It’s been a while since I completed phase 1 of the #Lemtrada #MStreatment. I started the Lemtrada early November and completed in five days. With the many post-treatment symptoms I’ve experienced, I’d be lying if I said, “I have no regrets.” I have asked myself, “Was it worth it? Were those five days with an I-V an investment? #doubt A small price to pay for a hopefully better, but not guaranteed future down the road? And to be honest, I have gone through many dark episodes weeks of regretting my decision and desiring the opportunity to go back and do it over. As if that was possible. Well, I have regretted following-through and getting the treatment because of consistent lingering side effects like vertigo, muscle weakness, excessively painful tummy/gut aches and now hair loss. In fact, my poor head is losing hair by dozens of strands each time I brush. #chemo I’m not joking about the chemo. The Lemtrada is a diluted formula of it. And those gut-aches? They’re so painful, that at times I’ve prayed for God to bring me home to him so the pain will stop. But #reminder it’s now been going on four months since I’ve had to give myself an MS drug injection. Small blessings? No! Gi-normous #blessings.
That still remains the biggest adjustment as I’ve gotten out of the habit of doing shots, but I still question myself. Have I have done my today? No! And then, “You’re done with shots, Jenn!” I really do not do them any longer. November 5 was the final self-injection. Yay! So, yes I regretted doing the treatment, but remind myself of the benefits. 1. No more injections. 2. Rinse, Repeat to infinity and beyond. 3. #Nuffsaid. And then there’s the whole thing with my epidermis thanking me for seeking a different treatment. No, really. My skin and husband too, continually thank me as my skin has been able to work on returning much of its softness and a lot of its elasticity. Yay! #vanicream Only the best facial moisturizer and body cream I’ve ever used! Now here’s the really bad part… But, before you read further, can you handle my open book? My #honesty? My #transparency?
With those aforementioned painful, side-effects lingering, I’ve doubted God. I’m not by any means proud of my doubts during these rough times, but I have questioned God about his goodness and good plans, which then causes me to question my own eternal status for questioning God. #believe Has my performance been up to par, Lord? Have I doubted one too many times, #Jesus? But I know better. #faith In Ephesians 2:8-9 NIV states, “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God – not by works so that no one can boast.” A reminder that no one goes to the Father, but through him.” I’m a sinner, but God is good. Very good. How dare I question whether I’ve earned his mercy because it’s freely given to ALL who repent. #grace So, I’ve failed to update anything in a long time because I haven’t felt very good in long time and lost a lot of hair. I’m not bald, but my pony-tail over the last few months has diminished to about 1/3 of it’s prior thickness. Reminder that hair can grow back. I’m aware, I have nothing on those battling worse conditions, but please just stop comparing conditions because they are all so different. Yes, some are worse, some are better per se, but when you’re in the middle of a chronic fight for your life at times, it’s damn hard to see that light so faint, you almost miss seeing it, at the end of the dark tunnel.
Here’s what happened: This morning I got up after having a really bad day yesterday filled with pain, self-doubt, about those alleged promises from #God, that will never happen (the doubts in my own head). My mental state has been rough and this morning as I was getting Baby Girl ready for the day, I was pretty resolved to stop going to church, stop believing, etc. because I’ve become very weary in maintaining my faith. It’s exhausting to smile when it seems pain is the new “normal” each day, I know I should eat something, but there’s nothing enticing about any type of food, when I’ll likely throw-up again.
I want my life back. I want to at least exist as things were prior to treatment, when I could walk only so far with MS, but it was predictable and I already knew that a short walk in the morning would require a half hour of rest, instead of the new normal to the rest of the day and the following morning. A tad excessive? I mean, come on, Lord! This new normal sucks! At least going into and following treatment, I had maintained my #faith through consistent #prayer and reading my Bible. But after some weeks of dealing with pain, weakness and queasiness, I became discouraged and my #prayer #Bible reading habits became easily dismissed most days.
Back to this morning, it was rough. I didn’t have the energy to battle #Baby Girls’s one-year-old antics when we and by “we,” I mean I FINALLY got her through eating most of her breakfast after smacking the utensil full of food many times for those food donations to be clean-up by the dog, cleaned her-up and took her out of her high-chair and put down to walk on her own and play with her toys. I finally had a #quiet moment #meditation to sit at my desk, while Baby Girl was playing just a few feet away, to look at my iPad. The first thing that greeted me was a notification that showed me the verse of the day. Hebrews 10:35-36 NIV, “So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised.” Wow! That was precisely what I needed. #hope
God has fantastic timing, doesn’t he? He’s always on-time and never late. Just when I was ready to give-in to circumstantially-driven doubt, He showed up to remind me of these words I’d forgotten, but read many times throughout the years. I needed to reread that and I’m so very #thankful to you Jesus for reminding me. #peace
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
With each day following, I’ve been anxious for my body to start reflecting that the treatment is over and expecting my body to be
healing healed. #instantgratification. Because I’m patient and reasonable that way. #never B keeps reminding me that God promised healing, but I realize my own sense of acceptable timing keeps getting in the way. #godisgood #godishealer Because apparently I’m the only one who is aware I’m enrolled in whatever immediate results program. I already covered my broken ankle from ’07 for all y’all and how I’m always in whatever designated quick-healing program. The doctor said, “It’ll probably take your ankle eight weeks.” I said, “I’ll give it four.” Like I can negotiate with my own body. #nature Well because I wanted to at least say, “I followed the doctor’s orders,” I wore the darn boot, but walking around on it began almost immediately, despite doctor’s orders. I think I gave myself maybe a handful of hours and zero of the days required to keep my ankle elevated, before I started walking around full-time in the boot. All this to make the point that I am both a bad patient and impatient. In my head I have a predetermined acceptable transition period between healing and starting training to resume my prior to MS active lifestyle. But who am I kidding? There is no transition period because training will start soon immediately or more accurately, the moment I discover even a hint that I am getting better.
So let’s cover the side-effects from solu medrol and lemtrada : painful and chronic headaches that required popping acetaminophen every 4-6 hours, all day every day until last Sunday afternoon when I noticed the headache or series of headaches were finally gone, #praiseGod because those headaches were very painful. I’ve had a hyper-sensitive sense of smell over last 12 days and have been smelling drugs and therapy related compounds that my body is purging from the infusion. And it stinks. I kept mistaking myself for being in the morgue. That drug smell was branded on my senses and I haven’t even cleaned our house in a couple weeks because the smell of #lysol #clean is unthinkable right now. Or my body has been so weak from the infusion recovery process that I physically cannot do everything I want, like clean my own house. #fatigue. I’m finally starting to feel less like an odoriferous chemical-filled sponge and more human again with the solumedrol and residual MS Treatment #Lemtrada working through my system. Can I get another #praisegod? #faith #spiritual
Then there’s the part when I began to metamorphoses into an aligator. I continually attempted to put on a layer of my Vanicream moisturizer all over my body last week, but my skin refused it, stuck its tongue out at me and laughed, then told me, “Don’t bother.” But I’m tenacious and my body was in desperate need of moisturizer with the regional drop in temperature. We’re far from typical 110 summer degrees when I use lotion all the time during summer, but with the drop to 70-80 for fall, my skin has quickly become dry and is still trying to get used to autumn. #dryskin So after several days of failing to use the full-cover of moisturizer on my arms because of the nurses need to disinfect for IV’s , it now seems that my normally pretty soft skin is on the upside of looking like I’m no longer doing my best to become an aligator. And I’m no longer reacting to every innocent touch from my husband like I’m being stabbed and am thankful to finally hug him without incident. And by incident, I mean backing away from hugs like the hugger is wrapped in hot knives. It was horrible to feel hugs as so painful.
That solu-medrol, although necessary, really has the ability to mess-up a great deal. Here are the side-effects I experienced from the pred: I looked puffy and redness all over my face, torso, arms and legs #oompaloompa, pain all over my body, like I had the flu, more pain in face and jaw, pain to simply touch to apply lotion on my body and pain from applying facial moisturizer, my eyes were strained and twitchy for a few days, but that nonsense finally stopped. My muscles are definitely weaker and walking upstairs is now taxing. #gym Once the infusion was over, I made it to the gym only once the week after because I consistently woke with dizziness or #msvertigo. This is the second week following infusion and I’ve been on track with my normal gym routine, however, the amount I’m lifting is less. The nurses’s follow-up with me specifically said to lay-off on over exerting myself at gym, at home, etc., while we wait and see how my body reacts to the drug. Apparently she didn’t get the memo that this girl doesn’t ‘do’ delays. #talkingaboutselfin3rdperson
This next factoid might be TMI for wusses, but my pee looks and smells normal again. That’s a big thing because with the help of our handy little black-light for night-vision (thanks to those summer UV glowing visitors known as scorpions), what came out when I voided for several days might have been, although I cannot confirm or deny what might have been classified as toxic waste. Maybe an #XFiles episode should have been based on me and did I mention I birthed an alien last week? #exageration Just kidding. But the part about glow-worthy urine was true. The first couple days it definitely appeared more green. Ew.
So there we have it. Physically I’m weaker, but my commitment to working out should keep me on track to ensure I don’t. #hopeful #faith I’m definitely looking forward to the next chapter beginning when I can tell you that I did a marathon every weekend last month. Or something like that. I’ll keep you updated. #inspired
Happy Thanksgiving and GO HAWKS!
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 – 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!
Over the course of twenty-two years with MS and its retrogression through abilities like my choice to temporarily give-up driving at the tender age of 27, only to again be able to reclaim it a few years later -albeit with some hesitance, #loveindependencebutIvalueyoursafetytoo, and then the need to self-catheterize in public restrooms #hateunsanitarybutnecessary was mandatory because when you gotta go, always go with confidence. And then there was the necessity of needing walking help with a cane or walker and dealing with the loud and ignorant judgmental heckler’s (stangers) comments, let’s call a spade a spade, #grumpyoldcodgers being bullies simply jealous I obtained the last handi-capable parking spot, or the accusations that I “faked” using various devices for good parking, but the most influential, yet one of the most difficult to accept component was accepting rides to appointments from well-meaning #friends and #family.
These were all contributors that #God used to help me absorb the much-needed lessons of being humble. #lessonoffaith Thank you, Lord for being patient with me. #godnevergivesuponus Thank you also to friends for your help and thank you, #Jesus for teaching me to learn to simply appreciate a friendly act of service. I don’t recall just who interrupted me in one of my misguided tirades about people boosting their own egos to offer to “help the cripple.” Was I that bad? I know it’s hard to believe, but yes, Jenn is #stubborn, and I was likely worse than I imagined because it was in my head that I believed most people were fake.
And I often revert to speaking about myself in third-person when I get frustrated. #oldhabitsdiehard To mentally turn each offer to help, into an ego boost for themselves. A lesson I’ve been learning is to accept things at #facevalue instead of trying to read between the lines for some (but likely not there) hidden meaning. Talk about being a mental-case. I
might most definitely resemble that. Ever heard, ” When you worry about what others think of you, you’d be surprised how little they do.” Whoa. So as much as I think people want to make me feel a certain way, they don’t. I ultimately control how I feel and most people have better things to do than manipulate ways to be condescending. Again-whoa. Jenn’s learned it’s much easier to believe an offer is sincere. If it’s not, that is not my problem because I should not be required to further analyze anything.
I detested being required to depend on others to #chauffeur me to doctor appointments, and because of the increasing menu of my many worsening #relapsingremittingMS issues, there were many of those to see various specialists like a speech pathologist to assess learning to speak again, a physical therapist to help me re-learn to walk, a urologist to learn how to safely #catheterize in an emergency, just to name a few things. Because of the many basic abilities I had taken for granted, the lesson to give-up stuff and be forced to accept and later embrace a new practice in order to get what I needed was somewhat lengthy. You can imagine teaching an
old dog mule-like human some new tricks.
Yes, those first couple of years being disabled before turning 30, even I was a pain. You better believe it. I was that old dog. #stubbornasamule Although it probably took longer than was necessary since I was so resistant to accepting help for so long, but once this girl got-it, it became easier and easier to just say, “Yes, I appreciate your offer to help and thank you very much. What day would be best for you?” Another challenging situation was when people offered to buy or prepare us a meal, drop it off and expect nothing in return. Because of my limp and gimpiness, I am a klutz and when I shattered my ankle seven times slipping on the driveway in ’07, several brought us meals. Again, thank you for helping in a big way. But, I very very briefly got back in the mode of analyzing people instead of just saying, “Thank you,” but then quickly realized this was a meal I could in no way prepare for B #husband #love before he came home from work. The moral of the story is accept someone’s offer to help and don’t forget to say thank you and send a thank you note. Those became my new rules. Much easier. And no further analyzing. Whew! This girl’s brain needs a rest. But today, I’m asking for grace while I’m getting the I-V full of #MS treatment as I try to coherently share my thoughts. Thank you in advance.
Speaking of friends, there’s a generous couple from #church who have offered to provide dinner for us as I go through this #Lemtrada #MS treatment. Thank you to friends like this who “get-it.” Instead of of putting the responsibility on us to, “Just let you know if we need anything.” This couple called yesterday and asked if they could bring us dinner tonight. As a matter of fact, that is precisely how such an offer should happen. Those are the best kind. It’s humbling that people would do this for us. It might seem silly that I really cannot do much, but I cannot go anywhere or even try to exercise while the I-V is attached so here I am several hours a day getting treatment. Maybe compare it to being on a long flight, sitting several hours and also being at the doctor’s office for vitals monitoring.
💙💚💙 GO HAWKS! 💙💚💙