Archive for category MS Fight Club

MS retrogression…

When the second exacerbation occurred in ’97, my neurologist wrote the prescription for my first CRAB MonSter treatment.  Those of you in the know, understand the acronym CRAB stands for Copaxone, Rebif, Avonex, Betaseron and my Neurologist prescribed Avonex.  The idea of a weekly injection was inconvenient because I was determined to fight this MonSter on my own, but because of the administration of the drug and its side-effects, it became a couple’s issue.  Avonex was designed as an intramuscular injection, therefore, the needle was longer and thicker for going directly  into the muscle.  

Among the onset of symptoms with the exacerbation, was a slight tremor.  I was right-handed and of course, this tremor affected only my right hand. The tremor-like symptom has forced me over the years to become ambidextrous, but at the time, doing the injection for myself was not an option. The tremor did not play nice, nor did it allow me to accurately inject and by default, my husband’s steady hand made more sense for completing the weekly ritual.  Avonex resources were “dialed-in” and provided us with drug prep training and administration training so that both of us were entirely comfortable with the whole Avonex process before we were ready to inject on our own.  

God bless my husband for embracing the training and practicing the process until he was ready to inject that (what appeared to me at the time was a 14 inch) needle.  Realistically, it was only a couple inches long, but injecting something into a loved-one that would ultimately cause pain was very different than going into the doctor’s office for a routine, but somewhat impersonal flu-shot, for example.  Because of the tremor, I had to resign myself to allowing my husband to be my care-partner, which was something I have embraced over the years, but at the time, felt as though my independence was being ripped away from me, without my permission and happened way too early since I was only 23 years old.   

The first couple of solo injections were supervised to ensure nothing was overlooked.  In 15 years of medications, praise God that there has not been even a hiccup.  I switched from Avonex in Spring of ’01, but the ritual went like this:  we washed our hands, my husband swabbed the vial of liquid with alcohol, extracted the liquid with the syringe and injected it into the other vial to dissolve the pill-like substance of Avonex from its original form, I bared one of my hips in the mirror, marked a spot with a crescent-like nail imprint, cleaned the spot with alcohol, waited for the alcohol to dry and my mind greatly increased the length of the needle and syringe.  Truthfully, it was not excessively long when he injected the Avonex.  

With the knowledge that Avonex was an interferon drug and was prone to offer flu-like symptoms, we determined that the injection should be Friday night so that I might sleep through the flu-like side-effects and wake Saturday morning, ready to tackle the remainder of the weekend with whatever we had planned.  But God, in his desire to make me slow down said, “Not so Fast, Missy.”  The lesson was:


The whole thing was the first of many lessons over the years that God used to teach me to recognize that I must be flexible, for myself as well as for family and friends. The flu-like symptoms rendered me useless for several hours.  In the beginning, I fought the symptoms, but in my stubbornness, I made myself worse for not allowing myself to take the much-needed rest that God was trying to show me was mandatory in order for me to improve.  It took a few years, but the situation was the beginning of many lessons in the realization that nothing I did would ever control the outcome of anything, especially that of my MS’s debilitating status. 

 

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Beginning MS

The symptoms that led up to my diagnosis in October ’94 were short-lived as they lasted only a several weeks and subsided before winter in December.  That first glimpse of MS was minor in comparison with the diversified MS related issues I experienced later and will address in future posts.    

In ’94, stress was not something that I controlled successfully, but the following several months were uneventful and then ’96 was a fantastic year because late August, I met my husband. During early dating, he shared some news about a childhood friend who was diagnosed with MS and as I had not yet shared my own diagnosis, I determined God presented the opportunity and I utilized it.  I related my situation and his reaction could not have been more ambiguous, which I mentally assumed indicated I would not hear from him again, which was fine as I liked him, but there were no deep feelings involved and I was content with my job at the bank. 


God had other plans because we continued dating and then within only weeks of my “MS news,” he became more serious.  I still was not convinced that he was settled with my news and I declined his proposal six weeks into our courtship.  (My Mom’s cousins who are sisters both have MS and I did not know the older sister well, but the family was aware of her husband’s reputation prior to her MS complications related passing), so in my mind, I was protecting myself from future hurt.   I explained this to soon-to-be-husband and also that because of MS, I was afraid to have children so I would not be in his way to have a family.  He was a tad upset when he explained that he fell in love with me because of my strength, my faith and my sense of humor.  He also explained that he didn’t want to marry MS, but he wanted to, “Marry a beautiful woman, who happened to have MS.”  [Everyone sigh, “Awww!”]  And proposal attempt number two was accepted.  


He planned the wedding and reception.  No, he did not suggest anything like beer-pong or peanuts on the reception tables, but before he planned anything he asked if I would rather have a house or a big wedding.  Duh!  A house!  So we chose to do a small wedding with only family in attendance and bought a house six months later.  I was relieved of wedding planning stress, but buying our first house brought on MS flare-up number two during July 1997.  I saw my neurologist shortly after moving and he prescribed my first interferon drug for injection.  

Stress-induced symptoms had returned with numbness replaying the role of Symptom Leader, prior to and during our move with moving day being the worst.  Moving in 80 degree heat was challenging enough, but what I discovered further into summer is that heat is fine, but it was the humidity component on moving day that had changed everything.  I can function well in 80 degree heat and single digit humidity.  Less than 40% humidity presented hiccups in my strength and coordination, but exceed 75% and I am rendered useless so praise God for air-conditioning!  




Not everyone with MS has the same experience so there is a massive learning curve for all of us MS patients.  In trying various treatments, I discovered MS is entirely individual because what worked for others was not successful for me.  I mentioned earlier that just like varying symptoms, there are several treatment options, which will also be addressed in future posts.  

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Diagnosis

We relocated to Nevada in 2011. My husband moved in February for a job and after our home sold, I arrived mid-April.  After relocating hundreds of miles, I determined, my rig needed a tune-up.  As a woman of faith, I believe God places people in our paths for a number of opportunities and the auto-shop presented friendship. My soon-to-be-friend, (I’ll call her D) was in the shop’s waiting room and we talked about everything from weather to health. 

D shared she was in a battle to obtain an MS diagnosis because her non-conclusive test-results were delaying potential disease treatment.  I shared that from the start of being symptomatic through all my own appointments, I thankfully obtained my MS diagnosis in less than a month at 20.  My age is relevant because almost twenty years-ago, some “specialists” had an age hang-up.  “Because twenty-something’s are not diagnosed with MS.”  

 

I’m thankful that both my first neurologist and second opinion neurologist’s diagnoses were consistent.  D, who is my age, began having symptoms a couple of years ago and has yet to receive a definitive diagnosis since the lumbar-puncture and MRI were “non-conclusive.”  My new PCP referred me to a neurologist, whom she was seeing for her own MS symptoms.  And DH was already seeing that same neurologist.  And D also shares my faith.  And we’re the same age.
 
That situation was obviously orchestrated by God for D and I to become friends.  I was new in Nevada and D is a kindred-spirit who is in an unknown state of health, but could use somewhat of a “guide” through navigating the waters of understanding her symptoms, emotional turmoil and ensuring that her battles are “normal.” 

I am privileged to know D and I pray that as a nearly two decade seasoned veteran of the disease that I will be an effective source for guidance and support. 

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MS is Interesting

I was a blogger about three years ago, but I felt like I was just another boring blogger who mused about boring and irrelevant nonsense and thus, eliminated the boring blog.  At the prompting of my husband, I am going to resume sharing my story, but this time, more openly as far as all the ups, the downs, the emotions, the struggles and results of living with the day to day battles of the neurological disease, Multiple Sclerosis.  I want to inspire people.

In October 1994, two years out of high school and only weeks following the traumatic death of a friend, the numbness and tingling in my right side extremities began.  Unbeknownst to me at the time, my Mom – who honestly should have an honorary medical degree, is exceptionally wise.  She consistently and accurately diagnosed my sister Jackie and I with conditions from the flu to hypochondria while we grew-up and our Mom was understandably alarmed about my symptoms and contacted my doctor about her concerns.  She was not meddling, but because she was aware of the similar warning signs that resulted in her two cousins MS diagnoses years prior, she desired to ensure that my doctor referred me to the most appropriate specialist.  

Following the relapsing-remitting diagnosis, the next few years were uneventful, but Spring of ’01 brought on the onset of reoccurring symptoms.  Those inconsistent and unpredictable indicators taking up residency resulted in me labeling Multiple Sclerosis the MonSter.  Through this blog, I will share my own MS struggles and experiences, combined with my victories and my hope is that I encourage others who are both new to and or seasoned veterans of this MS battle.

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