Archive for category Jesus

I went to the doctor…

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.

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Strike 3 and the right parathyroid is outta here!

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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Here we go…

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…

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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Ongoing Variables

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…

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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I might need a wig

It’s been a while since I completed phase 1 of the #Lemtrada #MStreatment.  I started the Lemtrada early November 2016 and completed in five days.  With the many post-treatment symptoms I’ve experienced, I’d be lying if I said, “I have no regrets.”  I have asked myself, “Was it worth it?  Were those five days with an I-V an investment? #doubt  A small price to pay for a hopefully better, but not guaranteed future down the road?  And to be honest, I have gone through many dark episodes weeks of regretting my decision and desiring the opportunity to go back and do it over.  As if that was possible.  Well, I have regretted following-through and getting the treatment because of consistent lingering side effects like vertigo, muscle weakness, excessively painful tummy/gut aches and now hair loss.  In fact, my poor head is losing hair by dozens of strands each time I brush.  #chemo  I’m not joking about the chemo.  The Lemtrada is a diluted formula of it.  And those gut-aches?  They’re so painful, that at times I’ve prayed for God to bring me home to him so the pain will stop.  But #reminder it’s now been going on four months since I’ve had to give myself an MS drug injection.  Small blessings?  No!  Gi-normous #blessings.

That still remains the biggest adjustment as I’ve gotten out of the habit of doing shots, but I still question myself.  Have I have done my today?  No!  And then, “You’re done with shots, Jenn!”  I really do not do them any longer.  November 5 was the final self-injection.  Yay!  So, yes I regretted doing the treatment, but remind myself of the benefits.  1. No more injections.   2.  Rinse, Repeat to infinity and beyond.  3.  #Nuffsaid.  And then there’s the whole thing with my epidermis thanking me for seeking a different treatment.  No, really.  My skin and husband too, continually thank me as my skin has been able to work on returning much of its softness and a lot of its elasticity.  Yay!  #vanicream  Only the best facial moisturizer and body cream I’ve ever used!  Now here’s the really bad part…  But, before you read further, can you handle my open book?  My #honesty?  My #transparency?

With those aforementioned painful, side-effects lingering, I’ve doubted God.  I’m not by any means proud of my doubts during these rough times. I have questioned God about his goodness and good plans, which then causes me to question my own eternal status for questioning God.  #believe  Has my performance been up to par, Lord?  Have I doubted one too many times, #Jesus?  But I know better.  #faith  In Ephesians 2:8-9 NIV states, “For it is by grace you have been saved, through faith – and this is not from yourselves, it is the gift of God – not by works so that no one can boast.”  A reminder that no one goes to the Father, but through him.”  I’m a sinner, but God is good.  Very good.  How dare I question whether I’ve earned his mercy because it’s freely given to ALL who repent.  #grace  So, I’ve failed to update anything in a long time because I haven’t felt very good in long time and lost a lot of hair.  I’m not bald, but my pony-tail over the last few months has diminished to about 1/3 of it’s prior thickness.  Reminder that hair can grow back.  I’m aware, I have nothing on those battling worse conditions, but please just stop comparing conditions because they are all so different.  Yes, some are worse, some are better per se, but when you’re in the middle of a chronic fight for your life at times, it’s challenging to see that light that’s become so faint, you almost miss seeing it, at the end of the dark tunnel.

Here’s what happened:  This morning I got up after having a really bad day yesterday filled with pain, self-doubt, about those alleged promises from #God, that will never happen (the doubts in my own head).  My mental state has been rough and this morning as I was getting Baby Girl ready for the day, I was pretty resolved to stop going to church, stop believing, etc. because I’ve become very weary in maintaining my faith.  It’s exhausting to smile when it seems pain is the new “normal” each day,  I know I should eat something, but there’s nothing enticing about any type of food, when I’ll likely throw-up again.

I want my life back.  I want to at least exist as things were prior to treatment, when I could walk only so far with MS, but it was predictable and I already knew that a short walk in the morning would require a half hour of rest, instead of the new normal to the rest of the day and the following morning.  A tad excessive?  I mean, come on, Lord!   This new normal sucks!  At least going into and following treatment, I had maintained my #faith through consistent #prayer and reading my Bible.  But after some weeks of dealing with pain, weakness  and queasiness, I became discouraged and my #prayer #Bible reading habits became easily dismissed most days.

Back to this morning, it was rough.  I didn’t have the energy to battle #Baby Girls’s one-year-old antics when we and by “we,” I mean I FINALLY got her through eating most of her breakfast after smacking the utensil full of food many times for those food donations to be clean-up by the dog, cleaned her-up and took her out of her high-chair and put down to walk on her own and play with her toys.  I finally had a #quiet moment #meditation to sit at my desk, while Baby Girl was playing just a few feet away, to look at my iPad.  The first thing that greeted me was a notification that showed me the verse of the day.  Hebrews 10:35-36 NIV, “So do not throw away your confidence; it will be richly rewarded.  You need to persevere so that when you have done the will of God, you will receive what he has promised.”  Wow!  That was precisely what I needed.  #hope

God has fantastic timing, doesn’t he?  He’s always on-time and never late.  Just when I was ready to give-in to circumstantially-driven doubt, He showed up to remind me of these words I’d forgotten, but read many times throughout the years.  I needed to reread that and I’m so very #thankful to you Jesus for reminding me.  #peace

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Too big to not share

With everything going on and my ever increasing #MSinducedmemoryproblems, I have to share this while I’m thinking about it or “POOF!”  it’ll be gone and I’ll forget again because #MultipleSclerosis is playing hardball with my short-term memory retention these days.  We’re at T minus 10 days until I start the #Lemtrada round one treatment.

Monday morning last week, B #husband #love texted me shortly after he got to work to say that he had some big #news and would share when he got home, but I was busy with the #baby #love and then getting #cleaning stuff done around the house #clean #addict and then POOF, my husband’s text was forgotten!  That thought was gone and I didn’t think twice about it.  I had dinner ready and Baby was fed when B came home, so he changed his clothes #relaxation and then we immediately said a dinner blessing.  He was anxious to share whatever it was and I’d forgotten about the big news so I hesitated and put the burrito #dinner back on the plate.  At his job, B’s an #art #mentor for mentally handicapped students and a student’s mom had called first thing that morning to let the staff know her son would be home sick that day, but as long as B answered the phone, Mary said she had something to share with him.  She shared with B that a few days before, #God had placed on her heart to fast and #pray for me, but she didn’t know why.

Now, my #health is generally not a topic of conversation for either of us with strangers, especially for B at work, where unless I’m experiencing a symptom like vertigo that has required him to be home to care for Baby, other than a few people, no one really knows the rough issues with my #relapsingremittingms that rarely require him to be home, thankfully.  B said that at one point, he had shared with Mary, who is also a #Believer, my testimony of walking again #miracle after being in a wheelchair for years.  You must remember I do not cry, but my eyes occasionally sweat, mostly from allergies #denial.  B then shared that a few days after fasting and praying for me, God told Mary I was going to be #healed.  Initiate single eye-sweating program.  I felt very #blessed that a person I met only once, might feel a burden to fast and pray for me, but I said nothing, then he repeated, “Jenn, Mary said God told her you’re going to be healed soon.”  Level-up.  Initiate inadvertent dual eye-sweating sequence…

So, in no way did I believe I could deserve something so big since I already received such a significant blessing years ago allowing me to walk again #amazing.  It’s like I think my blessing bowl can be filled only once in a life-time.  It’s definitely a process to consistently stop negative thoughts and immediately redirect and recognize those thoughts are inspired by the enemy telling me, “You don’t deserve ___.”   I must stop such thoughts many times each day.  My husband is fantastic to gently remind me that #Godismerciful and doesn’t use a pay-for-play method of forgiveness or blessing.

What?!?  But I already was healed from having to depend on a wheelchair 11 years ago!  #miracle  Oh no-those sweat-glands in my eyes failed in a big way and my eyes began sweating profusely.  I was confused how I was deserving of such a magnificent #blessing. I have a performance-based blessing mentality so I’m actively working to clean-out many years of negative internal-dialogue.  I am still working toward recognizing performance based blessing in no way resembles my merciful and loving Savior.  #nonsensestopshere I must be conscientious to make sure I do not repeat those methods with our foster #babyblessing,  who my husband and I very much hope to #adopt.

I always use speaker-phone so my hands are free to do other mindless tasks like fold laundry while I “chat.”  Unfortunately though, while my phone was on speaker a few months ago, B overheard everything loud and clear so there was no misinterpretation of conversation lecture verbiage about consequences I’m apparently still suffering, making B get a sour taste of that performance-based affection.  “Now I know why you operate with a pay-for-play mentality.  I’m so sorry, Sweetheart – I might get it now.”  Things might have the ability to stick and set the tone for one’s dysfunctional internal dialogue for years, but it really is changing.  #praiseGod #Jesussaves

I’m excited because as this Lemtrada treatment situation has unfolded over the past few months with God opening doors for my grant application to be immediately approved for funding the treatment, my faith steadily increasing and doubt finally gone and being at peace that although risky, Lemtrada is in fact the vehicle through which God will deliver healing as Lemtrada is the only treatment able to heal previous MS damage.  #peacethatpassesallunderstanding  This is exactly where God is guiding me and with healing, I believe He’s also preparing me for great things.  Lord, I’m ready now.  #amen

 

And of course, GO HAWKS!

Jenn

 

 

 

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Our world has been sufficiently rocked.

No, really.  Two months into the new year – by the way – tangent warning, I really hate resolutions – read last new year’s entry rant why I have never made a resolution because if I want to make changes, I just do it and do not require a calendar date to keep a countdown, keep me motivated or keep me accountable, etc.  What I did do was make a commitment to myself to become active again in addition to my existing regimen of weights and stationary biking.  I swam competitively through high school and college, but recently determined I’d do something different and start running. Because I could.  For years, I’ve been scared to try because of that whole stint in a wheelchair for five years, but got over myself and tried to run and guess what?!  I did.  My husband has always been my biggest and best cheerleader and talked me into being fitted for proper running shoes based on the correct support for our surrounding terrain.  I did get fitted, then researched price, ordered and as an added benefit, those running shoes are even the colors of my Seahawks!  Yay for me and GO HAWKS!!  But the colors were never even a real consideration.  So those new running shoes arrived and I initially wore them at the gym on the treadmill, assessed and was confident that I could in fact run.  I mapped out my running route in the neighborhood to start the following day and then God ripped the carpet from under me and said, “Jenn, I have other plans for you” when we received an unexpected call later that evening.

You might recall a previous post about a year ago that I finally shared with my husband the snapshots that I’d seen for the prior twelve plus months.  Remember?  After I shared that little tid-bit of info, B essentially sat me at the table with a bright light shining on me to question me and determine how serious I was,then after the FBI- style interrogation, he determined I was on the up and up because that’s how completely unexpected it was for B to hear me mention, “Well maybe we’re still here because we’re supposed to adopt a child.”  Eleven years ago, after the failed attempt to adopt a baby from China, when a year into the process we were declined to adopt because of my MS, the subject of children in our own home had become the topic of which we no longer spoke.  So imagine how unexpected the suggestion nearly a decade later…

As Christians we seek God’s will and pray for God’s prompting for major decisions, but with my ‘epiphany’ we were even more resolved to make sure that this vision was really from the Almighty.  The weeks following the ‘interrogation’ were filled with prayer and research and then in July 2015, we began the 10-week journey to become licensed for foster to adopt through the state.  In addition to a plethora of info, we obtained CPR/First Aid certifications,  reinstalled the pool-fencing, had two home-studies, installed the necessary magnet locks and fire-extinguishers, obtained a crib and the path was smooth-sailing, confirming yet another answer that what we were doing was indeed, God-led.

However, what had become disappointing after completing the class and list of tasks was the continued delay of getting licensed since our social worker had estimated that would happen before the new year, but we did not hear a thing for weeks later.  One of our class members had set up a closed social networking group that was created for our training class only.  Many of our class-members posted pictures of their newly acquired foster munchkins.  I may be kind of sort of admitting that the green monster had more than likely, undeniably and most definitely bit me.  Hard.  I’m blessed to have a spiritually strong husband with excellent discernment.  Most of the time I operate on logic, but there was nothing about this situation that ever spoke logic, so that overwhelming left-brain-ness went right impulsively emotional on me.  B helped me realize that the green monster’s name was “Obama” when I had this sense of missing out on my fair share, but once again my wise husband pointed out that this entire process was about stretching our faith in God’s timing by not taking control where those control-freak tendencies might have in the past.

Back to that unexpected call…  Our licensing social worker finally called in February that the center had received a baby.  A baby!?!  A baby.  A baby was never on my radar because those visions were always of a toddler.  But what then came to me was that our licensing SW said in class was that “adoption may not happen with your first placement…,” but I also thought this could be good experience for both of us.  B had those same thoughts, called the case worker, we asked many questions, after which we prayed and determined we’d pick-up that baby the following morning.   Talk about a world-rocking situation…   Most people have nine months to prepare for a newborn.  You know that whole thing of what to expect when you’re pregnant?  We had 12 hours.  But, here we are weeks later, very much operating as ships-passing-in-the night-zombie-mode, if that is a real condition.  We are sleep-deprived starved and ‘conversations’ have become limited to Neanderthal-like grunts and groans of exhaustion.  Lord, I apologize to any Neanderthals out there who read blogs, let alone have the wherewithal to take offense at my very tired sense of humor.

Next you might read about the monopoly of over-priced “Baby” targeted gear.

Read the rest of this entry »

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Engaging with people is so much work

Im not a product

Friendships require work and openness.  I’ve been very guarded where friendships are concerned because I have been open to a fault with a few who I believed were ‘safe’ only to regret sharing when I experienced their over-developed sense of superiority due to their own perfection, which apparently made it allowable for them to judge me.  In WA, I had a smallish group of females I trusted with whom I’d go out for a girls night like for drinks and music or a movie, but upon our relocation to NV, I’ve been closed-off to making more friends.  Knowing our time here is short-lived, I’ve failed to pursue making friends with anyone beyond an acquaintance level because my outlook has been, “We won’t be here long enough to make it worth the effort.”  Shame on me.  No, BIG SHAME ON ME and please forgive me for not bothering to be friends with you.

For many years when we committed to going-out with, for the purpose of cultivating friendships with other couples, we were always on time and to cancel last minute was never an option.  Although we were consistently on the receiving end of other’s flakiness because for some and you know who you are, being a flake is a lifestyle choice.  Emergencies happen and those are excusable, but failing to plan, “Our plans slipped my mind,” is NOT a reasonable excuse when you know the date of said plans.  Maybe you commit, but by committing perhaps you should always provide this disclaimer, “I commit right now, but what I really mean is I’m selfish and I’ll cancel at the last possible moment never giving a thought to any arrangements you might make in the hope that I might show-up and grace you with my presence for the evening, when my regretful decline could have given you an opportunity to do something else,” is what you should say.

But then after some reflection of last year, I have clearly become a poster-child for flaky as I have became somewhat of a borderline agoraphobic.  My home is my safe and happy place.  I get up.  I shower.  I read my Bible and pray.  I take care of our pets.  I exercise.  I bake goodies. I drink wine and even catalog it in my little black book of Wine Notes.  I read books and I might play an Ap for fun on my iPad.  I run errands as needed.  These activities became MY own little self-created-safe-zone when I determined that 15 minutes from home is the furthest and safest acceptable distance I can be from home at any time.  Our church’s small group fits that, but I’ve rarely attended any more.

Being budget-conscious and to save money, we quit using full-time air-conditioning and as a result, our home becomes suffocating hot during summer.  If it’s 108 degrees outdoors, it’s around 87 indoors and multiply that if it’s humid.  Just a touch hot and with MS, the heat renders me useless until the AC comes on for a couple of hours each morning and then again in the evening and when the AC comes on, I’m in recovery mode, which has been my ongoing excuse for not attending our small group except that now that we’re out of summer, there is no viable excuse for my non-attendance, which means that I evolved into what I detest and became a flake!  Our small group from church started a new study last week and I attended, but came home feeling convicted for many things one of which seems to appear in red flashing bold letters, “Making excuses for not attending our small group when I can during these cooler months,” or was that flashing in red just for me?

So now that I’ve explained why I have become what I’ve become, I’m actively working to change my habits.  It’s not a New Year’s resolution per se as my followers may have already read about in https://wordpress.com/post/81313185/142/ but I guess I’m reaching-out as a means of publicly recognizing I must stop my hermit-like habits, which also equates to fostering friendships and getting together for things like coffee or being friendly instead of remaining holed-up in a book or a game Ap.  Step 1 was the easiest in recognizing I had a problem.  It’s the next stuff that’ll present the biggest challenges for me because I can be very content with operating within my little world.  Yes, I know it’s not healthy, but it’s comfortable and that’s become the biggest challenge for me with our new small group study: to go beyond my comfort-zone.  I’ll keep you updated in how I fare through this what I suspect will be an uncomfortable process.

Do you have a comfort zone?  Do you have a negative habit?  Did you create a positive habit to replace your negative habit?  Or how did you overcome it?

~Jenn

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