Living with MS

When I titled my blog Living! it was because that is what I intended to do, MS and all. The first few months after my diagnoses I did a great job of "living!" I started two businesses, completed 200 hours of yoga teacher training, refashioned over 10 garments and wrote almost daily. I didn't work for almost five months and that really helped me get on with the whole business of living life to the fullest. When I went back to work, the other shoe really dropped. Both my health and my mental state deteriorated. There was a long period where it was a struggle to just get through the day. I remember battling my own mind every morning trying to just get up the steam to confront my life. I was haunted by the desire to crawl back into bed beside my husband and to just forget. Sleep was like an oasis in my desert of suffering. There is no way I can call that existence "living!"

Things have shifted again. I am no longer manic like I was in the summer. I find that I tire easily but that my health has been generally improved over the last month or so. I do not feel buried anymore. I think what I am beginning to cultivate is balance. I am not swept by highs and lows, rather I find that I am learning what brings me contentment.

I am not building things, creating giant works of art or effecting any major global changes but I am also finding new strength and perhaps even a few glimmers of wisdom. MS has forced me to grow up and to work on myself in ways nothing else ever has. A few months ago I felt rudderless. I questioned who I was. I still do not know what the future may hold for me but I have a renewed sense of self. It feels good to start trusting myself again. I am actually finding that I can look ahead again with less trepidation. I have been terrified to make any commitments outside my job but I am finally willing to try making a few. Today I got to sub for a yoga class and I have commited to teaching two more classes this week. This is a big step for me. I am finally willing to trust that I will be healthy enough to teach the two classes I promised I would.

Lately I have also begun to make some social commitments again too. So far I have made it everywhere I said I would. I think this has helped my confidence and renewed my willingness to look ahead. This illness has taught me to live one day at a time and to never take anything for granted and so what may seem inconsequential to the average person, seems huge to me. I feel like I am Living! again most of the time and that is what I am grateful for today.

Dress for Success

Fashion is one of my personal passions although some days I feel like I can hardly get dressed, let alone look good. Getting dressed isn't always as easy as it sounds. Finding the right look for each individaul body and curve can be tough. For people with disabilities and chronic illness it can be a downright challenge. Thankfully, Merelyme has come through with an article that simplifies dressing for those with MS. Please check out her tips by clicking here.

Sometimes I envy my dog

Every envy your pet? Here's my perspective on the life of my dog.

Let me start by saying it's a good life. I get fed at the same time every day and someone always prepares my meal for me. I also get "treats" a few times an evening and I don't even have to run out and buy them. One of the best things about my life is all the naps. I can sleep 14 out of every 24 hours and nobody ever calls me lazy or depressed. There is also all the good loving. Yeah, my mom and dad disappear for 8 to 10 hours at a time but once they get home they immediately greet me with kisses and kind words. My daddy usually sits on the floor and snuggles with me for about 10 minutes right after work. Then, he changes clothes and takes me for a long walk. That is my favorite part of the day. On the weekend, I usually get to go to the dog park and meet new friends and run around off-leash.

Another thing I realy love is that I don't have any chores around the house. My only job is to look cute and stay off the couch if mommy and daddy are paying attention. Sometimes they also buy me toys and treats just because I'm so darn sweet. When I'm bad they never really get that mad at me. I do get a swat or a "bad dog" every now and then but about 5 minutes later they forget what I did and give me another round of pets and kisses. They are never mad for long and they don't yell at me. Sometimes they yell at each other and I get scared but then I see that I am not in trouble and so everything is cool.

One of my least favorite things is going to see the vet but that has perks too. I always get a treat when I'm done. I never have to decide if I need to go to the vet either. My mom and dad decide for me. They buy me insurance and they always pay my bill. Suckers!

Ok, before I get carried away... There are cons to a dog's life. I am dependent on others to go out. I do have to wear a leash when I walk. My mom and dad don't just let me visit with any stranger. I do get bored sometimes but then I forget I'm bored because my brain does not remember much for very long. Sometimes I get lonely but I do have the cat to keep me company. Overall, no major complaints here.

Thanks for listening,
Pierce (the family dog)

Doubt your doubts

I remember that I used to have a yoga teacher who always encouraged his students to "Doubt your doubts." The teacher spoke about this primarily in relation to asana (the physical yoga) practice but always encouraged us to look beyond our mat to see how pushing through physical challenges in yoga could help us push through challenges in life. At this moment, as day-to-day life is slowly becoming less difficult and overwhelming for me, I find myself ready to confront some of my own doubts. Not only am I beginning to doubt my doubts, I am coming to note some of the positive changes that MS has brought to my life.

My doubts scare me. I fear for the future. For a while, this was paralyzing. I awoke every day with anxiety and questioned whether I could even make it through the day. It has taken me a long time to realize that getting through the day is not as a hard as I imagined. In fact, getting through the week is getting easier and I am no longer full of worry and dread. When I find myself swept up into a negative thought spiral, I force myself to quickly snap out of that frame of mind and when I cannot bear a train of thought, I have to let it go until I can.

We just decided to refinance our house. When we made the decision, my husband asked, "Are you sure about this considering your health concerns." I told him that I was and that I was ready to start living with the belief that I will be ok. I realized I would rather live with this trust than avoid living because of what might be. This is not to say that when I looked over the paperwork for our refinance that I was not again filled with fear. With the refinance, the term of our loan again becomes thirty years and the amount we will borrow is slightly larger than the original loan, the rate however is much lower and over the life of the loan, we will save substantially. Thirty years though, thirty years where I need to be healthy enough to pay my share. Thirty years where we both must be able to cover our share. Thirty years where I will have to probably work full-time at a demanding job. I think this and suddenly I am swept into current of despair. And yet, this is how almost everyone lives. No one, no matter what their health status, really lives in certainty. We cannot know what the future will hold so to let fear paralyze us is irrational. I see this now. I can no longer fear either my disease or my future. My husband and I must just take each day as it comes and trust that together we will sort things out.

I do not claim to suddenly be without fear. Honestly, I am full of it but I also see that I cannot let it keep me from doing things, making committments or planning for the future. I think that when the future starts to sweep me away, it is most important that I reground myself in the present and remind myself, "Today I am ok." It is also important to remember that I can restart my day at any time.

One of the greatest things I have learned from MS is how to live and appreciate one day at a time. I have learned to prioritize. I have learned to say "no." My passions have also shifted. I used to hinge most of my identity on my career and my accomplishments. I prioritized my job above all else. Now it seems important but primarily as a source of income and as a place to occupy some of my time and talents. Honestly, I could do without it completely. It is not that I have quit caring, it's just that I care way more about feeling healthy and spending time with my husband and my pets. I care more for accomplishing little things around my house than I do about accomplishing them in my career. I care a lot less about being recognized for what I do. I just want to do things well and then move on with the rest of my life. Today I am grateful that I have learned these things even if the learning was hard.

Responsibility

It is fitting to me that Barrack Obama decided to focus on personal responsibility when he spoke today. I have actually given this idea a lot of thought over the last few months. I have always taken a great deal of responsibility for the things I do and the things that come to pass in my life. At times I have done this to a fault, accepting responsibility for things I cannot single-handedly control but always wishing I could. To me, Obama is the epitomy of responsibility. I rest easier knowing that he will do everything within his power to make things right. He was absolutely right to call on citizens to also take personal responsibility for change.

My deep hope is that his message actually gets through to people. I realize he cannot do this all alone. None of us can but we must take responsibility for our own little corner of the globe.

Here begins my brief rant... I have become increasingly frustrated with my students lately because of their unwillingness to take responsibility for anything that happens to them. Obama is right to say that we need to improve education in this country but to do this, we will also need a major increase in personal responsibility on the part of parents, students and the community at large. Some educators may be failing our students but the responsibility does not lie solely with individual teachers and school districts, it lies with everyone involved.

During a typical day I listen to endless student complaints. I literally touch almost every desk in the room and have an individual conversation with each kid to get them started on their daily warm up. My classes are entirely routine-based, objectives and agenda are posted and I go over my expectations in detail in English and Spanish for every class. Usually I repeat myself multiple times and then walk around to each student. Still, over half the class does not get to work. Then I poke and prod at every kid and still at least a third of the kids still drag their feet. I have some students who just expect an "A" and get offended when I don't give them a perfect score and offer them feedback. Many of them act like I am mean for asking them to be silent when I talk, put away their cell phones and do the assignment. They act shocked when I take points off their participation grade. They also act shocked when I take points for their continual cheating and copying. Some of them never even take responsibility when they are caught red-handed in the act of copying and/or cheating. I get questions like, "Miss, why you put me an F?" Why indeed? You did nothing and you earned the F. The concept that grades are earned has not registered with most of my students. No wonder education is a mess.

All this said, I still take personal responsibility for what happens in my room. I try to focus more. I rewrite my plans in pursuit of greater excellence. I conference with students and parents about grades and behavior. I own my role in the room and I take responsibility when I am not on. Like Obama, I just want those I serve to take some responsibility because no one person, no matter how amazing, can do it alone.

Progress

Today I wanted to share a brief update on my progress with my new year's resolution and an update on my health and happenings. The picture of me included in this post was taken yesterday and I am pleased to announce that the dress I am wearing is my latest refashionista project. If you want to check out some of my other work click here.

So far I think I am doing a good job working toward my goals for the new year. My primary goal was to worry and stress less and to work toward a state of peace and happiness. Ever since Sunday of two weeks ago, I have been feeling less anxious and more content. While I still worry at times, I have not been feeling the anxiety nearly as much. The other day I wrote about the "reset" button. I remarked that just telling myself that I can start my day over at any time really helps me stay positive. I have also helped myself by being active and focusing on my positive contributions to my own life and to others.

One of the big bonuses I have noticed since I started to feel better mentally is that I feel better physically too. I still get fatigue and nausea at times but none of my symptoms have lasted more than a few hours. When I am tired or I have a headache, I am liberal with the naps and ibuprofin and that has really nipped things in the bud. Since I have felt better, I have napped less overall and been able to do more things and get out and about more. Last weekend I didn't nap at all and I felt fine. This weekend I also skipped the naps. I actually made it out to several fun social events as well. On Thursday I went to my little sister's birthday party. On Friday I went to a girl's slumber party at my best friend's house and on Saturday, I went to my older sister's birthday. I think this is the most I have done in a long time.

Since I have been feeling better, I have also been able to do more around the house and at work. I am slowly regaining my confidence at work. I have even had some days where I was genuinely excited on the job again. At home, I have been able to clean my house more often and extensively than I have since my diagnoses. I have also kept up with my cooking responsibilities so my husband doesn't always have to do all the work. I think my renewed ability to be helpful and active has helped both my physical and mental state.

Today I am grateful that I got to go to yoga. I am also grateful that I have tomorrow off to celebrate Martin Luther King day with some of my family. Most of all, I am grateful that Obama will be inaugurated this week. This adds to my hope for the future.

P.S. check out my Wellsphere profile and vote for me...

Wellsphere Profile

I just connected my blog to Wellsphere. Please check it out and vote for me for the "People's Top Health Blogger Award."
Thanks,
Nadja

You had questions, here are your answers

Please check out the latest from Merelyme on Health Central. She just got the answers to many important questions posed by fellow MSers. Check out what the doctor has to say. He even briefly answered one of my own questions:)
Happy reading,
Nadja

Don't worry, Be happy

Lately I have noticed that a lot of MS bloggers have been writing about living and coping with anxiety (myself included). Since my new year's resolution is focused primarily on dropping my worries, I thought I should post an update for my readers.

I have been feeling much better emotionally since about last Monday. It is possible that my PMS just wore off but it seems I have been doing a few things myself to drop the worrying and to cultivate a positive state of being.

Nothing is perfect but I am embracing the idea that things will work out for me. I guess you could call this faith. My faith is not in some other being but more in myself and in the course of my life. I believe I can and will, be confident again. I believe that in life we generally get what we can bear so in time, I will learn to bear whatever challenges come my way. My confidence has been shaken but I am finding new belief in myself. I can see where I have erred but I can also see what I have accomplished. I realize that I still have the instincts to be a good teacher and to be a good support to other people. I often get emails from other people where they tell me that my blog helps them. This makes me feel good. I prefer to give rather than need but I am learning to accept help.

The second thing that is really helping me out is the idea that every time I confront a challenge or enter a bad or anxious state of mind, I can "press the reset button." To do this, I must be very mindful of my thoughts and emotions. When I notice my mind dwelling in dark places, I need to breath deeply and "reset" my mind. I have realized that a bad start to a day does not have to mean a bad day. An anxious thought needs to be put in its proper place. Whatever makes me anxious can be put onto the back burner until I actually have to deal with it. I also can reduce my anxiety by doing at least one "productive" thing a day.

Today I am thankful for my renewed positivity.

MS Society Care Manager

I thought that I might take a brief moment to tell other folks about the help I am getting from the National MS Society.

Several months back I had a relapse and during that time I grew desperate for help and answers so I called the National MS Society to see how they could help me. I was looking for help with free counseling services. Although at the time they were not able to present me with such a resource, they said that if I completed an application for assistance they could assign me a "care manager" who would be able to more directly identify and help me meet my needs.

Shortly thereafter I completed the paperwork. It was not long before I got a call from an outsourced care manager who helped me with getting confirmation of my diagnoses from my neurologist. All I had to do was to submit paperwork stating that his office could release that information to the MS society. The neurologist's office was slow to respond to the request for information but throughout the process, the woman initially assigned to my case stayed in touch and kept me posted.

Within about two months of my initial application, the lead care manager at my local chapter had gotten a care manager assigned to me. I just met with her and another care manager for the first time on Thursday. Their approach was great. They come to your home and visit with you. First, they talked to me about what I needed. They took almost an hour just to listen to me and to take notes. They offered several good short term suggestions and made notes about what services I might need now and in the future. They also made a list of things they would look into on my behalf. They were kind and caring and did a great job of listening and asking questions. My official care manager stayed on after her companion left to complete all my paperwork.

The whole initial experience with my care manager was very good and I am excited to learn how they may be able to help me in the coming weeks and months. I will continue to blog about my experiences as the process unfolds so that perhaps other MSers can benefit as well. From what I can tell, they can help with a variety of services including transportation, counseling, meals, assistive devices etc... Please feel free to send me questions about my experiences and/or their services and I will try to help you out.

A good day

Today I am grateful that I not only made it through the work day, I did it with finesse. I arrived early and without major anxiety. A co-worker quit so I had to cover her class during my plan but I remained unfazed. I taught 6 classes straight with only a short lunch break and I felt fine. I kept my energy and my smile all day long. I even stayed late for a meeting and to wrap up some details. Today I feel good about myself, confident, capable and guilt-free. This is a welcome change.

Yesterday afternoon I decided again to try changing my mind. When I awoke today I remembered this. Last night I dreamed about the first time I dated a new guy and it reminded me how exciting fresh starts can be. As I went into my day I told myself, "Look at this with the excitement and the eyes that you would some new event in your life. Don't let it be stale." I was able to hold that with me all day. I remembered to smile a lot at the kids and to praise their efforts. I remembered to ask them about their vacations and to welcome them back. It felt good to be so positive.

I won't claim that each day forward will be the same but I am reinspired to confront life's challenges as they arise. I am thankful today for this boost in my confidence.

Through a different lens

It is bizarre but one of the best methods for feeling good about my life, changes or no, is catching glimpses into other people's lives. That's one of the things I gain in the blogsphere. I read accounts of the lives of other people with MS and suddenly find my life rather uncomplicated. It is strange that I often have to contrast my life with that of others to gain perspective but perspective I do gain.

I have been a bit sick, anxious and down the last few days but today I went to my grandmother's house anyway because I knew I would regret cancelling. I'm glad I went because my visit also gave me a lot of perspective. My grandmother is always keeping busy but it seems to always be with the same tasks and there all within her walls. She is on oxygen and her vision is so terrible she can barely see. She still has not finished completely unpacking from a move that was years ago. Now she is looking at moving to an assisted living facility and that will mean packing up and giving things away again. She knows it's the right move, the family knows it, but she just keeps dreaming of winning the lottery and staying put. My sister says she is just nuts but I actually kind of get where she is coming from. I said to her earlier that even though it can be hard to maintain my lifestyle, I worked for it and now I'm not ready to give things up just because of MS. She said that is sort of how she feels. She has had a long, hard life and now she just wants to enjoy what she has. I totally get that.

When I was at her house we ran into another woman from my grandma's building in the hall. This woman instantly launched into an account of her life that made me want to cry. She said she was so tired from taking care of her husband. He has Parkinson's disease and is bed-ridden now. His ability to swallow whole foods is gone and he can hardly communicate anymore. She doesn't want to put him in a nursing home on medicare so at age 85, she is caring for him alone.

It may be sad commentary on my own generosity, but both my grandmother's situation and her neighbor's reminded me again just how lucky I am. Today I am grateful for many things. I am grateful that I have full use of my body and balance. I am grateful for my general good health and my husband's. I am grateful I have not had to make the hard choice to give anything up yet.

Reevaluating

I see that my most recent post provoked a lot of comment and I am taking those comments to heart. It seems that the consensus is that I don't have to be perfect by tomorrow. I am reminded by these comments to be present and to be ok with my present even if it is not what I think it should be. I want to change but that does not mean that I will find instant clarity or happiness. I just need to be wherever I am right now and try to glean what I can from it. I was reminded that if everything were easy, I would probably be bored. I somehow thought that when I became a yoga teacher things would just fall into place and I would be peaceful and wise (lol). Now I am going to take two steps back from all the self-monitoring and critique. I am going to take the good advice and just enjoy the things that are working. Sometimes things have a way of falling into place when we don't try so hard to push them.

On another note, please check out Lisa Emrich's Carnival this week. I have a little something up there but mostly I recommend the Carnival because it offers a great chance to get new perspectives.

Now upon Heather's recommendation here is one thing I am grateful for today. I am grateful for my loving, caring husband.