Punished for Being Different..Zebra

I am not normal. I am different. I do not metabolize medications or react to them in the typical fashion. I do not present normally with illnesses, disease processes, my blood does not show inflammation. I am not normal. I am different.  I am a Zebra surrounded by horses. The system has forgotten they even exist…

I am punished for being different. I am treated differently for how my body presents itself and reacts to things. If only I could trade bodies for a week, a day, a year… a lifetime.

I do not bruise right away. Sometimes it’s days later. When my nerve acts up, it doesn’t follow the traditional pattern. So they assume I’m making it up or malingering. If I wanted to make something up, I would study and follow the course of things. Who the hell would ever make up something so freaking odd. I am simply different. And I am punished for it. I am treated differently, typically assumed as a drug seeker. Fun times.

Even with full inflammation in my body, a moderate flare up of ulcerative colitis, joints flared up with inflammation on ultrasound, my blood is normal. It does not show the inflammation in my body. It betrays me to standard medicine. They assume I’m fine. Or lying.

I am sensitive to pain. I metabolize pain meds quite quickly. Yet you could load me up with Valium and it has no effect on me. Nor do muscle relaxers. My hubby would be passed out on one and yet to me, it does nothing. It doesn’t help either.  I react ok with short term meds but am not affected by long term meds. I don’t process them. I’m highly sensitive to SSRI’s. Half of the lowest dose would make me high as a kite and it does not relent. I don’t take them.

I suffer, not so silently, in pain, quickly metabolizing the medications I am given for it but never any more even when something new and acute arises. Soon they’ll probably look to take my sleep meds away. I am being punished for being different.

I broke my nose yesterday, yet I did not bleed. (I bled a little today). There are no bruises around my eyes but my nose is broken. I am different. I have vibration sensations throughout my body at times and no answers. I feel like I have a metabolic issue but my blood betrays me. It’s normal.

When my electrolytes are slightly low, it affects me greatly. One tiny drop below normal and I react. And yet doctors don’t bother to mention it to me as it is not normal to react as I do. They forget I’m a Zebra. I don’t make sense. I am not normal and I am punished for it.

Bitter Fruits of Misery

We’re all allowed that day. That day when life’s misery has you in it’s clutches with long sharp talons gripping you tight and pulling you downward. Downward into the abyss. The dark spinning spiral of madness turning you and twisting you and spinning you till you want to hurl and curl up in a little bawl and cry.

I think I’m stuck in “that day.” That day that never seems to end and no matter how brightly you try to spin it you just can’t pull yourself out of the clutches of madness and misery and reach for the sunlight.

I broke my nose. Woke up in the middle of the night (11:37pm) to pee. Went to peak on my daughter to make sure she wasn’t staying up on a school night and there she was, snug as a bug on a rug, all tucked up tight in bed. I smiled. I thought about kissing her cheek but with the pain in my leg as bad as it is, I just thought her one instead. Then turned to leave and slammed face first into the wall I forgot was there. I heard a crack. Not only the sound of my face slamming into the wall but a distinct and separate ‘Crack’ and I knew. I knew right then I broke my nose.  I stood there stunned and baffled and pissed off all at once.

I was afraid to look in the mirror. Already I felt the swelling and stuffiness of my nose but amazingly, no blood gushed from me. I peaked. It looked funny. My typically narrow top of my nose matched the fatter portion of the middle. I wiggled it and heard a little crunch. Ok, no more wiggling. So of course I had to go downstairs to get an ice pack and really I should have just kissed my daughter. The walk would have been much shorter, the pain much less, and the nose…unbroken..if only.  Thank God I didn’t have my glasses on at the time, though some might think I might have seen the obvious wall in the dark at our new home…

So today I wake and I can still see the swelling. I blew chunks of blood and there is a blue ridge around my nose. I’m slow to bruise. That’s my normal. I’m not normal. Most likely in the next day or two, I’ll have bruising appear out of nowhere under my eyes. We’ll see. I’m an odd duck. It hurts. My neck is now a little sore and I didn’t expect that one. All I can think is, “Please God don’t let my neck be jacked up, I don’t want another flare up.”

Just a few days prior I had visited my pain management doctor seeking an added pain med prescription due to my hips. Pain came out of nowhere nearly two weeks ago, knocking me down and doubling me over and it intensifies as the day progresses. Each day, the pain getting worse. I wake up feeling some relief and by noon I’m hurting. Really really hurting. By evening, I can barely sit up and my butt is so painful I have to put it between the couch and foot bench so as not to put any pressure on it. My left hip has pain on the side, a line around the back under my butt cheek and down my leg. My left knee hurts. My left heel feels like a deep heavy bruise inside it.

I endured that for 3 days and 4 nights when enough was enough and I broke down and went to quick care. Something serious had to be wrong with me. The pressure in my stomach and low back and hip cavity were intense. It felt like I was being gripped by each iliac wing and pulled apart. I was done. The doctor at quick care was concerned. I had a fever and swollen glands and she too felt something more serious was going on and wanted me to head straight to the ER. The dreaded ER. I hate needles. I went to quick care to avoid them. You rarely escape the ER without an IV and blood draw. I didn’t want to go through it. My fear of going through all that to just be told there’s nothing wrong is what kept me from going in the first place. Though I was scared something truly was going on the pain was that intense.

My worst fears were realized…once again… the ER failed me. I watched the room clear of patients, some which had attended after I did and walked in on their own. And yet I waited. My gut told me this was a waste of time. My hubby agreed with me. The pain said otherwise. I finally got a room and the doctor wanted the CT scan ordered and he left with an order for a ton of blood work and the IV line to get started. I was smart. I had hubby stop home before we went to the ER so I could lather up my arm with Emla cream. It’s a numbing solution. I hate needles. The nurse was efficient, I give her that. The personality of a cracker. Dry and tasteless. I felt the judgement.

New PA comes in and at that point I’d been stewing in pain for 2.5 hours with no relief nor any of my normal pain meds and I was pissed off, hurting like crazy, and out of my comfort zone. For the 4th time, he wanted me to explain why I was there. 4th time as I had to explain to the quick care doctor, the ER intake, the first ER doc and now him. So I was a little testy. I never yelled but I was certainly irritated and asked when I was going to be given pain relief. He got offended. Grow some thicker skin, kid. Don’t people realize when you are in that much pain it’s difficult to talk?  Guess they’ve never experienced true heavy pain. People don’t want to sit around and gab. I’m sorry but I’m hurting, I’m roughed up and I wanted to know what the hell was wrong with me.

Apparently, my labs were normal. I am not normal. I have never been normal. My blood just does NOT show inflammation or anything else for that matter unless it’s an electrolyte imbalance. He said because my labs were normal they will only order an xray and send me home. Of my hip. No mention of my the pressure in my gut, the lower left abdominal pain I told him about, nothing. Just my hip. I got my pain meds. I refused to move from the spot to give the xray until I had pain relief. It didn’t help much. 1 mg of Dilauded and I was still in pain. He said that was the good stuff. The potent stuff. I don’t know much about Dilauded or doses but I do know it wasn’t the ‘good stuff’ to me. It did take the edge off but when the edge is 50 feet off the ground, well, it’s not much of a move.

Xrays showed a joint effusion. He had backup to tell me the ‘news.’ Guess he assumed he wouldn’t find shit and didn’t want to deal with me. He told me he was tired of people coming in just to get tests ordered when they could have waited and had it done through their doctors. He assumed I was playing the system. Probably thought I was a drug seeker. I had to remind him that I did NOT just ‘stop by’ the ER for testing. That I had gone to quick care to avoid clogging up the ER (hate needles) and that the doctor from quick care ORDERED me to go the ER for a CT scan. No CT scan. No help for the abdominal pain and pressure. So I have a joint effusion. What does that mean??

I was so irritated for being brushed off and told I was fine when my body said otherwise I told him straight up that he’s assuming I’m a horse among horses when I’m actually a zebra in the room. He got quiet for a second. I then asked him if a patient were to have moderate to severe ulcerative colitis, would they have normal blood? He said they would not. They would have inflammatory markers and other stuff. I asked if their CT scan would be normal. He said it would not, there would be stranding or something like that. I told him that a few years prior I was diagnosed with ulcerative colitis and ALL my tests were normal. I am a zebra. I am not normal.

He refused to relent. He closed himself off and spewed the same garbage and ignored the fact that not all patients present or fit into the same narrow boxes and I was brushed aside, discharged and sent home. With a joint effusion. So how did I get a joint effusion? I have ME/CFS, in a pretty bad flare up so my activity level is pretty nonexistent. The next morning I woke up with blood in my pants. I can only assume that on top of this ‘joint effusion’ I probably had a burst ovarian cyst but because he failed to do a CT scan, it was missed. This would be the second cyst in a few months time. Of course, I have no proof of this since, you know, no CT scan. I had a complex cyst a few months ago and yet the pain still comes and goes in my lower left abdomen and that night it was pretty intense.

The next morning I could walk again. I did PT with my home physical therapist and went on my marry way. The evening brought some discomfort. The next day I went about my normal again but by the afternoon, I could hardly sit up. I have pressure in my mid-spine but no pain. The pressure is still in my lower back. The butt pain is just as intense (still hurting as I type this) and the left hip is killing me once again. I had a repeat MRI scheduled a few days from then.

I don’t know if you’ve ever experienced and MRI of you hip, but if not, you have to have your feet straight out and pointed slightly inwards. My feet don’t do that. Hell, my legs don’t do that. They point outwards. My left more so than the right. They had to tie my feet together. 30 grueling minutes later I was done, drenched in sweat, spasms and twitches running through my legs and my arms were numb.  MRI results showed the same prior bone marrow inflammation in my sacrum/iliac wings but this time it showed it in my femurs. Both of them. Bilateral stress reactions at the subcapital region of both femurs. Bilateral joint effusions. Left sided paralabral cyst and labral tear, which I had been aware of. (the labral tear). Results mentioned prior MRI showed minimal inflammation on prior scan, not documented, on both (?) femurs with obvious progression 1 year later. So I have bone inflammation, stress reactions which apparently is one step before a fracture, joint effusions and a cyst. Ok. Now what?

It’s now about 1 week later and here I sit.  Now what?  On top of that, I see pain management about that prescription for my extremely painful hip (oh yea, that’s what I was suppose to be mentioning, long story later…) and no help. Nothing. I’m in obvious pain but I’m at the ‘max’ amount ‘RECOMMENDED’ by the CDC, not required, but no. I get no additional pain relief. Remember, I’m not normal. I metabolize pain meds very quickly so I have to take more through the day. I also cannot tolerate extended release drugs so none of the long lasting good stuff. I am allergic to morphine and adhesives. I can not tolerate anti-inflammatories due to a rare (very rare) double metabolic mutation that metabolized them. I can’t take aspirin as it makes me bleed. So I have very limited options. Prior steroid use caused hives the first time (very rare) and on second attempt did great for 2 days and then crashed on the 3rd and had to stop cold turkey. All this is documented in all my records. She offered me steroids.

Now what? I took them. I’m in so much pain my hope is that I can tolerate them for at least two days and maybe, just maybe, it will be enough to get some inflammation down. I decided to only take half the recommended dosage to play it safe. Doesn’t it mention it can cause bone erosion? Wouldn’t that be dangerous if I have weak bones? I need a bone scan. Isn’t she a pain MANAGEMENT person? She failed.

So I decided to switch doctors. How can I continue to see a person who will not MANAGEMENT my pain?! What if my leg were broken? Would she give me meds then? I actually asked her this and she could NOT answer that!!!  Seriously??!! So I found Corey, the guy who use to be my pain management guy at the same office so I tried to schedule with him.  Guess what?! He declined.  Because I take benzo’s for my sleep meds. They do not see patients that take benzo’s and opioids. So now what?

How can such a little pill that does so much for me cause so much controversy? Maybe I should save that one for another blog/vent session as I can write an article on that one. I might not be able to stop! But besides ALL that, even more important than all I’ve mentioned, not ONE doctor has told me anything about my hip problem!!  I’ve written to my primary doc many times. My orthopedic doc doesn’t handle my issues, only the labral tear. WTF?! I’m beginning to understand why some people go postal! Seriously!  (I won’t go postal, just saying, I understand their mindset). I asked if it could be necrosis, a bone infection, a tumor?! What is it? I have no joint space narrowing and no damage to my cartilage so, based on Dr. Google, that rules out arthritis. What are my instructions? Do I weight bare, rest it, dance on some wild chickens? What the hell do I do to fix this!??

I have researched Dr. Google extensively and there isn’t a lot out there on bone inflammation that doesn’t deal with arthritis but every mention of stress reaction of the femur mentions crutches, some kind of boot thingy and no weight baring for a certain period of time so as not to cause a fracture and yet no one is giving me instructions on what to do and what is causing it?!

I finally got an email saying my doctor looked through radiology and spoke to them and they said it’s a chronic inflammatory reaction. She said it feels better in the morning since I “rested” while sleeping so rest it…..  ……   ………………………………………………………………………………………………………………………………………

Now what? I promise I’m not deaf. I’m not stupid either. Remember I have ME/CFS so I’m not active so how the hell do you get a stress reaction on the strongest bone of your body when I’m not doing anything to impact it?!!  I haven’t ran since 2015!  Though interestingly enough, thinking about it, I was a runner and I’ve had hip pain since then. It took them 3 years to get that first MRI with progressive hip pain so maybe it was a result of my running back then?  And if so, why is it progressing? No, I haven’t been on total bed rest but I’m home-bound and use a scooter when I leave for any distance and don’t do much anyway due to my fatigue and muscle pain so if it’s from running way back then, why is it progressing?  How did it weaken to begin with? I’m probably malnourished. I’ve battled low potassium, low sodium, low vitamin D and now I just found out I have low calcium. Do I have a malabsorption issue? How do I test for that? How do I fix it? Last scope only showed inflammation in my stomach.

My life feels out of control. When I can’t function, I spiral. I need to function. I need to be on my feet. Even with some muscle pain and fatigue, I could at least keep up a little, but now, I’m lagging behind. The papers piling up, my daughter’s homework lost, my son bored and needing attention and direction. The house is a mess, stuff still left unpacked, disorganized, and cluttered. And my hubby is running himself to the ground trying to pick up my slack but it’s still piling up and I’m drowning in it. What the hell is wrong with me?!!

It’s sad that doctors can’t spend a moment in their patients shoes. I would love to stuff them into my shoes and make them walk in them with all my little abnormal ‘unique little features’ and leave them as I’ve been left but with the fear that it’s forever with no answers and no help and see how they feel about things. I want my life back!!!

So here I sit, having ‘that day’ that is completely running me over and tiring me out and leaving me wrung out and left out to dry in the winter with snow and ice and freezing temperatures… with a lost bird flying over shitting on my head. I’m not normal. I broke my nose.

 

Life’s Learning Moments…

Life has a tendency to throw us curve balls…lemons….  Having read a post online about medical misdiagnoses and mistakes that medical personnel have made, it blew my mind. I don’t doubt there are many mistakes that have been made along the way but reading about them and some being so ridiculously careless and neglectful reminds me that doctors are human. Doctors are flawed. They are not perfect machines that know everything and can tell you exactly what ails you. They are indeed…”practicing.”

I have had hip pain for many many years. Over 4 years ago, it became constant. Pain meds help but no true explanation has been given. I have bilateral labral tears and bone marrow edema in my pelvic bones. Rheumatology cleared me of those diseases and orthopedics didnt’ think the labral tears were causing all the issues I had going on and didn’t think I’d be ready or benefit from the surgery so I pressed on.

Four days ago, the pain intensified out of nowhere. Tripled in strength, knocked me down and took my breath away. It feels like there is something sitting in my pelvis, expanding my pelvic bones and ripping them open. My left leg is intensely painful all the way to my heel. There is a specific area on my upper femur bone that is intensely painful deep inside.  In addition, I’m having sudden lower back pain and left sided abdominal pain that can get quite intense. It hurts. It hurts considerably and this time, my pain meds do not touch it.

I bared it 3 days, each night increasing in it’s intensity leaving me breathless and frozen in pain. I didn’t want to go through another night like that as the pain seems to double by evening and my bones feel like they are rotting.  I am on a pain contract so part of me is afraid to go to the ER and I also am terrified of needles and rather avoid an IV to be honest. I hate being poked and prodded and I truly honestly really really felt it was serious. Something really bad is going on. Pain does not come on that intense without a significant problem. I needed help.

I went to quick care instead. I figured if it was bad enough, maybe something would show on an xray. I let them know I was NOT there for pain meds, I have my own. The doctor was truly concerned. I told her about my weight loss (well over 10% of my body weight), my swollen glands, my intense hip pain, my abdominal pain and the new pressure feeling inside of me. I was fevered. I told her how I had been apparently fevered almost all of 2018 per my medical records. My lack of appetite and bloating.

She immediately showed concern in her eyes and felt it serious enough to skip the xray and get me immediately to the ER for a CT scan and blood work. I was scared. I was absolutely certain today would be the day they would find what ails me.  Whatever new is going on is not my ME/CFS. It’s not my Fibro. This is different. I’m terrified I have cancer. I’ve been asking them to look but no one bothers. I finally have a hematology consult in over a week. I also have a pulmonary visit to establish care as I was recently diagnosed with emphysema and they found 4 nodules in my lungs. One is simply a granuloma but 3 are not. One for certain is suspicious and the locations are scary.

I had also found a lump in my breast. I felt it. It’s there. I’m not crazy. In fact I didn’t find it by looking for it, I simply saw it sticking out while looking in the mirror after my bath. My hubby felt it. My doctor felt it. She felt the location bizarre since it’s so close to the skin. She ordered an MRI of my breast and guess what? No mention of it. No mention of the prior lump that was seen on my MRI back in 2013 in that same breast either. I have issues with my right breast with intense itching near and on the nipple and have had that off and on for a while. The MRI showed a hyperintense focus on my right breast (meaning too small to classify) and I was told my test was normal. Carry on….

Anyway, I finally felt someone was taking me seriously and the doctor was sending me to the ER so I ran home, rescheduled some appointments and arrived at the ER. There were only 3 groups in there which wasn’t too bad, and one lady who arrived (still standing) after me. I checked in and told them quick care sent me that way that I was in excruciating pain. They got me a wheelchair, mine forgotten at home, and then checked me in and sent me to wait. And wait. The room cleared out, including the lady who came after me. My hubby and I looked at each other reaching the same conclusion. They think I’m drug seeking.

I was finally called back and the doctor said he read through all my information in my records and said I had a LOT going on. No shit. I absolutely do. He said he wanted to draw some labs and do a CT scan. I was ready for it. Did I mention I hate needles? I had secretly put emla cream on my arm before arriving. It helped! I didn’t feel the sting or slide of the needle and tube enter my arm. Thank you God.

Lots of labs were drawn and I waited. My pain increasing, my next normal dose about to be past due and no one has provided me pain relief. I asked. I never ask as I don’t ever want to be seen as drug seeking and I feel if they know up front I don’t need or want pain meds, they’ll take me seriously. But this time the pain was so intense it hurt to talk. I asked for them. At this point it’s over 2 hours since I had arrived and no pain meds entered my IV line.

A new doctor walked in. My bad, a new PA walked in. (they are the worst in my opinion. Give me an NP any day over a PA, though on occasion there are some great ones). I asked immediately for pain relief and he said well, lets get your history and I got mad. I’d already repeated my self so many times and they want me to do it again? Where is my pain relief. He yelled at me. He got butthurt when I simply raised, didn’t yell, my voice in frustration and told him I’d been waiting forever and I’m in serious pain.

He told me my labs looked great, I wasn’t in any danger and that they were only going to get an xray on me and send me home. He said I’d get my pain relief and I truly believed in that moment his wall was up, the door was shut, his mind stuck and I was not being taken care of, I was simply a drug seeker taking advantage of the system and getting med tests when not needed at this time. PA Jared O did not want to listen, did not want to HEAR what I had to say. He told me he was tired of people coming to the ER to get tests done faster than they would by going through their doctors. I told him I was in SEVERE pain and felt like my bones were being ripped apart, something was wrong, I needed help!

He said my blood was normal so there could NOT be anything seriously wrong with me. I was NOT dying and they are there to make sure there is not acute crises and life threatening problem and if not, go home and call your doctor.  I asked him a simple question. I asked if a patient had Ulcerative Colitis or Crohns disease, would it have shown signs in the blood? He said yes! I would have high inflammatory markers, I would have other high stuff giving clues in my blood so absolutely. I then asked if anything would have shown on CT scans and YES. He went into a discussion on stranding and some kind of something that would show on the CT scan once again giving clues as to the condition.

I said thank you. By the way, when I had moderate to severe colitis, my blood work was completely NORMAL. No inflammation, no nothing showing in my blood and guess what else? My CT scan was normal as well. I said my doctor had decided to humor me and do a scope since I was bleeding out my backside. My primary doctor said she seriously fell out of her chair when the results came in. I had ulcerative colitis with normal labs and testing. It was right there in my colon,  on the scope, I had it.

So then I told him my point in telling you this is that you assume we are all horses and that there are hardly ever zebras in the room but guess what, I am a zebra. I am one of those patients who do NOT present as typical and do not react to meds as normal, I am DIFFERENT. I am a ZEBRA.

And I knew, watching his face that the walls were up, the doors were closed, even when his eyes lit up at the use of my word, zebra, but he had shut down, made up his mind and refused to be persuaded or budged from it. He is right and I am wrong and will not admit otherwise.

I was extremely angry. A waste of my time, a hole in my arm, body hurting and I will once again be left with no answers. I got my pain meds. It did NOT take away the pain from my side and hip. It did take the edge off. Xray done, by the way only two were ordered and not of the part where the pain was actually located and not of my abdomen, nothing there, no inquiry.

PA Jarod O came back and he brought his side kick. A female with a flat straight irritated face, annoyed that she must accompany him, wasting her time to deal with little old me who is just wasting their own time there. She told me my xray revealed a hip effusion. I had fluid on my hip. “Probably from arthritis.” I had been on bed rest for a while and I had no injury but I did have a fever. It could be an infection, there could be more going on but they simply would not look. No mention of my abdominal pain.

I looked over at PA Jarod O and simply said, “By the way, I did not CHOSE to come here. I did NOT come here to waste time of get testing simply early, I was ORDERED to come here by the doctor at quick care. So do not ASSUME that I was simply there to waste his time.” They left.

He came back with a different tone but still would not budge from his stance and was sending me home. I told him he needed to remember what I am saying to him for his future patients. We are not all horses and if I can help one person to get real care, it would almost be worth it. Almost. My kids need me. We argued for about five minutes, though politely, him looking to my husband when he could not get me to relent and he would not relent as well.  We were discharged and the pain was just as intense as when I arrived.

I felt so at a loss. I called the emergency line for my pain management doctor and spoke to someone new. He was appalled by what took place but really, there was nothing he could do other than grant me permission to take an extra pain pill but nothing to figure out the dilemma I was in. I thanked him for letting me vent. I took an extra pill, a hot bath, and put essential oils on my hip and stomach and butt and laid down. The pain finally relented.

I awoke this morning, pain still in my side and abdomen, bearable in my hip though worse than my normal, and I saw blood when I went to the bathroom. No worries, that’s all in my head too. He never did address the abdominal pain I was there complaining about. Maybe a burst cyst? Who knows, he never looked, he never bothered to LISTEN to me. Guess it’s good it didn’t burst and cause deathly bleeding though it would have been worth it if I was saved in the end, just to rub it in his condescending he’s right I’m wrong god complex face. Yes, it would have been worth seeing that. Though in the end, he’d probably never admit that he was wrong…..

 

Update:  Still searching for answers. Pain had receded just to flare right back up on me.  Hip MRI shows some bone inflammation in the femoral neck so now I’m waiting on orthopedic to call me back. Still have the labral tears but one now has a cyst on it. Still have the bone marrow edema near my SI joints as well.  Yup, painful stuff but nope, nothing to see and no pain med help either…  I’d never increased my pain meds in going on two years (?) and have not flat out asked for it until today. And today, I was shown why I never asked. I was given a steroid script. A drug on my do not take list. Pain be damned…

 

My Life’s Purpose

I often wonder what my purpose in life is. I believe in God. I do. I have no doubt about Him but I have been blessed early to have known Him and have felt Him and have experienced Him beyond just educational material given to me. I have felt His presence. I have had unexplainable moments in my life. I have been touched by Him.

But what is my purpose? Why is there so much suffering in this life? Even through all the beautiful moments in this world, why can life be so damn cruel? My life was, by no means, normal growing up. I didn’t have a loving father and mother who raised me to adulthood, watching out and caring for me. But I did have God. I did have his protection through the storms and chaos that ruled my world.

I know I haven’t made the best choices starting out but I have done my best in most things. I’ve certainly given much love to my own children, shielding them from the pain and suffering that I had endured. They have two parents that love them dearly, they have all their needs met. They are loved. They are fought for and probably very spoiled. They know we love them.

You either grow up to perpetuate the same cycles upon your children or you do the opposite. I did the opposite. Never did I want them to experience different dads, abuse, neglect, or coldness. Never did I want them on the streets looking for love and someone to understand them. Never did I want to repeat the vicious cycle my own mother repeated with me and my brothers growing up. It stopped with me. And it stopped. .

I have been married only once, still in love with the man who stole my heart and made me his and gave me his children and loved me and adored me. I do not doubt his love for me or our children. We are loved. We are taken care of. We are provided for. We were blessed in that regard. Truly blessed.

The thought of dying has and leaving my family destroys me inside. Why must life be so cruel? My children cling to me. My children are attached at the hip, a hip I never want severed from them. Funny it’s my hip that hurts me most.

I want my children to be independent, self sufficient, confident, loved, and able to navigate this world on their own one day. I want them happy. I do not care if they are famous, if they are rich, if they are extinguished educated and white collar. I only want them satisfied and fulfilled in whatever makes them happy in life. Whether that be working at a cannabis (insert laugh face here) shop or a fashion designer, store clerk, or living on social security if needed. I only want them happy, content, and self supporting.

I want them to give of themselves to others, to be kind, and caring, compassionate. To love fully and to experience joys in life. I do not want them beaten down, demolished, unhappy, and overtaken by the pains in this world. I do not want to die and be taken from them, destroying them and forever affecting their course in life. I do not want to be responsible for their pain.

What is my purpose? What is the point of surviving all that I did at a young age, to rise above, to break the cycle, to dig my way out of the existence given to me only to suffer from chronic pain, health issues so many that slowly steal my life away. What is my purpose? Did I waste what was given to me? Is it my fault? Did I chose the wrong path, not give enough of myself or do the right things?

 

To be continued…

 

Death…the process of..

Death is chasing me. I feel it, breathing down my neck, slowing taking away pieces of me a little at a time, unseen but felt in the recesses of my mind as my body feels broken, weak, chewed up and spit out and a tangled web of pain, fatigue, weird sensations that are unexplained and sucking out my energy and leaving me feeling hollow inside. My body is dying and I feel it’s process.

I have so many conditions, problems, syndromes, and disorders. My life taken over by all of these issues until they are the center focus, forcing my attention away from living, my kids, my husband, my life. I can not think away the pain. I cannot relax my body and hope my central nervous system will quit firing and finally calm itself, easing the pain that consumes me. Interestingly enough, when I relax my body fully, the pain in my hips get worse. The pressure intense. The opposite of relaxing and alleviating some of the pain.

I am not normal, I never have been. My body is not like most people, I don’t present like the text books teach and I don’t react to things like most people do. My body is different and that makes me a zebra among the horses and the problem is that doctors often forget that zebras exist at all. They don’t know what to do with me, how to explain me or my problems so they simply blame me for them instead.

I have ME/CFS, Fibro, IC, UC, migraines, mitral valve prolapse, tachycardia, POTS, some other weird thing with the top chamber of my heart after exertion, gastritis, and many more issues both seen and unseen plaguing my existence and embarrassing me to deal with so much and have to explain it to each new doctor I see causing the light to go out in their eyes and the walls to rise as they immediately shut down and think I’m too much, too much for them to handle and that my mind must be in constant state of anxiety or depression or what have you, causing somatic symptom disorder and that I must be overstating things and allowing my mind to create more issues than there are. An overly anxious female probably assuming some kind of conversion disorder or seeking attention, drug seeking, an unexplained pain in the ass for doctors to deal with.

But I am dying. I feel it. I know my body and my gut is screaming at me to find it and explain it and fix it but how do you make them listen when so many tests come out normal or when they do find something it’s an isolated finding and they leave me with no answers, no explanation, no understanding of the cause of it or if it could be what is taking over my life due to the pain of it.

The biggest problem I’m finding with medicine, beyond the female bias, is that they piecemeal everything. A specialist for this a specialist for that, seeing tiny pieces of me and completely missing the whole. The complete picture, the pieces of the puzzle that might very well fit together and allow the picture to be understood, seen, and explained… Where are the whole body doctors who make sure nothing is missed, left behind, or forgotten? Where are the puzzle solvers?

I sit here waiting on the medical community to do their jobs and figure this out. Why do I have to spoon feed them every single bite? Why do I have to google my own symptoms and point out all the possibilities and ask for specific tests, doctors, whatever I can to get to the bottom of the feeling like death has got me in it’s clutches and is pulling me down.

Weight loss. Over 10% of my body weight in a few months. Muscle atrophy which happened very quickly. Bloated when I eat. Lack of appetite, nausea. Night sweats, though not constant. A low grade fever that comes and goes for over a year. Swollen lymph nodes in three separate locations both left and right side. A chronic cough going on over one year now. Easy bruising that comes and goes. Bleeding sore gums that come and go. Sound like cancer to you? I know it does to me. And yet, I still fight to be heard. To be taken seriously. To be examined. Wasting my time, my life, my hopeful recovery. Maybe its all in my head. Maybe I am an overly anxious female. Or maybe I have cancer. Maybe I’m dying. Maybe my body is telling me something, my gut, intuition, and they are simply ignoring my cry.

I feel death reaching for me. I feel my body dying. Slowly. I feel it. Like being poisoned. And this slow gradual process has just sped up. Like a train gaining speed, it’s approach getting faster now and I feel it more than ever before. Will they listen before it’s too late? Will they heed my call? I feel like I’m rotting from within. All I can think about are my children. Please don’t take me too soon. Please don’t take their rock from them. Grant me healing and life. I want to live.

My life might change today. This might finally be the day I know…

Nobody…

Nobody is a pain in the ass. I am honestly starting to believe that Nobody doesn’t like me. Nobody offers to take my daughter to school when I’m hurting, lost in my own thoughts, too tired to move… Nobody doesn’t offer to pick her up when I’m in, for once, trying to cook a meal because I have to start soooo early, while I have the energy, the ability, to get one prepared. Nobody doesn’t offer to pick her up when I’m laid up on the couch and exhausted and it hurts to walk and I just don’t have it in me!!

Nobody doesn’t take over when I announce that I’m not adulting today. Nobody doesn’t offer to cook when it’s my turn and I am done and spent and it’s not happening. Though my hubby does. My hubby offers. My hubby gets up at 4am every week day to go to work, coming home around 5:30, tired, exhausted, running on lack of sleep and usually hungry but fatigued from taking over my responsibilities on top of his own. We often eat take out. Poor choice for those who should really eat healthy.  But you do what you can.

I was sooooooo proud of my son the other day. I was spent, exhausted, in severe pain, my hips killing me and my legs refusing to carry me without their loud complaints. It was grandma’s turn to cook. We discussed it the day prior, she makes the sausage meal so we use up the peppers before they expire, and then I’ll cook the chicken and dumpling meal after that, so the rest of the veggies get used. We talked about it. We did. 6:20pm, hubby is home but about to be running to the store and nothing is cooking. No sounds from the kitchen, no smells through out the house, unless you want to talk about the dogs, but that’s not what this blog post is about.

I asked if hubby will once again, pick something up while he is at the store. A rotisserie chicken, some bread, ( I will NOT give up my bread), and a salad. I know we had that last week, but hey, it’s something.  I asked my son to start the water to boil for the rice that we usually have with it and he did. Hubby called. They’re out of rotisserie chicken…

The tension followed, the evil word, once again being discussed, brought to the forefront, focused on, admitting to our guilt, our in-competencies, just another thing that shouts ‘FAILURE’ to my psyche. Dinner is the evil word in our household as it’s the one thing I simply just cannot keep up with as lassitude drags me down and my legs hurt to stand on, and my arms are fatigued, my brain mush, and dinner just simply does not happen on a happy little schedule, meeting our family’s needs as normal people who live in this world. Who cares about the housework, the disorganized chaos, the dust, the dirt, the clutter… those don’t NEED to be done each day, you don’t NEED it to survive, to live, to adult, to parent, to keep up with, it is just simply not necessary as dinner is.

My son, I’m so proud, his mild autism severely affecting him especially under times of stress, of pressure, of duty. My son simply offered to cook the pepper meal. He offered to take over, to take initiative and simply get it done, providing for the family, all his years of 14, growing up, stepping into his own, even with his depression, his anxiety, and his autism, clutching his soul, tormenting him, controlling him, and keeping him down, he offered to cook.

My mind immediately worries. Will this cause too much stress, will he put too much pressure on himself, melt down, make messes, get frustrated, yell…. He saw my unspoken worry etched on my face and I said no. I’ll do it. I was in the bath, warming my muscles, trying desperately to reduce the pain as my meds were not enough, never enough when I’m in such a state.  I threw a towel on, I got out of the tub and simply told my hubby, the phone to my ear, that it will be handled, come home, don’t worry about, it will be done. My son, seeing my determination through the pain simply refused to allow me to do it. He said he’d ask grandma to help him. Me secretly relieved, knowing this would remind her that her task was undone and it was her turn to cook as we’d discussed and planned the day before but she just did not remember the conversation, didn’t ask, didn’t think but she did agree to help him.

My son got overwhelmed. I was just spent, didn’t care, didn’t worry anymore, just crawled into bed, undressed, the water left in the tub, and I just laid there, resting my legs, letting go and putting it out of my mind, spent. My son shewed my mother from the kitchen, her presence so blase faire, causing too much chaos for my son so he pushed her out, prepped the meal, with his friend in tow and started cooking. This, I found out later when I finally emerged from my room to the smells of food simmering in the kitchen wafting to my nose and it smelled good. He told me he burnt the onions. No meltdown, no complaint, just a statement as he carried on and told me how he cooked it, which was different from how I cook it but I let it go, didn’t care, didn’t intervene, just allowed it.

Hubby came home, the table was set, dinner was delivered and announced and everyone joined together at the table to eat but my pain was too much. I crawled to the couch and laid down, starring up at the ceiling and listening to the sounds of my family joined together in the dining room to eat the evil word. I heard my mother call out to me but I was too exhausted to yell back. I simply laid there, silent, lost in thought until the evil word was done and my son started cleaning up, not asked, not expected, just doing and I couldn’t have been more proud of him in that moment.

It is a rule that when someone cooks, the rest clean up. I asked my son to make me a plate but hubby had beat him to it so I asked him to bring it to me and I laid there, plate on my chest and slowly took bites of it and it was delicious. It was fabulous. It was better than my own. Again, I was so proud.  Somebody answered that day. Somebody was listening. But Nobody washed the counters, the stove, a task often forgotten after the evil words are cooked, the dishes cleaned, the food put away…. My husband tired after a long day, moments from dropping into bed and starting all over again.

Nobody visits me quite often. My husband tries and does a lot, more than he should, my daughter cleans my own personal bathroom without prompting, my little tornado, her messes left in her wake, she tries. She helps where she can, her little 9 year old mind, my social butterfly, chatting for hours with friends, planning, scheming, playing on her computer, terrified of losing me.

My dog is matted, overgrown fur twisting itself and clumping up, she needs to be shaved. Grooming her is not cheap, she’s over 80 pounds with tons of curly hair leaving little masses of mess throughout her body. She’s difficult to brush. I finally have her set up to shave her body and cool her down and probably make her feel better but it’s weeks away and I don’t want to travel far so we’ll wait. But I finally got scheduled to see a pulmonologist and unfortunately it’s scheduled the same day after my appointment begins so once again, she will have to wait because Nobody has appeared by my side and has not offered to take her for me.

My own failings in asking for help, hold me back. My own failings since being in control through most of my life, handling things, taking initiative and micromanaging everything around me but now taken from me have left me struggling with Nobody, a constant companion reminding me that I am alone, slowing down my life, adding to my lists and leaving me drowning in things unfinished, undone, mocking me, torturing my mind, and making me feel like such a failure with a useless body struggling with my frustrations of wanting to accomplish but left unable, slow, and useless. Nobody doesn’t care. Nobody doesn’t take control or offer to help, take over and manage what needs to be done and maintaining the balance of living. Nobody simply reminds me of my inadequacies, my in-competencies, driving a wedge in my family, creating chaos in my surroundings and highlighting my illnesses with so much left undone.

Nobody is my constant companion, my silent reminders, my aching frustrations as I seek to find Somebody. Somebody costs money. Somebody does not work for free, does not offer to take over or manage my life or selflessly give of themselves to help me navigate this world of invisible illnesses and stay afloat. Somebody must be sought after, paid for, faught for and pursued because nobody is willing to give so freely of themselves.

I have had to fight for my healthcare, my tests, my appointments, for help, answers, understanding but am still left with Nobody, my constant companion, who doesn’t lift a finger without someone to do it for them. For three years I struggled for help with my hip pain, 3 years of suffering with no answers, begging for imaging to find out WHY my hips hurt so bad, my legs refusing to hold me up without pain and fatigue, muscle spasms, twitches, faciculations, vibrations, and oh the pain. The pain can be so excruciating, it feels like my ligaments in my groin are being twisted and ripped apart. The top of my femur bones, aching and bruised inside, hurting to simply brush the exterior of them, the deep ache inside like my bones are rotting away and dying. My tail bone feeling crushed, the pressure, the pain, my iliac wings and sacrum being clutched on both sides and pulled apart taking my muscles and ligaments with them. This is not fibro. This is not ME/CFS. This is something different. This is a new pain, struggling for 3 years before I finally got my doctor to agree to an MRI. Finally, finally! MRI later and it was discovered that I have bilateral labral tears in both hips and subcondral edema in my sacrum and iliac wings.

I thought I finally had the answers to what plagues me. “There’s nothing mechanically wrong with you, push through it….” I was sent to orthopedics. The doctor was sincere. He listened, he understood, he knew about things most civilian doctors don’t. He knew about military exposures and gulf war illness and that some of us didn’t make it out in one piece inside. You can’t see it, the invisible wounds, not of war, but of our service, the overload of vaccinations, the possible secret experiments, the unanswered question of why so many of us suffer alike. The probably cause of my fibro, my ME/CFS, my IC, IBS, migraines, so many issues that slaughtered my body from within, unseen, not understood, and taken for granted, judged, pushed aside and ignored. But in the end, my orthopedic doctor does not work on labral tears. So he sent me to someone else within the office and another wait, another appointment, more frustration.

The new doctor thought I was an anomaly. Severe joint pain not replicated upon exam. I don’t make sense, I don’t follow the typical patterns of disease. Not enough arthritis to be causing the pain, The pain too much to be from the labral tears. Having no idea why my bone marrow is inflamed. Follow up with rheumatology…. See a neurologist….  I’ve been there, don’t that, got the t-shirt, cleared of their typical understanding of disease, I do not fit any of their neatly packaged conditions and they do not think outside the box. A zebra among horses and once again, they have forgotten the zebras among them. I am too ill to have the surgery to repair my labral tears and I react too badly to steroids to take the shots. Back to physical therapy…. but this time knowing, there IS a mechanical issue going on.

I LOVED my physical therapist. She may not have understood ME/CFS but she did not push me, force me into a disproven and harmful path of graded exercise. She simply worked on stretching, slowly working to improve the tightness in my limbs. She discovered my butt muscles were not activating. More questions. She was great. I would have stuck with her if winter didn’t come and take me down, flaring up my body pain and fatigue and leaving me housebound once again beyond that of my normal. After many months but with some minor improvements, too many complications in my life, I put PT on hold.

My mother was hit with divorce papers. Nearly 18 years of loving a man to have him simply push her away, find someone new, and then think he could simply walk without paying for it. My mother has been pampered nearly 18 years. Don’t work, don’t push yourself, be dependent, be the wife who stays home and leans on her man. She didn’t even remember how to fill her tank with gas. She also was hit with vertigo, a fall, a hematoma on her brain, and spinning eyes, dizziness, and a slow recovery. She is better now, but it will come out of nowhere, spinning her world around her and keeping her from certain movements without paying the price.  She had taken her social security early, paid the penalty since her husband was going to take care of her, retire in style and she was set for life. $550 measly dollars left for her to live on. She will be fighting for alimony, heavily contested with an attorney that feels as incompetent as my body. So we moved. We moved into a larger and more expensive home to make room for my mother. She wouldn’t have survived it financially on her own. HUD applications closed due to too many applicants and not enough housing. We gave up our forever home, packed up our stuff, drained our savings, and moved. That move felt like it killed me.

Constant cleaning before showings, leaving my home, back and forth, the pressure, the pain, the anxiety. Living on my pain meds to get me through each day, to keep pushing, keep reaching, keep killing my body slowly and painfully, but we did it. I survived. I am paying the price of that move. My ME/CFS flared up, my limbs heavy, my body beaten, a disorganized clutter of things not put away, the list growing, the duties behind and ever filling up the pages of my to do list but my body has quit. Forced rest, reading books to keep me from moving and allow my body to heal as pacing was thrown out the window to accomplish our goals and it has taken it’s toll on me, chewing me up and spitting me out, raw, broken, bruised, and just utterly exhausted, spent, done, waiting to recover enough to even take care of myself and I think I pushed too hard, passed the point of no return, the volume turned up on the pain, the fatigue, the brain fog and now my brain is just as bad as my body, spaced out, confused, overwhelmed and drained from even simple mental exertion where even making simple phone calls are overwhelming to me. I’m ready for a caregiver now. It’s constant. It’s not a roller coaster of good days and bad days, and a little here a little there, it’s a endless ride of NO, can’t do it, can’t function, can’t shower, don’t even take care of myself and I am left with Nobody.

Nobody to pick up the pieces. Nobody to care for ME. Nobody to take the initiative and get things handled and pay back for all the Somebody who so selfless gave of herself without cost, without prompting, but out of love and care and compassion even when my emotions seem cold, my feelings blank, still so freely gave as Somebody but I got Nobody in return.

It is very very very difficult for me to ask for help. Type A, take control, independent, focus driven, micro-manager and do it myself ME. But ME has turned into a severely flared up ME/CFS. I was a somebody but have been reduced to a Nobody and Nobody does not want to help me.

In 2015 I lost my appetite. I started having increased esophageal spasms.  I’ve had them before but they were coming on much more frequently and I was beginning to choke on my own saliva. There were times where I felt a lump in my throat, difficulty swallowing and choking on food and medicine.  This lump was new. The loss of appetite was new. I was not on any new meds. I did not change my diet. There was nothing different going on to cause this issue. I had an upper GI with a new doctor and she showed me that I had blood in my stomach and a ring in my esophagus, it looked like I had Eosinophilic esophagitis but the biopsy came back without answers. She never told me why I had blood in my stomach, she simply shrugged her shoulders and left me to my own devices. More questions.

The lump feeling came and went and eventually left me and rarely makes it’s appearance now. I still choke on my own phlegm, on liquids, occasionally foods. My appetite took a nose dive in 2018. Food did not interest me. I had to force myself to eat. Forgetting the feeling of hunger as it disappeared on me. I developed stomach pains, some I have experienced for 20 years, simply told it’s gastritis but no drugs have ever touched the pain, relieved the trapped gas that doubles me over and leaves me laid up, the only way to relieve the pain, on my back, my side, and waiting. I would get these pains every month, sometimes weekly, sometimes daily, always coming on after 4:30 in the evening and lasting several hours but this time it was different. I began to awake with the pain. They became so constant as to never leave and I was doubled over for so long so I ordered another scan and went back to my original gastrologist, refusing to see the lady I saw last who left me with unanswered questions.

They ordered a scope and the scope was done. He didn’t see the ring in my esophagus. He didn’t see any blood in my stomach. He did see inflammation. The biopsies did not reveal anything more.  He was appalled at my weight loss. I had seen him four months prior at 124 pounds. By that point I had lost over 10 pounds during the preceding year but in that four month period between visits, I lost around 15 more pounds. I was 109 when I went for my upper gi. He was angry. He asked me if Somebody was looking into this and I told him I was left with Nobody.  I was given a liquid med to take 4 times a day for a month. So far, it’s helping though I still feel the pain at times.

I had told my primary care doctor that I was losing weight. They assumed it was due to my lack of appetite. I told my primary VA doctor about it as well. She wanted me to try the keto diet. No answers. Nobody reared it’s ugly head once again.  Back in July of 2018, on a flight home from visiting my brother, on the plane, I felt a lump in my groin. One of my lymph nodes was swollen and I could see it through my skin. I went to my doctor and showed it to her. She looked at my legs and said it was due to a tiny nick on my leg from shaving. I’ve lived in my body for 40 years. 40 years of knowing every inch, every feeling, every piece of me in a way that Nobody else will understand. This was not due to shaving or a tiny little, nearly healed up, nick on my leg. She told me to let her know if it’s not gone within two weeks. I asked her if I should let her know if it gets bigger or if there are any changes and she said yes.

The following week I told her that I have more glands swelling up. I went to see her. She felt the glands and told me that it was because I’ve lost too much weight….  Nobody showed up once again. The matrix of my mind was colliding together and swirling with anger and frustration but Nobody would listen.  I had seen her months before for bruising and bleeding gums. She assumed it was due to a supplement I had been on a month prior. I told her my upper left abdomen had been bothering me off and on for a while and she said if it continued, we’d get some imaging of my spleen. This was in March of 2018. The bruising seems to come and go as does the bleeding gums.  More questions.

I saw her in June for a cough that wouldn’t go away. I had had it since getting sick earlier in the year. I was fevered but not sick. I had been fevered almost every visit I had that year. Nobody noticed. I saw her in July for muscle spasms that wouldn’t quit in my left leg at the upper thigh. I was getting fasiculations, twitches all over my back side and left leg and that damn spasm that wouldn’t go away. I had restless body that chewed me up and spit me onto the floor, leaving me reaching for my Xanax, something I HATE taking during the day time. It works great as a muscle relaxer though. Normal muscle relaxers do nothing for me. I was also, still fevered….

She humored me and ordered a bone scan. I wanted to have it done on my whole body and be done with it. I got it just on my hip.  A small delayed intense uptake of the radioactive material lit up in my soft tissue on the left side. I know, because he had me wipe the area down multiple times as he was confused as to what it was from. The report stated it was on my right side…. they blamed it on a bladder diverticulm they said was faintly seen on a previous MRI. The incompetency is mind blowing. Off to the urologist to inquire about this diverticulm on my LEFT side and she absolutely refused that I had one.  Two scopes prior and she said she would have definitely seen it if it were there. More questions.

A complex cyst in my left ovary showed up on a CT scan of my abdomen when I went to the ER to do frozen stomach muscles. I had no urge to go to the bathroom for a bowel movement in a week and I was concerned. They blamed it on my pain meds and gave me a shot in the stomach. I’ll never do that again. I still have issues going sometimes, different from normal constipation. I do have an enlarged bartholin gland on my right side and I was told it would not interfere with my movements but I’ve had to push it aside at times to go. The right gland never bothered me over these 20 years but as soon as the left one was finally removed once and for all, the right one swelled up. I’m dreading the surgery and have put it off as it’s not infected and the gyn is not concerned about it. He did agree to completely remove the gland when I’m ready. The cyst apparently resolved on its own but I still get pain on my left side. He said he’d do exploratory surgery if needed. At least Somebody showed up. No answers were given as to the spot on my bone scan.  Overly….Anxious…Female….

In August I saw her for the swollen glands. At that point I had had them for a week and a half. You know her answer to that one. I was fevered at that time. I saw her in November for my yearly follow up. There is no uploaded record of that. I saw my primary VA doctor in December for my yearly follow up with her and told her about my lymph nodes, my weight loss, my frustrations.  Keto diet…

I saw my primary doctor again in January of 2019. I was FED UP. I reminded her of my swollen glands, now on both sides of my groin, behind my neck and intermittently under each arm pit. I reminded her of my weight loss, my chronic cough, my fatigue, a new sleepy fatigue that is not typical for me as my ME/CFS is muscle fatigue, I’m an insomniac type, not a sleeper type. I told her about my stomach becoming full so quickly and bloated so often. I told her I was frustrated and feeling like I’m dying, being ignored, and not being checked out properly. She told me she had followed protocol and did not do anything wrong.  She ‘supposed’ she could send me to hematology oncology as the next step in the process. She thought she had ordered a whole body bone scan but I reminded her it was only on my hips.  I showed her a newly found lump in my right breast and she found the spot unusual since it was so near the surface. I told her about the insistent itching in my right breast and intermittent itching throughout my body. She ordered an MRI of my breast and a CT scan of my chest due to the cough.  There was no uploaded record of that visit. Who knows if I had a fever then. I don’t have a fever now.

MRI came back as normal. No breast lump was seen in my left breast. My prior lump found in 2013 was not mentioned. The new lump was not seen. My husband can see it. It’s still there sitting under my nipple, poking out through my skin. My right breast showed “Stable enhancing focus in the posterior lateral breast consistent with benign proliferative change.” I was told it was normal…  Come back in a year. Nobody has showed up, once again.

My CT scan was shocking to me. I was diagnosed with emphysema. They found 4 nodules in my lungs. One just a granduloma but 3 were not. One in my upper right lobe and two in my left lower lobe. I have an appointment with my new pulmonologist on the 26th. First pulmonary testing then the doctor for staging of emphysema and how to proceed in regards to the nodules. I’m assuming there will be follow up scans to see if they grow, the threat of lung cancer hanging over my shoulders. I have to quit smoking.  Somebody showed up.

I had quit smoking in 2014. I used vaping as my method of choice and it was the easiest quit I ever did. I was non smoking for a year and a half, perfectly proud of myself and elated that I had finally done it. I had quit!! But then I developed ulcerative colitis and it ruled not only my mornings but my evenings as well. Confined to the small space in my bathroom, constantly running to the toilet, not able to leave the house often and having to know immediately of the bathrooms location at any place I visited. This was before my last ME/CFS flare up. I wonder if this was my trigger. I had been doing fairly well for a while. Fibro reared it’s ugly head in 2013 but that was manageable at the time.  My ulcerative colitis was not.

I had been happy, truly happy. My husband retired from the Air Force, we moved to Idaho to raise our kids, I was feeling good for the first time in a long time. I joined a gym! I started preparing to law school, buying books, learning about the LSAT, getting ready to test my fate at hubby’s transferred GI bill.  Things were good. I was happy, chasing my kids around the house, playing tag, hide and seek, going out, living life. TRULY LIVING!!  Fibro creeped up, I pushed it down, continued to work out, quit smoking, and UC knocked me to my knees.  I got back up. I waiting for my morning routine of playing toilet games subsided, usually by 11 am, then off to the gym! Yes, a few times my UC pulled me back to the toilet at the YMCA, but I kept going. I didn’t quit. I WANTED to be in shape, healthy, tightening my muscles before old age tried to take them from me. But I was bleeding. A lot. The blood loss was depleting my potassium and affecting my heart. I developed severe shin splits and could no longer run on the track so I fought back and used the elliptical, easier on my shins and kept pushing.  Somebody was on their A-game, refusing to go down without a fight. And I fought. But it won. Dizziness took over and chest pain knocked me down. I gave up the gym… but at that point, I felt it was a temporary reprieve.

I took potassium tablets and built my levels up and my chest pain got better, but my blood loss and toilet visits were taking a toll on me. I had discovered I was allergic to the first round of drugs they give for UC. They are not only in the sulfa family but the anti-inflammatory family as well. The second line were steroids. I already knew that would not end well. The final class of meds were biologics. Chemotherapy type drugs. I have an intense fear of chemo. I am so highly sensitive to medications that I feel deep down they would ravish my body and kill me. I read about the side effects, one being a chance at getting cancer. Four different types of cancer were a possible rare side effect to the drug. Knowing my luck with meds and rare side effects, I felt deep down, that would be me. I entered a study with 23andme for a free DNA test, ancestry report and decided to dig into my family history and look for my biological roots. It was fascinating. I was enthralled with all I learned and it was completely worth it to me. I downloaded my DNA to some health websites and learned all about the complexities of DNA and genetics. I discovered a significantly rare double metabolic mutation on my CYP2C9 which is the pathway that metabolizes blood thinners and anti-inflammatories. Justice, liberation, an answer in all the chaos, finally something to retort when assumed I’m a drug seeker and deny the ability to take anti-inflammatories. I felt vindicated.  It also suggested that the medicine they wanted to try me on for ulcerative colitis might very well cause the significant rare side effects I wanted to avoid…

So I researched alternative solutions. Anything that would help put my body in remission and fight against this awful disease that I wouldn’t wish on my worst enemy. Nothing worked. All the different diets, supplements, possible solutions to my problems were a dead end. I discovered that cigarettes might very well be the answer I was seeking.  Weirdly, absolutely devastatingly oddly, smoking might put me in remission. Apparently it creates some kind of barrier in the intestines that protects your body from the ulcerations. Success stories were out there. I talked to my gastrologist. He wasn’t happy but admitted he has a few clients that went back to smoking and reached remission. After all that success and elation at quitting and here I was finding a medical reason to go back to it. What a conundrum. One week later, I was in remission. I decided to pass the buck down the road. Never did I realize the road was a short one. And here I sit, writing this, knowing my UC is gone, my colon is cleared and now I have to quit again. And this time without the vaping that made it so easy. The thought of reliving that nightmare of UC hanging over me. Nobody is available to help me with this one. And I don’t blame Nobody. Not for this.

So now I sit worrying about lung cancer, emphysema, and my ulcerative colitis coming back. I have to quit. I don’t have much choice. I don’t know what stage of emphysema I’m in but even if it’s just “a touch of emphysema”, I know that if I don’t quit, it can quickly escalate. My kids need me. I desperately worry that Nobody will show up and be a constant companion to my children if I am taken from them.

I also have the hematology oncology referral to contend with and never in my life have I EVER fought so hard to be seen as I have with this office. New patient visits go through Sandra. Sandra doesn’t want to schedule the appointment. She says I need authorization through my insurance. With much irritation, I told her I was looking at my approved referral and authorization as we spoke. She said these appointments were very expensive. (Insert astonished, are you not listening to me face right here). I TOLD HER  WAS APPROVED.  She refused to schedule the appointment. She needed more information. Apparently the diagnostic code on my ‘suddenly appearing in her hands’ referral only mentioned weight loss and that was not a reason to be seen. I told her all my symptoms and that it’s the swollen lymph nodes in addition to the weight loss as the reason for the visit. She said the referral needed to be changed. So I called my doctor. New referral was in and approved the very next day. It simply stated LOCALIZED lymphadenopathy. I told her the doctor was wrong, it was generalized after calling and once again failing to be scheduled for an appointment.  What the hell is wrong with these people? Seems Nobody showed up to the table or read my record or got it right. She said I needed my records faxed over first. She asked if I had been diagnosed with cancer. I’m speechless. Is that not what I’m trying to be seen for to get ruled out?  Is that not THEIR JOB? She asked if my lymph node had been biopsied. She wanted the MRI results faxed from my breast lump.  So I waited.

The third phone call and once again Sandra needed more information.  I lost my shit. I told her I was tired of this game and to simply schedule the damn appointment. They were already booked out about a week or two. She refused. I asked her to tell me IN SPECIFIC everything she needs from me to be seen. She wanted the last years worth of labs, my first doctors visit with my primary and the last two doctors visit notes minus the very last one which they already had. I told her she would have them and immediately called my doctors office to tell them what to send.

I waited. I gave it the weekend plus three days. I went to my first Palliative Care appointment. They said they’d call the hematologist office to help it along.  I called the office on Thursday, sufficient time to get all they needed.  She refused to set the appointment. Now she’s saying that there are no images or biopsies of my swollen lymph nodes. (Insert massive angry face here). I unloaded. I unloaded quite a bit. I told her their names are taken, the notes are written and God forbid I have cancer. The pain is killing me in my hips and it is their job to get the imaging to get the biopsies and to rule out whatever the hell is or isn’t going on! Do I have cancer!!!??  I’m sure there was a lot more unwritten but spoken to her in that moment. An hour later I get a call on my phone and it is her. I have an appointment. I now sit and wonder what it was that lit a fire under her and the nurses ass to get me scheduled. The swollen glands didn’t do it. The weight loss didn’t do it. Letting her know that it was over 10% of my body weight lost didn’t do it. The bloated stomach didn’t do it. The fatigue didn’t do it. I’m not sure if I mentioned the fevers. Nobody asked about the night sweats.  So what was it? Was it the excruciating hip pain? Or was it simply the threats? The threat that their names are taken down. The threats that they better hope I don’t have cancer while they sit idly by. The unveiled threats of a law suit that Nobody wants to deal with. So did it all come down to money? To tarnishing their name? To the fear of failing a patient who got lost in the shuffle and pushed aside, discarded, ignored, and disregarded from Somebody who threatened to fight back?

I had my first home physical therapy intake today. I told him of my frustrations, my symptoms, all that I am going through and he shook his head and shared his frustrations with the incompetency of some people sometimes. At least I felt understood. I felt heard and validated. I qualify for home therapy. I’m not sure how much it will accomplish with so much I have going on but it’s a start. It’s something.

So I sit wondering where this new road in life will take me, what revelations will be made and wonder why Nobody works so diligently to help me.

My mother-in-law will be moving down next month. She is overwhelmed by all her son is taking on. She won’t leave him to handle it alone. She will be the Somebody that he denies he needs, to help take some of the burden off of his shoulders. I know deep down, she’s not coming for me. She coming for her son. She’s his mother and she’s being a mother, protecting her own and stepping up to the plate to help.  Nobody does that for me. Nobody is there in the capacity that I need it, always reminding me that I am alone but for my husband and my kids, reaching out and doing what they can to lessen the burden while dealing with the loss of what was. The loss of their mother to function fully and be there for them in a physical way beyond knowing simply, that I love them.

 

 

 

 

Palliative Care

Tuesday will be my first appointment with Palliative care. I’m excited, nervous, overwhelmed and terrified all at once. I don’t know too many people who have utilized the program so I don’t have many experiences to draw from. I figured I’d blog about my own experience.

From what I understand, Palliative care is for those with an incurable illness that causes significant quality of life issues. Well, I have that. It should provide care to help with quality of living, social work, counseling, pain management, and community related needs.  It’s having someone monitor all of your issues and helps keep things organized. I hope.

I was told my first appointment will consist of me meeting a social worker and their pharmacist. I’m nervous, hopeful, and cautious. I’m in pain management and have a contract with my pain management doctor and I’m not sure if they take over that area or not. I guess I should call my pain management doctor and inform them?  It’s all confusing to me. I’ll wait and see how things go..

So today is the day. My brain is a mix of anxious thoughts, concerns, relief, nerves, and excitement rolled into one mass of mushiness. My medicines are all bagged up and ready to go. It’s required I bring them all. I’m not bringing my oxygen tank though it lists that as well. I currently use oxygen for migraines that are cluster like but I can’t imagine trying to lug that thing or rather hubby lug that thing along with all my meds, papers, and me in tow. So that will get left behind.

My husband has taken a half day off so he can attend the appointment with me. It asks for caretaker support to come along if possible and well, he’s it. I’m hoping down the road, once established and if it turns out to be what I’m hoping it will be, well, I’m hoping they’ll learn more about my illnesses and when they have a grasp of understanding as to what I suffer, then I’m hopeful they’ll send someone to my home to talk to my family. To help them truly understand what I am going through, how it affects me, the help I really need but am too afraid to ask.

To be continued….   (Will update after)

I’m not sure how I feel about the visit I had with palliative care. I was suppose to meet with a team of 4. My team. An NP, pharmacist, social worker and the doctor. The doctor was not in that day. Apparently he’s only in on Monday’s. I met with all three remaining members and discussed some of my issues. They asked me why I was there and what I hoped to gain. I didn’t want to focus on pain but in the end, I focused a lot on pain. They want the truth? The truth is that I’m hurting. Bad. When I hurt, it is not hard to dwell on the pain tearing me apart. If I can cover the pain, I am more able to attend to the other issues I need addressed.  After meeting with all 3 together, I was to meet with each one individually.

I met with the social worker first. She was really nice. She looked up resources in the community that may be available to me. She gave me information on counseling service and one or two that will come to the home. That’s what I’m looking for. That’s what I need!!  I need home care! Ultimately, it sets me back and flares me up each time I leave the house.  The prep, to shower (depending on when I showered last…), to change, to mentally prepare for leaving, the drive. I think the worst of it is sitting in another chair, table, place, that is not my own. I was at the palliative care office for over 2 hours. The day after my hip bones felt like they were being ripped apart, the pain was so intense. I need to start bringing my cushion when I leave the house, an added layer of support for my flesh-less tailbone and lack of butt muscles. They showed me one of the service dogs out for a visit. She offered pages of service providers that offer home aid such as bathing, cleaning, cooking, shopping, or simply to talk. It’s not awfully expensive but it’s not cheap but insurance won’t cover it so it’s an out of pocket expense. I can hire for one day a month, a week, a year, my choice, no contract but they do require a minimum 3 hour day per visit which works out to being $60 to $75 for each visit. (I really should re-apply for the family caregiver program through the VA).

I met next with the NP. She listened to my complaints. One of the issues she had was that I’m still seeking care and testing and not just focused on making me comfortable and accepting my condition. Problem is, I don’t know what else I have so I need to investigate the newer issues that had presented themselves that I’ve been chasing down for the last year or 5 with no answers and no doctor interested in exploring it. But that’s for another blog… She put in her plan to call the hematology office to implore them to set the appointment I’ve been fighting for for the last few weeks. She is suggesting to my primary care doctor to order the 2nd MRI on my hip so we can look for any changes or things missed that may have been too small to discover the first time around. (My hip pain has gotten worse on the left side). She put in a request for physical therapy to come to my home, so desperately needed and why I quit the last one. (I NEED home care. I have no excuses to quit when I don’t have to travel to them) My muscles are gone. They are atrophying at an alarming rate and my butt is the worst of it. I need help!!

I never did get to see the pharmacist for a solo visit. It didn’t matter to me in the end if he’s not taking over my med management.  I’m not sure if she is going to suggest more pain med help from my pain management doctor or not. I’m simply to afraid to ask her myself. (pain doc). She is looking into a nutritionist for me. She highly recommends I get counselling and I agree, I really do. It’s consuming my mind here recently and I’m feeling panicky and anxious and like death is chasing me and no one cares. We didn’t set up a follow up visit, but they’re my team now. I can see the doctor for help if needed. I can call if I need help with something. I hope just being apart of the team will help me in the end and I don’t regret asking for it but deep down inside I still hear the small voice calling out out to me, snickering, judging me, telling me I’m just an overly anxious female with symptoms that only exist in my chaotic mind.

With time, we’ll see if it was truly worth it. For now, I’m glad I went.