Posts Tagged Multiple Sclerosis
Ongoing Variables
Posted by crusaderjennblog in adoption, Bible, Faith, Faith in the Midst of Illness, family, Grace, health, Inspiration, invisible disease, Jesus, life, lifestyle, Living with Living with Multiple Sclerosis, Living with MS, Living with Multiple Sclerosis, Maintaining Faith, marriage, Marriage Encouragement, MS, MS Fight Club, Multiple Sclerosis, Nervous System, Neurological Conditions, prayer, Relapsing Remitting, Relapsing Remitting MS, Stress and MS, Uncategorized, Women with MS on April 6, 2021
Prior to the five day Lemtrada treatment in ’16, a team of lab consultants and vampires phlebotemists took eight vials of blood along with the contents of my bladder to establish my base-lines for what my normal numbers were. My thyroid, and red and white blood cells were all completely within a normal range in that analysis two weeks prior to the Lemtrada commencement. Even with Multiple Sclerosis, all these were very much within the range labeled “normal.” I’m explaining this because the following will be somewhat of a brief meaning of the physiological changes that occurred following treatment. We knew of the potential side effects that could happen and from reading the disclosures, there were definitely adverse side effect occurances. With the information that MS could be eliminated through the treatment, I saw the treatment as a calculated risk.
Well, I became the Lemtrada anomaly. My neurologist received reports following those monthly labs to show how my body continued to respond to the treatment. About five months post Lemtrada my thyroid started showing things were changing so off I went to an endocrinologist who put me on medication to control the overcompensating hyperthyroid and a few months later, it became hypothyroidism for my underactive thryoid. Apparently my thyroid couldn’t make up its mind.
In the middle of all this the endocrin diagnosed me with Hashimotos, with vague instructions to stay away from gluten. I thought for a second that that was going to be easy to stay away! How silly was I? Once I researched gluten and found that it was in bread – I love baking bread – and that gluten is in so many of my favorite things {read as nearly everything} many candies I enjoy that include red licorice. But then once I became intentional to stay away from gluten for a month, which began in February 2019, things changed. Those chronic gut aches finally ceased. Over time, gluten-free has become more of a staple in grocery stores as gluten-free snack options are more available. While all these changes started in me and I needed to create my new normal , I was delighted to discover gluten-free snacks in stock with Amazon Prime. Did I mention Gluten-free chocolate covered pretzels?!?! Yum! Simply delightful.
Then a couple months later, the medication changed back to control my hyperthyroid’s overactive antics, but that didn’t go well but after all the nonsense, my numbers finally leveled-off. Then, of all the obscure causes why I didn’t respond well to the prescription, my endocrin said I was allergic to the dye in the prescription pills, so she wrote the Rx in such a way so my pharmacy filled the Rx with non-dyed pills. But then my encodcrinologist moved to Sweden and I was not responding well to the medication anyway so I opted to elimininate the idea of finding another endocrinologist. I didn’t really like her. My first appointment with her was weird. She asked many questions about when and how the MS was diagnosed and in that I explained that auto-immune was in my genes so it was definitely in my genetic make up to rear it’s ugly head. The doc’s take-away was telling me that I missed my calling to go to medical school and figure out why my MS was affecting me and why auto-immune put a target on my family or why Lemtrada screwed up my physiology. Apparently her playbook for me was to discover why I should’ve become a world-reknowned doctor who discovered a cure for MS. I’m not kidding or exagerating about one iota of this.
I would love to say I fired that doc, but timing was such that when I decided to not see this endocrin any longer, she went MIA over-seas. I took the opportunity to be in control, which I should’ve done at the beginning of all this nonsense and researched thyroid supplements and those most highly rated on Amazon. I read many reviews and ordered one supplement. I took for a couple months, but then after I decided that chronic diarhea, even as a temporary side-effect really sucked, I ordered a different highly rated supplement. And “Behold! No chronic diarhea? We had a winner!” Said Jenn after taking it for a month with no unwelcome side-effects. So with the supplement, I felt decent and have continued taking it for a few years now.
Then last September, my (now remember I had to agree to monthly labs for five years following Lemtrada.). Things started changing again with my physiology and my neurologist called and asked me to take a copy of my labs with me to see my PCP. What’s changed this time? I started feeling sick in mid-September ’20. Those labs said I was anemic. Apparently, as of February I’m no longer anemic, but if that’s true why am I still experiencing heart palpitations? Coincidentally, I just felt lousy. This coming December, it will have been five years since Lemtrada ended, but changes were still happening. My internal system has allegedly flushed the toxic chemical cocktail from my body, but things are going awry. For a couple years I put reading my Bible on hold while I was working through my anger at God for allowing our first foster placement after two years with us from birth, be sent to an unknown distant family member in St. Louis.
Perhaps the stress from that situation was another culprit for making my health go sideways. Whatever is going on, I feel like I’m in a fight for my life right now. My new Endocrin tested me for a list of about 25 things in December. A few of those things included conditions related to osteoporosis because with my initial intake appointment with him, he looked at my prior bloodwork and saw that in my urine, there is a high level of calcium, which isn’t normal. My body is leaking calcium. I’m too young to have osteoporosis. Which means I will need surgery to put a stop to this and have my parathyroid removed. I sought a second opinion and that doctor was in agreement that the parathyroid is indeed the problem child. I have an appointment for a bone density scan which should confirm the need for surgery and with the parathyroid removed, it should put a stop to the “calcium leak.”
https://youtube.com/watch?v=X1eMZWiOJ0a0&feature=share
Last June I began reading my Bible again and it’s timely that I am reading Job in the middle of my own health nightmare. God is faithful. I’ve seen and experienced healing in myself and others in years passed. But I’ve doubted him so much and prayed for my own end in order to to be rid of what I know will likely be temporary pain and discomfort. The pain and chronic discomfort that I’ve felt in the last six months is like nothing I’ve experienced before. God healed my MS in 2005. He healed my Dad’s cancer and continues to keep it away. So how dare I doubt his goodness?!?! One of B’s clients has a mom who is also a believer and she told my husband she had a dream about me and that she received a word that I would be healed. But like the Isrealites and their chronic complaining through the desert for 40 years for an 11 day journey, I have to keep my faith and remind myself that like Danny Gokey’s song, I “Just Haven’t Seen It Yet.” The light at the end of the tunnel has become faint, but I have to have faith that my struggles have not been in vain.
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Baby-Girl aka dare I say Diva, in the making?
Posted by crusaderjennblog in Babies, family, Humor, Inspiration, life, lifestyle, Living with MS, Living with Multiple Sclerosis, MS, Neurological Conditions, prayer, Uncategorized on November 2, 2016
Butter Buns must accompany me all the time, so rest assured that when I have to go anywhere for myself-doctor appointments, allergy shots, etc., she must accompany me and I put way more effort into making #sweetbaby Ms. Buns #nickname more presentable #ooohs #ahs than myself. Because baby cuteness factor supercedes everything. And she is thankful for that. Although she hasn’t said much beyond baby-babble at this point, it’s clear that she sees me as part of her #butterbunsposse, although my presence must be silent support #unnoticed. I am one of her #peeps for this potential #divainthemaking. It doesn’t matter that I am make-up free for most things because disguising #wrinkles #darkcircles doesn’t matter. But Butter Buns has standards. For herself. As most nine-month-olds do.
To have Ms. Bunn’s ensemble match and be #cuteness head to toe is more noticeable than if said #entourage member is wearing wrinkled clothes or make-up. Because people notice babies #ButterBun’sPR #me. And I don’t care that I’m wearing something so wrinkled, it appears that I just rolled out of bed wearing my clothes for a nap #tooexhaustedtoiron or looking like the early thousands called and they want their knit gym-capris back. #letpeoplejudge. Yes, it’s 2016 and I wear dated gym clothes #comfortable and probably more often in public than my more fashion-forward husband would like. I’m really not stuck in a time-warp. I just don’t care. #priorities
In my defense, I’m at the #gym 5 very early mornings each week to #workout a couple hours each day and be back home before B leaves for work #notagymrat, but I go to sweat, maintain strength and keep extra pounds from revealing themselves. #gymsarenotsocialvenues I am vain, but more than that, because MS took so much from me years ago when I physically could not work-out when I very much desired to, #motivated #5yearsinawheelchair, it’s very important that I do what I am able to do, when I’m able to do it because I will never again take for granted that ability to walk independently of a #cane or #walker or at its worst, ultimately require a #wheelchair So understandably, years ago, petty priorities like shopping for present-day active-wear or taking time to add make-up, let alone sweat-proofing game face to prevent #racooneyes was deemed superfluous.
The moral of this tangented story is don’t judge the messenger who’s not only telling you “don’t judge,” but take into consideration that for the messenger, looking ultra fab all the time is impossible, unless you’re nine-months-old. #focusattentiononButter Buns.
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My application was approved!
Posted by crusaderjennblog in Faith, Living with MS, Living with Multiple Sclerosis, MS, Multiple Sclerosis, Neurological Conditions, Uncategorized on September 8, 2016
The last several months I’ve dreaded doing my MS drug treatment injections. Dreaded. As in I will wait AVOID and wait AVOID some more until I cannot AVOID it any longer on my injection days and have to make-up my mind to just do my darn shot. 8000 daily injections (some days two) in 16 years might have that effect. Despite nurses coming out to my home and observing my shot routines and trying new shot depths for the injection device, I could not get injection site swelling reactions to cease or even diminish so my injection sites were finally limited to my hips and tummy, where it’s less painful because ultimately and consistently, I still need my medication. Six weeks ago, we saw my neurologist, asked a lot of questions based on our research of available non-injection drug treatments and I realized my tolerance is high for drugs that could potentially kill me, versus low for drug treatments that could cause me nausea. I actually find that very amusing.
The thing is all MS drug treatments have that little disclaimer that they might cause death, but that number is so low and related to patients who already had other issues going on. So when all this dread began a while back, we started praying about a new drug option. Our faith is not in a drug, but that God will allow the drug to be the vehicle that improves my disease status. As we started praying for doors to be opened with this treatment, but clearly shut if this was not something to pursue, the doors opened quickly and have remained open, which answered our question, but I began doubting because everything was falling in to place, too fast, in my opinion.
Then, God asked if I would doubt his provision of the opportunity for which we prayed… I felt convicted and finally my husband shared that he’d been praying for the doors tobe wide open or nailed shut. After our research, we definitely leaned toward a particular drug, but lacked the needed funding. It’s expensive. Why are chronic disease treatment meds so stinking expensive? I’ll tell you why. Because drug companies make way more money treating a “no-cure-in-sight” chronic illness than to patent any available disease management improving treatments. The drug that I’ve been pursuing is not a cure, but a disease-altering method of disease management. Many of the individuals who have taken the drug were at a bad place disease-wise where this drug was their final hope and this drug delivered for them.
For now, I’ll start making a list of all the symptoms that I hope and pray will diminish or disappear as a result of this treatment and keep doing my now three-times-per-week shots because I’ve been approved and funded for this new treatment. With the end in-sight, I’ve developed short-timers and am anxious for this new treatment chapter to begin. Treatment will begin sometime in the next few weeks at which point, I’ll name the drug and all the little details that go with it.
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It is well with my soul
Posted by crusaderjennblog in Faith, Inspiration, Living with MS on July 22, 2015
I love the newer version of this old hymn and God has continued to use this song to keep me and my thoughts in-check because at times, and I’ll be honest, I’ve gone from zero negativity to Defcon Red in milliseconds, for which there is really no valid reason. Those reasons have been ridiculous and those worries have been entirely unfounded. The “what if?” game and I have been on again, off again roommates and I still have to work at kicking-out the unwanted guest when they attempt to argue, sit down and makes themselves at home for an extended stay as they readily rehash what’s wrong in my life, when all I must do is counter-hash everything that is right. Here is Matt Redman’s version of “It Is Well With My Soul.”
I have been so very blessed! In 2001 my MS was on a fast-track quickly retrogressing and I became dependent upon using a wheelchair full-time. 2015 marks 10 years since I regained feeling in my legs, was healed and able to again walk and not require the assistance of a wheelchair. Thank you, Lord.
My Dad was diagnosed with cancer a little over a year ago in 2014. With each quarterly exam, the cancer was confirmed with the understanding that because it was a slow-growing cancer, nothing was an emergency, but it would need to be monitored. My Dad’s quarterly cancer check-up and biopsy in June came back, “No cancer.” As in with all the many many samples they extracted, there was NO TRACE of it. Thank you, Lord.
Our oldest kitty Thor, died at end of April- just a couple of months ago. He was with us 18 years and he lived a pretty long and happy life filled with chasing string and consistent purrs. We adopted Thor shortly after B and I married. Our youngest kitty, Zephyr was diagnosed with kidney stones last winter and because of the process of going under the knife, we’ve hesitated to get him the surgery. With our loss of Thor, the Lord knew we needed some comfort and allowed Zephyr to be instrumental in providing that with lots of loves and cuddles as we mourned, but we remained worried that his condition would also take him from us too soon. Zephyr is now stone-free. Thank you, Lord.
My husband had a bad cough for about a year and the doctor said it was fine. It went away and then the cough started again and I kept reminding B to go to his doctor to see what was going on. They did a full exam and also ran an x-ray this time around. The x-ray was clear and everything is absolutely fine with his lungs except that the doc put him on an allergy regimen and now that painful cough is almost completely gone. Thank you, Lord.
I doubt that there are any other Christians out there who have ever been able to relate to being control-freaks or worrying excessively. What? You might resemble being controlling? You worry about stuff too? Then you can relate… I guess that somehow I believed in my very misguided perception is that if I worried needlessly about anything big or small, that things will get better or something ridiculous like that. I am thankful that God has a plan and that through my worries, He’s waited patiently for me to step-back, give him those reigns for my inner control-freak extraordinaire and just let him be God. It’s a process and I am an active work-in-progress with needing to remind myself daily that, “‘He’s got this, Jenn.” It’s very silly the amount of control that I perceive I have. I believe that the above situations served for no other purpose than to get my faith on-track. But then, it may not be all about me, so perhaps my perspective is selfish in that the listed situations were to grow my faith, when those also could have also served to grow my husband’s faith, my Dad faith, my Mom’s faith and / or my Sister’s faith…
As B and I have again felt led to pursue adoption, our faith has very much been stretched. It’s far from ideal circumstances since we’re older and have less money than the first time we attempted to adopt in ’07, but God’s bigger. We’ve been called to just be obedient to his guidance. He’s bigger than our perceived ideal circumstances and we have questions, but more than anything, we must trust in him.
Relinquishing control is not easy, but I’m confident that considering my own life is just a little blip on God’s screen, that He can see all things past, present and future and that there is a Divine purpose for him allowing you or me or any other person to go through anything. Those situations are either good or bad character building or faith building.
What are you made of? Do you struggle with doubt? What kind of situations have challenged your own faith?
Jenn
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Is the potential to make things worse, worth the risk?
Posted by crusaderjennblog in Faith, family, Jesus, MS on January 17, 2015
I’ve been in the middle of using those critical thinking skills and I think because of my tendency to analyze and reanalyze in all numbers of equations, those skills only become more and sharper to more quickly come to reasonable conclusions. I’ve been very blessed these last 10 years. Rereading that number is incredible because I had to use a wheelchair from ’01 to ’05. 10 years ago I was able to quit using a wheelchair. Wow! I’ve tried to never take for granted what I have because this disease could easily and without notice, remove a number of abilities as it did in years past. The abilities to walk, run, see, swallow and void without the proper tool for example are some things that I could not do for a number of years, so when I could do them again, I’ve tried to always remain grateful and Praise God that those abilities were returned to me and that I still have them 10 years later. The high temperatures of last summer challenged my MS. Obviously we’re months beyond last summer, but I wonder if it’s possible that the high temperatures continue to have a lingering effect on my current state.
I saw my neurologist yesterday and while I was in the waiting room I played an iPad game. Being left-brained, I’m always playing games during which I mentally analyze a number of things that do not have anything to do with the game because I can play the game on ‘automatic pilot’ therefore allowing myself to think on other issues like determining if I’ve created a symptom or whether it was already a symptom. As I was matching tiles, I noticed a feeling in my leg that I hadn’t experienced in years. Numbness and tingling. Then I disregarded what that feeling meant and continued playing. The nurse lead me to a room and I noticed the feeling again. A bit later on my way home from my neurologist’s, I was unsettled about the whole numbness episode because although I was conveniently at his office for an appointment, it seemed he was too quick to prescribe a new bout of treatment. I signed the okay to move forward because I just wanted to get home. I didn’t bother to turn on the radio while driving because I needed to pray and concentrate on what a new treatment might mean. At home I immersed myself into tasks that needed to be done before the weekend began and finally, the dam broke and my eyes sweat (I cried). When I once again acknowledged the unpredictability and reality of my disease, I researched the suggested drug and failed to see any endearing qualities so instead of filling the prescription, I’ll keep doing what I’m doing with exercise and diet.
10 years ago when I got better, I desperately needed a reboot and I quit taking the 13 symptom-chasing drugs that my prior neurologist in Washington kept prescribing for me because I needed to know if those were still necessary. When I quit taking all those drugs, I almost immediately noticed that I felt better. Feeling lucid and NOT feeling like a zombie or I guess what I assume a zombie may feel like, definitely feels better. The list of 14 side-effects of this potential new prescription from my current neurologist included 7 issues that MS currently gives me and upon further reading, those issues would likely be exacerbated with the new prescription! “hmm Let me think about this… gosh, everything sounds very enticing and like something with which I think I should definitely take some risks,” said no reasonable CrusaderJenn EVER. As I’ve already been down the road of drug cocktails and symptom-chasing, I’m content to wait this round out. I understand those who see my decision as foolish. However, please take a moment to understand that I was diagnosed 20 years ago and from MS years 7 through 12, my MS symptoms covered many of those who have a more progressive form of MS. I doubted my own longevity back then and I recently found out that my family also doubted that I’d make it to 30-years-old because my relapsing-remitting MS progressed so badly and so quickly. But God did heal me and here I am 10 years later.
I am a big fan of Pinterest and here’s the link to my MS board. I have to read this board daily as it provides me with a mental boost and some inspiration to keep Fighting the Good Fight.
http://www.pinterest.com/CrusaderJenn/ms-battling-multiple-sclerosis/
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Panic, averted, not ave… , averted
Posted by crusaderjennblog in Faith, family on January 7, 2015
I received a call this morning pertaining to the fact that there would not be a shipment of my MS medication, although, as of yesterday afternoon, I would receive it Thursday. So, when the organization called again today and said there would be an indefinite delay for shipping me my medication, I panicked.
Jenn’s game plan: 1. Panic. 2. Panic more 3. Repeat. When Instead, this should always be my game plan:
However, I did successfully talk myself off of the ledge, took a deep breath and determined I needed a Peppermint Infused Mocha. So I made one. Peppermint Infused Mocha: Mix 1/8 cup half and half with 1/2 to 1 tbsp chocolate syrup, add 1 soft peppermint, then add 1 cup of hot coffee and stir until peppermint is nearly melted. Enjoy. And I did, but then I started to panic again. Peppermint Infused Mochas provide only a minimal level of distraction and comfort and after 4 of these this morning, I determined I should come-up with another game plan. That’s what Russell Wilson would do. But then my defeating thoughts started again… what if I don’t get my medicine this week? Will the delay in taking my injections cause my MS to again relapse? Will I end up in a wheelchair again? This is my ongoing problem: I go from zero to apocalyptic in 0.001 seconds. Until roughly two years ago, I was never a worrier because I took comfort in knowing that regardless of what I did, there were many things out of my control and back then I easily let-go of things and stepped aside for God to control.
It’s been interesting and eye-opening when I think back through recent years and review my decision-making where health is concerned. For the last decade, when fall arrived, I ALWAYS got a flu-shot. But last September, I put my tradition on hold as I questioned whether I was trusting God to keep me healthy or putting my trust in a vaccine. I know that God gives us common-sense and common-sense says to get a flu shot because rumor has it that the current flu-strain is awful. So I should get a shot. But considering we’re on a very tight budget, I shouldn’t get a flu-shot, but can I afford not to? Which says, get a flu-shot, but does that say that I don’t trust God with my health? But then, but this, but that, and the list goes on and I go back and forth. I fully understand that I still lack control of nearly everything, but here I am and as always I am an ongoing WIP (Work-In-Progress) to immerse myself completely in trusting God.
It’s become obvious to myself that I trusted God years ago to get me out of the wheelchair and he did that. Praise God for such a wonderful blessing, but I’m ashamed to admit that my trust is lacking with everything else, like getting us moved back to Washington and keeping our own little family and critters healthy. I’m also ashamed to admit that I have this mentality that because I was the recipient of such an amazing blessing when God allowed my health to improve so drastically, that I do not qualify for any additional blessings. But I know better than to think like that because we are promised in Ephesians 2:8-9 NIV that, “For it is by grace you have been saved, through faith – and this not from yourselves, it is the gift of God – not by works so that no one can boast.”
Jesus dying on the cross, forgave what I did and what I will do as long as I confess. Grace is about what He did and that cannot ever be earned. When Jesus died on the cross for me and everyone else, that was never earned, but I still received that precious gift. Therefore, I have to believe that receiving healing was also not earned and that I just need to rest in peace that regardless of whatever challenges may come up for me or my family, his grace will sustain.
~Jenn
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