chompy

So I'm fat.  Yup.  Go figure. I have polycystic ovarian syndrome,  I've been on steroids more times than I want to have been.  Sure I'm not nearly as active as would be healthy,  but I know my body.

I ended up in the hospital 2 times in 2 days. Pain in my upper right quadrant.   Vomiting and generally feeling like crap.  Finally got an ultrasound and the dr says.  We can get a clear shot because you are obese we are going to have to do a ct scan.   Thank you dr obvious did they teach you tact in med school.   Like dude I know I'm fat.  You gotta point it out right?  Just incase I haven't looked at myself in the mirror of late.  What surprised me is that you would waste time and money sending me for a test you didn't think would be helpful anyhow.  Like I didn't go to med school but hey.  

So I got sent with a warm ct scan with dye.  Oh my god they were not kidding  when they said its gonna feel like you peed.  It really does.  I fo back out and wait in the waiting area.  It wasn't too long when the dr calls us into a room.  So it's not your gall bladder.  Follow up with your GP.... oh and you have a dermoid ovarian cyst.  I'm referring you to a gynecologist.  Wait what I have poly cystic ovarian syndrome.   But what size is it.   What is it what the hell.  He then tells me its 10 centimeters  by 8 cm by 6cm.  I'm like can you show me.  I'm trying to figure out how big 10 cm is... like that's the size of a baby head isnt it?  He shows me it.  Look calcium build up.  Its probable it's a tooth.  Jesus wept it's a tooth.  It looks like a tooth.  What the hell.  

My girlfriend starts giggling hysterically.   Your pregnant.   We should call it Bob. We should call it chompy because of the tooth.

So now I wait for the gyno.in other news I've lost almost 14 lbs un the last 3 weeks so that's good!

A tooth.  God.

the lemtrada treatment so far

So just to recap... I failed out of three different ms medications and went rogue for a while.  I opted to have no medication rather than the horrible side effects of the drugs.  Cue brainstem lesion and terrible symptoms.  Vomiting,  vertigo,  neurological vertigo cuz torn ear crystals aren't bad enough.  Also brain stem lesion.  Like hello main reason to do something drastic. 

Went to the neurologist figured he was going to recommend a pill.  I was so wrong.  Lemtrada.  It is the human equivalent of turning your immune system off then on again.  No seriously.   The completely destroy your t and b cells and let it repair.  Flick the switch

So I took the treatment and didn't die.  I learned humans are gross and was nearly hospitalized with pneumonia.  Middle finger to the unvaccinated.   Get your flu shot ppl.  Stop putting my life and other pols lives In danger.

So fast forward to my birthday.   My immune system is slowly coming back.  So, I decided to have sunny side up eggs.  I'm on weight watchers cuz I didn't think rebuilding your immune system was that exhausting but it is.  Cue weight gain.   I eat some sunny side up eggs and toast.  Fish and salad for supper and split s piece of apple pie with my girlfriend.   I made it home and downstairs before I threw it all up.  Not supposed to have eggs that are under.   God felt like trash for 2 days.

This treatment is hard.  I mean really hard.  The isolation is hard, cuz you never know what germs you will pick up at a coffee shop.  Also I can't get my flu shot so I have to relay on others.  Antivaxer dont panic I cant get s tattoo either.

So I house hermet.  My house is a disaster because I can't clean it.  My girlfriend works 3 jobs and has to cook for me most days because I'm wiped.   The kids are out and about and can't be relied upon to help.  Most days I can only manage enough energy to wipe switches or door knobs.

I'm slowly getting my strength back, but have to.play catch up with the house work.  Sometimes I wish I was little again so my parents would take care of me.  

I can't have friends around if they are sick.  I can't have friends over cuz the house is a mess.  The isolation sucks.  The feeling of being an invalid sucks.  The exhaustion sucks.  

The silver lining is I managed to get my girlfriends sons chainmaile coat done.  1 mile worth of 14 gauge galvanized steel wire.  I donated a bunch of hats and scarves to keep ppl warm.   

I'm ready to be well.  I'd like to be well.

I want to work in my shop

I want to work in my shop.    See I have a ton of new tools.  I have so much to do, but isn't that always the way?

Remember the second time we met? I had reached out and asked for help.  Cristin said you were good with tools and approachable, so I messaged you.  We stay on the porch lighting smoke after smoke to keep our fingers warm.  But holy cow you got that band saw purring like a cat.  You also taught me a lot and never once talked down to me.  I decided I really liked you then.

Seems like our whole friendship revolved around tools.  Remember coming to our new house and helping me set up my shop?  You told me it was way to clean.   I always keep a bit of sawdust around so you don't think I'm slacking.

I quit smoking and you came over for second Thanksgiving.   I had so many people that I had to gave two.  I never even snuck a drag off you.  You told me you wanted to cut down.  Your smokers cough was pretty bad.   I didn't even give you shit for burning my porch.  Okay maybe I pulled your leg a bit.

Remeber when I called you to help me cut the plywood? I was so scared and the saw was so loud.  You said I should be scared and that it had every right to have some healthy fear.  You said buy some ear protection if it was so loud it wouldn't be so scary.  You never made fun of me.

Remember going up the Adria event and you said you really liked Rory.  You said you felt like home.  You said you had found memories of fighting rory to the sound of the beating drum.  I donated my favourite drum so you could hear it when you fought. I was so excited.

I remember when you asked me to call you.  I knew it was bad.  I thought maybe it was something with your soon to be wife.  I knew you had some fluid on your lung.  You told me it was cancer, but you were gonna fight!  I promised we would be there with you.

Couple days later on Fathers day we took off for chute lake and you took us on some back country road.  I wasn't sure you knew where you were going.  But I trusted you.  We lit a fire.  Put our rods in the water.  You took your Yak out.   We laughed because I brought you a healthy snack that you couldn't eat.  It's hard to remember that your friend has no teeth when he smiles with his eyes.  We made plans to go camping.  And we lived each second in that moment

Couple days later you messaged to say it was really bad.  You figured you had a little over a year. We decided to push up the wedding.   Our yard would do.  I lent you my wheelchair just in case.

I haven't sworn so much on your wedding day.  I know you offered to help.  But I knew that if you did you wouldn't be able to get married.  I ordered all the decorations and I know you said not to make a fuss, but I had to.  See I kept looking at you and no offense your life meter kept going down when I looked at you.  I wanted you to have just one more major happy memory.    I wanted to give you something you could hang onto.  I also wanted to thank you for never talking down to me. I wanted your wife to have one more major happy memory.    You said you never  knew how to thank me.  You did thank me a million times.   But I could see the gratitude in your eyes.  That's all that matters.  They told you not to expect to make Christmas.  Man I was scared you weren't gonna make the wedding.  I bought that trailer do you and your wife could go on a honeymoon in it. 

Several days later you were back in the hospital.   Your last memory was the wedding almost a week prior.  I thought man if that was your last memory you would have died happy.   The stuck another tube in your chest and you were stir crazy.  That lump in your neck was now noticeable.  Stage 4 lung cancer can be hard to look at.

Even in the hospital we entertained you.  Your mind was on your wife and we covertly picked up an outfit for her at your request.  We shared a somber moment when I told you a mutual friend had died in a car accident.  I thought of his husband and cried with you.   We even went to value village to get you some stuff to keep you entertained.  Fixed your computer so you could watch movies.  You told us no more treatments you were going to hospice. We said we support you and we did.

I showed you pictures of the trailer.   God you were so impressed.   I did such a good job.   It meant so much to me that you were proud of me!  I knew you would never blow smoke up my ass.

Every day at the hospice I wondered if it was your last.  You went home on day trips and made sawdust.  I was glad you weren't using larger saws cuz you would have to work at cutting a limb off with your scroll saw.  You wanted to do markets with me.  I told you sure man, no problem.   The last week I lied to you a lot.    I know you really wanted to do the markets with me and go to the event.  I just thought it might kill you.  You know I already had PTSD from finding my one friend,  didn't want you to be number two.

Drs said you were gonna go soon.  We should say our good byes.  We had a bbq and I asked if Beth could come.  She was kinda fond of you too.  You said yes.  Chemo had taken your hair and the lump on your neck was pretty impressive.  The picture of you and me looked pretty awkward.   I was trying not to cry. 

Got to see you a few more times in hospice.  You saw people from work and comforted us all and held our hands.  You apologized for not going to be there for my treatments.  You were dying thinking of others. 

You never got to go to that event.   Neither did I.  I had a UTI something I hadn't had in many years.  The antibiotics were supposed to be taken with food.  They forgot to tell me.  I was trying to figure out what to do about the market when your wife called.  She said you passed.  Suddenly I didn't care about the market anymore.

I went out to brunch with your wife and inlaws.  I didn't cry.  I had done a lot of crying.  In the bathroom at your wedding.   In the bathroom at your house.  In the car at the hospice.   But never a bunch around you.  Sure you saw me cry, but the falling apart I did by myself.   Wouldn't have done either of us good.

Had my treatment.   Was so sick o couldn't think straight.   Wouldn't say it though.  Never heard you bitch.  We respected that about each other.  My bodies healing, so I guess that is good.

So now I got this problem.  I got my shop pretty much set up with the tools you gave me.  I can't get the blade out of the scroll saw.  Oh I haven't tried.   I can't take it out cuz you carefully put it in there.  You lovingly placed it in there with your dying body and calloused hands and made saw dust.  The drill bit same thing on your dads old drill press.  Same with the router table.

I gotta Sharpen my crappy lathe tools and you promised you'd show me.  I know you sent over all that sharpening stuff.  I keep reaching for my phone to ask.  To tell you about the new projects I got brewing. Guess I'm gonna have to utube it.  I got no one to help me now.

I know it won't keep me out of my shop for ever and hey you are there right?  I got my ear protection.   I just gotta wait until my eyes stop leaking.   Gotta have respect for the tools right?  Maybe tomorrow I will make a single cut.  All projects begin with the first cut.   It's the hardest.   You told me.  I remember.

One month post treatment or the plague

As you may have guessed I got sick.  Funny thing happens when you have a really low immune system, you have nothing to battle the illness with.  How little immune system?  Well according to the blood test last week my lykosites were at 0.4.   Well there are some right?  Well normal range is 2.5 to 5.0.  Yeah.  So when I went to get my blood taken, the woman coughing all over... yup passed it off to me.  My fault for not wearing a mask I suppose .

So when my cold went from terrible to coughing up stuff the exorcist movie might have had in it... I went to the hospital.  Apparently when your O2 floats between 92 and 95 they get concerned.
Blood taken.  Ekg. And chest xray.  So I was teetering on the edge of pneumonia.  I got some antibiotics and sent home. 
Amazing how quickly that stuff works.  I went from serious trouble to just really sick.

I guess the point is for all you Lemmies out there.  Don't mess around and go to the doctors at the first real sign of illness.   Hopefully out of my sick bed soon.

Peace and love to you all.

Now one week after last infusion

I found out that the lemtrada has a half life of two weeks.  Two weeks.   So now I'm laying in bed like Brian Wilson.  I'm eating tylenol and benadryl regularly to keep the fever down and ky tongue swelling.   The Nurse did check up on me and reassured me that I was doing okay.  The 27th is the first blood test of 4 years. 
But this too shall pass.

Week one after treatment

People keep asking me how I feel.  I find myself at a loss what to tell them.  I mean really we've all been sick, but how often does one take an infusion that completely decimates ones immune system?  I have no frame of reference.   Perhaps I should just talk about the infusion and write the next post about after.

It started 2 days late because I got a uti.  Also that day my friend died so it really sucked.  So two days later than expected I started. The first day I met a new friend who is undergoing the same treatment.   He is two days in and reassured me that I'd be just fine.  The first day was an hour of steroids.   4 hours of lemtrada and 2 hours of monitoring.   On 3 types of antihistamines,  a viral blocker, tylenol and anti inflammatory.  Oh and a heavy duty sleeping pill.   Spoiler alert it didn't do anything.  So the first day was a cake walk.  An awake cake walk but still.

The second and third day were pretty the same although I felt a little weaker
I also had begun to swell up.  Which surprised me considering how much I had to pee.  Now because I started late I took the weekend off (not by choice) I also requested that Monday I have another round of steriods.

Someone should have probably stressed the importance of keeping up with meds because I know what happens when you don't.   We will call it flu like symptoms but throw on exhausted.   Oh and joint pain. 

Monday rolled around and back with the steroids. Monday night the total amount of sleep was one glorious hour.  Tuesday was my final day and I was sick.of the commute.  Then I slept.  And rested.  I'm bored to tears but hey my body is working hard.  The swelling in my tongue went down and once again I have ankle bones and wrist bones.  The infusion nurses were pretty good at putting iv in so I'm not even that bruised.  By the 5th day they found it hard to find veins in my swollen alabaster skin.

I've also taken on a strange grey sickly colour.  That was kinda scary the first time I noticed it.   I also have had heartburn for now almost 2 weeks and I wish it were done.  I look at my flowers from my parents and wish they were here.

Lemtrada

Well I'm on the cusp of a new treatment.   I lost a dear friend to cancer yesterday and today is my daughter's 16th birthday.   16 years just flew by. 

This new treatment is going to destroy my T and B cells in Hope's of resetting my immune system.   So I'm going to be vulnerable and I'm feeling pretty vulnerable too.  I get to be locked into an infusion chair all day from 830 to 430.  They are giving me all the antihistamines gravel steroids  sleeping pills.  As my eloquent doctor put its gonna "f@#! You up really good"  I also appreciate my doctor swearing woth/at me.  Shows he is human.  No God complex there.

I'm hoping for hyper thyroidism because hey skinny again would be nice.  I could also get a myriad of scary things like losing my thyroid or my kidneys some weird bleeding disorder.  But I doubt I'm going to be that unlucky.


So I'm going to be stoned all week so my family and friends should expect so awesome texts.  I am disabling my credit card so I dont spend 200 dollars on candy crush again.  Yes it happened during medicated vertigo treatment .  Stoned Pam is not fiscally responsible. 

Also I'm really scared.  Its important to acknowledge.  I'm doing it anyway.  I've never been one to stop out of fear.  I experience it so much it's an old friend. 

So today is a mixed bag again.  I'm weepy because I miss my friend.  I'm weepy for his bride.  I'm weepy because my baby girl is growing up and I'm weepy for me.  So while my family cleans I'm resting.  Drinking lots of water to get rid of the uti that cropped up friday and hiding in s blanket fort.

Pray for me.