Posts Tagged MS
It is well with my soul
Posted by crusaderjennblog in Faith, Inspiration, Living with MS on July 22, 2015
I love the newer version of this old hymn and God has continued to use this song to keep me and my thoughts in-check because at times, and I’ll be honest, I’ve gone from zero negativity to Defcon Red in milliseconds, for which there is really no valid reason. Those reasons have been ridiculous and those worries have been entirely unfounded. The “what if?” game and I have been on again, off again roommates and I still have to work at kicking-out the unwanted guest when they attempt to argue, sit down and makes themselves at home for an extended stay as they readily rehash what’s wrong in my life, when all I must do is counter-hash everything that is right. Here is Matt Redman’s version of “It Is Well With My Soul.”
I have been so very blessed! In 2001 my MS was on a fast-track quickly retrogressing and I became dependent upon using a wheelchair full-time. 2015 marks 10 years since I regained feeling in my legs, was healed and able to again walk and not require the assistance of a wheelchair. Thank you, Lord.
My Dad was diagnosed with cancer a little over a year ago in 2014. With each quarterly exam, the cancer was confirmed with the understanding that because it was a slow-growing cancer, nothing was an emergency, but it would need to be monitored. My Dad’s quarterly cancer check-up and biopsy in June came back, “No cancer.” As in with all the many many samples they extracted, there was NO TRACE of it. Thank you, Lord.
Our oldest kitty Thor, died at end of April- just a couple of months ago. He was with us 18 years and he lived a pretty long and happy life filled with chasing string and consistent purrs. We adopted Thor shortly after B and I married. Our youngest kitty, Zephyr was diagnosed with kidney stones last winter and because of the process of going under the knife, we’ve hesitated to get him the surgery. With our loss of Thor, the Lord knew we needed some comfort and allowed Zephyr to be instrumental in providing that with lots of loves and cuddles as we mourned, but we remained worried that his condition would also take him from us too soon. Zephyr is now stone-free. Thank you, Lord.
My husband had a bad cough for about a year and the doctor said it was fine. It went away and then the cough started again and I kept reminding B to go to his doctor to see what was going on. They did a full exam and also ran an x-ray this time around. The x-ray was clear and everything is absolutely fine with his lungs except that the doc put him on an allergy regimen and now that painful cough is almost completely gone. Thank you, Lord.
I doubt that there are any other Christians out there who have ever been able to relate to being control-freaks or worrying excessively. What? You might resemble being controlling? You worry about stuff too? Then you can relate… I guess that somehow I believed in my very misguided perception is that if I worried needlessly about anything big or small, that things will get better or something ridiculous like that. I am thankful that God has a plan and that through my worries, He’s waited patiently for me to step-back, give him those reigns for my inner control-freak extraordinaire and just let him be God. It’s a process and I am an active work-in-progress with needing to remind myself daily that, “‘He’s got this, Jenn.” It’s very silly the amount of control that I perceive I have. I believe that the above situations served for no other purpose than to get my faith on-track. But then, it may not be all about me, so perhaps my perspective is selfish in that the listed situations were to grow my faith, when those also could have also served to grow my husband’s faith, my Dad faith, my Mom’s faith and / or my Sister’s faith…
As B and I have again felt led to pursue adoption, our faith has very much been stretched. It’s far from ideal circumstances since we’re older and have less money than the first time we attempted to adopt in ’07, but God’s bigger. We’ve been called to just be obedient to his guidance. He’s bigger than our perceived ideal circumstances and we have questions, but more than anything, we must trust in him.
Relinquishing control is not easy, but I’m confident that considering my own life is just a little blip on God’s screen, that He can see all things past, present and future and that there is a Divine purpose for him allowing you or me or any other person to go through anything. Those situations are either good or bad character building or faith building.
What are you made of? Do you struggle with doubt? What kind of situations have challenged your own faith?
Jenn
I am the worst blogger. Ever.
Posted by crusaderjennblog in Faith, family, health, Inspiration, life, marriage, MS on May 12, 2015
Updating and sharing… I get so caught-up in doing irrelevant tasks like decorating the house (as I should have done years ago) and baking and currently researching to understand trends, that when I’m riding such a wave of momentum that I cannot stop or maybe I don’t stop? Shortly after I completed the ‘making our house a home’ ordeal back in early April, I was able to again join a gym. I’ve missed that daily habit for several years and when my MS improved back in ’05 and we were still in WA, I joined a gym and enlisted the help of a trainer who coincidentally also has MS, and provided me with a detailed program of cardio exercises, strength-building and toning exercises for me to keep some level of strength. But, since moving, I really had not been in a gym in years. I’m thankful most of the strength that I’d built remained during my gym absence and I was able to work the same major and minor muscle groups each day that I did earlier, so it took only a couple of weeks to get back into the habit in 2015. So once again these activities became part of my current routine with lifting four days a week, and doing between 7-10 miles of cardio on my recumbent bike at home daily.
Another project that’s had my ongoing attention is getting our pool ready for Pool-Season. During winter and early spring, there’s a minor level of maintenance required except after days of excessive wind and leaves blowing into the pool a few days each month. We had a couple of weeks of windy weather in late April, which resulted in a slightly cloudy pool from all the dust and then the vacuüm stopped working, but was not clogged so I enlisted a professional to diagnose our pool’s problem. I didn’t know what I didn’t know and I hate to claim ignorance, but there were a few steps that went ignored with our pool maintenance. So after cleaning the filters and getting ALL the appropriate equipment, with my newly acquired knowledge of ALL the steps, the pool is running just fine for the coming summer Pool-Season, which now that we’re consistently involved with our small group from church and they’re aware of our pool, there are definite expectations of us hosting pool-related barbecues/get-togethers.
Also relating to Pool-Season, my hair is short again. Long hair gets hot on my neck and I gripe about it for a month, even with it pulled-up in a pony-tail and I finally give in to getting it cut. It’ll grow back, unless I determine the shorter do is a keeper… Another thing is for years, my sister has been on me to watch Mad Men and a couple of weeks ago, B and I tried it a third time and well…we’re finally in. Jon Hamm is gorgeous, which has nothing to do with anything, but have you seen “Million Dollar Arm”? He’s definitely also a DB in that film just like he is in MM… And Peggy? Why didn’t anyone catch-on to her being pregnant? I called that long before she even started showing… Speaking of pregnancy, my sister is due in August and we’re once again attempting to adopt, but this time is different so more on that later.
Last weekend the Seahawks Won because of me
Posted by crusaderjennblog in Faith, Football on January 25, 2015
I’m not so self-important to really think that I had anything to do with the Hawk’s win against the Packers last Sunday, but I do think God did allow them to win for me. The last few years my faith has been inconsistent and consistently wavering. At some point, I somehow started believing that blessings from God were performance-based. I know that my assessment of performance-based blessing is entirely false and thank God! I’m thankful He doesn’t work like that because if that were true, there’s no possibility that I would ever or could ever be blessed. Then I have to remind myself that I never deserved to be healed, but God healed the status of MS so I could walk again and not require a wheelchair full-time. I also must keep reminding myself that God continues working in my life and I also never deserved any of these ongoing blessings. So when I was watching the game last Sunday and saw the Hawks on their way to a loss in the last quarter, I kept saying to myself that my God is a God of miracles as He’s shown me with my health that miracles clearly happen. I prayed for and asked God, while also believing in a miracle that the Seahawks could still win the game.
And they did. Despite the great point deficit. Congratulations, Seahawks and know I’m praying for another win against the Patriots next weekend! GO HAWKS! Regardless of whether God allowed the Seahawks to win for me or because of my tiny faith, God knew I needed a little encouragement and through that answer, God met me where I was in my wavering mustard seed faith. Although I’m near the US gambling capital where I could have put a penny on Seattle to win, I’m confident that I wasn’t the only non-betting person praying for the Hawks to come out on top. I also believe that God knew I desperately needed something to hold onto and for him to show me He’s still in control and that despite myself, He heard even my little prayer for an irrelevant football game outcome. Thank you, Lord – I needed that. I know that positive answer helped to confirm and re-energize my faith in an unseen God who WILL move us back to WA, but I must be patient in also having faith in his perfect timing. Thank you again, Lord Jesus!
Is the potential to make things worse, worth the risk?
Posted by crusaderjennblog in Faith, family, Jesus, MS on January 17, 2015
I’ve been in the middle of using those critical thinking skills and I think because of my tendency to analyze and reanalyze in all numbers of equations, those skills only become more and sharper to more quickly come to reasonable conclusions. I’ve been very blessed these last 10 years. Rereading that number is incredible because I had to use a wheelchair from ’01 to ’05. 10 years ago I was able to quit using a wheelchair. Wow! I’ve tried to never take for granted what I have because this disease could easily and without notice, remove a number of abilities as it did in years past. The abilities to walk, run, see, swallow and void without the proper tool for example are some things that I could not do for a number of years, so when I could do them again, I’ve tried to always remain grateful and Praise God that those abilities were returned to me and that I still have them 10 years later. The high temperatures of last summer challenged my MS. Obviously we’re months beyond last summer, but I wonder if it’s possible that the high temperatures continue to have a lingering effect on my current state.
I saw my neurologist yesterday and while I was in the waiting room I played an iPad game. Being left-brained, I’m always playing games during which I mentally analyze a number of things that do not have anything to do with the game because I can play the game on ‘automatic pilot’ therefore allowing myself to think on other issues like determining if I’ve created a symptom or whether it was already a symptom. As I was matching tiles, I noticed a feeling in my leg that I hadn’t experienced in years. Numbness and tingling. Then I disregarded what that feeling meant and continued playing. The nurse lead me to a room and I noticed the feeling again. A bit later on my way home from my neurologist’s, I was unsettled about the whole numbness episode because although I was conveniently at his office for an appointment, it seemed he was too quick to prescribe a new bout of treatment. I signed the okay to move forward because I just wanted to get home. I didn’t bother to turn on the radio while driving because I needed to pray and concentrate on what a new treatment might mean. At home I immersed myself into tasks that needed to be done before the weekend began and finally, the dam broke and my eyes sweat (I cried). When I once again acknowledged the unpredictability and reality of my disease, I researched the suggested drug and failed to see any endearing qualities so instead of filling the prescription, I’ll keep doing what I’m doing with exercise and diet.
10 years ago when I got better, I desperately needed a reboot and I quit taking the 13 symptom-chasing drugs that my prior neurologist in Washington kept prescribing for me because I needed to know if those were still necessary. When I quit taking all those drugs, I almost immediately noticed that I felt better. Feeling lucid and NOT feeling like a zombie or I guess what I assume a zombie may feel like, definitely feels better. The list of 14 side-effects of this potential new prescription from my current neurologist included 7 issues that MS currently gives me and upon further reading, those issues would likely be exacerbated with the new prescription! “hmm Let me think about this… gosh, everything sounds very enticing and like something with which I think I should definitely take some risks,” said no reasonable CrusaderJenn EVER. As I’ve already been down the road of drug cocktails and symptom-chasing, I’m content to wait this round out. I understand those who see my decision as foolish. However, please take a moment to understand that I was diagnosed 20 years ago and from MS years 7 through 12, my MS symptoms covered many of those who have a more progressive form of MS. I doubted my own longevity back then and I recently found out that my family also doubted that I’d make it to 30-years-old because my relapsing-remitting MS progressed so badly and so quickly. But God did heal me and here I am 10 years later.
I am a big fan of Pinterest and here’s the link to my MS board. I have to read this board daily as it provides me with a mental boost and some inspiration to keep Fighting the Good Fight.
http://www.pinterest.com/CrusaderJenn/ms-battling-multiple-sclerosis/
Panic, averted, not ave… , averted
Posted by crusaderjennblog in Faith, family on January 7, 2015
I received a call this morning pertaining to the fact that there would not be a shipment of my MS medication, although, as of yesterday afternoon, I would receive it Thursday. So, when the organization called again today and said there would be an indefinite delay for shipping me my medication, I panicked.
Jenn’s game plan: 1. Panic. 2. Panic more 3. Repeat. When Instead, this should always be my game plan:
However, I did successfully talk myself off of the ledge, took a deep breath and determined I needed a Peppermint Infused Mocha. So I made one. Peppermint Infused Mocha: Mix 1/8 cup half and half with 1/2 to 1 tbsp chocolate syrup, add 1 soft peppermint, then add 1 cup of hot coffee and stir until peppermint is nearly melted. Enjoy. And I did, but then I started to panic again. Peppermint Infused Mochas provide only a minimal level of distraction and comfort and after 4 of these this morning, I determined I should come-up with another game plan. That’s what Russell Wilson would do. But then my defeating thoughts started again… what if I don’t get my medicine this week? Will the delay in taking my injections cause my MS to again relapse? Will I end up in a wheelchair again? This is my ongoing problem: I go from zero to apocalyptic in 0.001 seconds. Until roughly two years ago, I was never a worrier because I took comfort in knowing that regardless of what I did, there were many things out of my control and back then I easily let-go of things and stepped aside for God to control.
It’s been interesting and eye-opening when I think back through recent years and review my decision-making where health is concerned. For the last decade, when fall arrived, I ALWAYS got a flu-shot. But last September, I put my tradition on hold as I questioned whether I was trusting God to keep me healthy or putting my trust in a vaccine. I know that God gives us common-sense and common-sense says to get a flu shot because rumor has it that the current flu-strain is awful. So I should get a shot. But considering we’re on a very tight budget, I shouldn’t get a flu-shot, but can I afford not to? Which says, get a flu-shot, but does that say that I don’t trust God with my health? But then, but this, but that, and the list goes on and I go back and forth. I fully understand that I still lack control of nearly everything, but here I am and as always I am an ongoing WIP (Work-In-Progress) to immerse myself completely in trusting God.
It’s become obvious to myself that I trusted God years ago to get me out of the wheelchair and he did that. Praise God for such a wonderful blessing, but I’m ashamed to admit that my trust is lacking with everything else, like getting us moved back to Washington and keeping our own little family and critters healthy. I’m also ashamed to admit that I have this mentality that because I was the recipient of such an amazing blessing when God allowed my health to improve so drastically, that I do not qualify for any additional blessings. But I know better than to think like that because we are promised in Ephesians 2:8-9 NIV that, “For it is by grace you have been saved, through faith – and this not from yourselves, it is the gift of God – not by works so that no one can boast.”
Jesus dying on the cross, forgave what I did and what I will do as long as I confess. Grace is about what He did and that cannot ever be earned. When Jesus died on the cross for me and everyone else, that was never earned, but I still received that precious gift. Therefore, I have to believe that receiving healing was also not earned and that I just need to rest in peace that regardless of whatever challenges may come up for me or my family, his grace will sustain.
~Jenn
All over the map
Posted by crusaderjennblog in Faith, family, Inspiration, lifestyle, MS, prayer on December 27, 2014
Competitive swimming from grade school through part of college – think hundreds of laps daily and nearly Olympic trials level fast – not slowly floating across the pool on a noodle (that many sadly call ‘swimming,’) piano, flute, 4-H-sewing and cooking and finally Jazz dance, which would be close to the equivalent of today’s hip-hop genre, were my extra-curricular activities growing up. I had just turned 8 or 9 when I completed the Red Cross certified swimming courses and my stay-at-home Mom was desperate to enroll me in something that would keep me out of trouble busy so she spoke to my final instructor who was also a coach with the swim team newbies and suggested I try-out for the local club. I immediately took to competitive swimming, which required little time to learn backward and forward flip-turns so I could keep up with the circle of other swimmers at my level. My parent’s ongoing joke was that I was born with webbed feet. So seriously, Mom & Dad, with the umpteen number number of hours in the pool each week, was there even the slightest possibility that I wasn’t?
Swimming continues to be one of my favorite activities and ‘back-in-the-day’ I became somewhat of an aquatics guru within my family, who looked to me to life-guard cousin’s birthday related pool-parties and instruct the how-to’s of swimming and water-skiing to my little sister and younger cousins. In college I continued to swim with the early morning Masters team. Many years later when we moved to Nevada, we noticed many homes have pools and when we bought our home a few years ago, we were very excited to have our own. From mid-spring through late-summer, the outdoor temperatures maintain around 103 and as it’s too expensive to run air conditioning full-time. Therefore, the pool provides a perfect relief to cooling-down my core. MS has altered my body’s ability to self-regulate my core so when I become warm, I’m technically overheated, making our pool’s cool temperature a tremendous source of relief and blessing with those high outdoor temperatures for 6 months. Other than swimming during the hot temperatures, I’m embarrassed to admit I do very little any more.
Obviously, I had the ability to commit long-term to activities while growing-up, but because of MS and what it’s taken from me, my interests are really all over the map. I think my abilities prior to MS taking me backward have unfortunately dictated what I can or cannot do. I was never a quitter and I have my folks to thank for instilling in me a stick-to-it attitude, but there have been several activities that I began and quit because of MS ‘issues.’ For example, I discovered and indulged my love for stamping cards and book marks, but when the tremors ataxia started where my hands shook badly, it became impossible to accurately place rubber stamps. This caused what I had hoped to call ‘artistic creations’ to become somewhat of a mess, resembling over-priced pieces of abstract art, at which point, my neurologist gave me yet another MS related symptom-chasing drug to lessen the shaking, which helped, but at a sacrifice because of the cocktail of drugs. I was rarely coherent appearing somewhat of a zombie with my glazed-over eyes. And I quit stamping. However, I could make a mean martini – shaken, not stirred became my joke because “If I can’t laugh, I may cry,” and I really try to limit that tissue-requiring activity. I also tried my hand at becoming an independent beauty consultant for a big corporation (whose reps are rewarded with pink cars), but eye-make up was a joke to apply because of that whole fine-motor-skills lacking hand stability. Then, I became a cooking rep for a company that specialized in quick mixes to create tasty dishes. Although I had fun and was successful, that was also short-lived when I had to give-up driving. My attitude was that as much as I still wanted my ‘right’ to be independent to drive, other cars/pedestrians had the right to be safe when my increasing foot/leg ataxia became hazardous to controlling the correct pedals. And I quit driving.
2015 will mark 10 years ago that God provided healing and pulled me from my wheelchair, but I have nothing to show for it, except several activities in which I invested, only to quit. Beading was another post-wheelchair favorite, but short-lived activity as I attended bead-shows and then created beautiful bracelets and earrings. At the same time I came from the wheelchair, I quit the the numerous symptom-chasing prescription drugs because I was tired of feeling like the undead. Although I was lucid, my hand stability was only achieved after a couple of glasses of wine. That became somewhat of a big discovery. I could be a creative, but functioning drunk or a non-lucid undead human… That was an obvious choice. I have continually returned to writing and I made a goal 10 years ago to write my encouraging story, but I lost my inspiration. Writing has been a passion since grade-school, but in junior high there was an adult and best friend who ganged-up on me to tell me that I was wasting my time at which point , I guess I gave-up on it, although I would still scribble-out ideas and write creatively, from time to time. That was very much ‘my bad’ for giving into believing their discouragement and I’ve learned to ignore those voices or mentally give the middle finger salute to those inner voices who say I can’t or that I’m wasting my time.
I realize that I must continue to actively learn something – anything productive. I did online courses a couple of years ago in which I discovered I’m completely left-brained. Thank you, Dad, who is an engineer. It feels great to be learning and I’ve tossed around the idea of learning to use a knitting loom as it doesn’t require fine-motor-skills. I may also again attempt to bead or stamp as my ataxia seems to be becoming less of an issue… Praise God because martini-making provides a very limited skill-set. I’ll keep you posted on what activity has gained my attention…
Jenn









