Archive for category family
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.
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.

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.
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.
Learning Humility
Posted by crusaderjennblog in Faith, family, Grace, Inspiration, Living with Living with Multiple Sclerosis, Relapsing Remitting MS, Uncategorized on November 10, 2016
Over the course of twenty-two years with MS and its retrogression through abilities like my choice to temporarily give-up driving at the tender age of 27, only to again be able to reclaim it a few years later -albeit with some hesitance, #loveindependencebutIvalueyoursafetytoo, and then the need to self-catheterize in public restrooms #hateunsanitarybutnecessary was mandatory because when you gotta go, always go with confidence. And then there was the necessity of needing walking help with a cane or walker and dealing with the loud and ignorant judgmental heckler’s (stangers) comments, let’s call a spade a spade, #grumpyoldcodgers being bullies simply jealous I obtained the last handi-capable parking spot, or the accusations that I “faked” using various devices for good parking, but the most influential, yet one of the most difficult to accept component was accepting rides to appointments from well-meaning #friends and #family.
These were all contributors that #God used to help me absorb the much-needed lessons of being humble. #lessonoffaith Thank you, Lord for being patient with me. #godnevergivesuponus Thank you also to friends for your help and thank you, #Jesus for teaching me to learn to simply appreciate a friendly act of service. I don’t recall just who interrupted me in one of my misguided tirades about people boosting their own egos to offer to “help the cripple.” Was I that bad? I know it’s hard to believe, but yes, Jenn is #stubborn, and I was likely worse than I imagined because it was in my head that I believed most people were fake.
And I often revert to speaking about myself in third-person when I get frustrated. #oldhabitsdiehard To mentally turn each offer to help, into an ego boost for themselves. A lesson I’ve been learning is to accept things at #facevalue instead of trying to read between the lines for some (but likely not there) hidden meaning. Talk about being a mental-case. I might most definitely resemble that. Ever heard, ” When you worry about what others think of you, you’d be surprised how little they do.” Whoa. So as much as I think people want to make me feel a certain way, they don’t. I ultimately control how I feel and most people have better things to do than manipulate ways to be condescending. Again-whoa. Jenn’s learned it’s much easier to believe an offer is sincere. If it’s not, that is not my problem because I should not be required to further analyze anything.
I detested being required to depend on others to #chauffeur me to doctor appointments, and because of the increasing menu of my many worsening #relapsingremittingMS issues, there were many of those to see various specialists like a speech pathologist to assess learning to speak again, a physical therapist to help me re-learn to walk, a urologist to learn how to safely #catheterize in an emergency, just to name a few things. Because of the many basic abilities I had taken for granted, the lesson to give-up stuff and be forced to accept and later embrace a new practice in order to get what I needed was somewhat lengthy. You can imagine teaching an old dog mule-like human some new tricks.
Yes, those first couple of years being disabled before turning 30, even I was a pain. You better believe it. I was that old dog. #stubbornasamule Although it probably took longer than was necessary since I was so resistant to accepting help for so long, but once this girl got-it, it became easier and easier to just say, “Yes, I appreciate your offer to help and thank you very much. What day would be best for you?” Another challenging situation was when people offered to buy or prepare us a meal, drop it off and expect nothing in return. Because of my limp and gimpiness, I am a klutz and when I shattered my ankle seven times slipping on the driveway in ’07, several brought us meals. Again, thank you for helping in a big way. But, I very very briefly got back in the mode of analyzing people instead of just saying, “Thank you,” but then quickly realized this was a meal I could in no way prepare for B #husband #love before he came home from work. The moral of the story is accept someone’s offer to help and don’t forget to say thank you and send a thank you note. Those became my new rules. Much easier. And no further analyzing. Whew! This girl’s brain needs a rest. But today, I’m asking for grace while I’m getting the I-V full of #MS treatment as I try to coherently share my thoughts. Thank you in advance.
Speaking of friends, there’s a generous couple from #church who have offered to provide dinner for us as I go through this #Lemtrada #MS treatment. Thank you to friends like this who “get-it.” Instead of of putting the responsibility on us to, “Just let you know if we need anything.” This couple called yesterday and asked if they could bring us dinner tonight. As a matter of fact, that is precisely how such an offer should happen. Those are the best kind. It’s humbling that people would do this for us. It might seem silly that I really cannot do much, but I cannot go anywhere or even try to exercise while the I-V is attached so here I am several hours a day getting treatment. Maybe compare it to being on a long flight, sitting several hours and also being at the doctor’s office for vitals monitoring.
💙💚💙 GO HAWKS! 💙💚💙
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.
Baby-Girl is 9 months
Posted by crusaderjennblog in adoption, Babies, Bible, Faith, family, Grace, Inspiration, prayer, Uncategorized on October 26, 2016
And in mid-February, when we were given custody of a precious seven point something baby, I swore to B and everyone else that I could easily care for and do this #foster-parenting thing without falling in love because Baby Girl would be with us only a couple of months. Which wasn’t enough time to #fallinlovewithbaby I didn’t birth. Right? And besides, it’s plenty of time for Baby-Girl’s mom to make-up her mind to get her act together and get her baby back because she can’t stand that someone else is loving and raising her daughter. Right? Right. How cocky? Ignorant? Ridiculous? All of the above, was I to think I had it all figured out.
How could I be so naive in thinking being home with her all day, every day, to take care of and provide for her needs and with each task look into her gorgeous eyes to smile at her, hold bottles for her, change diapers and tell her sweet-things about herself, like how beautiful and precious she is many times each day, would not allow us to bond? #mommybabybonding Right? Right. Come on, Jenn! Everyone, please do me a favor and do not let me pass “Go” or collect $200 because I was an imbecile for thinking the way I did. But, I really did believe what I believed, that I could do this without becoming emotional or attached. Step-aside #Girl-Wonder. I was successful in referring to myself as Miss Jenn for a few months(what the two and three olds called me) when B and I taught Sunday School and how those munchkins in our little class referred to me. But then Mother’s Day arrived and B said, “You know you’re Mommy to her, Jenn.” And I was like, “Um, no, we’re waiting for a boy so I can’t be mommy until we get him.” But then recognition dawned on me with B’s words and I finally got it. That for our baby girl, I am Mom.
Those snapshots with which God provided for me more than 18 months ago, urged B and I to #pray and later go through the licensing process of becoming foster-parents to adopt a little boy. Except I tawt I saw #Tweety Bird, thought I saw, assumed based on the limited snap-shots, that I really envisioned a little boy. With those repetitive snapshots of me with a child, B with the same faceless child and us with the same curly-haired, but faceless lighter-skinned child, I kept seeing a faceless three or four-year-old and what I thought was a boy with non-descript clothing and brown curly hair and assumed we’d be sharing our home with a little boy. Silly me. The first clue should have been when our licensing social worker called us in February to see if we’d be willing to take a baby-girl? Read that as God’s timing, but I still didn’t get it. We agreed because we thought it would be great experience to care for a baby, although I personally didn’t believe a baby girl would be with us for very long while our real child (unknown boy) was waiting for us somewhere out there #AmericanTail.
And then the real eye-opener happened October 5, God gave me a clear thought I believe was absolutely from him because I never would have considered such an absurd thing on my own, “What if you were mistaken in your interpretation of those snapshots, Jenn?” asked God. What?!? Mistaken? Me? I say absurd because I might resemble one of those people who can become completely absorbed in my limited tunnel-vision. So, here’s the thing… I was looking at Baby-Girl, aka Butter Buns, aka several other cute nick-names and really studied her as she was trying to crawl, when the undeniable hit me. #Lightning “What if I was mistaken?” thought came to mind, courtesy of my merciful Savior because I am stubborn and it might take me a few tries to really GET something. “Think, McFly, Think!” #BacktotheFuture Baby-Girl is lighter-skinned with brown, curly hair…
Thank you, Lord for opening my eyes. Because as I said, I never would’ve considered without inspiration from someone higher than me that we already had in our custody, the baby in those snapshots. Yes, contrary to the fantastic perception my devoted readers already have of my unshakable confidence [read as mule-like tendencies], I might resemble one who struggles with tunnel-vision. Because no one and by no one I mean I don’t get the important stuff wrong. Well, not very often anyway. Welcome humility and I’m going to need your help here for an indefinite residency.
Do you ever think you have it all figured out, only to receive a figurative slap upside the head and find, you might have been wrong?
GO HAWKS!
Jenn
