The Gift of Truth, the empath..

A blessing and a curse (God forbid but it’s not easy to see into a soul of another human being. People don’t like their truth being called out.) I’m no psychic but I can read the emotions of people around me. You ever hear the saying, “I can cut the tension in the room with a knife!” Intense tension of others can be felt by many.  Any emotion expressed with to a high degree can typically be felt by more than just empaths. But as an empath, not only can I feel the intense emotions deep within, but also more subtle  emotions as well; happiness, fear, anxiety, love, disgust, indifference, and lies, among others.  This is my gift.

Unfortunately, it can also hinder relationships. I’m not one to typically beat around the bush, talk in circles, play games, or mess with peoples emotions. I’m pretty open. I can be blunt, very honest and I call it as I see it. I’ve discovered that a large percentage of the people I’ve come in contact with are not quite so comfortable with this honesty. It can turn people off and put a wall up or make others think I’m weird. I get it. I understand. But I also rather be around others more like me. Straight up, to the point, and openly honest.  Maybe the reason why I like certain cast members on my reality TV shows more than others. Jordan, Kendall, Ashley S, Hannah to some degree (even though she still annoys me a lot) and a few others.

I feel bad for my son, who has enough issues of his own to deal with, who also has this gift. He can FEEL the emotions of those around him. He is so darn perceptive and intuitive. I kind of hate that he has to have this gift. Sometimes it’s easier to be oblivious.

I’m going to stop here for now. I’ll add more to this later. Anyone else have this gift? How does it affect your life?

The hypocrisy and double standards of Bachelor Nation

I grew up watching The Bachelor, Bachelorette and the spin off shows, now Bachelor in Paradise. It’s one of the few reality shows I enjoy watching, besides Survivor, my all time favorite show. I love watching the love story unfold, the personalities coming together to compete for the heart of the man or woman lucky enough to be chosen to find their special person. A large part of my interest is that I like to read people. To read the emotions and feelings they’re projecting and picking my four favorites I believe will make it to the end and then to pick the one I think will ultimately win the heart of the contestant. Am I right? Did my analysis come true?

I’m usually very good at the ‘art of reading people.’ Seeing through their persona to who they really are inside. To be able to see through deception and lies and see the truths behind their eyes. I’m no mind reader, but I can read emotions. Some would call that empathic or an empath, if you believe in all that.  So anyway, I really enjoy watching the show and seeing if I’m right, if I made the right picks and if they get together in the end. Did they get their happily ever after?

The show has recently changed. Did they get new producers? It went from keeping it mostly classy to a lot of trashy with scripted ‘characters’ and producer picks to purposefully spin things up and create drama. The show was fine the way it was. I’m not liking this new direction. I’m not the only one to feel that way. Yes, I understand ratings, but it’s going over the top in spinning things up and it’s feeling more like a soap opera then a reality love story. A little drama can be fun. Better them than me, right? But having to purposefully create a villain with scripted drama in every show is really ruining the original intent of the show. Even the spin off show is different, where prior contestants get together and co-mingle, getting a chance to meet the other contestants to see if they might have a chance at finding love. Now, there are hook ups before they even get together and scripted drama once again, to sway the minds of people and add their own political agenda’s into the mix. Creating cue words to be spoken over and over by the various contestants and leaking into our society through all the fans glued to the show.

I also feel it’s creating dividing lines in our nation of viewers. These scripted dramas put out for all to see with political undertones and ideas that not all viewers are ready to deal with or want. It’s one thing to allow the characters to evolve with everyday life put out for all to see, but it’s a whole other feel with ‘forced narration’ when purposefully spun and set up to create these issues and situations for our nation to debate on social media. One thing I am seeing over and over is the double standards that are alive and well in our society. Bullying is real and still alive and kicking. I also see hypocrisy.

A person’s reputation can be made or broken on this show.  These are real people with real lives and I think sometimes the fans forget about this. The cattiness is real. The pain is real for those who’s reputations are put on the line due to backstabbing and manipulation, lies and ‘drama’. I lost respect for the show, the producers, and several of the cast members after watching this season’s Bachelor in Paradise. Like I said, a little drama is fun, but the downright vicious behavior of some of the leads are absolutely disgusting and disgraceful.

It’s no longer about finding love and relationships but about digging up the most dirt and smearing each other on national TV for all to see and a nation of fans to debate and be divided over. A perfect example is Blake. Blake was one of my favorites as a contestant on The Bachelorette. I rooted for him! He’s sweet and likable, different, but endearing. I know sudden fame can easily get to a persons head. Attention, after possibly lacking it in life, can really be uplifting and exciting and provide opportunities that would otherwise, have never happened. I feel this is what happened to Blake. He’s young, single, living the dream with multiple girls interested and vying for his attention.

Being a simple fan, I can only go off of the information provided, using my inner senses to create the story and understand the situation. He dated one of the ladies from the show. He also chatted with other ladies on social media, hooking up with each other at various get togethers, some producer created and others on his own, just like any of the other contestants.  It’s what they do. Living up their moments in the spotlight and getting together for the parties and obligations as they all do. The relationship with the girl I mentioned, didn’t work out. They parted as friends. Friends with occasional benefits. Again, he’s single, his choice. From what I understand, he had his eyes on one of the future contestants of the, then, upcoming Bachelor in Paradise season. Again, I’m reading that he’s not the only one to start chatting with future contestants to see if they might want to hook up on the show. The other girl he was chatting with, who I call C girl, was very interested in Blake. That seems quite clear to all. She apparently wanted a relationship with him and based on the information provided, he didn’t. He did seem very friendly and chatty with her, as is his right.

There was a get together at ‘stage coach’ where many of the contestants attended a country music festival.  His friend with benefits showed up and they took advantage of their time together. As consenting single adults. Both of their choices. But then C-girl wanted to get together with Blake and apparently he said no. Based on the text messages that came out later, C girl wanted a straight ‘hook up’ no strings attached as implied in the conversation revealed on social media. She said, simply sex. He said, ‘That’s what they all say.” She got an uber to his room after he declined. She chose to show up at his room and she chose to ‘coerce’ him into sex.  Yes, he too had that choice. They both were drinking and drinks lower their inhibitions and shit happens sometimes.  Shit definitely happened this time.  His only mistake, from how I see it, is in not being adement about his no. Let’s put the shoes on another’s feet and flip the situation around. Can you imagine the backlash a man would get if he weaseled his way into a girls room and turned her no into a yes for ‘just sex’? The backlash would be atrocious with many thinking he would be taking advantage of her. But this was a female, rather than a male. Woman’s rights and all….

Again, two single drunkenly consenting adults. It happens. He made a mistake and he told her so. It never should have happened, but it did.  A lot of us have been there. We move on. The issue is that C girl went on national TV and purposely created drama with outright lies and viciousness to smear this guys name. Rather than go on the show to find love and focus on herself, she wasted multiple days spreading rumor and lies, stiring up the drama and making Bachelor nation turn against this guy, ruining his reputation for all to see. Remember, these are real people, and fans can be crazy.  As Hannah B stated on the Bachelorette, a comment I agree with, (but not in reference to Blake), she should have simply, “Stayed in her lane!” Instead she drove all over someone else’s lane, creating drama and spite, ultimately making her look like a desperate drama queen who felt like a woman scorned because most likely, she lied again, when she said, “just sex!”

Knowing how women can be, Blake was very right when he said, “That’s what they all say.” Some women are conniving enough to push themselves into the bed in hopes of keeping a man who has no real interest. A lot of us have been there and can relate but to lie on national TV because her plans didn’t work out for her was wrong on so many levels, it left a bad taste in my mouth and a disdain for the producers who ‘set it up’ for her to smear his name and try and ruin his reputation. I personally, applaud him for releasing the text messages. What else is a man to do? We all know that if he simply denied the accusations, no one would have believed him. I know he didn’t want to smear her name but he really was left with little choice if he wanted to get the backlash off of him and his family. I don’t blame him. I would have done the same. This isn’t small town drama, this is big time.

So the divided nation is up in arms over him sleeping with two different girls two nights in a row.  Remember, one was a friend with benefits, knowing he’s free to do as he pleases as he’s still a single man. The other was told no yet showed up at his door in her drunken state in hopes of pushing him into more than he bargained for. And yet, his eyes were on another, in hopes of winning her heart on Bachelor in Paradise. Oh the webs we weave. I just don’t understand how it’s ok to flat our lie to both Blake and to the nation of viewers but it’s not ok to be a single adult, playing the field, openly, while looking for love. Don’t a lot of them hook up off the show? Pot, meet Kettle.

The saddest thing I think I saw during one of the episodes was C girl throwing herself on Cam, only to get a rose, using him and discarding him the moment another man walked down those stairs. Poor Cam. She should have focused on herself and finding love rather than wasting the first few days bashing Blake. All she was left with to chose from was a Cam, knowing she only wanted a rose when he really wanted so much more. Then she went on to say how excited she was to meet Mike and was chosen for that date, which made me cringe. Poor Mike. The moment Dean walked down those stairs, suddenly, she’s all Dean, goodbye Mike, as she tosses aside another man to get her way with someone else. Apparently, their still together if I read that spoiler right. Funny that it happened to be Christina’s ex, since after all, it was Christina who dated Blake and was friends with benefits. It seems to me she may simply like going after her competitions ex’s. She sure did stir the pot on The Bachelor when sharing the spot like with Hannah.

So now Bachelor nation is divided on Blake with hate still spewing out of the mouths of the fans and I’m just disgusted with the whole thing. Fans are angry he was ‘hooking up’ outside the show, again, something that happens with many of them, and yes, of course, mad about the two girls, two nights apart, a mistake he admitted so let him move on from that. And that leads me to Demi. I have a like/dislike view of Demi. There are moments she’s hilarious and fun to watch and other moments she’s the epitome of mean girls. I don’t like that side of her. Demi is bi. No big deal, her choice. She went on the show to find love like the rest of them, right? Apparently, not so right. She has a girlfriend back home while she ‘figures things out’ and all Bachelor Nation can see is, “Awe, she’s coming out on TV.” The political agenda is strong. I don’t care that she’s coming out on TV, good for her, not the problem. I have a problem with the producers knowing she has a lady back home and allowing her on the show anyway, something that’s not suppose to be allowed, and yet the exception is made to drive home a political point, highly scripted and forced rather than allowing love to just happen.  And yet, no one is seeing a double standard here in regards to the girlfriend back home?

Let’s pretend for a moment that we don’t know who were talking about. Girl meets guy, they are super into each other. She spends a week putting all her eggs into one basket, totally digging the guy and giving him hope. He digs her back. After feelings have been developed, she suddenly confesses to having a ‘boyfriend’ back home that she’s still ‘trying to sort out.’ Bachelor nation would be going wild with the hate about now.

Switch it up. Guy meets girl. He spends all his time with this girl who really digs him. They are invested. He then tells her he has to be honest, that there’s a girl back home he’s been seeing and he’s not sure where his heart is….  Again, Bachelor nation would be up in arms, defending this girl and bashing this guy for even going on the show to begin with. You don’t go on the show to figure out if the person back home is right for you or not. You go there to find love with the contestants on the show!  But no, double standards and all that. Just because it’s a girl she has back home, somehow makes this right? To reiterate, I’m not bashing her for being bi. I’m not bashing her for wanting an open with relationship with multiple people.  If they are consenting, it’s their business, not mine. I have a problem with her going on to begin with. For not being straight up to begin with. For the producers creating a political show, purposely staging the drama to further their views, changing the original intent of the show and breaking their own rules to do so. Anyone else would have been outed. But because of the LGBTQ movement and producers wanting the show to go in a more liberal direction rather than letting it happen on it’s own, they allowed the rules to be broken and this double standard to exist. That’s my issue.

Didn’t Demi out a contestant on the Bachelorette recently for having a girl back home? Pot, meet kettle. Didn’t she vigorously ridicule Blake for having sex with more than one woman in a weekend even though he was open and single? Even more vulgar and classless was the comment she made on social media to another contestant who called out the hypocrisy. She involved his wife. We don’t go there. If you have a problem with someone’s free speech and viewpoint, it’s crossing the line to then viciously comment about the person’s family. I completely lost respect for her at this point. I might enjoy her funny banter with Jordan, but I can no longer look at her as a future lead to the show. She might want to work on that anger issue.

And talk about mean girls, another episode that seriously disgusted me was the airing of ‘mean girls’ when Blake injured his foot. To watch three grown ass adults completely ridicule this man and be ‘happy’ he got hurt, is just so wrong on so many levels. How is this cool? How is ok to see someone really hurting and to laugh and think it’s the funniest thing? I guess empathy is being lost in our new generation. I thought bullying was something we’re trying to speak out about and stop.  But no, due to catty women and notorious gossiping and lies, it somehow makes it right to kick a man when he’s down. Yes, let’s applaud that. Let’s glorify it and make it cool again. SMH. And Tayshia, I really liked you. I did. You lost my respect when you joined ‘mean girls’ for that catty bashing fest. I thought you were better than that. I guess I was wrong.

The point of the show is meeting people and finding love. To watch people’s love stories unfold and relationships form. The direction has changed and it’s more about catty drama and scripted set ups that leave a bad taste in my mouth. Seems the producers rather make people look bad, highlight bad behavior, and push the drama when these really are, real lives and reputations at stake. I know these people chose to be on TV and put their lives out there for all to see and judge. And yes, a lot of mistakes are made and people grow from them. Sometimes the attention can get to someone’s head and they get lost in the notoriety and attention from the show. It can happen to any of us. We’re human. But never is it ok to purposely lie on national TV to smear a mans reputation. Never is it ok to purposely mock and make fun of a man, especially while he’s ok. It’s never ok to throw stones when you yourself live in a glass house. How can hypocrisy and double standards exist on this level and not get called out? Or if you do, you get bashed for it. As our world is changing and people are advocating more for acceptance and equality and being treated with respect, we need to lead by example. It’s easier to sway someone with honey than it is with vinegar. We need to take a good hard look at ourselves and reevaluate how we judge another. Switch it up. If the shoes were flipped and it’s ok in reversed roles, then maybe we shouldn’t be bashing so much. If those shoes are on the other feet and that behavior would be atrocious, why justify it and glorify it? People really need to think before they speak. They really need to evaluate a situation before they openly judge and chose a side. Remember, there’s also two sides to every situation and somewhere in the middle, is the truth. Allow both sides to speak before jumping to conclusion. You might end up with egg on your face when you realize, the ‘truth’ wasn’t quite how it was relayed.

Bachelor needs to get back to it’s roots, the new direction isn’t enjoyable anymore. Yes, I can simply turn the channel, but like anyone else, I’ll share my thoughts before I do.

 

 

Living my life through a window’s view..

Hubby made a comment yesterday about one of his work ladies bringing her baby to work. He got to hold and cuddle the little one and he was geeked about it. It stung. I realized I’m starting to feel insecure and jealous and I don’t want to be that person. I’m missing out on even the simple things in life to bring one some happiness. I feel trapped behind these four walls. I see life passing me by and I’m only in my early 40’s. I should be living it up before my 50’s strike. I’ve been ill since my early 20’s with periods of time where I was managing ok but the last, going on 6 years now, have only been a downward sloap with no real periods of remission.

I have so many health issues that they seem to feed off each other, one flaring up the other and making things worse. It’s embarrassing how many conditions affect me. I don’t want to be that person. I am that person. I hate it.  I’ve always wondered deep down if I had never joined the military, if I’d be much healthier today. That was the catalyst. I’m certain of that.  I was pretty healthy before hand and it didn’t take long to start attacking my body, shortly after joining. Was it the vaccines? The abundance of physical activity? Some other kind of exposure? I do know I’m not alone in what I suffer as there are so many veterans going through the same. Maybe we all have a certain genetic disposition that caused us all to express certain genes that might otherwise have remained dormant? I have found that many of us are hypermobile. Many have gone on to be diagnosed with ehlers-danlos or hypermobility syndrome. Is that the link? But not all of them have that.

What we have in common is ME/CFS, fibro, IBS, chronic headaches, and unexplained neurological signs and symptoms. There’s more but that’s what the VA will compensate for. A lot of us also have GERD, other stomach issues, IBD (which they deny the link), migraines, and other problems involving our joints and muscles. Various cancers run higher in veterans as well as MS, parkinsons, ALS, and other problems. I can logically understand arthritis and wearing and tearing of our joints due to all the physical requirements. That makes sense. But what about the rest of it? That’s where things get murky. What do we all have in common? Why do we all suffer so many similarities? Even if the general population were to start having the same health issues at the rate of veterans, we were the first. At least that I’m aware of, so it started with us vets.

So many studies to get to the root of the issue and yet most of that money seemed wasted on studying stress and the human body. Not all of us were put under loads of stress. I guess putting the focus on stress makes it easier to blame the mind that any physical exposures we might all have in common. No government would want to admit to that, but it’s what most of us are thinking.

We will probably never get any real answers. At least not while still walking this earth, or in my case, watching life pass me by out the windows of my home, stuck behind these four walls, and sinking into a funk, wishing myself well again. You can only hold on to hope for so long. As the years pass by, that hope gets heavier and heavier to hold onto. Trying to keep a positive mind frame but when you’re riddled with pain that’s inadequately treated, it has a way of making hope, that much heavier.

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?