#i’m going for an mri on monday which i’m terrified of | Explore Tumblr Posts and Blogs

sergeant-angels-trashcan · 6 years

Text

so i decide to start taking care of myself this summer and my body does not appreciate this...at all.

i have been having vision problems for the past two weeks--my vision will go really spotty, i had some weird auras, and occasionally it will all just go dark, which is, you know, kind of terrifying. i thought it might have to do with the lightheadedness i was feeling starting at the beginning of the two weeks, and i figured if i could address the underlying cause of the lightheadedness (extreme muscle tension in my neck) the vision stuff would take care of itself

only it didn’t really, so on friday i scheduled an eye exam for today at one of those glasses places. i go in, and an hour later the doctor has informed me that i have an inflamed optic nerves (both eyes) and a small hemorrhage in the back of one of my eyes, which means that there’s something pushing on my optic nerves (you know, like cerebrospinal fluid, or, like, my brain), and that on a Sunday afternoon the fastest way to get this looked at is to send me to the ER.

Fortunately, I’d asked my mom to drive me (mostly because the eye place is next to an animal adoption place and i wanted to look at cats)

so we drive to the ER (not the closest one because they’re fucking terrible) and they do all the ER stuff like ask me why I’m there (I don’t fucking know) and what my pain level is (easily a seven but not why i’m there) at which point i realize that i’m...in a lot of pain, and i’m panicking

one of the things i realized about myself during the past week is that i have an incredibly skewed vision of what qualifies for me as pain. my boss sent me home on Wednesday because i was crying i hurt so much, but at no point did it register as pain to me, I considered it discomfort. my brain assumes that if i can still be upright or carry on a conversation, if it doesn’t feel like someone is jamming an ice pick into my brain, it’s not real pain. this becomes a problem when i realize that by those little hospital pain charts I’m at a nine but at no point did my body go “ow, this hurts, let’s fix it” my body has simply said “bitch, stop whining, you need the money”

so i’m in the ER waiting to get a CAT scan and realizing that there’s no way i can exist here for the next few hours because it feels like someone has jammed a knife in my low back, and every time i try to ease the pain, my neck gets tighter (thus making me more lightheaded and less mobile) and every time i try to ease the pain in my neck, i’m at an angle that pulls at my hips. at this point, when i look down i can feel it in my hip

(this is when i got a tylenol with codeine in it)

my CAT scan was completely normal which is great (I am slightly disappointed by this because it means i don’t have answers but I understand that this is the Wrong reaction), though i may have the beginning of some really long scary set of words that includes “tumor” but is supposedly very common, and I’ve been prescribed a medication that, should that be the problem, will hopefully take care of it and clear up the vision problems.

as I’m typing this out, I realize that I should probably be more freaked out by this but the ER doc prescribed me muscle relaxers--and since stress is making my neck get tight AF and (i’m trying to adjust the way i talk about this) making my neck HURT, i took one.

so i’m supposed to talk to my primary care doc and get scheduled for an MRI that will probably show nothing, and i will be back to having no answers about why or how exactly my body is broken. at this point, it feels like i’ve lost two weeks to chronic pain, which is really upsetting. i’m still having vision problems, my neck is all jacked up, and my low back/hip hurts so bad. i don’t know what to do.

i’m not scared, I’m just angry. I have a doctor’s appointment on monday with a plastic surgeon about getting a breast reduction (something i’ve hemmed and hawed about for YEARS). I’ve been looking forward to this appointment for a month, excited that i finally managed to be brave enough to talk to a doctor about it, excited that i might be able to reduce some of the neck and shoulder pain i have by getting a breast reduction, and now i don’t even know if the doctor will let me since who the fuck knows what’s going on with me?????

i’m upset because i finally try and take care of myself and address my physical needs, try to get to a place as pain-free as possible, and then this happens. I can’t look over my shoulder, I can barely turn my head, sitting and standing and laying down all hurt, I can’t see, the more I freak out the more my neck hurts, and I’m so worried about what my medical bills will look like, and I. HURT.

so. that’s how i spent today.

#chronic pain #hospitals #personal #like very personal #medical stuff

2 notes · View notes

psi-psina · 6 years

Text

A whine/life update:

I am STRESSED right now, there is way too much happening in my life? We are moving house in two weeks, I have signed a new lease with our new housemate and we are paying 8 weeks worth of rent this fortnight (last instalment for our current place + bond + two weeks advance for the new place - i want to die), we need to try to decide on what we want to keep and move into the new place with us and what is going over to WA, need to get a washing machine and probably a fridge, we need to find a third person to move into the place before I go to japan and Michelle leaves, my neurologist wants to change my medication and i’ve hd two fucking MRI’s this week and now I have tp go back in first thing on monday morning and have ANOTHER FUCKING MRI because she wants pictures of my spine with contrast and i swear to god i’m gonna just refuse to have any further spinal MRI’s after this until I show new symptoms that would indicate i actually have new fucking lesions on it because i had no new lesions on my LAST MRI so i’m pissed off to begin with that I had to have another one done again so soon. I’d rather chew my own fucking feet off. Being stuck up inside that machine for over an hour totally unable to move is fucking torture and you have no support for your neck or shoulders on the hideous board you have to lie on so after 15 minutes I’m in PAIN because i cannot lie on my back for that length of time without neck support. The reason I’m so cranky today is because I had to have the spinal MRI first thing in the morning, which I emerged from feeling like SHIT and it just carries over into the entire day. It was the same as last time when I had the brain + spine done together and was inside that fucking machine for over 80 minutes I got out and while feeling immensely relieved also just wanted to just fucking die for the rest of the day. 60 minutes really isn’t any better. Then they called me this afternoon and told me the doctor needs me to go back in the get more pictures of my spine with contrast. I almost started crying lmao. So I’m going back in first thing monday morning for the scans, then I’ve gotta go to the MS clinic to address the medicine situation after that which frankly I would rather just not deal with right now and I’m so anxious and stressed about everything right now it’s gonna make the appointment difficult. I know she’ll try to make me take lemtrada again despite our conversation last time I saw her and frankly none of the other options are appealing OR seem like they would be any more effective than what I am currently on. I’m also terrified of the possibility of a rebound as the tysabri clears my system and i’m fucking depressed about the (possibility of) fatigue and brain fog coming back and side effects and the drugs not working as well and being in pain again. Work is wearing on me as well, not the job itself, it’s easy and pays well, it’s the continuous uncertainty about getting shifts...like wow casual government contracts are fucked!! 😩

I’m also really fuckin’ emo about not living with Beth or Michelle anymore; Beth went back to WA (she will be back in Tasi next year though) and Michelle is going overseas for 4 months and may not come back to Hobart. They are the two closest friends I’ve ever had and I am, in a way, losing them and the life and home we’ve shared for the last few years. Which I always new would happen obviously, things were always going to change and be something else and regardless of any of that I’ll be friends with them for the rest of my life but it’s just sad! Even Michelle is emo about it and she doesn’t get sad about fuckin’ anything.

So anyway I spend most lucid moments rn longing for sweet oblivion or indulging said need for oblivion by watching Poldark (aka Home & Away in 1700′s Cornwall).

#anyway i needed to whine because this has all been sloshing around my head for a week #and i'm so anxious right now i'm literally having trouble sleeping #hope anyone who reads this is DOING OKAY

2 notes · View notes

heyitssashag · 3 years

Text

Tuesday July 27 2021

I’ve been *extra* wiped out in the evenings for the last week. I fell asleep tonight for a few hours and then woke up at 10pm. Probably my body getting used to all the new medications. My last targeted therapy pill (chemo) was Sunday and I believe I get 2 weeks off now. My blood count is quite low so it’ll likely take some time for that to come back up.

It’s 2:20am, now - woke up from a horrible dream. Last time I looked at the clock prior to that it was 1:30am. I believe I fell asleep and went straight into a nightmare. I dreamt I was sleeping in an old castle. Was beautiful architecture with 20 ft ceilings but was dark and creepy as heck. I kept feeling like my arms were being raised up. Like a possession. I kept screaming “Help Me!” - Every time I screamed in my dream or attempted to move it took a huge amount of effort. Feeling like my body was working against me each time I did anything. When I was finally able to move I ended up in another bedroom - where apparently my Mom & Step-Dad were. My Step-Dad was in some sort of closet and he looked almost frozen. My mom was sleeping in a giant canopy-bed. She was half asleep with her eyes opening and closing. I was standing in front of her screaming, “Help me! Help me!” as my arms started to raise up again. My Mom just laid there with her eyes half open. — Then luckily my daughter knocked at my bedroom door which startled me awake. She said I was screaming and didn’t know what to do. She didn’t want to scare me further. I told her I was so relieved she heard me and she did the right thing. I don’t get night terrors often, but they’ve been happening on the rare occasions for as long as I can remember - usually when there’s been a major change (can be good or bad) or a new stress.

I’d say these nightmares come a few times a year. Last time it happened I was in the hospital just after my surgery. A nurse came in and laid her hand on my ankle to help me come to. I’m not sure what brought this one on other than finding out I get my MRI next week Monday. I think it’s weighing heavily on my mind. The last MRI I had, I ended up leaving 3 minutes in because I was so claustrophobic and then I felt the rods heat up in my neck. It was a terrifying experience.

Yesterday I was also crying a lot. I decided to force myself out for a walk. I was wearing a hat and sunglasses so no one could see the tears. Feeling extremely achey and stiff, I had to take a lot of breaks as well - and it was so hot out. Sucks having to sit at a hot bench. I did run into a deer and a few bears which always brings me joy - even if it’s fleeting. Being in and around nature can be so therapeutic. Hoping to find something that will provide me a longer lasting affect. I talk to my counsellor this afternoon and hopefully I can work more of my “head stuff” out with her. I’ve got a book (and the audiobook too if I can’t focus on reading) called “How to do the Work” by Dr. Nicole LePera. Which was recommended to me so I may finally start to read that, too. I’m not at a loss for things to do to get me through this shitty time but when you’re in the depths of depression, it’s sometimes really overwhelming to get going enough to follow through. I want to stay positive and get better so that is my motivation. Positivity and mental health is so important.

…One day at a time. Deep breaths. This too shall pass.

0 notes

trashylvania · 6 years

Text

okay so... last wednesday, i had a weird heart attack-ish event and reluctantly went to the ER, where the bloodwork indicating whether or not i had a heart attack was iffy and weird but they decided that i was aight and sent me home. but for days afterward, i had residual heart pain, pain and difficulty breathing, weakness/fatigue, constant palpitations, and my heart felt like it was straining with every beat. when i made my follow-up appointment w/ my primary doc (which is necessary following an ER visit,) the front desk asked if still had these symptoms, i was like ‘yeah it’s less severe but still sux,’ so they transferred me to the nurse, who told me ‘uhhh you need to go back to the ER.’ so last monday, i got to enjoy yet another ER visit, which was similarly uneventful. they didn’t run bloodwork for anything (?!) but told me again that it wasn’t a heart attack.

the attending ER doc asked me where the pain was, so i indicated my whole chest; when he checked for tenderness, the right side was painful because in retrospect i unwittingly subluxed my sternum (thx EDS) and when he asked if that’s where the heart attack-ish thing occurred, my tired ass mistakenly said ‘yeah’ even though it occurred on the left (where, you know, the heart is.) i have this thing where i’m intimidated by doctors bc i want to be a doctor, and i’m always worried that they think i’m a fool, so i panic and occasionally mis-report shit. this is bad bc my heart still sux (my sternum on the other side of my chest is still subluxed but the pain is dull, which is a diff kind of pain than whatever my heart is doing.) i may or may not have completely screwed myself, bc something did happen to my heart that i have never experienced b4, something that scared me even tho i’m usually not scared by the annoying stuff my body does. i may never know what actually happened, and when i lay down at night i’m suddenly hit by the realization that my inability to correctly report my symptoms might leave me open to having another heart episode like that, which will again be dismissed bc my shitty misreporting is on record and might be the eternal comparison for any future episodes i may ever have.

still, the ER doc was cool and didn’t dismiss me, since i’m chronically ill and have pre-existing cardiac issues (sinus tachycardia, which is thankfully controlled by meds.) he told me that there must be an underlying cause for whatever is causing me to feel like i’m having heart attacks; it’s not EDS, so i asked if it was my fibro, and he said ‘ehhhh i think it’s something else.’ i’m currently going through a painfully slow process of multiple docs trying to figure out some mysterious neurological symptoms i’ve had for a year and a 1/2 now (embarrassingly obvious muscle spasms, numbness/loss of sensation, tingling/burning pain, weakness, tremors that are way worse than before, a couple episodes of vision loss, and some other weird shit i’m forgetting) which i suspect is MS, but my docs are either tentative or dismissive about it, despite MRI results that suggested demyelination. he checked out the areas that have lost sensation (left foot and lower leg, upper left of my back) and told me that there’s definitely something there. he said that MS diagnoses are tricky, but it’s not impossible, which is terrifying bc he only spent like 10 minutes examining me but still concluded that MS should be given more consideration.

what’s currently worrying me now tho is the thing i didn’t go to the ER for -- my kidneys. i’ve had kidney pain for like a week and a 1/2 now, but since i’m used to having daily back pain i’ve been dismissing it, and my heart issues eclipsed any concern for my kidneys. however, my urinalysis from both visits looks bad. like, i don’t want to go wild with assumptions b4 i see a doc, but i have protein, blood, granular casts, high levels of WBCs, bacteria, AND epithelial tissue in my results. i’m p sure that those results loudly scream ‘KIDNEY DYSFUNCTION HOLY SHIT!!1′ which isn’t a UTI (i’d feel that) so i’m thinking kidney infection? this is gr8 bc none of my illnesses cause kidney involvement. for whatever reason, the nurse in the ER asked me like 5+ times if i had a fever at any point recently, and i’m like ‘idk i don’t rly take my temperature but i guess i get rly hot sometimes?’ are they worried about inflammation? nothing i have causes inflammation. i’ve also become rly dramatically photosensitive lately (i can’t be in the sun for even 2 seconds without feeling like my body is going to collapse) and i’ve been irritated when applying makeup lately bc i’m getting redness in my cheeks and a lil bit on my nose, so i’ve started using tinted moisturizer and concealer even tho i’ve never rly used those.

all of these things that have been annoying me (kidney pain that i have literally all day all of the time, randomly getting rly hot, being suddenly intolerant to sunlight, and this weird redness on my face) might be adding up to something serious. i have this sinking feeling that shit’s about to get real for me, in a way it hasn’t before. SLE runs in my family. the same woman i inherited bipolar 1 from has SLE. i fucking brought up the possibility of SLE to a former doc when i was 18, got practically laughed out of his office. i brought it up a few years ago again, got a negative ANA, got referred to a rheum anyway who said i was fine (which made me feel like such a fool, esp bc a student doc was there which always makes it worse.) i will SCREAM if, after all, i have SLE. i will scream. like i honestly cannot handle another chronic bullshit thing but i’m trying to live in denial until i see a doc

whatever

10 notes · View notes

love-asthou-wilt · 7 years

Text

Pain Is Real, But So Is Hope...

In my entire life, I have never known fear or desperation like what I've been experiencing these last several weeks. Because a single phone call took my safety, my happiness, my hope and ripped it out of me in mere seconds, replacing it with a strangling fear the likes of which I never imagined could exist.

You see... you don't think it will happen to you. Life has this way of tricking you into believing that certain things can't happen.

Not to people you know.

Not to you.

And then it does.

Then something breaks all the windows, shatters the mirrors, splinters all the doors, rips the roof off, yanks you out.

You get dropped in the middle of an endless ocean alone and terrified and silent.

And for a paralyzing moment, you are abandoned, lost, alone.

Let me explain...

For months, I have been having headaches. Debilitating, exhausting. I'm tired all the time. I'm forgetful. I've lost time. I've been momentarily blinded in one eye. I tried to manage the pain on my own. But I was growing depressed, the exhaustion was taking everything out of me. I didn't feel like myself anymore. I didn't know who to talk to. Why would anyone give a damn about 'headaches'? Everyone has headaches.

When I finally had enough, the doctor pulled out all the stops. Every test you can imagine has probably been done, down to an MRI of my neck and brain. And the results of that MRI were given to me over the phone.

According to the powers that be, my neck has a degenerated disc and bone spurs. Two things that will eventually need surgery. I can live with that. I can deal with that. That's nothing.

But my brain?

My brain has damage. The sort that is possibly caused by one of two things: Lime disease or Multiple Sclerosis.

Hearing that was like a punch in the gut. It took the air right out of me. Because I know for sure I don't have Lime disease. Why? Because I was tested for it during the overhaul to try to figure all this out. I don't have it. I never had it. Which leaves MS, a diagnosis that the neurologist needs to confirm.

There was this moment of instant emptiness, as though my ability to feel and think properly was replaced by nothing more than an echoing, silent scream. How is anyone supposed to take news like that? I know... I knowIknowIknow that people get worse news every day. There are people who find out today that they'll be dead tomorrow. I should be grateful, I should be happy that isn't the case here. But someone told me once that pain is relative. No one should be thankful that it isn't worse. Bad is bad. Bad is hard. Bad is painful. The type of bad doesn't negate the strength of the hurt.

And damn did I hurt.

Because I looked around me as I put that suddenly too heavy phone down, and I saw my children. Four amazing, intelligent, strong-willed, loving, beautiful, light of my whole existence, remarkable people. And all I could think was... no. This can't be happening. I want to watch my children grow up. I want to be there to see all the good ways they are going to change the world. I want to witness their happiness. I want to be the constant voice in the background cheering them on to their brilliant futures.

I don't want to be their burden when my body fails. I don't want to be a lesson in grief when this eventually takes me from them.

And I cried.

I cried then so much, I could feel my soul crack against the bonds of my own ribcage.

And then I was angry.

Because what have I done? Who did I cosmically piss off enough to make this a reality? How dare fate deal me this shitty hand?! I've never been the sort to say 'why me' over anything. But in that moment of rage, I did. And I hated it.

I went from one thought to the next, one emotion to the other. I bounced around so much and so steadily that eventually I felt nothing. And that in itself was almost worse. So I picked myself up, duct taped the pieces back together, added a few safety pins and did the research.

My greatest take away was this: There are people who have lived decades with MS, and lived well. A diagnosis of MS today is not the same as it was twenty or even ten years ago. No, there is no cure. But there are treatments. There is still continuing progress.

I have been debating back and forth since that phone call whether or not I should even tell people about all of this. There has been so much going on with so many people I love and care about that part of the reason I haven't said anything is because everyone else has so much more to worry about right now. Worrying about me shouldn't have to be one more thing.

Life is busy and hectic and painful at times for everyone in one way or another. But finding out someone you care about has been dealt a shitty hand can make a person feel helpless. I guess, in my own way, I wanted to spare people that burden. I wanted to continue to be the one who looks after everyone else, who is there for everyone else. I felt like if I admitted out loud to the world that this could be my reality, then I was admitting I was weak.

But I'm not weak.

I'm just human.

A little broken, a little scared, but human.

And on Monday, I will be having my first visit with the Neurologist. Half of me is looking forward to it, to getting this show on the road. Half of me is still struggling with the heartache. I have to keep reminding myself that until I hear the words come out of his mouth, I haven't been officially diagnosed. I keep telling myself that maybe there's a possibility that there's another explanation for what they've found, that there's a simpler solution, that it's not MS.

I know the odds. I know all the test results. After everything that I've been through -blood tests and x rays and cat scans and MRI's, I know everything that this isn't.

But I also know that if the doctor looks at me and says with certainty that this is MS, I'll be okay.

I will.

Because today my six year old son told me he loves me more than I know.

Because my ten year old daughter still curls up in my lap.

Because my thirteen year old daughter says she still needs me.

Because my fourteen year old son still gives me hugs.

Because I want nothing more in this life than to be their mom.

So whether it's MS or not, I will be okay.

And for you, I have a simple request...

All I ask from you is that you hug your kids more often, you tuck them in every time you get the chance, you never hesitate to tell them you love them, you never forget that everything can change with a single phone call. All I ask is that you laugh with your friends more often, you tell your parents you appreciate them, you make sure you hold your significant other's hand for no reason, you talk to your family every day, you let yourself have some peace in the moment, you remember that tomorrow isn't promised. All I ask is that you don't give up. You don't surrender. Pain is real, but so is hope. And hope will always be stronger.

As long as you can do all that, I know... IknowIknowIknow... you'll be okay, too...

#MS #Multiple Sclerosis #Hope #needed to put it into words #words #parenting #life with kids

1 note · View note

marriedandttc · 7 years

Text

CD 21 Testing

I got the results earlier this afternoon and it was pretty sucky. To start my progesterone was at 12.5. The nurse didn't say much - just that the doctor wasn't real happy with that number and would adjust in the future. So that seems like I may (or may not) have ovulated, but if I did it's coming up pretty weak. After how much I truly disliked and was uncomfortable on the medicine that really sucked to hear. I only had about a minute to feel sad before she asked me if I had truly fasted (I had) and if I'd had any sex or nipple stimulation in the past 24 hours (I hadn't). She continued on to say they were going to put Clomid on hold for a moment while they looked into the prolactin because instead of going down like he wanted to see, it went up. (I didn't get the exact number but I did figure out the hospitals online chart thing and I have last month's result and waiting on today's to go up. Then I'll be able to see what it looks like). The doctor set up an MRI on Thursday. My numbers aren't *that* high so I'm hopeful, and I think he is too, that it's nothing serious. But a raised prolactin level can sometimes be caused by a pituitary tumor. The MRI is going to check for that. They said results will probably come in on Monday, possibly Friday. So I'll likely be spending all weekend waiting. Way to ruin Easter. They did say if I have one they usually aren't cancerous so that's something. Like I said, I'm very hopeful it's not he case. I think they're just making sure I don't get pregnant while I have a tumor just for safety and well, health reasons. But I'm still kind of going bonkers because other than an X Ray of my back after a car accident a couple years ago I've never seen a doctor for anything other than a cold. Getting an MRI done sounds absolutely terrifying and I'm not happy. Thankfully they've already spoke with my insurance so I just need to lay super still and hope for the best. Other causes could be PCOS or issues related to my thyroid - so those are both an option to be explored at a later date. Besides the whole "what if I have a tumor???" fear the timing of this sucks. My period should be coming early next week and I don't know what the doctor's plan is for this next cycle. Are they not doing anything while they go over it all? If I don't have a tumor will they up Clomid and continue some more tests before adding things for that the following cycle? I just don't know. They don't want to talk to many "what ifs" about what could be next they just want to get the MRI results and move on from there. Also... I'm not sure how accurate this line of thinking is, but. If I have 12.5 progesterone after 50 mg of Clomid (which I know is the lowest dose) then does that mean that the previous 26 cycles when I was being torn apart emotionally and trying my hardest were absolutely useless because I wasn't ovulating? Because that's so low I can't imagine what it would have been like without medicine. It's been an emotional day and I'm very worn down. I have never hated my body more than I do right now.

#Cycle 27

8 notes · View notes

rilenerocks · 4 years

Text

February 28th, 2015

Michael woke up feeling nauseous and vomited bile. We waited a few hours – then he tried an Ensure and some applesauce. Those came back up so off we went to the ER for dehydration and anorexia evaluations. Neither was found and his blood work was all within normal limits except one liver enzyme which is still recovering. He is still taking oral pain meds-are they the source of the nausea?

We roll into early March, getting ready for the next scans. There are times when the pain abates and Michael experiences occasional hunger which we try to maximize, stuffing food into him to in an attempt to keep him as strong as possible for whatever lies ahead. On these good days, we go out for a meal or try to see a movie. During one of these rare forays into regular life, a romantic song from our very beginning pops up in the film. We both get chills and squeeze each other’s hands tightly, as for a moment, we drift back to that exquisitely innocent time. Meanwhile, our oncologist Dr. Luyun, has decided to have M try a fentanyl patch for pain. Michael is ready to try anything at this point. He experiences immediate relief and feels great for a day or so, but the pain returns fast. We received little information about how long it takes for the drug to build up in the bloodstream so we didn’t realize that he’d need supplemental oral meds until it did. We are so overwrought and frustrated. When he’s hurting and tired, I am as well. He’s tired of reminders about food and drink and I’m tired of feeling impotent. Our personality differences serve us poorly during these stressful times. When I get quiet, to stop being a bother, Michael doesn’t like that personality either. Finding a balance is hard as I am imperfect and certainly not saintly. Neither is he. At night, I lie in our bed, feeling him twitch and have tremors. We never sleep apart – there’s no room for that distance even if we’re both irritable.

March 9th, 2015

I lay here, wondering what the scan results will show, where the cancer is now, if it’s hitting his spinal cord, whether he will have permanent damage, become a quadriplegic, lose control over bladder and bowels. I want to know everything and nothing and I want both to hurry up.

By mid-March, we have scan results that show that the cancer spots are all growing but still reveal no clues about the cause of the intensity of Michael’s pain. We asked for a referral to orthopedics where there’s a very smart doctor out of Harvard. After checking all the scans, he recommends MRIs for the lumbar spine and both hips. He thinks those will provide the best diagnosis which can’t come soon enough. I’m still writing to principal investigators running Merkel cell trials across the country. The idea that you can get into a trial easily is completely false. The bureaucratic aspects are truly maddening, especially when there’s blatant evidence of a terminal disease. If a person is going to die anyway, why not let him have a chance? But that thinking is for another time.

The MRI results are terrible. The cancerous lesion that has been sitting in the disk at T-12 for months has permeated the disk wall and is compressing the lumbar spine. All the nerves in the cauda equina, the nerve bundle in the thoracic spine are being squeezed. Big pain. We are now in a medical emergency and in need of a neurosurgeon. Our radiation oncologist tells us that the disk has to be removed and that an artificial one must be inserted in its place. This would be a lengthy, complex operation. We quickly acquire an appointment with the most experienced neurosurgeon at our facility. He reviews all the MRI images and informs us that in his opinion, this compression is not a medical emergency and that we should return to oncology for radiation and chemo. We sit dumbfounded. There’s no time to go hunting for a different doctor. We realize that his pronouncement is code for either 1) his not being able to perform the procedure, or 2) that there isn’t any point in trying. We head back to Dr. Stanic, our radiation oncologist, who takes a deep breath and designs a radiation plan for the lower thoracic and upper lumbar spine which he warns carries the risk of paralysis. The treatment will be coupled with the chemo drug Topotecan, the second line of defense for MCC. Michael and I are both terrified but he continues to be willing to do whatever what might possibly keep him alive. For me, I bounce between admiration and despair. The appointments are scheduled.

The beginning of April starts with the first of 15 daily rounds of radiation. The chemo will be given once a week. This beautiful spring month will be consumed by treatment. When Michael isn’t too fatigued, we decide we’ll just enjoy spending time with our family. Our world has gotten very small. Michael is inner directed and focused on trying to stay alive. I’m committed to helping him in any way I can. The stress is punishing. On April 6th, the fourth day of radiation, we are entering the Cancer Center when I receive a phone call from one of my nieces, letting me know that my brother was found dead that morning by his wife. The cause was determined to be congestive heart failure. He was a troubled guy and in the previous few months, I’d been so consumed by Michael’s cancer that we’d barely spoken. There was nothing to do but go forward, sitting in the waiting room during the radiation appointment, contemplating life and death and everything in between. My goodbyes to Fred would have to play out as I kept plowing through what was in front of me. No more big brother. The days went by, blending into each other. Every time there was a chemo treatment, Michael would have blood drawn to see if his counts were stable enough to cope with the infusion. When the time for the third one came, his platelet count was so low he was at risk for a stroke. The chemo was withheld and instead he had a platelet infusion. Then he started a course of steroids to try preventing any potential bleeding in the brain. Another stunning blow. April is ending.

We head into May, trying to achieve some stability, physically and psychologically. There are days when Michael feels okay – we head outside to appreciate the weather and the garden. Throughout his entire ordeal we have managed to stay intimate. On May 6th, during the process of running my hands over his familiar body, I find a lump in a new spot near his spine. The next day, I call our oncologist to request a scan and find out that he’s resigned from the clinic. We are now without an oncologist – every original member of Michael’s treatment team is now gone. We go back to Dr. Stanic who quickly orders the scans for the next day. The results show stable disease. I can’t understand it. I remember that PET/CT scans don’t show any masses smaller than a centimeter. Now it is May 11th. Our May 1st wedding anniversary kind of slipped away. After running an errand, I came home and found flowers, anniversary cards and Mother’s Day cards from Michael which make me weep. May 18th. Michael seems to be getting weaker. His appetite is poor and he is deconditioned. Sleeping a lot and getting breathless just walking through the house. I’m reading books for widows. I don’t find them very enlightening. Michael talks about death with dignity, although he says he feels stable. He doesn’t look stable. He is weak but trying to act normal.

What is happening inside me? I feel like pieces of who I am slough off every day. Like silt.

May 24th, 2015

I am lying in my bed on the morning of my 64th birthday. Michael’s hand is on my leg and I’m listening to him breathe. I fear this is the last birthday he’ll be next to me. Forty three birthdays shared. This one feels meaningless. There is a lump on his neck at the base of his skull. Last night I felt one in his left groin. Scan or no scan. These lumps are real. I am walking through this life, feeling mostly dread. My hope is dwindling. I have used myself up.

May 29th, 2015

This morning I found 3 pea-sized lumps on Michael’s head, very close to the site of the excision of his tumor on February 25th. The lump at the back of his neck is a tumor. I just know it. On Monday there will be biopsies of his head. This time, the surgeon is too busy to see him and a physician’s assistant will do the cutting. We know it’s Merkel cell. We’re only going to let him biopsy one growth. Then we’ll finally have the soft tissue requirement that kept him out of the Barnes clinical trial. We are still hanging on, albeit by the proverbial thread. We meet with a palliative care team on Tuesday to see if they can help keep Michael comfortable, both physically and mentally as this all unfolds. So much darkness while we fumble forward.

June 2nd, 2015

I am visiting mom at the nursing home. She has about run out of money and I am trying to get her Medicaid in the midst of my nightmare. She always remembers that Michael is sick. She asks me, “if Michael dies, do you think we should try living together?” I remind her that we already did that. In the midst of her dementia and my grief, we both laugh.

June 5th, 2015

Michael is getting weaker and less hungry. Today is his birthday. We spend a lot of it crying. Michael’s emotional pain is finally bursting out of him. He says he’s never lost anyone before, that the first person he’s losing is himself. The kids come over and we all sit in the yard for awhile. We all act just like ourselves which is both bad and good. The weight of what’s ahead of us is like a massive tsunami getting ready to wash us all away.

June 8th, 2015

SCAN DAY.

June 16th, 2015

The week has been madness. The scan of the 8th showed widespread disease including a pleural effusion which is one of the reasons Michael’s breathing is so labored. Dr. Stanic soberly tells us that malignant infusions are virtually impossible to get rid of so that we should be prepared. Lumps are pushing out everywhere, neck, collarbone, both rib cages. I have no idea how Michael is still breathing. We now have a new oncologist, Dr. Zhang, who we’d seen a few times when Dr. Luyun was unavailable. He is smart and aggressive. We go to see him the day after the scan. Michael is so weak he’s in a wheelchair, but eventually has to lie on a bed in the infusion suite for his appointment. Miraculously his recovered platelets, plus the soft tissue disease finally qualify him for the trial at Barnes. Dr. Zhang goes to call those awful people in St. Louis to clear a path for us. Now all we have to do is gather up all the records, forward the scans and move into the trial. At last. Michael is resting at home while I run around gathering all the information. Again, I’m communicating with Dr. Linette and his nurse. A few days pass and there is no action from Barnes. When I call in again, I’m told that Michael isn’t in the trial, but rather that we have to come back so they can do their own scans. I am enraged and feel like I’m going to have a breakdown. I vow that when this ends, I will eviscerate Dr. Linette and his harsh nurse Joanne. Meanwhile we are to see Dr. Zhang tomorrow.

June 17th, 2015

Dr. Zhang is infuriated to hear that we are not in the trial. He asks us to sit and wait for awhile. When he returns, he tells us that he has managed to order pembrolizumab (Keytruda) off-trial for Michael and that he will receive an infusion immediately. This drug is in the same immunological family as the trial drug at Barnes and has been used for melanoma patients. This is an outside the box move. We are grateful for anything as we get ready to leap into this unknown, untried space. Unless this drug is a miracle, we have to face Michael’s death. Can we find a way to walk this path without crashing into a thousand pieces? Michael has suffered agonies. I am as close to him as anyone can get to another human being. Off to the infusion suite.

June 20th, 2015

I am lying in bed with Michael while I still can. The days are the same. I wake thinking of his death and the horror it will bring. I go away to the park in the morning and cry. Then I run errands and on good days, I swim for awhile. Then I go home and wait for him to come downstairs so we can begin the endless battle over food and protein. He sleeps a lot. We are next to each other, often in silence.

June 18th, 2015

Although it seems crazy, the day after the Keytruda infusion, the visible tumors on Michael’s body seem inflamed. The immunological drugs are supposed to remove blockades from the body’s killer immune cells, releasing them to kill your cancer. This sudden release produces an inflammatory response. Michael’s fatigue is profound. But I decide to start measuring what I can see to track the potential progress. Within two weeks, the tumors which initially looked worse, are visibly shrinking.

Michael is dragging himself through this process. Even though his style is so different than mine, I am awed by his stubborn courage. The Keytruda has impacted his pleural effusion. Twice in July, he has had to be “tapped,” to have fluid drawn from between his lungs and body wall. This is done by inserting a needle into his back. Dr. Zhang doesn’t want to chance having any tubing inserted permanently to stave off the risk of infection. The first tapping fills a 2 and a half liter container. The fluid is blood-red and is 100% Merkel cell lymph fluid. The second tapping fills 3 liters – as I look at it, I think half of it looks more amber colored than red. It appears the drug may be having a positive effect. July 12th, 2015

Mom has fallen in the middle of the night at the nursing home and has broken her hip. I run to the hospital where she tells me that she doesn’t think she can “make it through this one.” I an worried about surgery for her but the orthopedic surgeon says the pain without intervention would be intolerable. What he doesn’t talk about is the hospital delirium that accompanies dementia patients after general anesthetics. Mom survives the procedure but is in a dreadful mental state in addition to having post-surgical pain. For eight days, I run back and forth between her and Michael – finally I request hospice for her and a return to the nursing home before she forgets it altogether. I have to fight for hospice but she actually recognizes my conflict with the staff and supports me. Four days after she’d been returned to the home, I receive a call from a staff member saying that she’s asking for me, just as I’m walking Michael into the cancer center. My daughter swaps places with me. My sister joins us on that July 24th afternoon and we sit with our mother, watching her slip away.

She died on July 25th. We had a rapid funeral with those of her family who lived in town. The heat was blistering and I was terrified that Michael would keel over at the cemetery.

Four days later, our beautiful dog Flash, who’d developed a cough, had me very worried. I took him to the vet and asked her to diagnose him before I left. I didn’t think I could stand to bring him back there again. Bloodwork showed nothing but then she X-rayed his chest. Poor Flash had lung cancer and a pleural effusion, just like Michael’s. I held him as he was euthanized, went home and sobbed with the whole family. What an impossible time.August, 2015

Michael was still fatigued but slowly improving. The physical part was challenging but so was the mental exhaustion. I was utterly spent too, but continued to push forward. Day by day, he began to recover in teeny increments. We went out to eat. He worked in the yard. We tried a staycation at a hotel where he sat bundled up and wasted, but was grimly happy to be out of our house. We went to a rock concert at our local sweetcorn festival.

September, 2015

Scan month. Living between scans may be the hardest challenges we faced those many months. As time went by we got smarter about them, scheduling the follow up appointment for the day after the scan so we wouldn’t have too much time to worry. The early September scan was no exception – we went in for it one morning and by the next were getting the results. Which were spectacular. Between June and September, 80% of Michael’s cancer had vanished, including the pleural effusion. Dr. Zhang brought a colleague in to see the results as he was so excited he was barely contained. Michael was one of the exceptional responders to this new class of drugs, one of the 30-40 % whose bodies were just waiting for help in unleashing their cancer-killing cells. We were thrilled but still cautious. Every three weeks, there would be more treatment, more blood tests. But Michael was almost over the precipice and now, was back in his life. And mine.

Cancer Drops the Hammer – Part 2 – Chapter 10 – Be 278 February 28th, 2015 Michael woke up feeling nauseous and vomited bile. We waited a few hours - then he tried an Ensure and some applesauce.

0 notes

westwardflo-blog · 4 years

Text

The Waiting Game

Hello again, I was intending to post this blog tomorrow but I feel as if there is so much that I need to talk about and vent that I wanted to do it today.

Since my last post a few things have changed. I am currently in the two weeks wait to find out if I am pregnant and honestly the wait is killing me. I am usually on a 26-27-day cycle so I should be on my period now however it has not arrived yet. It’s awful because I don’t want to test too early and be disappointed, I’m kind of holding onto to a very thin thread of hope that I am pregnant but at the same time I have to not cling to that thread because it will just be a bigger fall emotionally if I am not. What is also not helping is that fact I am getting some very similar pregnancy symptoms to last time which of course is causing my brain to overthink even more.

So, I am here to counteract my brain somewhat and talk a little bit about my week. Its been eventful. Firstly, a very dear friend of mine gave birth to her second beautiful baby boy. I was so overjoyed as living in the times we are right now with Covid-19 and good news is just so much more exciting. We all need little joys to get us through this. Amazingly as would normally happen when someone announces they are pregnant or have given birth, I did not feel any jealousy or bitterness towards her and I think I know why. My friend is very aware of the troubles we have gone through and very understanding as to how her being pregnant would make me feel, but honestly like I say the feelings that normally brew just did not arrive this time at all and that is really due to her. She kindly and gently told me she was pregnant before announcing anything on social media as she wanted to tell me face to face and I could see the worry and concern in her eyes as she told me. It broke my heart that someone was almost having to take the joy out of this wonderful news because of me. I was so very moved by this gesture, and I could physically see the strain lift from her once I had been told. I truly was and am so happy for her. I won’t lie, yes, I felt an ache of longingness deep down that doesn’t ever really go away but I pushed it aside and basked in her happiness.

Last time I mentioned that I would be revealing to you my Master Plan (again cue evil laugh). Well this master plan has taken on a very different turn as I will explain. On Tuesday I got a call from my Doctor to let me know the results of an MRI Scan that I had had done on my knee following some pain I had been having and had been progressively getting worse. It turns out that my kneecap is literally crumbling away and that there is a lot of damage to the inside of said knee cap. The findings from the scan have basically shown that I need to have a full knee replacement. Guys I am going to be honest I am absolutely terrified, I am only 33 and this kind of surgery had never really appeared on my radar, so it was a huge shock. Anyway, how does this tie in with my master plan I hear you ask? Well………

My original master plan was to lose a stone in weight to try and help conceiving and to be able to get further help from the NHS. This has not turned into a real emergency need to lose weight before my op date as recovery and the whole surgery itself with be less risky and a lot easier on me (along with the surgeons performing it). So, it’s no longer a case of trying it is a case of I have to succeed!

Monday is our start day and my wonderful Hubby has been so supportive with everything and is going to change his eating habits to keep pushing me forward. We are going low carb and increasing protein to fill us up. I’m not going to lie it will be hard as we are real food people (not in the good sense for me as I am an emotional eater) and being restricted is always hard. However, we have to look at the big picture and really motivate ourselves to keep it up. Wish my luck!

Not wanting to bombard you with too much stuff in one blog post I think I will leave it there for today however I will be back in a week, maybe less to update you on my progress and to let you know what the outcome was of the 2 week waiting.

Next time I will tell why some of my issues are in my blood!!

Toodles xxx

#weightloss #ttc over 30 #ttccommunity #ttc rainbow baby #two week wait

0 notes

braindamageforbeginners · 5 years

Text

Intermezzo: Free Solo Review

Pre-Cycle 11

So, first of all, for anyone wondering, I did get the go ahead from the warlocks on Tuesday to continue with treatment through Cycle 12 (assuming my blood tests come back okay), which is great news. And I’d normally write about that and how awesome it is (Hooray! More chemo!), but it’s been such a long, weird, event-filled week even by my standards (my car got hit by lightning)(that’s a dramatic exaggeration, but, like everything else in my life, far less of one than I’d like), that instead, I thought I’d review the fantastic (and - for me - utterly terrifying) film “Free Solo.” Also, that’ll enable me to put off trying to figure out my upcoming chemo schedule, which is somewhat less-predictable than others (I’d have to come in on Christmas Eve or Christmas according to my current estimate, which seems a little ghoulish even for me).

A bit of background. Even though I like rock climbers and have many friends and family in that group, and even though I have nothing but love for them, their utterly terrifying sport isn’t for me (and thanks to them for putting up with me long enough for me to figure that one out). Full confession; I’m not only psychologically unfit for it, I’m physically not a good candidate. Even putting my neurological issues aside (unreliable left leg, vertigo)(those are the lasting impacts of neurosurgery #3 and #2, respectively), I’m terrified of heights. And with good reason - I’m about 182 cm tall and 100 kg; if I fall, it’s a much bigger problem than if someone smaller/closer to the ground and lighter does. And I’m about 85% torso, by height. So, why would I see a film about a sport that frightens me? Simply put, Alex Honnold, who is possibly the world’s premier greatest living rock climber.

Many, many, many years ago, someone pointed out to me that everyone’s heard of LeBron James, or Colin Kaepernick; fewer people have heard of Royal Robbins (or Kelly Slater, for that matter), largely because the latter two exist in a weird sub-culture of extreme sports that’s not as profitable or plugged in to pop culture as main-stream sports (I’ve only heard of Honnold because I’m a big fan of the Banff Film Festival). So, one of the world’s most niche-sports-figure getting a film - even if it’s not in wide release - is really cool. Again, it means society, as a whole, is opening up to non-traditional people, and sports, and stories. Which, as a now non-traditional person (again, traditionally, people like me die within two years of diagnosis, and that annoying new gimp/cripple physical aspect makes life a lot less accessible than I’d prefer), is cool, and, more importantly, as a storyteller, it means more, different, and better stories.

The story of “Free Solo” is pretty straight-forward. A man works his whole life to perfect his craft, and then, at the height of his talent, decides to gamble it on a potentially lethal career high-point. Wait, what? Most rock climbers - and certainly my sub-par, failed attempts - use various safety equipment and climb with buddies and do other things to minimize risk. The downside is both minimized risk, and, from my limited understanding, some of these safety devices permanently “hurt” (or pierce, anyway) the rock. “Free solo” climbing eschews such devices, or, indeed, a sense of self-preservation. Says the guy who’s letting science use him as a lab rat for a poisonous substance. Again, when you’re desperate, you make odd choices. However, like me, A. Honnold points out that most free-solo rock climbs are calculated risks (to paraphrase him, “The odds of me actually falling are low, but if that happens, the odds of something really, really bad happening are high.”). Which brings us to El Capitain, the Everest of the climbing world. As I may have mentioned previously, this is the Holy Grail of climbing. If you ever go to Yosemite Valley in Yosemite National Park (and I recommend you do this before you die), you will not be able to miss El Cap. If you’re like me, you might even have to go lie down for a few minutes just looking at up at it (it’s terrifying even from ground level). Even though it’s been climbed by blind, deaf, and physically disabled people (it’s a long story; there’s an old Yosemite joke that El Cap is handicap-accessible), it has never been climbed (clumb? someone help me with these conjugations) without safety devices. Enter Mr. Honnold, stage right, and the codependent National Geographic film crew. To make a long story short, he climbs the mountain and survives, with the support of both the film-makers and his long-suffering girlfriend. Hooray.

The reason this film is worth seeing - and why I’m reviewing it - is that, for all that, it’s a very weird film (it’s a really good film, but it’s weird). First of all, the camera and framing devices need a little description. In every scene or shot of El Cap, it not only dominates everything around it, but they use some cool VFX devices at various points to show Yosemite valley shifting and swinging around El Cap. Which made me grip my seat rests, but also gave an interesting insight into how Yosemite is absolutely dominated by these staggeringly massive walls on all sides. Secondly, this is - as far as I know - the only character study of A. Honnold on file in video form. Even though he’s been prominently featured in the Banff Film Festival and other places, they don’t give a real sense of who he is - he’s just a sort of stand-in rock climber fantasy figure; a James Bond of the rock climbing world - in all the other films I’ve seen, he goes somewhere and climbs something impressive; there’s not a whole lot revealed except he likes to climb. And he’s pretty much fearless - according to a little background research (yes, I do read about my subjects before tackling them), Honnold isn’t known for being the most technically-proficient or skilled climber, but he is known for taking on risks and challenges that no one else in the climbing world does. Qui audet adipiscitur and all that. This film delves a little more into that, actually following him into an fMRI (one of those specialized MRIs that shows which parts of the brain “light up” during various tasks and images. The science-person in me would point out that this test is so overly sensitive, it should be taken with a grain of salt (my favorite research poster of all time was one that used fMRI analysis to show which images a dead salmon prefers)(you read that correctly). However, in this case, it showed that Honnold’s fear threshold/tolerance was much, much higher than usual. The film also looks at what that looks like in a relationship, as they also follow Honnold’s girlfriend, Sanni McCandless, for some of it. In retrospect, she’s probably the real hero of the film, because she fully supports him in his near-suicidal ambitions. There’s also the weird aspect about how the world’s most recklessly brave climber gets... stage fright. The film actually documents this very well, about how Honnold doesn’t seem up to the task when everyone’s around, watching him; and it takes a series of hidden cameras and a tactical retreat by McCandless to force him up the wall. As someone who has, ah, “performance issues” when it comes to urine samples (I’d imagine that after a year of those, it wouldn’t be a big issue, like the IVs and neuralgia bother me less, but we all have our idiosyncrasies - I intend to ask the chemo ward to quietly move to a different floor next time), I weirdly get it. And I also sort of weirdly get how, in an extreme situation, sometimes the riskier, more outrageous path is also the safer one. Having said that, I still have to give the man props for a following through on a near-psychotic ambition and seeing it through.

ANYWAY… WEIGHT: 96 kilos CONCENTRATION: Not bad, but I’m also exhausted from a week of travel and holidays. Which reminds me, if I make it out of this alive, I intend to start hibernating from Nov.15-Dec, 25, which should make this sort of holiday seasonal travel a little easier. APPETITE: Good. I’m even starting to appreciate “fun” things, like non-vegetable or protein-based foodstuffs. I imagine that’ll definitely decrease as I get back into the grind and find my willpower renewed with... well, the same willpower that allows me to swallow pills that come in “biohazard” bags. ACTIVITY LEVEL: Good, but I’m still exhausted. SLEEP QUALITY: Okay. COORDINATION/DEXTERITY: Excellent; I even went to the gym yesterday without braces. MEMORY: Not bad, I still have trouble forgetting to complete long or multi-step tasks, but that’s hardly new.. PHYSICAL: Overall, not too bad. At the moment, I’m mostly tired, sore, a little cold, and hungry, which - if you haven’t had peripheral nerve damage or chemo-induced panic-attacks, might seem bad, but to have normal, every day physical complaints instead of my usual, hyper-bizarre ones... well, it’s deeply comforting, in an odd, slightly-masochistic way. EMOTIONAL: Good. I realize I just got a clean scan on Monday - I had to wait until Tuesday to review the findings, though - and after 24 hours of that sort of frenzied anxiety, the volume on standard emotional issues gets muted. SIDE EFFECTS: Tired. So tired. Which reminds me, based on my records, I’m pretty sure my limp’s tied into exhaustion/fatigue issues. Which gives me hope that, after the next two cycles (and possibly a six-month nap to catch up on my sleep) I might get something like consistent progress fixing that complaint. CURRENTLY READING (For Donna): “A Monster Calls.”

0 notes

ableaustralia-blog · 6 years

Text

MY DIAGNOSIS STORY, PART I

Multiple Sclerosis, Clinically Isolated Syndrome or Complex Chronic Migraine?

You may have heard that multiple sclerosis affects everyone differently and when you add that into the complexity of diagnosing neurological disorders and diseases, the diagnostic process can become very confusing and downright stressful for the patient. My diagnosis story is still continuing and is extremely complex but I wanted to take the time to share it with you because if I had been able to find more information on Clinically Isolated Syndrome MS then I feel the process could have been less stressful for me. Most of the information you do read about CIS MS is that it’s fleeting, you are supposed to have one episode of symptoms that resolve and that is a classic presentation of CIS. However it is not always that straight forward and I am living proof of that, I know I am not the only one. Here is my story.

It began in September 2016. We had just moved out of our first family house and were staying with my in-laws temporarily until our interstate move that we had planned for January 2017. It started over a few weeks of getting some headaches, I just put them down to drinking too much coffee to finish my work deadlines. At first the headaches were mild, just enough to cause irritation. Then they began to become more of a problem and I started taking some painkillers. I was just writing them off as not drinking enough water and all the normal causes. Until finally, I was working one day and by about lunch time the pain was becoming more intense. I decided to leave early, I picked the kids up and headed home. I remember driving and every noise my kids made was like someone was stabbing me in the brain. I also remember driving and thinking I don’t even know if I should be driving. By the time I made it home, only a half an hour drive mind you, I had tears rolling down my face from the pain. I stumbled through the door with the kids, then headed straight to take some painkillers and lay down. Luckily my husband was home early from work and he immediately called the doctor. I remember saying to him, it’s fine I’ll just take something for it. He describes this whole scenario as me falling through the door like I had been shot. And that was the start of the full blown, debilitating chronic migraines that I suffered for nearly 10 months straight. We are talking 3-4 migraines per week, most of which lasted 2 days so pretty much a constant of migraine or on a good day, bad headache. Once my husband arrived with me at the doctors, they immediately ordered me an MRI for the next day. At this stage, I simply just thought I was having bad headaches and they were doing the MRI to rule out anything sinister. Secretly I was terrified though, my father died from a brain tumour. Even though they aren’t hereditary, it was still a terrifying prospect. So the next day, I went in for my MRI.

There is something about the very first time in that tube that is completely overwhelming but honestly this first one, I think I was kind of numb. I don’t remember thinking anything was actually wrong but more that this was one of those routine rule-it-out type scenarios, maybe it was just denial. It wasn’t until I got a call from the doctor after hours and they asked me to come down right away. I knew something was wrong but I just had no idea what. “Several T2/FLAIR hyper intense foci within the deep white matter of both cerebral hemispheres have a periventricular distribution with at least one juxta cortical lesion in the right frontal lobe and two periventricular lesions (right peritrigonal and left occipital region), suspicious for demyelination. No diffusion restriction to suggest the presence of active plaque or recent ischaemic event. Further imaging of the cervical and thoracic cord recommended to assess for further plaques.” The doctor explained that the most common cause of demyelination is MS. To be honest, I don’t really remember what he said after that. I think that’s the shock part kicking in. What I do remember is this one big white spot, there was other smaller ones but the one big one was what worried me.

When I got home, my husband asked what the doctor said and I just burst into tears. I couldn’t even say it at first. There was a lot of tears that night, I tried to stay composed but I just couldn’t. I was terrified, mostly because of the uncertainty I think. I remember trying to get it together to call my Mum and as soon as I heard her voice, I pretty much blurred out “lesions on the brain” to which she had a meltdown and we had to call each other back once we calmed down. I do remember at first we thought of lesions like little masses or tumours which is why my Mum didn’t cope at all. Boy, did I google the hell out everything in that report. Everyone says you’re not supposed to google with these types of things but for me, information is power. I wasn’t trying to diagnose myself but I was trying to understand what they were looking for. Understanding the diagnosis process was helpful to make the whole thing a little less scary. Definitely working out that the lesions were not little tumours was a big relief.

I was sent for a C-Spine MRI the next day. I was scared now. I had a nasty migraine this time. The whirring and banging was absolutely agony and every time I shut my eyes, I would get the most intense vertigo which meant that I had to keep my eyes open this time. I don’t know if you’ve ever had an MRI before, but for me the key to surviving them is shutting my eyes and trying to pretend I’m somewhere else. So having to keep my eyes open for this one when I was already feeling scared and sick was not ideal at all. By the time I came out, I got intense vertigo when I sat up and it took me awhile to be ready to leave. This MRI was done late on a Friday afternoon, we then got to wait three days before we could get the report on Monday afternoon. My C-Spine results were clear. While this was amazing news, it also made everything very confusing because now it became a case of “Is it Multiple Sclerosis?” I was then referred to a neurologist. I was absolutely terrified about what was going on with my body, I could feel the changes. When I say that, I’m not just talking about the symptoms - it was bigger than that. My entire body just felt different, like I just wasn’t myself anymore. All I know is I wanted to get to the bottom of it, I needed answers. So I booked in with a private neurologist rather than waiting for one in the public system. I began writing everything down, every little thing I noticed going on. The list got pretty huge pretty fast. I was getting severe headaches daily and the fatigue was starting to really kick in.

About five days before my neurologist appointment, I got what I would describe as really severe restless legs one night. It was like a tingling and burning sensation, my legs were so unsettled that I couldn’t sleep. Little did I know, that feeling wasn’t going to go away. I woke up the next morning with pins and needles through both of my legs. I also started to experience some numbness in my lips. Later this day, I was driving and was in a situation where I needed to use breaks relatively fast. It was almost like my foot had a tremor, like I told my foot to put the break on and it didn’t respond. Luckily at the last second it did and I was okay. I remember driving straight to the doctor and being completely freaked out. The doctor didn’t really understand what I was saying and to be honest, I think he thought I was overreacting. I also told him about the leg pain the night before and the continuing pins and needles which still hadn’t gone away. I remember him telling me that it doesn’t necessarily mean anything unless they don’t go away. I walked out of the doctors office and just cried from frustration. I knew something was going on but it was so incredibly difficult to explain it all. I actually felt crazy. The next day I woke up and the tingling had moved to my left arm and was still in both of my legs. I also started to experience some tingling across my head, muscle twitches and I started to notice I was becoming quite clumsy.

It was time for my neurologist appointment. My sister in-law came with me to my appointment. I am so glad that she did. I highly recommend taking someone close with you to your first appointment. It’s such a huge amount of information to take in. The main thing I remember from the appointment is that all that feeling crazy went away. The neurologist took me seriously. She went through all the notes I had been taking and she understood when I was trying to explain the weird things that were happening. From the outset, she was convinced it was MS but explained that there wasn’t “enough” on my brain to confirm that it was MS. She basically explained that we would need to wait for more to happen on my MRI to confirm it but based on my symptoms and my neurological exam, she believed we were dealing with MS.

“The key requirement for a diagnosis of MS is evidence of damage to the central nervous system that is disseminated in time and space. This means showing that damage has occurred at different dates (DIT) and to different parts (DIS) of the central nervous system. This distinguishes MS from other neurological conditions.”

Read more about diagnosing MS at https://www.mstrust.org.uk/understanding-ms/diagnosing-ms

So at this stage, I don’t fit the McDonald Criteria for MS as I have only one attack (the current one they are seeing me for) and I only have damage to one part of my central nervous system. Now it’s really a matter of ruling out all other possible conditions and waiting for another attack to show up on the MRI. She scheduled another MRI and a massive amount of blood tests to help in ruling out other circumstances. The bloods included liver enzyme tests, rheumatoid factor, C3 & C4, ANA, CRP, ESR, ENA, dsDNA, ANCA, TFT, Folate, B12, TPO antibodies, Varicella Zoster & Vitamin D. She also explained that we could do a lumbar puncture but they can be really nasty especially for people with migraines and my age so she only wanted to do that if it was totally necessary.

Over the next week after my appointment, I started experiencing some new symptoms including extreme heaviness in my legs, full blown fatigue (couldn’t stay awake) and brain fog. The tingling had moved into my face, across the top of my head and through both arms. I started to get crawling sensation across my legs to the point where I would have the check I didn’t have bugs on me. I would get this really strange sensation where I would get shivers on the left side of my body only, literally could draw a line down the middle of my body and the shivers were only on one side. My vision would get quite blurred at times and I started to experience pain behind my eyes. I also started to get what I would call tightness in my chest and sharp stabbing pains in between my shoulder blades but I now know that it was the MS hug because I still get it regularly. I started to get more physical symptoms such as feeling weak, shakiness and feeling stiff when walking. I started to get stomach issues such as cramping, bloating and diarrhea which was definitely from the copious amounts of pain killers I was taking but when I tried to just take panadol, it didn’t even touch the sides.

About ten days after my appointment, I had my follow up MRI of both brain and c-spine which was about a month after my first MRI’s. My follow up appointment with the neurologist was about two weeks after the MRIs. The MRI had some minor changes but not enough to reach a diagnosis. The neurologist conducted a nerve function test which was clear and meant I didn’t have peripheral neuropathy causing the nerve issues. She commenced me on Endep to try and get my migraines under control and a migraine plan of attack. Take x and x for mild headaches and so forth. She also gave me scripts for migraine meds and a stomach protector to take alongside the nurofen. We decided to go ahead with the Lumbar Puncture in hopes that it might have some answers.

As I was seeing a private neurologist, I had to organise my Lumbar Puncture as an outpatient with the private hospital. It was done in an X-ray room and was done by guided X-ray but that still didn’t help. This was the most painful experience. Many people talk about not feeling anything when they have a Lumbar Puncture done and I was hoping for that outcome. The doctor doing my procedure, struggled to get enough fluid and had to move the needle several times. Every time the needle was moved, I had the most intense and painful electric shocks from my spine down to my toes. It was absolute agony. Then I was kept for two hours laying flat which they do to avoid you getting a post Lumbar Puncture headache. I felt a bit dizzy but mostly okay when we left. But within about two hours of getting home, I started experiencing literally the worst headache of my life. The only way I could alleviate the pain was to be laying down.

“Spinal headaches are caused by leakage of spinal fluid through a puncture hole in the tough membrane (dura mater) that surrounds the spinal cord. This leakage decreases the pressure exerted by the spinal fluid on the brain and spinal cord, which leads to a headache.”

We went straight to the hospital, where I ended up staying for about 5 days. There was discussion of a blood patch but it was decided that the risk of making it worse was too high. I did make a fully recovery without intervention but it took about 7 days before I could sit upright again but once I could then it resolved very fast. When conducting a Lumbar Puncture for MS diagnosis, medical professionals are looking for oligoclonal bands (which is an indication of inflammation) in the spinal fluid and compare them to bands in your blood. If there are different bands in your spinal fluid and your blood then you may have multiple sclerosis.

I had a follow up appointment with my neurologist a few days after this so she could check up on me after the LP complications and also give me my results. The end result of my Lumbar Puncture was that there was a significant amount of blood in the sample and it wasn’t conclusive enough for a diagnosis. However given the severity of my symptoms, they were getting worse everyday and the appearance of my MRI lesions. My neurologist decided to start treatment for multiple sclerosis, she explained that she was 90% sure it was MS but just didn’t have the clinical findings to fully prove it yet. At this stage, it would be Clinically Isolated Syndrome Multiple Sclerosis, at least until a second attack happened. She wanted to start the safest of the MS treatments, Copaxone because it doesn’t suppress the immune system and therefore wouldn’t cause significant problems if it turned out to be another condition causing my symptoms.

My symptoms included:

Chronic Migraine & Headaches

Severe Fatigue

Pins & Needles - in different areas of my body at different times

Altered Sensations such as crawling, shivering and feeling like you have water running down your legs

Heat Sensitivity

MS Hug - like a band of tightness around chest and I also experience stabbing pain between the shoulders when I get the MS hug

Nerve Pain - Shooting pains in my arms & legs

Muscle Twitches & Stiffness

Blurry Vision

Tinnitus (Ringing in the ears)

Vertigo

Brain Fog

I started Copaxone and then around two weeks later, the tremor in my hands started. Alongside the tremor, I became significantly more clumsy too. For such subtle symptoms, it actually terrified me. Something about this affecting my hands really scared me as to what the disease is capable of. I remember feeling crazy like I was overreacting but I knew something wasn’t right so I kept taking my notes for my neurologist. The hand tremor continued for a few days and the nerve pain was becoming more severe despite the Endep prescription being increased, I was on 25mg at this stage. I called the neurologists office and went back for a follow up.

At this follow up she ordered another MRI, to try and “catch this” on the scan. Also I have had sensorineural hearing loss (damaged hairs on my cochlea) since birth but given the severity of the tinnitus alongside the other symptoms, my neurologist ordered a hearing test to check if any changes had happened to my hearing to help rule out other possible neurological conditions that could affect hearing too. My hearing test was all clear but something crazy happened during the test, while in the isolated room and listening for the specific sounds - they set off really intense vertigo and even the audiologist couldn’t explain it. The brain is such a fascinating thing and when it’s not working properly, some crazy things really start to happen. I went for this next MRI on the 22nd December, good timing eh? But to top it off, my family and I were all packed and ready for our interstate move right after Christmas. Being the impatient person that I am, I went back to the hospital where I had the scan and picked up the report the day after the scan!

“Five-six lesions within the brain in a typical location for demyelination which would be in keeping with Multiple Sclerosis. Probable one new lesion seen just in the left centrum semiovale region posteriorly, otherwise relatively stable appearance”

Merry Christmas, you’ve got Multiple Sclerosis.

The interstate move, the stress of the diagnosis and the heat of Australia summer (I think it was around 35-40 degrees at this time) really knocked me around. I ended up taking myself to hospital a few days after the move. They really didn’t take me very seriously at all and they attributed everything to heat and dehydration although IV fluids and stemitil they gave me did nothing. I felt extremely frustrated and helpless but I just assumed that this was life with MS and that you just had to deal with it. At this stage it was mostly headaches, the other symptoms seems to have calmed down a little. So I just pushed through, I took mountains and mountains of paracetamol and ibuprofen over that following month.

Then all the symptoms came back with a vengeance but the pain was worse, I had pain behind my eyes and the migraines and headaches were out of control. We are talking daily migraines, painkillers every four hours and completely not functioning. My balance was really off, my hand tremor was back, nerve pain, brain fog, muscles twitching and blurry vision. After a week of this pain, I had no choice but to go back to the hospital. They increased my Endep dose yet again, now I was on 50mg. I was also given a script of Endone to help me get through the pain until the new Endep dose kicked in. I had a follow up appointment with the MS clinic at the hospital a few days later and they scheduled an MRI Brain & C-Spine. Over the next three days, the pain kept intensifying. It got to a point that 6 paracetamol, 6 ibuprofen, 2 rizatriptan and 2 endone still didn’t take the pain away. After a very restless night of pain, I woke up with a blind spot in my left eye. So off to hospital I went again, at first the neurologist who examined me essentially said he wasn’t even sure if it was MS and I’m not if it was terrible bedside manner but he essentially blamed it all on stress around the diagnosis. I didn’t realise at the time how huge an impact stress can have on chronic illness so it really upset me to be made to feel crazy yet again. Despite all this, I was admitted for further testing.

The head neurologist ordered a whole battery of tests to essentially come up with his own diagnosis despite the report I had received. The first eye test confirmed that it wasn’t optic neuritis but that the blind spot was there. They took me off the Endone as the head neurologist said it would only be making my migraines worse and cause rebound headaches. I was still really unsteady on my feet, I could barely hobble from the bed to the bathroom. Over the next few days, they conducted some more complicated tests on my eyes, I lost count of the blood tests and they also gave me an MRI with contrast. The scan showed no changes from the scan in December. They summarised that the eye issues and the balance issues were caused by a flare up of my chronic migraines but not a flare of my multiple sclerosis. “I didn't realise that you could have a flare of chronic migraines that made MS symptoms worse but I'm really glad it wasn't a relapse and MS appears stable”. To be honest, my neurologists have been quite elusive about my diagnosis throughout the entire process and guess that is because multiple sclerosis diagnosing particularly in the early stages is extremely difficult. They explained to me that since my lesions are fairly minimal and that I commenced Copaxone so early in the diagnostic process which would ideally halt it’s progress but also halt further relapses and as such delay definite confirmation of the disease if it was working.

If you are going through a diagnosis at the moment, I hope my story has helped you. Multiple Sclerosis is such a tricky disease to diagnose, it presents itself in so many different ways and can be incredibly confusing to understand in the early days. I would love to hear your diagnosis story, please feel free to share in the comments below. If you’re struggling with getting a diagnosis, please feel free to reach out to me as I know how agonising the process can be. Please stay tuned on my Instagram as I will be sharing where I went from this stage of the diagnosis, how my symptoms progressed and what triggered me to begin my healing journey.

#multiplesclerosis #healing #chronicillness #autoimmune #autoimmune disease #health journey #holistichealth

0 notes

ashanimus · 7 years

Text

Im so fucking angry. I spend the whole week trying to calm down and my friends being super patient with me for the MRI on Saturday and as soon as I feel like things just MIGHT be okay NEW MYSTERY SYMPTOMS on my FACE appear that once again arent going to have any meaningful answers for who knows how the fuck long. I hate this. Im straight back to Monday where I’m so terrified Im unable to focus on anything, everything feels pointless and yet for some perverse reason I’m still not eager to die.

I hate this. I hate this so much. It’s like god wants me to hope the MRI is going to turn up brain cancer. I guess it serves me right for passively thinking “try harder to kill me if you want me to die you indecisive son of a bitch”

I was like. Peaceful. I was peaceful, and had sort of accepted that I might get an awful result but also embracing the possibility of something mild, but treatable. Now I’m just straight into the abyss again, miserably thinking ONCE AGAIN about what Im going to have to do if this is an irrecoverable medical situation and trying to brace for the pain of saying goodbye to everyone while Im still cogent enough to do so while considering the neatest option for an exist from this awful shitty mortal existence when all I want to do is stay here in this shitty mortal existence with the people I care about.

I was even happy, doing normal things and having normal conversations, coping with the fear and doing okay. And now this happens. I just. I literally have no idea.

I wish that whatever ends up happening to be it will be quick. I wish that I had died in the car crash, I wish I had succumbed to the fever, I wish that I had drowned during my diver certification. I wish that I had died as an infant, way back then when it was sheer dumb luck that saved me. Those all would have been better deaths than this fucking hell of constantly dangling on the precipice of a terminal diagnosis.

But I know it fucking won’t be, because if I’ve learned anything from this life they’re going to tell me I’m looking forward to five years of dying before my personality and memory slips away and I bloat and deform into some kind of tumorous alien bullshit and finally die an unrecognizable lump of useless flesh.

Which isn’t going to happen because given that I can affect approximately 1% of the things that happen in my life I’ll at least take that much into my own fucking hands but GOD I dont want that to happen. But people are going to be upset, and ask me to fight, and I just. Dont know if I want to anymore.

I have zero fear of what comes after. I used to have comfort thinking there was a god who felt something more for his creations than impassiveness or wrath an d like lots of kids growing up I believed I would have peace when this is all done. I’ll be glad if its just nothingness since at least everything stops.

I’m way more scared about the pain of dying, the panic I’ll doubtless feel as I stagger into its embrace if I end up going with assisted suicide or some shit--seeing the expression on people’s faces or hearing them cry (because you have to have a witness). Obviously the pain of having to say goodbye before you walk away and you both know you’re never ever coming back and that’s really it.

Literally despite everything, I dont want it to be over. Maybe Im just a sick fuck with a twisted case of Stockholm syndrome, greedy for an endless physical punishment and miserable uncertainty and horrible surprises that have defined close to the last decade of my life.

The worst thing is that the people who get to deal with this--REALLY deal with it are all the people who were good and kind and unfortunate enough to end up loving me and the world or god or whatever is cruel enough to make sure there are lots of them!!! (but of course, none of them are close enough to be here or show up at my wake, because that’d be too good and too easy and too much comfort).

It just makes me feel like my whole life was a total cosmic joke and that the only reason I existed at all was for people to love and get attached to me and now they all have to watch me drown in acid. It hurts too much not to scream and there’s not a fucking thing anyone can do to save me.

If there’s a god, I was raised to defend you, and try to love you, and be patient and understanding that there was a point to it all. That I, as an individual, mattered to you just because I was me. But I have PERSONALLY KNOWN good people who died pointlessly in stupid accidents, people who make a difference and I see that bad guys and the worst of humanity are rewarded and enjoy their tenure here and die old and surrounded by vast caches of shit they never needed.

The problem of evil, man. What I’m going through sucks, but then you look at shit like child cancer and realize there’s no reason for this to happen, no reason at all and NOTHING, no “lesson” or “wisdom” gained for anyone left behind--if there is indeed a kind being at the center of all this--that’s worth the misery and death and strength of a child. Literally nothing is worth that!! Why in the fabric of the universe was that kind of shit built into it???

this is all going to be super embarrassing because this whole stupid blather fest and the ones that will come are probably textbook examples of the five stages of grief or whatever.

Im super angry--and liable to stay that way though. I accept nothing and if there is life after death and I’m faced with any sort of creator the ONLY thing I’ll be accepting of is an apology for making the world this breakable when they had the power to not.

#tw suicide ment #depressing as hell #I didnt think I had the energy for this #apparently I do I guess #yay #ignore its awful

0 notes