Posts Tagged MS
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.
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10 days and counting…
Posted by crusaderjennblog in Bible, debateable, Faith, Faith in the Midst of Illness, health, life, Living with Living with Multiple Sclerosis, Living with MS, Maintaining Faith, prayer, Relapsing Remitting MS, Uncategorized on December 5, 2021
Which means a week from Wednesday, my ENT is surgically removing the misbehaving glands of my parathyroid, or at least removing that portion of it. Which he’s been doing for other patients. For 30 years. For patients who share a similar list of symptoms. I’m anxious to be rid of the nasty culprit. That has flipped my life in topsy turvy fashion, only to hide itself from being a team player and resist showing its entire self in medical photos. Even the best radiology center could not obtain pictures that revealed, nor was their biopsy conclusive of what was going on. However, the ENT continued to view and review a few particular images of the one gland he could see out of 4 parathyroid glands, which told him to do nuclear testing which made my parathyroid light up. No, I was not lit up like a Christmas tree. But, what my ENT saw as it was plainly bright, was enough to order several more tests to confirm his suspicions and order surgery following obtaining those additional tests to be completed as soon as possible.
The right parathyroid gland had a sizable dark spot that proved to be an adenoma. Although benign, my ENT said tumors still cause disruptions in patient’s lives because where there is 1 adenoma, there are often 2 so doctors check for another in all the glands when they do surgery. Disruptions like a patient’s gate change and hobbling around instead of walking normally, like testing positive for osteoporosis at a younger than typical age for diagnosis because her body decided to leak calcium, like the bone density scan additionally proved that because of the calcium loss, that my bones are losing density and could potentially become so brittle that tripping once more on the stairs could cause a broken bone or a few plus another few fractures.
My Endocrinologist understandably prescribed a calcium replacement drug that I started taking in June, but my ENT, whom I initially saw in early October, because of adverse side effects, wants me to stop taking the drug asap. When I was given the prescription, I did research and despite the risk to lose teeth and calcium, while also gaining calcium and bone density, I filled the prescription because there are other drugs out there that offer positive effects, but they also yield comparable negative effects. Six to one, half dozen the other…
That said, I am keeping December’s appointment to remove some of, if not all the parathyroid.
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Here we go…
Posted by crusaderjennblog in Bible, Faith in the Midst of Illness, family, Football, fun, Grace, health, Inspiration, invisible disease, Jesus, lifestyle, Living with Living with Multiple Sclerosis, Living with MS, Maintaining Faith, MS Fight Club, prayer, Relapsing Remitting MS, Stress and MS, toddlers, Uncategorized on November 14, 2021
This happens every year. This year I think the inauguration of Autumn baking thoughts happened when our daughter and I were watching B carve Halloween Pumpkins for our little family. But dancing skeletons evolved into dancing sugarplums. Or perhaps it was watching Charlie Brown’s great pumpkin that evolved into musings of pumpkin bread Christmas.
I love the distraction of post-Halloween plans. I mean I put up a few decorations for Halloween, and I think some decor is fun for the Holiday, but I see some people do an overload of focusing on evil and finding that humorous. For example, each year the neighbor behind us picks some dark theme and decorates accordingly. This neighbor is technically not on our street. But the upstairs master bedroom has a deck/patio that can view our backyard. Some years ago, with the rere-lease of It, for Halloween, the neighbor hung a massive decorative sheet from his upstairs bedroom patio so everyone at the end of our street, or anyone who dared take a detour down our street would have a clear leave nothing to the imagination view of Pennywise and all his bloody-faced glory, having no regard for little ones who might be traumatized by seeing a glimpse.
Unfortunately, when another neighbor asked them to take it down and to keep in mind those little and innocent trick-or-treater’s eyes who should be protected from seeing that, the neighbor saw himself as a self-appointed messenger doing everyone a favor and said, “Mind your own business, besides kids will see it eventually.” Lord, have mercy! We had the displeasure of seeing that nightmare one Halloween, but thankfully on the flip side, those same neighbors have not used their back deck since then to hang anything.
Now, I am not trying to portay myself as an innocent. I read Stephen King as a teenager and an early twenty-something, but my time reading dark literature was satisfied after I finished It. My late Granny took all five of the grandkids (I am the oldest) to the circus every year as youngsters when Ringling Brothers were in town, so I grew up liking clowns. However, the novel about Pennywise changed my appreciation of clowns and they ceased being fun. That novel really changed my simplistic view because apparently, clowns are not always happy.
Who can explain the nonsensical ramblings of a Jenn? Certainly not I. And that may or may not have any correlation to anything, When all of a sudden, my little brain thinks snowmen, more specifically, giggling about Olaf’s sweet ignorance of being a happy snowman in summer. And then there’s the fragrance of cinnamon inspired goodies like baking gingersnaps, pumpkin bread or snickerdoodles! Yum! Maybe it was because we had a short ‘bout of cooler temperatures, that reminded me of winter, though I’m about three weeks early… which then inspired me to think snowflakes again and cause me to bake because why wouldn’t I associate gingersnaps with autumn? They go together. Then winter solstice and just a few days later Christmas? Or maybe it was when my 2-year-old handed me a book to read her – the story about how that green thief who stole Christmas.
Praise God for all these distractions with my surgery coming up so there’s zero opportunity to fixate on worrying when I know God’s in control.
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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.
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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?
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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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I am a work in progress…
Posted by crusaderjennblog in adoption, Babies, Bible, debateable, Faith, Faith in the Midst of Illness, family, Funny, Grace, health, Humor, in the kitchen, Inspiration, invisible disease, Jesus, life, lifestyle, Living with Living with Multiple Sclerosis, Living with MS, Living with Multiple Sclerosis, Maintaining Faith, Marriage Encouragement, Mommy’s musings, MS, MS Fight Club, Nervous System, Neurological Conditions, prayer, Relapsing Remitting, Relapsing Remitting MS, Stress and MS, Therapeutic House-pets, Uncategorized, Women with MS on April 3, 2021
I was blogging with somewhat of a purpose, but then I started analyzing and reanalyzing every stinking thing I do and do not do. I feel like a mouse trapped in a maze because I have been all over the map trying to figure out what my point is and answer the million dollar question of why do I do what I do? I’ve ultimately determined that my blog is for me. When I began blogging some years ago. I had hopes illusions of reaching a massive following for those with MS and/or their care-partners and even more of those who were interested in knowing more about being a Christ-follower in the middle of battling a debilitating illness and trying to mainfain faith and trust that God was still good when my Multiple Sclerosis was spiraling out of control.
And it was. I went from being for the most part able-bodied and independent to having to learn to self-catheterize when I couldn’t empty my bladder on my own. Using a cane became obsolete when I had to graduate to using a walker and finally upgrade to a wheelchair all within six months … and back then in October 2001 when I was struggling in my position and could no longer do my job as a consumer loan officer, my neuroligist said I likely wouldn’t see my 30th birthday, which was still some years away. I’m briefly explaining all that to get around to my point that I am going to blog for me because I enjoy writing. If anyone follows my non-nonsensical gibberish or rantings that get tossed around in my mind, then sure, I hope you enjoy yourself, are encouraged or at the least, can smile at something said, but don’t expect anything Nobel prize worthy. I’m writing for myself as it can be therapeutic. My story is not debateable because it is MY experience and I will not apologize for MY convictions. Consider that fair-warning.
As a Christian I do get mad, upset or annoyed when unexpected circumstances or events (like bad health) put a hiccup in MY plans. Really? Indeed. Because I am a control-feak extrordinaire, but am always trying to give up my own illusions of what I want and instead work toward fulfilling God’s plan for my life. I am a sinner. That’s not a badge, just a recognition that I am so far from being perfect. I have made some massive mistakes that years later, I still struggle with forgiving myself. I am a Christ-follower. There is a difference because many label themselves as Christians, but they don’t have a relationship with God, pray etc.
Be confident that that is not a judgement of anyone because only God knows an individual’s heart. I am actively seeking God’s will for my life on a continual basis and although I mess-up many times every day, I try to stay on-track. I have a lot of Biblical head kowledge, but am trying to get myself to having more heart knowledge. That is not a pat on my back for ‘intentions’ because intentions do NOT count or provide any points for scoring if that’s how you grade yourself. 2000 years later, Jesus still remains the only perfect human. Perfection is impossble, but God is always at work in people’s lives to refine us into who we’re supposed to be for his purposes.
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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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Our baby update and other stuff
Posted by crusaderjennblog in adoption, Babies, Faith, Inspiration, Maintaining Faith, MS, Uncategorized on August 11, 2016
We still have custody of Baby D. She turned six-months a bit ago and we started giving her solids. This child is a pig, disguised as a baby. Lol. No, really. If her current length is indicitive of height as an adult, she’ll definitely be tall. She smiles and laughs a lot with us and gets a lot of enjoyment from watching our resident critters. In recent days, she’s started to look like she’s going to crawl, but then changes her mind to flop onto her tummy or turns onto her back. Because I guess the effort to crawl is just too taxing for a six-month-old. I’m not by any means trying to predict what the end outcome will be for the end-story of her living with us, but as we’ve watched Baby D thrive and her birth-mom refuse to get clean, things might be leaning toward Baby D becoming ours.
We’ve had many changes in addition to Baby D joining our household mid-February. In March, we said farewell to our elderly pup, Ming Foo. Then early spring, after much prayer, God lead us to leave the church we attended the last three years and taught Sunday School to start-over at a new church. We were having a rough time creating a network of friends we could depend on to mutually encourage in our faith and trade baby/child sitting. Then in July, we had to say goodbye to another pet, our elder kitty, Hi-5, a polydactyl, who found us as an unclaimed stray in ’01. We’ve grieved all our pets, but his loss has been especially rough as he was the final pet in our original brood, that my husband and I adopted in our first home close to 20 years ago.
You know I have MS, but something you don’t know is since roughly the beginning of this year, I’ve kept my eyes on all the available different/new MS treatments. I’ve been doing injections since ’97, but I’m tired of injections. I want something that doesn’t require a needle, but based on side-effects, I’m not ready to deal with the issues one of the pill options might give me. My neurologist calls it ‘needle fatigue’. The first 15 years were daily injections, not including the weekly B-12 injections. If my calculations are accurate, I’ve done nearly 8,000 injections to myself in the last 20 years. It’s no wonder I’m tired of needles! Not to mention all the lipoatrophy that’s become obvious as a result of the limited menu of injection sites available… So, I’ve applied to be a candidate for a newer MS treatment. We pray about pretty much everything and have been praying that this treatment will be approved. This newer treatment has provided quite a bit of encouraging results. It’s an IV treatment for five days, wait a year, do it again and that’s it. As in no more MS related treatment IV’s and no more injections! EVER! Yay! What an incredible blessing this could be!
Being full-time mom for Baby D, settling into a new church, dealing with Baby D’s mom accosting me, losing pets, researching a new MS treatment, family related drama-for which I’ve been blamed and another sick pet have all contributed unwelcome stressors and I fell backward into white-knuckling everything once again, fearing everything. As B and I were talking last night, more than anything, this compilation of stuff on my plate with no resources to whom I can reach-out for a little help, has made it very obvious, God has sustained me through all of it. And the thing with Baby D’s mom getting in my face, God protected me through it because I recently found out, the mom’s record includes assaulting people. Thank you, Lord for protecting me and therefore, us because Baby was just sitting behind me in her carrier, protected when that happened.
He has a plan and I need not stress about anything: my life, Baby D, my husband, our pets, a new treatment, etc. I’m hopeful, but I also must rest in his devine answers and timing.
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