’m losing hope for mine.
Do you want a productive society? Truly? Like any meds there are risks. Like any med there are benefits. I should have the right to chose what I put into my body and stick with what works and use the appropriate amount for MY body to be productive, to give back, to help society rather than lay here crippled and watch my family fall apart because someone without chronic pain decided they wanted to make my medical decisions for me. I’ll take death and pain relief over this hell my life has become. I’m a veteran and I’m suffering and now my child is is suffering as well. Cannabis might be an option for some, but it is not an option for me. It should be legal for those it does help, but I chose my current med as I don’t get high and it really truly works when at the right dosage. I chose life. For now.