crusaderjennblog

I took for granted that ads are somehow legit on Facebook feed.  You know the ones.  #FANAUTHENTICSisaSCAM  But I still got sucked-in when I saw these Seahawks leggings and ordered them November 5, 2016 thinking I’d get them to wear the remainder of the #NFL season.  The website indicates #FANAUTHENTICSisascam fulfills orders in a couple of days so when I looked up the status of my order a week later to see the status as “unfulfilled,” I called to see the hold-up.  What answered was a female voice forcing me to leave a message.  #FANAUTHENTICSisaSCAM  So, I called and left a message every day and never received a call-back.  I contacted my bank yesterday to see if they could do a charge-back, but they filed a fraud investigation and gave me “temporary” credit.  I was an investigator years ago for this type of situation, so I suspect, they’ll spend collectively less than a half hour calling the business phone numbers associated with the debit charge and maybe they’ll look at the website too.  #FANAUTHENTICSisaSCAM  What I found with my own investigation were a few legit sites listing hundreds of customer complaints citing never receiving orders:  #BBB with an “F” grade, #RipoffReport, #ReportScam

Again, I took for granted that a scam would be on Facebook and with the pages of which I’m a fan, with #Seahawks fan pages being in my most followed, but limited list, I was ignorant of recognizing that these Seahawks leggings would show-up in my feed.  Shame on me.  With Christmas weeks away, my goal is to publicize my complaint so that people can avoid also getting duped by this bogus business.  #FANAUTHENTICSisaSCAM

I’m addressing the secondary effects with this post.  Everything hurts right now, even clothes.  I might recall a bit of this sensitivity with the solumedrol in years past.  I remember this all going along with the side-effects of the prednisone.  But honestly, I’ve no idea how much or how little the addition of the Lemtrada treatment is involved.  I’ve been hungry full-time since the treatment started a week ago, but am not giving-in to those alleged pains.  I work too hard to stay in shape to have any drug dictate whether I will remain there.  My skin is hyper sensitive, my muscles are likely trying to not atrophy, my jaw aches, my eyes are strained and twitching, my throat hurts to swallow, but at least I’m alive and double bonus, I don’t have to do shots any more.  Have I mentioned I’m hungry? Line-up the racks of ribs, please.  Sauce is irrelevant.  This shark is going for bait.  Just give me the darn cow.  And all the other sources of red meat, seafood, and birds too within a 1 mile aeronautical radius…  I could eat a menu.  You think I’m kidding.  Just give me creatures.  All the creatures, minus bugs.  I’m going neanderthal-style.  But I’ll settle for an almond bar.  And another in ten minutes.   Just give me the box of bars.  Wrappers too.  And another yogurt.   I’m a grazer and eat mini meals all day anyway.  But enough about my starvation diet right now…

I might recall a bit of this with the solumedrol making everything sensitive and easily irritated, but everyone and by everyone, I mean B and I know after I broke my ankle in ’07 – count the hardware – seven places when I slipped on our sloped driveway #zeroice #klutz and mislabeled it a sprain #wannabedoctor in ’07 that I have an exceptionally high pain tolerance and a clear fondness for sprained fractured broken bones #bruised egos when my narrow frame landed on my kiester #crackedbutt only to land on top of the aforementioned ankle.  So it boils down to how much I can take right now.  A lot.  #jihadistsdontbotherwithjenn.  The I-V infusion ended last Friday, but the prednisone party is overstaying its welcome and will not leave the building.  I always put myself on the “quick-healing” plan because that’s optimal and ultimately, I’m a bad patient.  #failuretofolloworders #zeropatience

In other news, I’m first in my fantasy league.  #onlygirlinleague  My QB Mr. Brady #deflategate was suspended the first four weeks of the NFL season so my standing has nothing to do with him.  What I keep learning is that some NFL players #beckham are temperamental and he’s a thorn, but I literally cannot trade him so he takes up space on my roster.  We just finished Fantasy week 10 and I’m 7-3-0.  My husband helped me only twice in 10 weeks to advise me whether to replace two useless injured players.  OB is a thorn right now, but perspective Jenn…  I survived a week of intense MS infusion treatment last week.  I can see.  I can hear, and I can walk among lots of other abilities I’m guilty of taking for granted.    Thank you, Jesus that I don’t have to do shots anymore.  Thank you, Jesus for B and Baby-Girl and thank you once again for the Lemtrada opportunity and for everything else you continue to provide.  Please forgive my judgement toward OB, but please also inspire him to play like he means it and gets decent points every week.  Amen.  

I’m reviewing side-effects I have experienced this week,  how I’ve felt coming home from the clinic each day and finally the weekend in recovery.   

Monday, the first day of #Lemtrada was the worst from a fatigue standpoint.  #invisibledisease  Thankfully, B planned to drop me off and pick me up the entire week from the infusion clinic because I was drained on Monday from being attached to an I-V all day and getting pumped full of steroids and a various cocktail of drug treatments.  Makes perfect sense.  To sit all day and be worn-out.  I slept briefly, probably from the first day’s ‘excitement’ and anticipation that created both mental and physical exhaustion that left me so tired.  My assigned nurse, Wendy, was fantastic.  Other than the temporary I-V port in my hand that created only minor annoyance and discomfort, I experienced no pain.  However, Monday night about an hour after getting home, it was clear that my heart-rate was elevated.  I watched it and kept track while my heart-rate slowed to a more normal rate and I made Wendy aware of my increased heart-rate, when I returned to the clinic first thing Tuesday morning.  Collectively on Monday night, I slept maybe a few hours the entire night.  From past solumedrol drips, I remember sleep being hit and miss for about two weeks, but once all the lingering drugs were purged from my system, back to Jenn’s regularly scheduled programming for solid sleep, so understandably, I’m looking forward to some steady sleep in the coming days.  

Tuesday went very smooth.  I knew what to expect from the drugs feeding through the I-V and Wendy, checked on me more often than she was required.  Once I made her aware of Monday night’s elevated heart rate, she relayed the information to my doctor, which made him concerned, so they kept me longer before sending me home Tuesday evening.  They increased the frequency of vitals checks.  I believe the standard Lemtrada vitals-check protocol for every day of infusion is take blood pressure, pulse and temperature every 15 minutes once infusion begins for the next two hours.  Then, the third and fourth hour of infusion, vitals checks are every 3o minutes, but the infusion should be complete during the fourth hour.  The fourth hour vitals checks are hourly.

Wednesday I woke and was like “enough already!” and drove myself to the infusion appointment.  We live a half hour from the clinic and I appreciated my husband driving me each day, but other than the first day, it proved unnecessary #inmyexpertopinion and a waste of gas, so I got up and drove myself.  Because I’m #independent.  And practical that way.  #gasaintcheap  So I packed my office bag and cooler.  And besides, I needed to hear some #Christmastunes.  And November might be just a tad early for B to get on board with #chestnutsroasting and #JackFrostnipping.  Wendy was again assigned to me Wednesday.   By Wednesday morning I noticed my ‘regularity’ was gone, but remembered that as a side-effect of the prednisone.  Oh joy.  As if there wasn’t enough going on.  

One of the most uncomfortable MS sensations I felt this year was the MS hug.  I didn’t read about the phenomenon until halfway through summer, but once I absorbed what it meant, many questions were answered.   An MS hug is the sensation of feeling like the body is being tightly squeezed.  Generally, stress, heat and fatigue are factors that cause the feeling and when I told B about what I read, he was not surprised, pointing out that, “’16 was the hottest summer on record for NV, Sweetheart.”  This brings me to the point that the not-so-affectionate MS hug was consistent to take my breath away and cause a feeling of borderline suffocation – as hard as I tried to breathe and as deep as impossible.  All week I’ve struggled with that constricted feeling to get a decent breath, but have not disclosed it to the powers that be.  As a stay-at-home mom and homemaker, my life this week was in complete chaos.  My routine was gone and nothing was normal or predictable.  Please don’t judge my decision to withold MS hug disclosure to my medical team.  My creator is ultimately in charge of this Lemtrada experience and He knows I was selfish.  I wanted to be home with my husband and Baby Girl each night to remind me of the light at the end of the tunnel because with each day, I was ready to cancel the Lemtrada thing.  I was weary.  I needed there to be a point.  And B #husband #love was so great to encourage and remind me of God’s promise to provide healing through this.  

Wednesday night before sending me home, Wendy removed the I-V port.  It was nice to go home without having to worry about bumping-out the ace-bandaged eye-sore.  And bumping it out was a constant concern since I have a difficult time “following the rules.”  “Jennifer, don’t bump anything, don’t do anything, don’t live life.”  Don’t do anything that could bump-out the needle.”  Blaw blaw blaw.    It’s not like I purposely try to bump the needle from the port.  Sans needle, I did #laundry and #sterilizedbabybottles.  Yay!  My husband took this week off of work to ensure I could go through the Lemtrada treatment and he got stuff done at home.  He took Baby Girl for walks, read to her, interacted with her, and tried to teach her some new stuff.  B may not have done things exactly the way I would have, but I’m so thankful for him and his active involvement with Baby Girl.  I missed them both.  He messaged me throughout the week with short love notes and pics.  Baby Girl’s bottom teeth came in the week before I was gone so pics of her with those bottom teeth were pretty sweet.  I slept for a couple hours, woke about midnight and was ready to get stuff done.  #prednisonemotivation.  But then I got squirreled and played #CookieJam and #wordswithfriends and #triviacrack. This girl had the attention span of a fruit fly.  #falsebusyness

Thursday was very exciting for me because I drove again and was past the Lemtrada halfway point.  I was assigned a different nurse Veronica who, like Wendy, was also very nice.  I guess Thursday was an uneventful repeat.  Same song as Tuesday and Wednesday, different day so I’m really not complaining except about that regularity issue.  

Friday was the final Lemtrada dose.  I had a great experience all week except Friday.  The new assigned nurse, Natalie could not have been more useless.  She completely failed to perform all the vitals checks on-time.  I finally noticed after an hour that no one had checked on my vitals like the protocol dictates every 15 minutes.  I said something and asked if vitals were unimportant the final day.  Let’s call her Nat and Nat claimed she had a hard time with getting the timing right.  Really?  Ya can’t get it right all morning, Natalie?  Another nurse Marlene checked on me and when I asked about leaving, she said she’d check with Natalie.  I laughed and said, “I wouldn’t bother because she hasn’t done any of my vitals in three hours at this point.”  

Thank God, my life rests in the arms of my merciful Saviour and not halfwitted Nurse Natalie.  #rnscholarshipfailure  I left the Infusion Center on-time despite the IQ – deficient nurse and because of light traffic on Veterans Day, I arrived home in under 20 minutes.  I parked my rig in the garage and just sat for a few minutes thanking God for the opportunity  and that I was done.  Then I cried and cried relieved I would not need to return for another treatment for at least a year.  B had a bottle of #cab ready for me when I walked  in the house.  

Saturday morning I felt good and like I had some time to get a few things done while B took Baby Girl for visitation with her mom.  But by mid-afternoon, I had a very painful stomach-ache that went on and on through Sunday afternoon.  Finally, that painful tummy-ache went away mid-afternoon Sunday while BG napped, B played soccer and I finally had opportunity to shower after spending time #readBible and in #prayer while B was at #soccer.  When B got home, I felt fantastic.  #PraiseGod  The team didn’t win, but he still barbecued and then we watched #TheLegoMovie.  The week was much too serious and such a movie was a much-needed light hearted distraction.  

Infusion treatments are available only at CTC’s as they are the only type of venues (besides hospials) that are equpped to administer drugs and monitor vitals for administering I-V infusion treatments.    When I received the solumedrol drips in years past, I recalled the same situation, but sitting in a seat all day, not being able to go outside, like I’m in “lockdown” in a CTC really has had a way of reminding me to maintain proper perspective.  It could be better, but it could also be worse.  Much worse.  Thank God I’m not sitting in one of the approximately 30 plus seats set-up for chemotherapy spread throught this area.  I’m not going to pretend that my battle with #relapsingremittingMS seems even remotely comparable.  It’s not.  MS and cancer are both jackass beasts to fight, but not even in the same playing field.  My immune system fights with my own immune system daily like its life depends on it.  Abnormal cells divide and create cancer.   Both are very much diseases, but different.  My aunt passed from cancer many years ago and she was in constant pain. MS can cause pain, although it’s never been an issue for me, but I realize for other MSers, it’s an ongoing reality.  Any condition, disease, illness, what-have-you, might have similar symptoms for a group of individuals fighting the same thing, but each patient’s battle is often very individual to the patient.  Treatment protocols for each person can also vary.  

While here for five days, I’ve been the only patient receiving #Lemtrada, which I believe is likely because it’s such a time-consuming treatment and with more people coming here to fight a life-threatening illness like cancer, I can see why that would be the bigger priority to keep chairs open for cancer treatments.  Get them in.  Get them out.  Pack’em.  Stack ’em and wrack ’em.  Lemtrada requires several hours.  Each day, I’ve checked-in for treatment at 8:00am every day.  I’m generally hooked-up to the drip by 8:30 for a half hour to receive solumedrol and then Lemtrada’s loaded into the drip within minutes for a slower four-hour-drip.  While receiving the Lemtrada, my vitals, heart-rate, blood- pressure, pulse are supposed to be monitored very closely every 15 minutes for the first  two hours of Lemtrada.  Then, it’s every half hour for two hours and then it’s every hour until I leave in two hours.  Long day, huh?   Compared to cancer patients who are normally in here monthly, I see them sit and leave within 2 hours or less.  Sitting in the same “assigned” area, I’ve seen many people come in to sit in the chairs around me temporarily to receive chemo treatment during each day and obviously treating Lemtrada is a much more time-consuming commitment.  #Cancersucks #MSyoureastinkertoo.  

I’m done in a half hour with what I hope will be the only required dose of Lemtrada, however, my neurologist might determine that I could have the secondary three-day dose in a year if she deems it necesary.  Lemtrada’s done and now we wait for healing.  Thank you, Jesus for again orchestrating the appropriate time for this treatment so that I could be here five consecutive days, and so that B would be able to be home with Ms. Buns and taking over all household engineering tasks during this time.  Thank you so much, Lord for this precious opportunity, thank you, B for supporting it and thank you friends and family for your ongoing prayers.   Fare thee well, CTC and thank you for having me all week.  

I’ll go home and enjoy a much-needed bottle glass of wine.  Cheers and GO HAWKS!

Get out the streamers and party-hats and open the champagne!  The MS diagnosis was December ’94 so this is almost an anniversary farewell. I’ve done MS injections since July ’96. If my calculations are correct #warningmathincompetence, I’ve done nearly 8000 injections #toomanyneedles for myself, give or take a handful, but must gives props to B #husband for getting trained and doing the injections for me many times when my ataxia was being an uncooperative jerk and wouldn’t let my hands be steady so I could do the shots myself. #independence  Thank you very much for standing-in for me, Sweetheart. #love

Let’s see how I will handle this now… That’s a lot of syringes I won’t require any longer! #syringeslivesmattertoo.  So the last few minutes, my eyes were sweating. A lot. #celebratoryeyesweating #cryingdenial #happytears  Because today’s #Multiple Scleosis drug injection was my #FINAL MS shot. Ever. For reals, yo. #praiseGod #answertoprayer. I’ve been considering what I might do with that extra 20 minutes each week for the most recent 18 months and an extra 4368 minutes per year for the 15 preceding years and oh no, my brain just exploded with all those, I forget the term because the alpha factor is fine , but it’s that other thing always makes Jenn’s brain go sideways and then she starts talking about herself in the third person and there’s one of her cats buzzed on cat-nip while Butter Buns #baby is taking a nap. If you were also playing along #password, my forgotten word was, “Numeric.”      
Next Monday begins a 5-day, all day infusion treatment. Past blog entries have the deets and I’ll share more next week during treatment. God opened the doors very wide so I’m walking through, #faith #peacethatpassesunderstanding, doubt-free. We don’t know God’s timing, but please keep our family in #prayer as we navigate life differently with my health restoration #healing #propheticword 

Jenn

Except that in recent days, I was never above sea-level in an airplane or sky-diving, although I sure felt as if I had been.  Sunday morning through beginning of yesterday were the start of a short reprieve from several days of #MSvertigo and I took advantage with trips to the #gym, #fitnessaddict both days to get-in decent work-outs since who knew if or for how long the unwelcome, disorienting visitor would return #motivation.   Normally vertigo episodes are 48 hour pre-cursors to regional earthquakes, but because there were a handful that occurred, who knows which fault-line had the courtesy to warn me.  As if I’m the earthquake #whisperer.  There were a few smallish quakes that occurred in our region within 48 after the onset of vertigo, but I’ve been sleep-deprived, so I cannot be expected to keep track of seismic activity locale when I’ve struggled to stay awake.  #Priorities  I normally give-in to taking naps when I’m that exhausted, but having Baby D here has changed things ginormously and I no longer have the nap-taking luxury.  

So through yesterday afternoon, I was #MultipleSclerosis #vertigofree, but today is back to the regularly scheduled #vertigo programming.  These episodes are opportunities for zombie behavior observation through #TWD training, for the coming zombie apocolypse #FearTWD.  The lesson of my little story is that it really is better to be confident that I’ve remained on the ground.  That lack of much needed sleep has definitely taken a toll on what were reasonable, analytical skills.  So here we are with #MSVertigo for over a week now (that short reprieve from vertigo provided nothing, but the hangover feeling that always follows days of ongoing vertigo), but B reminded me I had vertigo for three weeks back in 2001.  Oh, the horror!   Vertigo is truly awful.  The room spinning, the stationary objects that appear to get-up on their own to do circles, eyes that cannot focus, but see everything going wonky…  Thank you, #MS, for all the extra unexpected #MSsymptom-causing conditions that creep-up with no indicative pre-symptoms that might inspire me to get stuff done before the unwelcome and interfering show-stopping symtoms begin.  Don’t judge my sarcasm.   

So, I’m patiently waiting obviously eager to get started on the new MS treatment #Lemtrada.  With everything we’ve heard, I’ve become anxious to see just what and how much improvement will occur.