Focus On Yourself At Least Once Every Day

Each New Year brings hope and a sense of optimism amidst a potentially gloomy season with brittle cold weather and often gray skies. It is a time to begin with a proverbial clean slate. A time to start fresh and improve something about your life — eat better, exercise more, spend less money, read more books, learn a new skill — practically any goal can become a New Year’s resolution.

But there’s something about resolutions — they’re hard to keep. Each January, many people make an effort to do something different and end up disappointing themselves when a month later their resolve has fizzled into the gray sky. It can be total resolution evaporation.

My suggestion to prevent the evaporation? Make only one resolution: Focus on yourself once every day.

Life presented many challenges to me in the past 9 months. It was a really tough year. As a result, I did not take care of myself as I should. I stopped exercising. I stopped going out and having a blast on my bike. I stopped caring what I ate. I focused simply on surviving and taking care of others.

Maybe you can relate. At some time in your life, perhaps you have fallen victim to ignoring your own needs too. It’s an all too common situation, no matter what the details of the circumstances are. What you and I need to do now is to find a way to begin to take care of ourselves without a total resolution meltdown.

Once I realize what I really need — to show myself kindness and love — I can find ways to do just that. It’s not an easy task, honestly, because I’m so programmed to take care of everybody and everything else first. But there’s always going to be something else to do.
Since my neglected needs are primarily physical, I have chosen a physical solution. Your needs may be emotional, social, recreational, or financial, thus your solution should match the corresponding need.


Here are the questions I asked myself in order to identify what I need to do to show myself kindness and love within my current circumstances.

Read this post in its entirety:

The Only Resolution You Need to Make

Spring Cleaning Your Emotional Health

Over time, houses can become messy and cluttered. Heavy drapes keep out winter drafts, but block the cleansing light of the sun. As springtime breezes over the windowsill, cobwebs flutter in the corners. Until light illuminates the cobwebs and dust bunnies, they are too easy to ignore, allowing them grow into a fierce filament army.

In the past, I have described my own depression as a monster that hides in the corners. Most of the time small and miniature, the monster can be easily ignored. But allow it to grow unnoticed in the darkness and the mini-monster becomes a beast straining to break free from imaginary chains.

Dealing with emotions is not as easy and straight forward as spring cleaning. But I’ve found that if I acknowledge the emotions, really take the time and mindfulness to notice that they are there, the negative emotions lose some of their potency while the positive emotions gain strength. Shedding light on the emotions helps to know where to mentally sweep, as long as you do not “sweep” the emotions under your cognitive rug.

Read this post in its entirety:
Cleaning Out The Emotional Clutter Of MS

How To Be Your Best Advocate

Build a coordinated health care team

MS is a disease that can directly or indirectly affect almost any area of the body connected through the central nervous system. Your basic health care team will include your primary care physician, specialty doctors (including your neurologist), an MS-certified nurse, and a physical therapist, as well as your caregivers, partner, and/or loved ones.

You should expect members of your health care team to communicate with each other and share relevant information with each other to provide you with the best comprehensive care. This will reduce the chance of conflicting plans of care or over- or under-utilization of resources. During consultations, it’s important that your providers are open to multi-sided discussions where you are encouraged to express personal preferences and they present informed clinical options.

Neurologists and MS nurses who attend annual medical conferences focused on multiple sclerosis, such as CMSC or ECTRIMS, are more likely to be up to date on recent knowledge related to MS. Don’t hesitate to ask your providers how they remain informed as to the latest research and treatment guidelines. By working together you can establish a treatment path guided by clear goals.

Read this post in its entirety:
How To Be Your Own Best Advocate

Building A Strong Health Care Team

Building a strong health care team begins with YOU as you recruit team members with the skills and expertise to function in a coordinated way to provide you with the best care. As you work in active partnership with your team members — doctors, nurses, therapists, pharmacists, and office staff — it will become easier to identify quality care and to be empowered to communicate your needs, questions, concerns, and personal choices.

Primary care team

As a person living with multiple sclerosis (MS), it’s often easy to think of your neurologist as your primary, or most important, physician. However, you continue to need access to a primary care physician (PCP) who can take a big picture view of your health, while being available for urgent, acute, and chronic needs. For example, you would call your PCP if you suspected a urinary tract infection so that you could be quickly tested and prescribed treatment. Or if you have chronic conditions, such as hypothyroidism or high cholesterol, it is your PCP who monitors your health with routine laboratory testing and prescribes medication to treatment the condition.

Read this post in its entirety:
Building Your Best MS Health Care Team

Foster a 'Can Do' Spirit to Fight MS

Do you believe you have the power and skills to complete tasks and accomplish specific goals? If so, you have a high level of self-efficacy. People with high self-efficacy may be said to have a “can do” spirit.

Self-efficacy can be influenced by past experience, peer pressure, and physiological factors. Self-efficacy can also influence behavioral choices (e.g., avoiding tasks when belief in our ability is low, or choosing to undertake tasks when self-efficacy is high), affect motivation (e.g., people with high self-efficacy are more likely to persist in order to accomplish a task, whereas people with low self-efficacy might be discouraged and give up sooner), and affect thought patterns and responses (e.g., low self-efficacy can make you think a task is more difficult than it actually is, which leads to poor planning and increased stress).

Multiple sclerosis is a disease that can erode one's independence and lead to lower self-efficacy. MS is often associated with significant reduction in physical activity, which also correlates with lower self-efficacy. Conversely, higher self-efficacy has a positive effect on physical activity and correlates with higher health-related quality of life (HRQoL) and lower rates of depression.

Read this post in its entirety:
Build Confidence and Foster a ‘Can Do’ Spirit to Fight MS

Caregiver Fatigue and MS

Caregiving is a special skill that some choose to develop professionally, but one that others learn out of necessity.

According to the Caregiver Action Network, there are 65 million family caregivers across the country. Nearly one-third of the adult population is providing an average of 20 hours of care per week. That’s an extensive, unpaid job, one that’s vital to protecting the health and safety of our loved ones, especially those with multiple sclerosis.

MS is a progressive disease that can cause significant physical disability and manifests with a broad range of symptoms, including weakness, sensory disturbance, bowel or bladder dysfunction, impaired mobility, and vision loss. As the abilities of a person living with MS gradually decline, caregivers must perform important functions to help those with MS stay more independent. Informal caregivers such as family members, friends, and neighbors help make it possible for people with MS to remain in their homes even as the need for personal assistance increases and physical and cognitive independence declines.

Caregivers have an important job, but may become highly burdened. Family caregiving, mostly unpaid, can cause emotional distress, isolation, feelings of abandonment, and economic difficulties. In contrast, however, caregiving can also strengthen relationships, improve coping skills, and encourage feelings of pride and accomplishment. Becoming a caregiver teaches you a lot about yourself and empathy.


Read this post in its entirety:
The Impact of Caregiver Fatigue in MS

To Complete Your Current Drug List: Add Contraindications

This past Monday I consulted my primary care physician (PCP) about a suspected urinary tract infection. I’d been feeling progressively not well, although I’ll admit that I’ve been burning the proverbial candle from every angle imaginable and have earned fatigue and increased MS symptoms. But after experiencing sudden leg weakness, I thought that it was time to take action. If infection was causing a pseudoexacerbation, there was something we could do about it.

My PCP prescribed an antibiotic which I started taking immediately. The next morning I had a routine appointment with my rheumatologist, during which I told her about the antibiotic (eg, Bactrim). My doctor’s eyes got BIG.

“You cannot, MUST NOT, take Bactrim when you are using methotrexate,” she says. “The combination can cause your blood counts to go to zero.”

Hmm. That doesn’t sound good. She told me to stop taking the drug immediately and to call my PCP. Then she discussed potential side effects of other antibiotics that might affect tendons and what I should do if I experienced problems.

Just like I’ve created a detailed list of medications for my mother—including those drugs she cannot use—I need to do the same thing for myself. If I had had this information in front of me on Monday, it would have been easy to ask for an alternative antibiotic on the spot. I know that my doctor did check for drug interactions, but perhaps the extent of a potential interaction is recognized as being more serious by one doctor than another.

A complete drug list should include:

• Brand name
• Generic name
• Dose and frequency
• Reason prescribed
• Prescribed by whom
• Any medications to avoid, and why
• Date of last update to list

Read this post in its entirety:

Don't Try to Remember EVERYTHING!

Please, Let's Just Schedule Infusions at the Hospital

I wasn’t sure what to expect at the new office, but at least I knew that things shouldn’t change too much since the important relationship I already had was with my rheumatologist.  Of course, there was lots of paperwork to fill out and I brought a copy of my medical records which had been requested from the other medical center.  I realized that I would need to learn this office’s procedures, but it was a bit odd not recognizing any faces as I checked in.

When I did get back to see my rheumy, the visit went smoothly.  I didn’t really have many complaints which gave her the extra time to hound me about exercising more.  (I know that I need to do that for my own well-being, not just for my arthritis.)  We also talked about scheduling the next round of Rituxan infusions.

Read this post in its entirety:

Getting What You Need May Not Be So Simple When Your Doctor Moves Offices

Carnival of MS Bloggers #88

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

laughter, motion, and self-advocacy

Focusing On Laughter

from Kaleidoscope Muff
 

I believe that once you’re diagnosed with MS, you land on every MS-connected mailing list. I constantly receive notices about lectures, advertisements about medicines, and magazines. Last week, the edition of MS Focus arrived, and it gave me a few smiles. That was the purpose, actually, since all the articles concerned laughter and its value in sickness. I’m usually a hard sell, but I bought into this theory, and I read nearly all of the articles. There were a few bloggers in there as well, and I really enjoyed reading an MS-related publication.

Then I asked myself, “Self do you really believe that ‘laughter is the best medicine?’” That’s when I realized how long it’s been since I just laughed out loud! Sure I’ll give a little giggle at something funny, or I’ll smile when I feel content (or even to just make others feel happy.) But when was the last time I really had a good laugh? Someone may tell a humorous joke – tee hee. I’ll read something written with a ‘tongue-in-cheek’ attitude – ha ha. There’s a sit com I’m watching – har har. But a really good, non-stop belly laugh? Too long ago…

I can remember, in my past, a lot of times wanting to laugh, and having to stifle it because of my location – usually church, but it’s happened elsewhere, too. I can still visualize that urge rising in me, and bending over to prevent the laugh from escaping. I know the feeling of the tears flooding my eyes because the laugh just wanted a release. Now, I wish I had even those feelings!

I’m not saying I’m not happy – basically I am. I get curmudgeonly over this crappy disease and all the losses I’ve incurred because of it. But my nature, my essence, my inner being is that of a happy soul. I’m just saying that I don’t laugh anymore. I don’t hear/see/feel something hysterically funny and respond by laughing. According to the magazine articles, such laughter can help us physically. So what do I do? Laughter is something you can’t truly fake. It’s either there, or it’s not.

One time, not too long ago, something happened that struck me, and I wanted to laugh. It had been so long since I used those muscles that I got a pain when the laughter began – a stitch in my side – and I stopped at once. Is that it? Do I not laugh because it hurts? I just don’t have the answer.

Am I an oddball? Will the laughter return someday? Is there something wrong with me? Are there others out there, who while feeling somewhat happy, cannot laugh? I need to give this some thought…

Peace,
Muff

The Magic of Motion
from Kate of Dancing with Monsters

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe,  heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.

MS Patients Have to Play Doctor

from Matt's Multiple Sclerosis

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed... Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That's right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn't fair... Doctors spend years going to school so they can get that little piece of paper that says "Yup, your a doctor" but then it's like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it's up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren't killing us....

This brings me to my next point: It's just a piece of paper... All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand... How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says "This person probably should know what he/she is talking about" but like any other class about any other topic you are going to have your students who barely passed, shouldn't have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth... We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these "half-ass" doctors out there.

Now I better stop here to make something clear... I don't mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it's only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue... Mostly everyone I know in fact and it shouldn't be that way... Doctors have a Job and that's not to walk around protecting their ego and insuring people call them "Dr. So and So". No, it's to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It's really not that hard...

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I'm going to have to play doctor half the time then I am going to get what I want ALL the time... I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say "look this this and that didn't work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that" without that doctor shutting me down and ignoring everything I have to say simply because they don't want to hear me playing doctor.

If you don't want your patients playing doctor then don't put them in a position where they feel they have to...

I want to get better and I want to get better more than my doctors want me to get better so I will continue to play doctor until I get what I want and that's ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I'm talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don't Stop Learning!


This concludes the 88th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 2, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 31, 2011.

Thank you.

Comments for this post.

Self-Advocacy, Phlebitis, and Infusions

"Ouch! Sorry I didn’t mean to jump like that.  The pain was unexpected."  The infusion nurse Kay (not her real name) said, “that’s okay, we don’t need to flush the rest of this saline.”  It was the end of an extremely long and stressful day.  Let’s start from the beginning.

There I sat in the chair, cheerfully ready to greet a long day.  Kay checks me in and hands me the lunch order form.  It is Rituxan infusion day and I’m ready to get some B-cells depleted.  Symptoms had begun to return after a lovely remission and I was anxious to get to that point again.

Kay got the supplies ready and prepared to get an IV started.  I had promised myself at home that I would not let her try to stick me again.  Her track record was 0/4.  And my previous visit took two nurses and six sticks to get an IV started.

“Who was the other nurse which the head nurse tried to call last time but wasn’t here?  Can we call her to get the IV started?”

“Oh, she’s really busy.  She wouldn’t be able to come down here for this,” says Kay.  Darn it if I let her try three times to get an IV started.  That’s 0/7 now; and yes, I’m keeping track

Read this post in its entirety:

Living with RA: Infusions, Phlebitis, and Self-Advocacy


I also discussed this situation three weeks ago on the blog in the post Phlebitis after Intravenous Treatment.  BTW, I'm on my 2nd round of antibiotics as the 1st round was not quite enough and the infection noticeably began to grow again.  I have three more days remaining and there shouldn't be any other little infections ANYWHERE in my body now.