Relationship Questions I’ll Ask Now That I Live With A Chronic Illness

By Stacie Prada

Here’s the hard thing about relationships when you have a chronic illness.  At any given time we’re at a certain place in how we feel about our lives and health, and we hope that those close to us can understand and be there with us.  And it doesn’t always happen for our spouses, family members and friends when we need them. They aren’t always able to trust us and be dependable for us when we need them. They aren’t always able to promise or have the ability to be there for us for what we think may be in store for us.

These are good people that have been through tragedies and life hardships before. But sometimes something that isn’t temporary, isn’t going to get any better, and is most likely to get worse is beyond what they can handle.

We don’t sign up for being sick. They don’t either.  The difference is they have a choice. And I’m grateful that it became clear before I desperately needed anyone that the relationship I was in wasn’t one that would support me in my probable decline.

I want to be wanted, not an obligation or sacrifice.  I see other relationships where people get together after one of them has been diagnosed with MS. I’ve seen how they treat each other, and it’s shown me that it’s possible to have a relationship where hardship exists and it’s not perceived as a burden. The hard things that need to be done are treated as things people do because they love and respect each other.

I don’t want a caretaker. I want a partner. I want someone who will do things for me because they want to, not because they feel obligated. If someone isn’t up for it, the biggest gift they can give is to admit it and bow out.

I cringe when I see articles and comments describing friends, marriages and bodies as not “real.”  My marriage was real. And it was good, really good for a while. We were strong and there for each other for a lot of excruciatingly hard times beyond our control. But dealing with what happens and staying around for what might likely come are different things.

For me I realized it wasn’t about whether someone would have me with my chronic illness, the question was whether I wanted them around for my future and helping me with my chronic illness. As I embark on a new relationship someday, I think the questions I’ll want to know the answer to are different and more specific than the first time I married. They extend beyond whether we want children and envision our futures and beliefs align. These are the questions I’ve compiled so far that for me capture relationship traits important for living well with MS:

  1. Can you be gentle and respectful to me when my health inconveniences you?
  2. Can you respect and appreciate me if it gets messy?
  3. Do I like how you treat me when I’m sick or not doing well?
  4. Do you continue to treat me as a partner when taking care of me?
  5. Are you there for me when I need you? Are you accessible? Do you respond to my texts or calls in a timely manner?
  6. Are you there for me because you don’t want to be the bad person or because you want to be with me?
  7. Will you go to doctor appointments with me and share my experience?
  8. Will you do things for me even if they don’t seem like a big deal to you but you know they’re important to me?
  9. How resilient are you? How do you handle stress?
  10. Will how I treat you be enough for you? Will you think being with me is worth the effort it takes?

These questions are reciprocal. Just because I know I have an incurable chronic illness, it doesn’t mean that my partner won’t need the same from me at some point. Nothing is certain, but hopefully building relationships that support unknown futures may be possible.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Finding Myself In A Funk: Staving off Depression Due to MS Disease Progression

By Stacie Prada

Each time a symptom worsens, it can trigger fear, grief, and depression: fear for the unknown future, grief for losing some physical or cognitive ability, and depression for the sadness of the whole life with multiple sclerosis experience.

Lately, spasticity in my arms and legs is increasing. Spasticity results when the central nervous system sends messages to parts of the body involuntarily causing them to tense. It’s causing me physical pain and affecting my coordination. I’ve tackled spasticity head on by talking to my neurologist, starting medication, stretching, exercising, and getting referrals for physical and massage therapies.  It’s a bit overwhelming since I have enough in my life consuming my time already.  But beyond this common MS symptom is the emotional distress triggered when I think about what will likely come as my disease progresses. My mood is flirting with depression, and that worries me.

It helps me to know that our moods will always ebb and flow between the highs of joy and lows of depression. It’s impossible to experience life joys and hardships without a changing mood.  For me the goal is not to avoid sadness, it’s to recognize when I’m headed for depression and use those low feelings to motivate me.  I hope to redirect my behavior and thoughts to something personally productive.

Being diligent about watching for potential depression, validating feelings, taking action, and assessing the experience after each episode helps me deal with the cycles of adjustment and depression that come with having a chronic and progressively debilitating illness.

Be diligent about watching for potential depression. The goal is to anticipate when I might be susceptible and recognize the subtle signs before it’s more difficult to course correct. Some ways I’ll recognize I’m at risk for depression are the following:

  • If something in my life is causing increased stress or symptoms are worsening, I’ll ask myself how I feel about it. Does it feel manageable? Does it scare me? I need to pay close attention to how I’m dealing with stressful situations and be on the lookout for depression.
  • Friends and neighbors check in on me when my routine is unusual, and I try to be someone who checks in on others. It’s critical to let them know I appreciate it when they check in, otherwise they may feel discouraged from doing so.
  • I try to notice if I’m declining activities I enjoy because they seem like too much effort. Given that fatigue can contribute to this, it’s good to be honest about the reason for the decision. We don’t do ourselves any favors with self-deception.  We just delay helping ourselves out of a difficult situation and potentially increase our suffering.
  • Trust and encourage people close to me to let me know if they think something is off with me.

Validate feelings.  Remember our physical and emotional health are inextricably entwined.  Recognize that it’s normal to feel depressed when our health is declining. It’s not a character flaw or personal failing to experience feelings of depression. Give yourself credit for doing as well as you’re doing.  Consider that you have a lot of skills that keep you living well with your condition and that needing more help is reasonable and going to happen periodically.  Remind yourself that you don’t have to feel terrible and these feelings don’t need to last forever. There are actions we can take that can help.

Take action. I’ve found that if I can take just one little step to offset my low mood, it can put me on a path toward feeling optimistic and empowered again.  Intentionally make the first step small.  Success is what’s needed at this point to encourage taking the next small step that will hopefully lead to more.

  • Do things that naturally help your body release mood-boosting endorphins. Use the mind-body connection to your advantage by listening to music you love, dancing, stretching, and moving your body. Triggering your body to release endorphins won’t solve your problems, but it will make you feel better temporarily and sometimes that’s the best we can do in that moment.
  • Power through: Pushing yourself to ignore feelings of depression can help in a moment, but recognizing depression and addressing it directly is necessary for long-term wellness.
  • Pursue connection: Talk to someone. Your neurologist, counselor, confidants, and online groups closed to people with MS can be a good sounding board. They can help validate your experience and help you find your way through these feelings.
  • Contribute: Whether it’s through work, volunteering, mentoring, or even casual encounters throughout the day, find ways to contribute to society. Knowing that your value is more than your physical abilities is crucial for adapting each time your body deteriorates. Having purpose and giving to others helps develop this sense of self-worth. There are ways to accommodate disability to continue being able to contribute even if it looks different as our disease progresses.
  • Seek personal growth: Learn something new, create something, or seek opportunities to see things differently than you have in the past. A change in perspective can neutralize feelings of depression dramatically.
  • Consider supplements and medications: Talk to your doctor about treatments available to you. They can be used temporarily to offset depression that has surpassed the point of being able to tackle without medication. Medication may also be helpful for ongoing maintenance if needed long-term.

Assess the experience. Think about what triggered feelings of depression and what helped you to feel good again so that you might be more prepared for next time. Think of it as weaving a personal safety net that includes your posse of friends, family, and health care providers along with lessons you’ve learned from past challenges. Remembering your previous successes will help you be your own inspiration when you need guidance in the future.

The time between when I start exhibiting tendencies toward depression and when I recognize it may not be as fast as I’d like, but with practice and self-awareness I keep getting faster. Improving my response time reduces periods of distress and helps me build confidence in my ability to face my future with MS. I’m still in the midst of applying these lessons to my current situation, but I think I’ve reached a turning point. I have faith in my safety net, and I know that I’ll adapt. I also believe that thriving in life doesn’t depend on life being easy; instead I think facing challenges head on with grace is what thriving looks like.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Dealing With Embarrassing Symptoms: Constipation

By Stacie Prada

When MSAA asked if I wanted to contribute something for their theme this month I knew I had a lot to say, but I was uneasy being frank about a topic that would be on the internet for anyone to judge. It was exactly that reason why I didn’t play it safe and just talk about embarrassing symptoms generally.  Because I felt a bit of fear sharing my experiences with constipation, I decided it was the perfect one for me to discuss.  Courage gathered and challenge accepted. So here goes…

There’s no glamour in being good at living with a chronic illness, but there is dignity in exhibiting confidence and acceptance of the reality of living with an incurable health condition. Aging gracefully is met with admiration, and I maintain that living confidently and openly with an illness is worth undertaking.  People living with an illness deserve to live a life without shame or feelings of inadequacy for circumstances beyond their control.

Constipation is a common multiple sclerosis symptom. It’s embarrassing, and it’s an uncomfortable topic to discuss.  Try to get over the embarrassment of bowel problems.  If the doctor doesn’t have previous experience with an embarrassing issue, it won’t be the last time.  You may be teaching the doctor something that will be useful for the next patient.

People that have helped me with different aspects of MS constipation over the years have been my Primary Care Physician, Neurologist, Physical Therapist, Urologist, Naturopath, yoga instructor, people in my MS Self Help Group, and close friends who have had their own experiences or been caretakers for their parents.

The MS Self Help group I’m in doesn’t ever respond, “T.M.I.,” or shut down a conversation when they’re uncomfortable. They may get quiet and let others speak, but I’ve never seen someone tell a person the topic isn’t appropriate. Meetings are a perfect resource and safe environment for sharing our specific problems and learning what other people do.

People are trying to be helpful when they diagnose your problem.  They’re sharing what worked for them in the past, and they’re excited that they might be able to help you. With constipation though, it’s necessary to look at the consistency of your poop before deciding how to fix it.  Most treatments assume you’re constipated because medications are hardening your stool or you’re not getting enough fiber or fluids in your diet. Sometimes those suggestions can help alleviate constipation. But with MS, that may not be the cause or remedy.

Sometimes the problem isn’t the consistency of stool; it’s that the poop should be able to move but won’t. Your fiber intake and hydration level can be perfect and your poop can be the perfect consistency, but the inner and outer anal sphincters may not be operating on command.  The problem can be that the nerve messages flowing from the brain to the anus aren’t getting there to let a bowel movement happen naturally.  It can also be that spasticity is refusing to let the muscles relax. If poop is the right consistency, then more fiber doesn’t help with this.  With laxatives, you can get the poop to a diarrhea like consistency to alleviate unsatisfying bowel movements.  While it’s a relief to empty the colon, it’s a roller coaster approach to dealing with constipation.

Pooping regularly and easily requires the perfect combination of good stool consistency and the anal sphincters functioning correctly. When the poop is good but MS lesions are blocking nerve messages or spasticity is wreaking havoc, there are a number of things that can help:

  • Self-diagnosis: Learn how to detect the root issue causing constipation. Is it stool consistency, malfunctioning nerve messages or something else?
  • Schedule: Allow time for coffee, tea, or medications to take effect before you need to be somewhere.  It may require getting up earlier and taking more time in the morning.
  • Movement: Stretch, twist, and move the mid-section to shake up the system to help induce a bowel movement. Exercising on a stationary bike, elliptical, or treadmill is good since you’re likely to be close to a bathroom when you feel you need to go.
  • Self-massage: Look on the internet for “self massage for constipation.” There are a lot of videos and suggestions for how to massage the abdomen to induce a bowel movement.
  • Breathing: Look on the internet for “breathing exercises for pooping.” Focusing on breathing and moving the belly can help focus attention away from the sphincter, relax the rest of the body, and trigger the involuntary muscles that can help a bowel movement.
  • Gut health: Probiotics and prebiotics can help maintain regularity, and they come in a variety of forms from pills and liquid supplements to fermented foods and yogurt.
  • Bowel training:  Learn what each muscle in the pelvic region feels like when it’s tightened and when it’s relaxed in order to better control them. Kegels can increase the strength of the muscles and the ability to control them. Biofeedback with a trained professional can help with learning how to better control the external anal sphincter.  The internal sphincter isn’t under voluntary control, but learning to relax the muscles in the area can help with bowel movements.
  • Pooping position: Make sure to sit in a position that isn’t making it harder for the body to have a bowel movement. A foot stool like a Squatty Potty creates a squatting position while sitting on a toilet so that the colon is straight and not kinked.
  • Supplements: Senna and magnesium are among the many, many laxatives available in pill, liquid, and tea form available to soften stool if needed.
  • Enemas & Suppositories: Saline enemas and glycerin suppositories can be effective for emptying the bowels when constipation lasts too long and immediate action is needed.
  • Botox injections and muscle relaxing medications are treatments that can help neutralize the effects of spasticity which is another common MS symptom that can lead to constipation.

The body is an engineering marvel, and when it works well it seems super simple.  When things stop working as well, it takes a lot of self-discovery and research to figure out what’s going on. Embarrassing symptoms are frustrating, because they drastically increase the discomfort quotient and reduce the options for gathering treatment options.

Learning to overcome feelings of embarrassment will go a long way to diagnosing and finding treatments for symptoms.  Be courageous.  Be confident in your duty to advocate for your well-being.  Be a good example and resource for others who may need to find their own courage to do this someday.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with multiple sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Black Swan MS

By Stacie Prada

I learned about Black Swan events recently as they relate to investing. Multiple sclerosis symptoms and progression seem to me to be personal Black Swan events. Nassim Nicholas Taleb developed the theory based on the history of black swans being thought of as an impossibility.  It was a known fact that they didn’t exist. So when black swans were discovered it was a surprise and significant, and in hindsight black swans seemed like something that people could have predicted or should have expected.

Being diagnosed with MS was an enormous Black Swan event in my life. Suddenly the extreme fatigue, numbness and bowel issues that held no explanation for many years were obviously indications that something was wrong with my body. The signs were there, but I didn’t recognize them as related to each other or of any significance. Given how much these symptoms impacted my life, hindsight makes me seem foolish for not connecting them to a major health issue.

Most recently, my feet started buckling more frequently with a frustrating experience of losing the ability to walk temporarily. It surprised me.  It made me realize that MS is affecting my legs much more than I’d thought.  And in hindsight I remember all of the dismissible moments when my feet would buckle.  There were times when one foot would stop supporting me while standing among friends. Other times while walking, one foot would shift so that I lost my footing on flat ground and needed to catch myself. I just thought they were odd, one-off unexplainable experiences.  Now I recognize them as a very common MS symptom that I already knew about – spasticity. What is obvious to me now seems like it should have been obvious to me then. In my defense, the frequency and impact previously had been low.  Now that they’ve increased, I see a pattern and progression.

Now that I know what’s happening, I can work with my doctor to try to offset how my body is behaving. I’m continuing to do stretching, strengthening and movement activities, and I’m adding medication, massage and physical therapy. My shoe choices are also changing to reduce embarrassment and possible injury.  It’ll take time and effort to see if I can change the course of how MS affects me.

It’s like reading a book or watching a movie where all will be revealed at the end.  I’m living in the middle of my story, and by the end the mysteries of my body will be pieced together, explained and understood.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at stacieprada.blogspot.com

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Invisible MS Symptoms and How They Affect Relationships – Even When They’re Subtle

By Stacie Prada

Being diagnosed with and living with a chronic incurable condition can test and change every relationship a person holds dear. Invisible symptoms are especially tricky. I know after my Multiple Sclerosis diagnosis I didn’t want to burden others with my problems. Just because I had a life altering condition, I didn’t think it should affect everyone else.

One of the adult life lessons I’ve learned is that people who care about us WANT to help. Withholding our struggles increases stress on our part and creates a feeling of being pushed away on theirs. They hate feeling helpless. We do too, but we have more information at any point than they do.  Think about when you’re driving a car in inclement weather compared to when someone else is driving and you’re in the passenger seat.  When you’re driving, you know whether you have control of the vehicle or not. You know how well the brakes work, how alert you are, and how long it will take you to stop if something happens. A passenger has little information other than what they see and feel, and they have to rely on their trust in you. Having MS is like being the driver, and our friends are the passengers when it involves our health.

While their intentions to try to fix our problems, make us feel better, or help in any way they can may sometimes feel pushy and cause conflict, working through the unknown and developing a new relationship dynamic is well worth the effort. All of the relationships I still have today are intensely richer for the awkward conversations we’ve stuck with and the commitment we’ve made to interacting differently than we did before I was diagnosed.

Invisible symptoms like fatigue, pain, numbness, balance problems, bladder and bowel problems, cognitive issues and heat sensitivity can affect how we feel even when we think we’ve got it all under control. There are times when I think I’m doing fine or faking it well, and dear friends will say they notice I’m not feeling well. It’s especially impressive how well people know us when symptoms are subtle and we may not even realize we don’t feel as well as usual. For me I notice that my patience lessens and I have a tendency to feel more pressure from people by what they say.

I asked two dear friends what they had to say on this topic, and one said that what hurts her feelings is when I hold back and distance myself. I can justify it by saying I don’t want to worry her or bother her, but it’s more likely that I don’t feel like admitting I’m having an issue or that I’m not up for hearing advice in that moment. One skill I’ve tried to beef up is to recognize when I’m feeling pressure or don’t want to talk about something anymore and say so. I’ve noticed it’s harder to do this the longer I wait to say something, And while saying I’m not up for discussing something in that moment may hurt their feelings, I think it’s better than continuing to suffer silently. The other skill I’m working on is to tell them that while I’m not up for it in that moment that I do appreciate their concern and perspective. I also want to start saying that I think I can continue the conversation another time.

Being self-aware, communicating consciously and not reactively, and considering other people’s perspectives has made living and loving well with MS possible for me. It’s definitely improved my relationships, reduced my stress level and contributed to a life I love.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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New Year’s Resolutions, Taking Stock & Creating a Personal Health Reference Manual

By Stacie Prada

I used to think it was more important to just do things than to track them, but now I see the value in writing them down and acknowledging how far I’ve come over time. When the calendar year ratchets up and I think of myself as another year older, it’s a natural time to reflect and make goals. I like to review what I’ve accomplished, endured, thwarted and nurtured. When I’m feeling like I have a lot I still want to do, knowing how far I’ve come is a reality check for my expectations.

I aim for full life wellness, and I categorize my areas of wellness as health, home, relationships, finances, creativity and adventure.  At all times, I try to have at least one goal for each area. I like to incorporate small activities in my life that move me toward achieving my goals, and I like doing one or two large projects at a time that leap me forward on a goal.  Depending on my levels of energy and obligations, I’ll do a little or a lot on the larger projects. I try to establish and maintain balance in my life without sacrificing or ignoring another aspect of my life. My overarching goal is to keep working toward something while appreciating who, where and what I am now.

My 2017 Resolution: Take stock.

I think it’s helpful to take stock.  To think about what made me happy in the past, what I love about the present, and what I would like my life to be soon or someday. Committing those thoughts and ambitions to paper or a digital file allows me to look back over time to see if I still want the same things in life now that I thought I wanted in the past.

I’m taking stock figuratively and literally. I’m pouring through all of my personal belongings, my finances, my routines and my data. I’m compiling the things I’ve learned over the years since I don’t always remember something when I encounter it again. This will focus my attention on what I have, what I could adapt to use differently, what I still want, and what I’d like to upgrade for the perfect fit.

My Personal Health Reference Manual

A big project I’d like to accomplish this year is compiling all of my health information for things I’ve experienced, tried and currently use. I aim to create and maintain a binder for all the ways I keep my health in check. It will include all the successful and unsuccessful treatments.

The idea for this project came to me after my hip started hurting. I know that my hip can hurt when I jog longer distances, and I could tell that I’d overdone it. I believe the cause is foot drop that slightly affects my gait when I jog and triggers a misalignment in my hips to compensate.  In the past, I’d curbed my distances to deal with it. Sadly, it took hurting my hip twice in a month and six weeks of recovery time before it occurred to me I’d dealt with this before!  I remembered that I had physical therapy exercises from seven years ago that helped heal my hip from the same problem.  My hope is that using these exercises will not only allow me to heal my hip faster but prevent future injury and allow me to work back up to longer distances again.

This experience made me realize I need a personalized easy-reference health manual to manage my health with less stress. MS affects each person differently, and it requires constant adaptation to live successfully with MS. I want to reduce the amount of time spent enduring something and wracking my brain figuring out what will work for me in order to hasten effective treatment. An up to date personalized health reference manual will help.

The information I want to compile will include the following:

Conditions, Symptoms, and Injuries

  1. Indicators, triggers and causes
  2. Preventative measures including lifestyle choices, nutrition and activities
  3. Treatments including prescriptions, exercises, and natural remedies
    – Pros
    – Cons
    – When it’s effective
    – When it’s not effective
    – Why I choose this (or don’t)
  4. Experiences with this issue – what’s worked or failed
  5. Theories for why my body reacts a certain way – correlations proven and disproven

Sources of information I’ll use to compile this reference manual include:

  • Tracking calendars of health data and disease-modifying drugs
  • Notes I’ve taken at health appointments
  • Physical therapy treatments and exercises
  • My memory
  • My friends’ memories – often they recall things for me that I’ve forgotten
  • Books and internet resources that can trigger my memory for things I’ve tried but didn’t write down
  • Medical records from doctors

I’ve included a couple of examples at the end of this post that I’ve put together so far. It’s tailored to my health and experiences, so yours will look different. It’s also a work in progress, so I’ll keep adding and editing it as time passes and I change.

I wish I was low maintenance. Sadly, as I’ve aged I’m getting to be higher and higher maintenance. I joke that at least I’m doing the maintenance and not pushing that responsibility onto other people!

That said, if I do ever need help with my health, this will be a great tool for anyone helping me.  They’ll know what I’ve already tried, what works, and what hasn’t worked. I won’t need to start from scratch with each new provider.

This is organizing my health from my information and experiences. It frees me from relying on information from the web each time I confront an issue. Sometimes the information can just be too much, and what will help me gets lost in the mass of opinions and recommendations. This is organizing around me and benefiting from the decades of experience I have being me.

Examples of pages from my Personal Health Reference Manual:

Condition: Vertigo and dizziness with nausea

  1. Indicators, triggers and causes: crystals in ear out of place
  2. Preventative measures: none
  3. Treatments: Epley Maneuver to put crystals in ear back in place
    Pros: Non-invasive, I can do it at home, and no side effects. Immediate results.
    Cons: none
    When it’s effective: When dizziness is caused by ear crystals out of place.
    When it’s not effective: If dizziness is caused by something else.
    Why I choose this for now: It’s an easy fix.
  4. Experiences with this issue, what’s worked or failed. I experienced dizziness and nausea for a week before seeing my neurologist. He did the Epley maneuver to me on one side and it didn’t do anything. He did it again on the other side, and immediately my vertigo vanished! He taught me how to do the Epley maneuver at home, and I have used it a couple times over the years since. When I need a refresher, I’ve found a Youtube video to remind me.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: It’s common.

Condition: Fatigue

  1. Indicators, triggers and causes:
    – When numbness intensifies or spreads from the usual areas
    – Spring and Fall when the seasons change
    – Less daylight in winter
    – More obligations than usual after work or on weekends
    – Workdays that involve constant personal interaction without breaks
    – Relationship stress
    – Big events – both happy and sad!
    – Long periods of added stress
  2. Preventative measures: Track fatigue level daily and adjust activities and treatments based on fatigue level.
  3. Treatments:
    1. Coffee/caffeine:
      Pros: It lessens light or moderate fatigue effectively and temporarily, it tastes good, it’s accessible, I don’t need a prescription, fewer side effects than other methods
      Cons: It can adversely affect sleep and intestinal health. Dosage can only go up to a certain level before getting jittery and anxious. I felt better physically (except for fatigue) when I went without coffee for a month.
      When it’s effective: For minimal to moderate fatigue.
      When it’s not effective: When fatigue is extreme.
      Why I choose this for now: I like it and it fits within my lifestyle. While I need to work in an office setting, it’s helped me maintain.
      Experience: Green tea inflames my throat. Caffeine tablets were harsh on my stomach. I may as well drink coffee and enjoy it.
    2. Rest:
      Pros: It’s helpful
      Cons: It’s isolating, it can conflict with life obligations.
      When it’s effective: At least some rest daily, but more intensive rest needed when fatigue is heavy or extreme.
    3. Modafinil (Provigil):
      Pros: It’s effective
      Cons: It requires a prescription, and my insurance doesn’t cover it. Out of pocket cost was $120 for six pills in 2012. (Could check on this periodically to see if it’s changed.)
      When it’s effective: It can help me get through periods of time when I’m not able to limit my obligations to get more rest. It’s a good temporary option if I can get an Rx.
    4. Exercise:
      Pros: Moderate exercise helps reduce fatigue. It’s good for weight management. It helps keep me mobile and able to experience lots of activities.
      Cons: Hard to always gauge how much exercise is enough and how much is too much. Too much extreme exercise over months can tax my body and lead to more fatigue.
      When it’s effective: When I’m not injured or severely fatigued.
    5. Organization & Prioritization:
      Pros: It lessens stress and frees up mental and physical capacity for reducing stress.
      Cons: It takes a lot of thought and practice to create organization methods.
      When it’s effective: Pretty much always.
    6. Blue light
      Pros: Non-invasive
      Cons: Daily time investment required, and the results aren’t immediate. Hard to gauge if it’s helping or not. It was an expensive investment without any assurance it would help.
      When it’s effective: Fall and winter when the days are short where I live.
    7. Limit activities
      Pros: Helps free up time for rest and sleep.
      Cons: It can get depressing and make me feel like I’m being punished.
      When it’s effective: When I’m still able to do things that satisfy me emotionally.
  4. Experiences with this issue, what’s worked or failed. I used a blue light in 2010 through 2012. I think it helped, and I should pull it out and try it again this winter. I don’t need it in the summer and I forgot I had it. Exercise, rest, coffee, and good nutrition work for daily maintenance. Modafinil works well when I need to keep going for a week or so beyond what my body would prefer. Rest is required to recover from overdoing it.
  5. Theories for why my body reacts a certain way, correlations proven and disproven: Fatigue is the #1 symptom common for people with MS. With so much damaged nerve insulation (myelin), it takes more energy to do common tasks than for someone with healthy myelin. My neurologist explained that the energy it takes a healthy person to walk a mile may be an equivalent of a mile and a half or two miles for someone with MS.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Feeling Connected and Nurtured When I’m Alone on Christmas

By Stacie Prada

Families seem to be expanding and shrinking simultaneously these days. With second and third marriages, births, in-laws and kids by marriage, the number of people I care about and am related to keeps growing. At the same time, divorce, death, living miles away and conflicting schedules reduce the number of people I spend time with in-person during the holidays.

This year I vacationed over Thanksgiving week, and I enjoyed a lot of time with family and friends while having a lot of fun. Now I’m back at home and while I’ll have plenty of parties to attend this month, I anticipate spending Christmas Day alone. Living far away from my closest family members makes it impossible for me to spend all holidays with them. I enjoy spending time with others, and I enjoy my time alone. Still, there’s something about the holidays that is tricky. If I don’t plan ahead, it can be easy to fall prey to self-pity.

In my life, I’ve experienced a couple decades of small family gatherings and another couple decades of large and wonderfully chaotic extended family holiday events. More recently I’ve experienced celebrating holidays solo, and it’s coerced me to think hard about what will allow me to enjoy the day alone. For me, I feel nurtured if I can include some time connecting with people important to me, some time outside reflecting and appreciating all of the good things in my life, and some time indulging with good food and drink.

If I’m going to be alone on a meaningful day, I try to connect with others in one or more of the following ways:

  1. Try to set up a time to Facetime or phone people important to you. If schedules are complicated, email or text a holiday greeting.
  2. Do things to connect with people throughout the month or year, not just on or near the holiday itself.
  3. See if friends will invite you to join them. You can be somewhat subtle by asking what they’re doing. They’ll ask what you’re doing and often invite you to join them, but make sure before asking that it’s someone with whom you would like to spend the day.
  4. Ask a neighbor if they’ll be around. You can get together for an hour for coffee, tea or wine. It doesn’t need to be big, just something to break up the day and include some interpersonal connection.
  5. Volunteer at a local charity. You can help prepare or serve a meal for others. You can also just be a smiling greeter if you’re not able or up to performing tasks. Listen, share, learn and connect.
  6. Tell people that you’ll be alone and would appreciate a phone call. Often people assume I have it all together and will be busy. They’re happy to connect when they know it’ll be appreciated and not a bother.
  7. I’ve never found a relationship that does better from no interaction. Give people a chance, and don’t assume the worst. Appropriately credit responsibility for behavior to the person doing it. Feel good about yourself. Make sure you feel good about your behavior regardless of the actions of others.
  8. Consider people you know that may also be spending the day alone. Make plans to do something together for a portion of the day.
  9. Post something to Facebook. One Thanksgiving I enjoyed watching the sunrise on the beach while drinking my coffee. I took a video of the sunrise and shared it with friends while expressing my gratitude for them in my life.

Some of the ways I’ll nurture myself include the following:

  • Do something special for yourself to commemorate the occasion. Do something indulgent for you, or engage in some activity you love. Sit on the beach, go for a walk, or stop at a coffee shop that’s open. What you love may be totally different than anything I would ever consider.
  • Find a restaurant nearby that’s open, and go alone if you want.  At the very least you’ll talk to people that have to work instead of spending time with their own family.  It’s usually a very friendly time.  Plan ahead since a lot of places are closed on holidays.
  • Visit and leave flowers at someone’s final resting place. Honor the impact that person had on your life.
  • Make and enjoy a meal you love if you enjoy cooking.
  • Decorate, even if it’s just a holiday themed bouquet or plant. Differentiate the day and your surroundings from every other season or day of the year.
  • Get outside. Even a rainy, cloudy day outside can feel better than staying inside or under cover.
  • Think about what you could do so that you’ll feel loved and appreciated even if it’s just you who loves you.
  • Make sure you find a way to enjoy the time instead of just trying to get through it.

Connecting with people important to me takes some initiative. Lots of them have a busy day ahead, so it’s good to plan in advance to make sure my emotional needs met. Overall, I’ll be happy if I remember to genuinely look at the bright side, do something I love, connect with everyone I care about either during the month or on the day, and find a way to be generous.  And if nothing else works, I’ll distract myself and remember tomorrow is another day.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Make Life Easier To Get More Done and Lessen Stress

By Stacie Prada

note-cards-picEveryone I know feels overwhelmed at times.  They forget things, and they accomplish less than they’d like sometimes. I’m comforted when I have an organized life and am not worried that I’m forgetting something. I like to create systems that support me in being organized, simplify my life, and make life easier so that I can exert energy on the good stuff.

To reduce my stress level, frequently I put effort into reducing the number of decisions I need to make and the quantity of things I need to remember. If I don’t have a method for remembering it, I’ll get in a thought loop reminding myself to do it later. After a while, it can be crazy. It’s wasted energy that could be put to better use.

Streamlining things I do repeatedly makes them easier, less stressful, and more likely to get done. Making decisions takes energy. The more decisions I make in a day, the more energy it takes to get through the day. Decision fatigue is real, and when MS fatigue already affects a person’s health it can really lower their quality of life. Given that I want to be productive and maximize what I can accomplish, reducing the number or decisions I need to consider and decide repeatedly frees up energy and time for other things.

Simple ways I reduce the number of decisions daily life requires and ways I make decisions when I’m not in a time crunch are as follows:

  • Lay out my clothes the night before so that I don’t need to figure it out in the morning when I have a time limit for getting ready. I include my underwear and socks so everything is ready for me to get dressed and there are NO decisions to be made. My shoes and coat are ready by the front door, and so are my keys.
  • Create a packing list for things I do or places I go repeatedly. I refer to lists frequently before I go on a bike ride, take a long walk or hike, or go to the pool.
  • When making meals, make extra. Leftovers are easily one of the most time saving and decision reducing methods for reducing stress.  Think about how often you ask yourself what to make for dinner or your next meal.
  • Automate bill payment when possible. For things like electrical or phone bills, set up bill pay so that they automatically get paid with a credit card. I can pay multiple bills in one sitting when I pay my credit card bill. I also don’t need to worry about forgetting to make a payment.

Lots of times it’s not about being unable to do something I want done, it’s about not remembering to do it. It’s easy to forget things if I’m out and about or get distracted at home.  Creating memory triggers helps. Check out these easy ways to stay focused:

  1. Make reusable flashcards. I use 3” x 5” index cards for recurring tasks or habits I want to create. When I remember I need to do a recurring task and can’t do it immediately, I’ll pull that card out or make a new one. I’ll place it somewhere I look frequently. For me it’s the kitchen counter or dining table. It’s a time saver and memory jogger. These reminders are especially great when you share your home. Family members will realize that laundry needs to be done and may help without you asking. They’ll also appreciate that you’re doing things that contribute to the home when otherwise they may not have noticed.
  2. Set a timer: When cooking or doing things where I may not hear the buzzer, I’ll set a kitchen timer or phone alarm. This is great for things like laundry, cooking that requires pre-heating, or pulling something off the stove.  It’s not a failure to need to use these tools. I know people with perfect cognition that get distracted and nearly burn the house down by putting something on the stove and forgetting. The timer is a necessity for reminding me I turned on the oven or put a load of laundry in the wash. I don’t necessarily need to have a reminder card for that (even though it doesn’t hurt), but there are instances when the timer goes off and it takes me a moment to remember what it’s for.
  3. Leave myself a note: When needing to do something later, I’ll put a note in a hot spot I see frequently. It may be a post=it left in the car, at home or on my computer monitor at work.
  4. Put appointments and reminders on the calendar in a mobile phone with an alert.
  5. Create lists for what I need to bring for things I do repeatedly. I have lists for going for a walk, bike ride, leaving town, and getting back from out of town. I also have a pretty standard list of grocery items that I frequently eat. The point is to ease up on the number of times I need to figure out the same thing.

Often the difference between feeling overwhelmed and feeling like things are doable is one task or obligation.  If you’re stressed out and having a hard time getting things done, be brutal.  Remove things that don’t absolutely need to be done the way you’re used to doing them or would prefer to have them done.  What’s the minimum necessary to get it done, and when is the deadline? What can be delayed until tomorrow, next week, or next month? What doesn’t need to be done by you or at all?

Get over the feeling that it’s embarrassing or not okay that you need reminders. I once had a family member laugh at me because she saw my reminder on the counter to “pack” for a trip.  She thought it was absurd that I was reminding myself to do something that was obvious.  Yes, it was needed and obvious, but my simple reminder kept me focused and less stressed.

I’ve learned that a single tracking or organization tool isn’t going to work for everything I want to remember or do. Just like Facebook, Instagram, Pinterest, email and texting have different strengths and times where they’re appropriate, organization is a compilation of lots of little methods.  Think about what works and why it works for you.  Then build on that.  Where do you need to remember things and where do you frequently look? Make a system that works for you.  It’ll be unique to you, your life, and your priorities.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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Creating Some Order in the Medical Billing Chaos

By Stacie Prada

Medical bills can be daunting to track when a person is healthy and only has a few appointments a year. When a person is injured or has a chronic illness, the number of medical bills and insurance statements that arrive by mail can be staggering. Compounding the confusion is that they’re often confusing to read and understand.  Trying to track them and know which bill has been covered, denied or ignored can be overwhelming. It can also get very expensive if you end up paying for things your insurance should cover.

Keeping a checklist and single filing spot for these medical bills and insurance statements lends some order to the chaos and helps reduce the stress of dealing with financial tasks.  It took me a while to come up with this method, and it has since evolved to a pretty simple method it works for me.

Medical Billing Tracking Example

Medical Billing Tracking Example

I created a checklist to track each visit with information needed to track payment. I use a fresh checklist for each doctor’s visit, MRI scan or lab test since each one may require working with different billing companies.  I print these on 4×6 index cards, but you could use any size paper that works for you. I’ve included a blank Medical Bill Tracking Sheet and one that I’ve filled in as an example in this post.

  1. After a medical appointment, fill in the top of a Medical Bill Tracking sheet with the year, provider and the date the Appointment/service provided.
  2. When a bill or insurance statement arrives in the mail, open it, read it, and add notes to the tracking sheet. Staple the bill or insurance statement to the back of the tracking sheet. Any time a new piece of mail arrives regarding that appointment; staple it to the back of the tracking sheet.  It will build up to a stack of papers that all relate to that appointment.
  3. For an insurance statement, see if it was paid or denied. Often, if it’s denied, they’re really asking for additional information before making a final decision on the claim.  You’ll have a time limit to provide the information, so it’s important to read it and understand what it says.
  4. If you have more than one insurance plan, coordination of benefits can become a part time job. Get used to calling each of the insurance providers to ask who has covered what and what they need to keep processing the payment.  You may need to call the other insurance company or medical provider for information to fax to another company. Be prepared to spend a lot of time on hold when you call. Take good notes and get used to being your own financial advocate.
  5. If you receive a bill from the provider, look to see if insurance has covered anything.  If it’s not listed on the bill, call the provider to see if they’ll bill your insurance. If not, you may need to submit the bill to your insurance company yourself. I’ve often had instances where the bill wasn’t paid by my insurance company, but when I called the provider I was able to confirm my insurance information and have them resubmit the bill to insurance.
  6. Sometimes the provider doesn’t hear back from insurance and will send you a bill for the full amount.  If that’s the case, call your insurance company and ask what the status of payment is. I’ve had providers frustrated that they hadn’t received payment after billing insurance.  One year each time I called my insurance company, the representative would ask questions about the date of service and provider’s billing date before telling me the bill was in process and would be paid next week.  It seemed like a game and too coincidental for every bill, but I just factored it in to the process for moving it along.
  7. Once insurance has paid for medical expenses covered under your policy, you should receive a bill from your provider for any amount you owe.  Make sure it matches what your insurance statement says you owe. If you’re not able to pay it in full, call them and see if they’ll offer a sliding scale or payment plan.
  8. Remember there are national and community assistance programs available for people without insurance or ability to pay for their health care. Call MSAA to see if they offer assistance or if they can suggest another organization that may be able to help.
  9. File all of these tracking packets that have been paid in full and are done in one place. You may need them to confirm payment was received if duplicate bills are sent before they receive payment. If you receive a duplicate bill, staple it to the stack. Don’t throw anything away in case the provider doesn’t apply your payment correctly.
  10. If you talk to anyone along the way, write it on the bill or the tracking sheet. Know and write down the name of the person you talked to, the date, and what was said. Being friendly and knowledgeable goes a long way to clearing up any confusion and getting help from people to resolve any problems.

Things to know about your medical insurance coverage:

  • Deductible amount for each year
  • The out of pocket maximum your policy covers, if applicable
  • If your policy includes a Health Reimbursement Account (HRA) the amount you’ve earned for the year.

Knowing this information will help you anticipate how much money you may need to dedicate to your health expenses each year. I assume I’ll need to pay the maximum out of pocket amount each year, and I budget that amount for the beginning of the calendar year. It’s also handy if you itemize taxes and need to know what you spent on medical expenses during the year.  Another benefit of having your records in order is that someone else could understand the status of your bills if you need someone to step in and assist you.

Keeping my finances in order allows me to avoid a lot of stress and time wasted figuring out what’s been done and what hasn’t. While the instructions for tracking this may seem obvious, it’s nice to be able to go back to the steps and checklist when the volume of paperwork gets overwhelming.

Blank Medical Billing Tracking Checklist

Blank Medical Billing Tracking Checklist

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/

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Embracing Change

By Stacie Prada

In the last three years so much of my life has changed.

My beyond-two-decades-long marriage was ending while my career took a completely unexpected and welcome turn. I moved to a new place, and I had a few surgeries. Valued in-person friendships were no longer nearby, and they shifted to Facebook interactions. All of my daily routines I had in place no longer fit into my new life, and I spent a lot of time redesigning them. Often it felt like my entire life was tossed in the air and landed scattered on the ground. Picking up the pieces and deciding how to arrange them again took up a lot of my time and mental energy.

Any of these changes would have been big for me, but juggling them all at once took a lot of effort. MS was a factor in this because I strove to maintain my health throughout these changes. My biggest goal was to avoid an MS exacerbation, and, fortunately, I succeeded.

Experiencing change can alter how I view the world, myself, my past, my future, and the people around me. It’s a mental shift from what I thought I could count on to knowing how vulnerable and impermanent everything can be.  The diagnosis of MS made me question my body’s abilities and health. I thought my body was strong and healthy. Being diagnosed led me to realize that a healthy and mobile future isn’t necessarily in my control. I can eat right, exercise, and get checkups, and still have no guarantee for good health or the ability to walk in my elder years.

Adjusting to change is a skill I’ve cultivated to save my sanity and bring myself mental peace. Some years ago, my New Year’s Resolution was to “Embrace the things that I resist.” It was a great experience acknowledging when I was resisting things and actively shedding the internal resistance I had to doing them. When I was nervous about running a public meeting, I decided to dive in and just do my best. When I liked a fashion choice that I thought might be too flashy, I decided to try it anyway. When the group sang karaoke, I got up in front of the group with my not-great singing voice and sang my heart out. I knew I might sound terrible or look silly, but I let myself have fun doing it.

My personal challenge that year allowed me to think about and recognize why I resisted things, and it helps to think about it when dealing with change. Most of the time my resistance stemmed from the following:

  • Uncertainty for what the next step was or how to decide
  • Being afraid that following that step would lead to an outcome I feared
  • Being overwhelmed from the quantity of things to deal with at that moment
  • Fear of making a mistake, making what I would later judge as a wrong decision, failing, or being judged negatively by others
  • Holding on to a belief that I have control over the future, others, or anything other than what I do, say or believe.

Coping with change:

With MS, a lot of change stems from the domino effect of losing mobility, cognition and physical abilities. Focusing on these losses can lead to depression and a sense of doom. When an exacerbation hits, it’s natural to worry about where it will lead and how it will affect the future. It’s all understandable and natural, but it’s also incredibly unsettling, frustrating and just plain hard. I try to embrace changes I’m resisting by doing the following:

  1. Recognize that feeling unsettled, nervous or fearful is natural. Accept it will be stressful but try to do what I can to minimize the stress.
  2. Think about why the change is stressful. Does it require changing my life, my relationships, or just my attitude?
  3. Seek inspiration and motivation from people who have lived through a similar change. What insight can they lend?
  4. Pace myself. Take on only a few extra tasks each week or month, and reduce some of the things that aren’t necessary for my physical or mental health. Know that my regular life still requires a lot of energy, and something needs to give temporarily.
  5. Know the deadlines and what’s at risk if they aren’t met. Give myself enough time to do things, but not too much so that it feels never-ending.
  6. Break down the steps to dealing with change into smaller doable tasks to avoid getting overwhelmed.
  7. Prioritize based on importance, deadlines, and energy level. If my energy is low, I’ll do the easy tasks for now and the more involved tasks at a time of day when I have more energy. Certain things may also be able to wait months.
  8. Wait to start until I’m ready to commit. I keep a list of things to do, but I don’t start until I’m ready to do them and complete them.
  9. Set realistic expectations and ambitious dreams.
  10. Look forward to something. Whether it’s seeing kids or grandkids grow up and being a part of their lives, traveling, dancing, watching the sun set, or anything else small or large that brings joy.
  11. Enjoy the path I’m on even when portions of it are difficult. Give myself credit for all of the things I do that aren’t hard because I’ve put so much effort in the past into getting better at them.
  12. Trust that I’ll do what I think is right for me each step of the way and that it’s enough.

Dealing with change has been a learned skill for me, and it’s taken a lot of effort to cultivate that skill. It’s been worth the effort to reduce my internal stress and increase my sense of contentment. Relaxing into and embracing change has improved my confidence, given me opportunities and experiences beyond my expectations, and made for a much more satisfied and joy-filled life.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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