Archive for category Multiple Sclerosis
I went to the doctor…
Posted by crusaderjennblog in Faith, Faith in the Midst of Illness, family, health, Inspiration, invisible disease, Jesus, Living with Living with Multiple Sclerosis, Living with MS, Living with Multiple Sclerosis, Maintaining Faith, marriage, Multiple Sclerosis, prayer, Stress and MS, toddlers, Uncategorized, Women with MS on September 15, 2022
First and foremost, I am not a doctor so everything I share should be taken simply as my own experience because it is not a professional opinion so never use anything I say as medical advice.
I had to check myself in to our local hospital a month ago because my doctor advised me to after all the recent blood tests came back with not so favorable results. (I was diagnosed anemic two years ago with a level 10 Hemoglobin. My physician at the time had me add an iron supplement into my diet to get me back on track and six weeks later I was declared “cured.” My level was healthy again.). Fast forward almost 2 years later and apparently the anemia is still active.
Generally speaking a normal healthy female hemoglobin level is 12 -15. (My hemoglobin red blood cell carrying oxygen) was dangerously low at 4. People can flatline at 3. So, I’m kind of a walking corpse. Nice. My love of zombie shows, movies and Spoiler Alert, I am a zombie. Minus the groaning. I went to the ER and although the ER gave me 3 units of blood and I immediately changed my eating habits from living to eat to now eating to live, like lots of spinach and red meat, my body is weaker than ever.
The last several months my husband immersed himself in research, looking for answers and asking, “what is going wrong with my wife,” as he worried I was wilting away to nothing. I was busy teaching and doing activities with our daughter. I was not by any means in denial about my ill health. I just didn’t want to deal with more stubborn-ass doctors with predetermined diagnoses. Perhaps I should have found a different doctor. My husband has been aware of the excessively heavy menstrual bleeding for a while. Being someone who tries to keep some things private between my husband and I, the thought of sharing my nightmare was on the horrific side. But I think he figured out some things when he heard me in the bathroom cursing at inanimate objects (pad failure). I should have invested a small mint in Kelly Clark. Because feminine products could have arrived in trailer shipping containers with the rate I was going. Understand I had to be prepared!
You might consider this fair warning to stop reading if you have a sensitive stomach or become queasy at the mention of blood.
But here’s what happened in the six months following the cured declaration. I stopped taking iron and I got weaker and weaker, thinking i was fine internally but because a doctor never said anything, I figured I was getting worse each day on my way out because of some other unknown culprit. That’s not suicidal. It was just a realistic acknowledgment that I thought I’d l ikely be gone before end of year with my list of health issues and all doctors pointing to MS before even asking questions or giving me the opportunity to explain my symptoms. I went to more than a dozen different doctor appointments in last 12 months asking questions and not one took the time to write up lab orders for blood tests because they already had pre-formed ideas or assumptions for what was going on. MS, anemia, osteoporosis… But what I consistently explained to doctors was that I’ve had MS almost 30 years and my symptoms do not physically feel like MS symptoms. And look this up docs, the symptoms are different and consistent with anemia. But because MS is the “bigger” health issue, no one has bothered to leave MS alone for a moment and focus on only the newer symptom stuff.
For example, I went to a lab appointment last spring and stepped out of my rig, and felt that gushing sensation (not urine, but menstrual blood) and got back in my vehicle to promptly return home and discover there was indeed an accident. A big one. Blood all over the back of my jeans. I just might need that truckload of supplies on an ongoing basis. But goodness, the truckloads I had to use. I got used to bleeding every 2 weeks with these obnoxious clots and assumed it was normal with getting older and probably indicative of menopause. Oops. That was yet another of Jenn’s misdiagnosies.
I made another appointment with my OBGYN and told her what was going on and after she examined and did some tests, she suggested uterine fibroids. She initially mentioned fibroids a year ago. I thought they might eventually go away. Oops. My bad again. The fibroids got worse. B also discovered with anemia, that might be the culprit when he came across blood disorders, anemia and fibroids in a search with bucketloads of responses, he said, Let’s make an appointment.” I needed a referral so I saw the first available physician at my clinic to get that referral.
But this time around at a new PCP, the physician I saw was different and she asked a lot of questions to understand how I determined I needed a hematologist referral. Because of my weakness in walking, I requested that B join me and he always provides wise insight as I explained everything going on. I explained my symptoms and that my weakness was increasing and I needed something to help me get better. Like today. A key component of this, that I didn’t realize was relevant is the fact I had some very very very heavy bleeding each month. And the fact that my periods lasted about 10-12 days apiece, and had a not so typical schedule of starting every two weeks, not 28 days. I was clearly bleeding about 24 days of each 31 days. Problematic. My body has been losing way more than it can possibly replace so it’s seriously no wonder that I have little strength to walk anywhere without losing my balance or falling. I can’t bleed one week each month like a normal woman. I have to bleed up to 24 days. About a year ago I gained the extra 10 days as my period bonus round. So, mathematically I was bleeding more than I wasn’t each month.
Back to the OBGYN who mentioned fibroids last year at my annual, but my failure was to not research or take it seriously. Those hell-raising fibroids are precisely why I’m anemic. She denied the possibility that anemia had any involvement with the uterine fibroids issue. One thing she did correctly was to give me a couple of referrals for surgeons. But the failure was her stating there’s no correlation between anemia and fibroids. But the surgeon said the fibroids and anemia typically go hand-in-hand. And when I was in the hospital, the physician asked if my periods were normal. Nope. They immediately scheduled a pelvic ultrasound to take a look at my abdomen, and see what they could see. Low and behold, there was something, but only doctors share the findings . The hospital suggested I make another appointment with my OBGYN. But instead, I got a call from a cancer surgeon a few days after I left the hospital. The scheduler said, “You have a mass” and scheduled an appointment with one of the physicians a few days later. Apparently there’s a reason receptionists are not supposed to say anything about anything. I shared with B what was said and between my family, friends and church, we likely have had close to 1000 people praying for me. The term “mass” leaves much to the imagination and by my own uneducated misunderstanding of a great many things, I figured I’d be dead before the end of the month with the mention of a “mass”.
We went to see the surgeon and she immediately examined me, said my uterus is the size of a cantaloupe, and went into scheduling a hysterectomy and she never mentioned “mass.” I asked if the mass would also be removed with the fibroids and hysterectomy. Is it cancer? I think she was confused and said she’d be right back. As she looked at my chart as she walked back into the room, she said, “there’s no mass, there’s no cancer.” Praise God! Because my level of worry made me sick. Literally.
Here’s the other screw-up…. The whole process of going to the ER, filling the prescription, taking the prescription, only to realize when I finally reacted with an allergy five days later from the blotchy skin, that I had hives despite the warnings all over my profile at the hospital as well as the pharmacy that I’m allergic to the primary ingredient in that particular iron product. It’s really a comedy of errors at this point with stinking everything becoming something. So it really has not been unreasonable to anticipate my life being over shortly by something ridiculously silly like a known but ignored allergy.
When I called the pharmacy and asked about the ingredients, that employee apologized immediately because she said they shouldn’t have sold me that and asked me to get some benedryl immediately to counteract the allergy. Everything else has gone wrong, so why not this too?!? The sales employee saw the flag, got a supervisor to override the allergy flag when she looked at it and the supervisor ignored the flag and sold it anyway. My poor husband. He was pissed that the pharmacy missed the flags. Then the supervisor called me and she apologized up and down after my husband had a conversation with her. I think he made her an offer she couldn’t refuse. Kidding. B never loses his temper when he is communicating a frustration with anyone. While he doesn’t yell or make a scene, I’m confident he shared his grave concern of the employee repeating her egregious error with another customer.
I guess God isn’t done with me yet. Because there were several opportunities in last five weeks for Him to figureatively “pull the plug,” yet here I am… thank you, Lord. The hysterectomy is Friday and I’m anxious to report what happens next.
Strike 3 and the right parathyroid is outta here!
Posted by crusaderjennblog in Bible, Faith in the Midst of Illness, family, Grace, health, Inspiration, invisible disease, Jesus, Living with Living with Multiple Sclerosis, Living with MS, Living with Multiple Sclerosis, Maintaining Faith, MS, MS Fight Club, Multiple Sclerosis, Nervous System, Neurological Conditions, Relapsing Remitting, Uncategorized, Women with MS on December 16, 2021
Said the Jenn 7 months ago in a blog draft immediately following the right parathyroid extraction surgery anticipating I would immediately feel better and immediately get to resume my routine. Yet, here we are and there has not been one noticeable positive change. I’ve retrogressed. Badly. So much so that in March I began to consider going to the Mayo Clinic as my last ditch effort to get fresh eyes on this situation as I’ve been determined to obtain answers. So, after filling out a ton of health background forms, I finally scheduled an appointment and reached out to my team of physicians to please provide whatever the Mayo Clinic needed. They agreed verbally, but when it came down to actually faxing my history to Mayo, they couldn’t be bothered. My neurologist, for example, got covid and almost died so unfortunately for patients like me, her priorities changed and following through on a simple commitment, in which she had a month to send the needed blood work treatment summaries information
The little culprit was taken out December 15, yet the last several months have provided an immense level of frustration. My ENT and I had placed so much hope in my health improving with the right parathyroid extraction. Imagine the disappointment of realizing I hadn’t improved. Of realizing the surgery was in vain. Of wondering if there are answers? And realizing this pile of horse-crap that I was handed might be the most and the best that the Jenn has in which to look forward…
Several months ago in March I began entertaining thoughts of going to the Mayo Clinic. Great idea, correct? I mean they’re world-renowned experts, right? My motivation was to get fresh-eyes on my situation. I have seen 3 Endocrinologists, 3 ENT’s, 2 Neurologists, 1 OBGYN (for that list of ongoing female issues) and a PCP and a naturopath in the last 12 months, yet not 1 had a fresh perspective or idea. Apparently they no longer encourage those physicians with fresh outside the box ideas like Dr. Gregory House to explore those anomalies which ultimately have a cause, but lack interesting substance or maybe it’s the ultimate motivation. Money. Perhaps doctors have written me off because of my health and that I won’t be around long enough to make it worth the effort.
The Mayo neurologist in Scottsdale definitely had a predetermined narrative. I shared everything that was going sideways with my health, when it began, etc and she had a pre- formulated prognosis. That I was experiencing PPMS. What?!? That still doesn’t make any sense. My regular neurologist had not even shared that as a possibility. Almost 28 years since the MS diagnosis in 1994, 26 of which have been symptomatic and under prescription treatment, so denial of this disease is not even in not even in the scope of possibility. Maybe your denial, but definitely not mine. Hypercalcaemia, osteoporosis, anemia, hyperthyroidism, Hashimotos, and then there are those pesky uterine fibroids that have no relation to PPMS that cause an obnoxious bleeding to excessive amounts of bleeding every month during my cycle for 3-12 days or however long my annoying Aunt Flo comes to visit. So how may I get answers to those questions, Mayo Clinic? But wait, expert Doctor, as I recall, you couldn’t be bothered to listen as you interrupted with your expert prognosis.
B and I packed-up and drove home with T after my appointment at the Mayo. We were both numb from shock, having anticipated a very different experience with hopes of driving away with positive outcomes and treatment options. I was not this round’s lottery winner.
One year ago…
Posted by crusaderjennblog in adoption, Babies, Bible, debateable, Faith, Faith in the Midst of Illness, family, Football, fun, 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, news, prayer, Relapsing Remitting, Relapsing Remitting MS, Stress and MS, toddlers, trends to consider, Uncategorized, Women with MS on November 7, 2021
My PCP diagnosed me with anemia. A few months later, I received the hypercalcaemia diagnosis from my endocrinologist, quickly followed by an Osteoporosis diagnosis and put on a drug that might cause me to lose a tooth or two. I want to be off that drug ASAP. Despite all the cumulative crap I’ve been dealing with since ‘17, I finally have a sliver of good news to share.
My endocrinologist at my July appointment basically threw-up his hands and said he’s sending me to an ENT because my symptoms don’t match my numbers, but he believes there’s something indicitive of a tumor, although the thyroid and parathyroid ultrasounds and nuclear medicine tests revealed nothing. My downward spiral of symptoms going from a pretty healthy patient (minus the MS) to going straight down a toilet as my gait in just a few months became that of a 90-year-old trying to be purposeful with each labored step.
Last weekend at church, as I walked to my vehicle and I heard someone behind me and glanced back to see who it was. The older gentleman has always reminded me of my late grandfather and I stopped so he could catch-up to me. He said he had never seen me walk so slow. I laughed and asked if it was really that noticable. Then he went on to explain how he’d always seen me actively chasing the little ones all over and then said he was keeping me in prayer. I tend to be guarded about sharing anything specific, but last Sunday morning, I was confident that the Holy Spirit put it on my heart to share with a few people at church that I was scheduled for surgery December 15 for a pararthyroidectomy.
My endocrinologist did send me to an ENT, who after viewing all the pictures, labs and radiology reports, sent me to another ENT. Well that ENT sent me to his ENT, who is head of the ENT department at the university in town and his MA was able to schedule me for an appointment to see him a week later. I told B I was tempted to cancel the appointment because I was tired of wasting my time and being referred and referred to another doctor, and another doctor, etc. B asked me to keep the appointment and if I still walked away after the appointment feeling dislcouraged and like I wasted my time, then we would seek other treatment. Funny how I get so frustrated that I might have some extreme tendencies to for example, jump off cliffs because it just makes more sense to me to do something drastic , ya know) and then B has this level of discernment that can reel me in and produce peace with a few words.
Well that ENT, about 60 seconds into the appointment, said he had viewed and studied the pictures of my parathyroid and explained he believed at least one part, potentially two of the four-part parathyroid had tumors. I asked him how long he had specialized in ENT studies. 30 years. Only 30 years!! Then he said, “ I’ve seen this before, these symptoms and pictures . I’m confident if we do the 15 minute surgery to take out the parathyroid, that you should start feeling better almost immediately in the recovery room.” And with those few words, those tear ducts started filling up. You might remember that this girl does not cry…. her eyes sweat.
The end of the tunnel just became brighter…
Posted by crusaderjennblog in adoption, Babies, Bible, Faith, family, health, Inspiration, Living with Living with Multiple Sclerosis, Living with MS, Living with Multiple Sclerosis, Maintaining Faith, MS, MS Fight Club, Multiple Sclerosis, Neurological Conditions, prayer, Relapsing Remitting, Relapsing Remitting MS, Stress and MS, toddlers, Uncategorized, Women with MS on November 5, 2021
When MS became more than MS with the unforseen truckload of additional health issues caused by the drug Lemtrada, I really questioned God and his faithfulness. I’m very aware there was never a guarantee that my life would be obstacle free. In fact as a Christian, it is a sure thing that God will allow trials for my own growth.
Having problems pushed me to know him better or have I reacted by becoming closed-up or anti-social?
As problems manifest, I have been prone to isolation. It’s way more comfortable than sharing anything for which folks will likely shun me anyway. So, in a sense I’m doing my future self a favor. Right? Totally. Except. God didn’t create any person to survive alone, but thrive with others to support, encourage, lift-up during times such as these. And there I was isolating myself at home, doing distance church from my iPad at home to avoid being a burden or a slow-poke with my cane or avoid questions like , “what happened?” from nosy-nellies posing as concerned people who care.
Ouch. Thank you, Lord for convicting me of being narcissistic and shame on me for doubting anyone’s intentions. That’s my normal reaction, but it dawned on me, (again thank you, Lord) last week watching church, that with all this crap going on with my health, that I have a fantastic testimony opportunity. And so after many weeks at home during church, but watching from a distance, I put on my big-girl pants and went back to church.
For an incredible reason. For B and I to have our two-year-old daughter dedicated at church. Didn’t I mention we had a foster child in our home? That we officially adopted at the beginning of August?
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.
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.
A Test of Faith
Posted by crusaderjennblog in Bible, Faith, Grace, Inspiration, Jesus, Multiple Sclerosis, Stress and MS on April 16, 2014
I’ve mentioned that I have MS, but be confident that I only mention the relevance again because I realized as I’ve blogged, I’ve failed to explain not only why I believe in God and have a relationship with him, but also why I continue to believe. God has stretched my faith over the years, but most noticeably during the last two. The first time was over a decade ago when MS side-lined me by placing me in a wheelchair. Back then, If I wanted to remain an active part of society, a wheelchair was mandatory for outings like a trip to the mall or for supporting all my family and friends who obtained donations for and walked with supporters of the annual MS Walk. Being forced into an uncomfortable position was humbling. I hated asking for help, but my circumstances muscled me out of my comfort-zone and created a much-needed level of humility.
I was in a wheelchair for a few years learning to give-up everything to God when I stumbled upon information that God allowed to be used to improve my health and essentially over time placed my MS in ‘remission,’ which was faith test number one. I was grateful that God allowed me to find the information, but it didn’t take me long to start taking everything for granted, like the awesome miraculous healing that I received, like the ongoing physical help I received from family and friends when they pushed my wheelchair, like the encouragement God provided when I was in my pit of despair. Within a year of God healing me, I failed to make my personal devotions and prayer time a priority and elevated myself to being too busy to make time for God. I became both arrogant and ignorant for esteeming myself so highly and thinking that if I hadn’t located the healing information, MS still would have gotten better because I’m Jenn and I’m…awesome. Shame on me for over-esteeming myself when I should have praised God for a priceless blessing!
Fast forward several years to 2012 when we were in the process of buying a home in Nevada and it was shortly thereafter, that my husband and I began having marital issues. All of this background is necessary to explain that God was again humbling me and drawing me back to him because I had placed God ‘on-hold,’ but was beginning to recognize that by not allowing him to guide me daily, I made unwise decisions. Also by not allowing God to provide my path, I became as much part of the ‘problem’ as I had determined my husband was. Could I get another shame on me?! It was plainly obvious my husband was making bad decisions, but I could have just placed my faith in God, that the Holy Spirit would convict my husband instead of Divinely anointing myself to be God’s chosen messenger to convict my husband. I should have asked God to guide me in the situation because although I was late getting on board with GOD‘s plan, He worked through both of us and is continuing to work in us. And praise God because it was only because of his Divine intervention, obviously minus my misguided help, that we are still married and committed to remain that way and work through issues instead of giving up and becoming another statistic, which was faith test number two.
I’ll fast forward again to when my husband’s favorite job-to-date was eliminated as the organization could no longer afford to employ a graphic designer. It was almost immediate after losing that position that he felt God telling him that we should return to Washington. My husband sharing that piece of news was the best thing I’d heard since we moved to Nevada because it was an answer to prayer. I’ve never felt settled in NV and with each challenge presented, I felt it was ‘just another’ consequence of not seeking God prior to moving a few years ago. If we had waited for God’s leading, we likely would not have moved instead of being lead by our own selfish desires to get away from the surplus of Pacific Northwest rain. So, since last October, moving and my husband locating work has been in our daily prayer. He’s applied for many positions between where we live in NV and where we want to return in Washington and there’s been little response. My husband has built a very strong resume, but God hasn’t opened any likely doors that would accommodate his background or even any unlikely doors for positions he could perform with little or no training. The last six months have created a stronger faith in God for both of us because when his unemployment benefits run out, that’s it. As in the income is final, at which point we’ll be dependent on my small disability income. As this is a tad scary, our current set of circumstances has enveloped us in faith test number three.
One may wonder why I don’t work. My skill-set within the financial industry became null and void when those attention-to-detail related skills were what ultimately required me to take a short-term leave-of-absence only to cause permanent disability. My husband is the bread-winner and actively pursuing employment every day. During the last six months, while he’s been applying for employment, I’ve been packing the house. I’ve been boxing-up our belongings because the fact is that in April, our income is final with a limited number of days before we’ll have to be out of our home. Have I mentioned this is a tad scary to be packed-up with nowhere to go? Our home now is bare-bones with only the empty larger pieces of furniture remaining in the house as they’re too heavy for us to move to the garage. Shelves, drawers and nearly all cupboards are packed with only the essentials available, which means that at any point, we’re probably close to 98.5% ready to load a moving-truck and start the caravan north. My husband’s final unemployment benefits arrive next week and our six-month safety-net will also be dried-up, which also will nearly empty our savings. And there is nothing indicative that allows us to start creating an action-plan. I think a typical person would be in the midst of a severe panic-attack and scared-to-death of our situation, but as the drop-date has hovered closer and even closer, God has given both of us a tremendous sense of peace. The adage that ‘God meets you where you are’ has been confirmed over and over through this and more recently, even more consistently. Yes, we’re clear that people think we’re ignorant and foolish for believing in an unseen God. However, understand that because God has already proven his faithfulness in healing my MS, in healing our marriage and providing an abundance of answers to prayer for family, not to mention providing significant guidance throughout the Bible(not that He needed to), combined with the fact that we are doing what we’re supposed to in seeking him and praying for answers, that we have no reason to doubt God’s promise to provide a break-through. Jeremiah 29:11 says, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”
We also believe that God has allowed my husband to remain unemployed so that we would have the time to get into more positive habits of daily devotions and prayer time together, of which we’ve taken full-advantage. Our daily devotions and prayer time has further solidified our spiritual walks. Now, if my husband played video games and did nothing of value each day, then there would be a problem having faith while doing nothing that promoted faith, but as that is not the case, we remain faithful in believing that God will soon provide the financial means to get us back to Washington, since it’s clear that’s where He’s guiding us since He has not opened a door to work in Nevada. Each day we see daily email scripture subscriptions and at church every week, we hear a much-needed message that relates to waning faith, which is ultimately enough to help us stay the course and energize us to ‘keep the faith’ another day as we continue to trust in God. Back when I was learning to trust in God, the following became my ‘go-to’ source of encouragement and still remains, Isaiah 40:31, “But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” Trusting in God also means trusting in his timing. God is never late and He is always, always on-time. We have placed our trust in God about this entire situation and look forward to and are praying that God would be preparing us for whatever blessing is on the horizon.
MS retrogression…
Posted by crusaderjennblog in Faith in the Midst of Illness, Living with MS, Living with Multiple Sclerosis, MS, MS Fight Club, Multiple Sclerosis, Nervous System, Neurological Conditions, Relapsing Remitting MS, Women with MS on November 2, 2013
When the second exacerbation occurred in ’97, my neurologist wrote the prescription for my first CRAB MonSter treatment. Those of you in the know, understand the acronym CRAB stands for Copaxone, Rebif, Avonex, Betaseron and my Neurologist prescribed Avonex. The idea of a weekly injection was inconvenient because I was determined to fight this MonSter on my own, but because of the administration of the drug and its side-effects, it became a couple’s issue. Avonex was designed as an intramuscular injection, therefore, the needle was longer and thicker for going directly into the muscle.
Among the onset of symptoms with the exacerbation, was a slight tremor. I was right-handed and of course, this tremor affected only my right hand. The tremor-like symptom has forced me over the years to become ambidextrous, but at the time, doing the injection for myself was not an option. The tremor did not play nice, nor did it allow me to accurately inject and by default, my husband’s steady hand made more sense for completing the weekly ritual. Avonex resources were “dialed-in” and provided us with drug prep training and administration training so that both of us were entirely comfortable with the whole Avonex process before we were ready to inject on our own.
God bless my husband for embracing the training and practicing the process until he was ready to inject that (what appeared to me at the time was a 14 inch) needle. Realistically, it was only a couple inches long, but injecting something into a loved-one that would ultimately cause pain was very different than going into the doctor’s office for a routine, but somewhat impersonal flu-shot, for example. Because of the tremor, I had to resign myself to allowing my husband to be my care-partner, which was something I have embraced over the years, but at the time, felt as though my independence was being ripped away from me, without my permission and happened way too early since I was only 23 years old.
The first couple of solo injections were supervised to ensure nothing was overlooked. In 15 years of medications, praise God that there has not been even a hiccup. I switched from Avonex in Spring of ’01, but the ritual went like this: we washed our hands, my husband swabbed the vial of liquid with alcohol, extracted the liquid with the syringe and injected it into the other vial to dissolve the pill-like substance of Avonex from its original form, I bared one of my hips in the mirror, marked a spot with a crescent-like nail imprint, cleaned the spot with alcohol, waited for the alcohol to dry and my mind greatly increased the length of the needle and syringe. Truthfully, it was not excessively long when he injected the Avonex.
With the knowledge that Avonex was an interferon drug and was prone to offer flu-like symptoms, we determined that the injection should be Friday night so that I might sleep through the flu-like side-effects and wake Saturday morning, ready to tackle the remainder of the weekend with whatever we had planned. But God, in his desire to make me slow down said, “Not so Fast, Missy.” The lesson was:
The whole thing was the first of many lessons over the years that God used to teach me to recognize that I must be flexible, for myself as well as for family and friends. The flu-like symptoms rendered me useless for several hours. In the beginning, I fought the symptoms, but in my stubbornness, I made myself worse for not allowing myself to take the much-needed rest that God was trying to show me was mandatory in order for me to improve. It took a few years, but the situation was the beginning of many lessons in the realization that nothing I did would ever control the outcome of anything, especially that of my MS’s debilitating status.
Beginning MS
Posted by crusaderjennblog in Faith, Faith in the Midst of Illness, Living with MS, Living with Multiple Sclerosis, MS, MS Fight Club, Multiple Sclerosis, Nervous System, Neurological Conditions, Relapsing Remitting, Women with MS on October 24, 2013
The symptoms that led up to my diagnosis in October ’94 were short-lived as they lasted only a several weeks and subsided before winter in December. That first glimpse of MS was minor in comparison with the diversified MS related issues I experienced later and will address in future posts.
In ’94, stress was not something that I controlled successfully, but the following several months were uneventful and then ’96 was a fantastic year because late August, I met my husband. During early dating, he shared some news about a childhood friend who was diagnosed with MS and as I had not yet shared my own diagnosis, I determined God presented the opportunity and I utilized it. I related my situation and his reaction could not have been more ambiguous, which I mentally assumed indicated I would not hear from him again, which was fine as I liked him, but there were no deep feelings involved and I was content with my job at the bank.
God had other plans because we continued dating and then within only weeks of my “MS news,” he became more serious. I still was not convinced that he was settled with my news and I declined his proposal six weeks into our courtship. (My Mom’s cousins who are sisters both have MS and I did not know the older sister well, but the family was aware of her husband’s reputation prior to her MS complications related passing), so in my mind, I was protecting myself from future hurt. I explained this to soon-to-be-husband and also that because of MS, I was afraid to have children so I would not be in his way to have a family. He was a tad upset when he explained that he fell in love with me because of my strength, my faith and my sense of humor. He also explained that he didn’t want to marry MS, but he wanted to, “Marry a beautiful woman, who happened to have MS.” [Everyone sigh, “Awww!”] And proposal attempt number two was accepted.
He planned the wedding and reception. No, he did not suggest anything like beer-pong or peanuts on the reception tables, but before he planned anything he asked if I would rather have a house or a big wedding. Duh! A house! So we chose to do a small wedding with only family in attendance and bought a house six months later. I was relieved of wedding planning stress, but buying our first house brought on MS flare-up number two during July 1997. I saw my neurologist shortly after moving and he prescribed my first interferon drug for injection.
Stress-induced symptoms had returned with numbness replaying the role of Symptom Leader, prior to and during our move with moving day being the worst. Moving in 80 degree heat was challenging enough, but what I discovered further into summer is that heat is fine, but it was the humidity component on moving day that had changed everything. I can function well in 80 degree heat and single digit humidity. Less than 40% humidity presented hiccups in my strength and coordination, but exceed 75% and I am rendered useless so praise God for air-conditioning!
Not everyone with MS has the same experience so there is a massive learning curve for all of us MS patients. In trying various treatments, I discovered MS is entirely individual because what worked for others was not successful for me. I mentioned earlier that just like varying symptoms, there are several treatment options, which will also be addressed in future posts.
Diagnosis
Posted by crusaderjennblog in Faith in the Midst of Illness, Living with MS, Living with Multiple Sclerosis, MS, MS Fight Club, Multiple Sclerosis, Nervous System, Neurological Conditions, Relapsing Remitting, Women with MS on October 18, 2013
D shared she was in a battle to obtain an MS diagnosis because her non-conclusive test-results were delaying potential disease treatment. I shared that from the start of being symptomatic through all my own appointments, I thankfully obtained my MS diagnosis in less than a month at 20. My age is relevant because almost twenty years-ago, some “specialists” had an age hang-up. “Because twenty-something’s are not diagnosed with MS.”
I am privileged to know D and I pray that as a nearly two decade seasoned veteran of the disease that I will be an effective source for guidance and support.









