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?