Archive for category Living with Multiple Sclerosis

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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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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The end of the tunnel just became brighter…

When MS became more than MS with the unforseen truckload of additional health issues caused by the drug Lemtrada, I really questioned God and his faithfulness. I’m very aware there was never a guarantee that my life would be obstacle free. In fact as a Christian, it is a sure thing that God will allow trials for my own growth.

Having problems pushed me to know him better or have I reacted by becoming closed-up or anti-social?

As problems manifest, I have been prone to isolation. It’s way more comfortable than sharing anything for which folks will likely shun me anyway. So, in a sense I’m doing my future self a favor. Right? Totally. Except. God didn’t create any person to survive alone, but thrive with others to support, encourage, lift-up during times such as these. And there I was isolating myself at home, doing distance church from my iPad at home to avoid being a burden or a slow-poke with my cane or avoid questions like , “what happened?” from nosy-nellies posing as concerned people who care.

Ouch. Thank you, Lord for convicting me of being narcissistic and shame on me for doubting anyone’s intentions. That’s my normal reaction, but it dawned on me, (again thank you, Lord) last week watching church, that with all this crap going on with my health, that I have a fantastic testimony opportunity. And so after many weeks at home during church, but watching from a distance, I put on my big-girl pants and went back to church.

For an incredible reason. For B and I to have our two-year-old daughter dedicated at church. Didn’t I mention we had a foster child in our home? That we officially adopted at the beginning of August?

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Ongoing Variables

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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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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Baby-Girl aka dare I say Diva, in the making?

Butter Buns must accompany me all the time, so rest assured that when I have to go anywhere for myself-doctor appointments, allergy shots, etc., she must accompany me and I put way more effort into making #sweetbaby Ms. Buns #nickname more presentable #ooohs #ahs than myself.  Because baby cuteness factor supercedes everything.  And she is thankful for that.  Although she hasn’t said much beyond baby-babble at this point, it’s clear that she sees me as part of her #butterbunsposse,  although my presence must be silent support #unnoticed.  I am one of her #peeps for this potential #divainthemaking.  It doesn’t matter that I am make-up free for most things because disguising #wrinkles #darkcircles doesn’t matter.  But Butter Buns has standards.  For herself.  As most nine-month-olds do.

To have Ms. Bunn’s ensemble match and be #cuteness head to toe is more noticeable than if said #entourage member is wearing wrinkled clothes or make-up.  Because people notice babies #ButterBun’sPR #me.  And I don’t care that I’m wearing something so wrinkled, it appears that I just rolled out of bed wearing my clothes for a nap #tooexhaustedtoiron or looking like the early thousands called and they want their knit gym-capris back.  #letpeoplejudge.  Yes, it’s 2016 and I wear dated gym clothes #comfortable and probably more often in public than my more fashion-forward husband would like.  I’m really not stuck in a time-warp.  I just don’t care.  #priorities 

In my defense, I’m at the #gym 5 very early mornings each week to #workout a couple hours each day and be back home before B leaves for work #notagymrat, but I go to sweat, maintain strength and keep extra pounds from revealing themselves.  #gymsarenotsocialvenues  I am vain, but more than that, because MS took so much from me years ago when I physically could not work-out when I very much desired to, #motivated #5yearsinawheelchair, it’s very important that I do what I am able to do, when I’m able to do it because I will never again take for granted that ability to walk independently of a #cane or #walker or at its worst, ultimately require a #wheelchair  So understandably, years ago, petty priorities like shopping for present-day active-wear or taking time to add make-up, let alone sweat-proofing   game face to prevent #racooneyes was deemed superfluous.   

The moral of this tangented story is don’t judge the messenger who’s not only telling you “don’t judge,” but take into consideration that for the messenger, looking ultra fab all the time is impossible, unless you’re nine-months-old.   #focusattentiononButter Buns.  

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My application was approved!  

The last several months I’ve dreaded doing my MS drug treatment injections.  Dreaded.  As in I will wait AVOID and wait AVOID some more until I cannot AVOID it any longer on my injection days and have to make-up my mind to just do my darn shot.  8000 daily injections (some days two) in 16 years might have that effect.  Despite nurses coming out to my home and observing my shot routines and trying new shot depths for the injection device, I could not get injection site swelling reactions to cease or even diminish so my injection sites were finally limited to my hips and tummy, where it’s less painful because ultimately and consistently, I still need my medication.  Six weeks ago, we saw my neurologist, asked a lot of questions based on our research of available non-injection drug treatments and I realized my tolerance is high for drugs that could potentially kill me, versus low for drug treatments that could cause me nausea.  I actually find that very amusing.  

The thing is all MS drug treatments have that little disclaimer that they might cause death, but that number is so low and related to patients who already had other issues going on.  So when all this dread began a while back, we started praying about a new drug option.  Our faith is not in a drug, but that God will allow the drug to be the vehicle that improves my disease status.  As we started praying for doors to be opened with this treatment, but clearly shut if this was not something to pursue, the doors opened quickly and have remained open, which answered our question, but I began doubting because everything was falling in to place, too fast, in my opinion.  

Then, God asked if I would doubt his provision of the opportunity for which we prayed…   I felt convicted and finally my husband shared that he’d been praying for the doors tobe wide open or nailed shut.  After our research, we definitely leaned toward a particular drug, but lacked the needed funding.  It’s expensive.  Why are chronic disease treatment meds so stinking expensive?  I’ll tell you why.  Because drug companies make way more money treating a “no-cure-in-sight” chronic illness than to patent any available disease management improving treatments.  The drug that I’ve been pursuing is not a cure, but a disease-altering method of disease management.  Many of the individuals who have taken the drug were at a bad place disease-wise where this drug was their final hope and this drug delivered for them.   
For now, I’ll start making a list of all the symptoms that I hope and pray will diminish or disappear as a result of this treatment and keep doing my now three-times-per-week shots because I’ve been approved and funded for this new treatment.  With the end in-sight, I’ve developed short-timers and am anxious for this new treatment chapter to begin.  Treatment will begin sometime in the next few weeks at which point, I’ll name the drug and all the little details that go with it.   

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Cats + Dogs = MS Therapy

I’ll attempt to explain how much my little soldiers have provided such an extraordinarily high level of support throughout my battle with the MonSter.  My husband had his dog Ima when we married and I wanted a cat, so we made an agreement that when we bought a house, I would find a cat.  Within a few days of moving into our home, our cat (who I named Goliath) was featured in the local newspaper as a pet of the week with the humane society.  Ima and Goliath began our “collection” of domestic pets in 1997, but the following photo comprises Team Anderson Christmas ’12:

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We were at our first home for four years, where our brood grew to four male cats and two female dogs.  It was September 2001 when we purchased our next home, from my now late Grandparents.  It was bigger and it was equipped with Air-Conditioning, something we came to discover was going to be necessary in order for me to function at optimum performance  (at least during summer) with MS.  The new home also came with a large garden window in which all the boys loved to perch where they had a very clear view of wildlife entertainment.  Our suburban “wildlife” was a variety of birds, the backyard Koi pond and an abundance of squirrels found in the several massive Evergreen trees in the neighborhood.

While MS was becoming an issue at work, my husband had quietly begun the task of obtaining information for the filing for disability.  He was more proactive than I was with that because he stood back and observed while I began recognizing that the number of “good” days at work were diminishing, and then further recognized that my remaining active days at work were limited.  At night after work, I had mentioned that I might consider resigning from the credit union.  My direct manager and the HR manager were already aware that I have MS, so my husband and I developed a tentative exit strategy while I was still gainfully employed so that I could obtain what I believed would be “short-term disability-pay.”

My last day at work was during mid-October.  That day, I got settled at my desk for my day, but I had a bad feeling and felt, “off” while I fought mentally for the next hour while I analyzed my WIP loan files (Works-In-Progress).  I tried to work while I determined if I should go home for the day and when I didn’t locate my manager, I sent her an email explaining I needed to leave and would see her tomorrow.  I was a silly girl for being so optimistic because I woke the next day with vertigo and slowly made my way to the family room where I parked myself on the sofa and equipped myself with my Bible, a notebook and the TV remote on the off-chance I could pay attention for longer than five seconds.

I always found it amusing how much all of our house pets were attuned to my health, like when earlier in the year, our area experienced an earthquake, but long before it occurred, I woke with severe vertigo and called in to work that I would not make it in that day.  The day of the earthquake, I was also lying on the sofa surrounded either on the sofa or close-by on the floor, by our brood, when about seven minutes before the actual earth quake, the pups both started pacing/running back and forth from the front of the house to the back and the cats who were awake became skittish.  At work the next day, everyone thought I knew of the impending earthquake.  I am not now, nor have I ever been clairvoyant.  However, as our bodies are 75% water, I believe that the pending earthquake shook-up my equilibrium during my sleep cycle and caused me to wake with vertigo.

The many days with vertigo were always made easier by the cuddling and unconditional loves provided by the company of one of our brood of creatures.  If you haven’t experienced such relationships, head to the Humane Society where a loving critter, who is anxious to find a “forever-family,” is available.  Almost 17 years of marriage and we’ve adopted 11 critters, two of whom were in the original clan of pets.  The loss a family member is always difficult and people sometimes forget that pets are part of our family.  In nearly two decades, we’ve said good-bye to five pets due to terminal illness.  The cost of pet care isn’t the issue, but the consideration of pets not being able to understand why the people who are supposed to care for them allow them to be poked and prodded by needles for IV’s, is something that  my husband and I see as inhumane.  That is our personal conviction.  The loss never becomes easier, although, with time, our thankfulness that God allowed us to temporarily become “parents” for one of his individual creations is a tremendous blessing.  Pets are never alike, but they become whatever their environment allows and one thing has become excessively clear that all of the creatures in our brood are indulged with an abundance of love, care and play.  If it isn’t clear upon how friendly they are when meeting them and the assumption that all strangers are provided for their amusement, then the delicate softness of the pads of their feet shall affirm everything.

If you don’t have a four-legged critter and do not have any allergies that allergy-shots can help control, then please consider locating and taking a jaunt to your local ASPCA shelter:  http://www.aspca.org/adopt/shelters

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