Blog

Great Launch Party!

It was an amazing party at Angst gallery last weekend to launch this book.  Thank you to all who joined us and helped me celebrate this book release! My husband and kids were kind enough to purchase a couple of bouquets from the farmers market to have out on display.       And there…

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Mentally Disabled?

It was at an informational luncheon for MS that I met the first person to tell me she didn’t work anymore because of the reduced mental capacity she had due to the disease. This was in the beginning of my MS Journey; before I had many symptoms. I remember being in wonder at how someone…

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Let it be.

Something amazing happened to at the beginning of this week and I feel like a transformed person. I experienced a moment of tremendous relief. I have only experienced relief in this sort of magnitude once before in my life. That was when the excruciating MS pain I had been feeling for over a year finally…

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Uneven Playing Field

I went to the gym today to do my normal Tuesday/Thursday HIT (high intensity interval) class. I ended up leaving early, after only 20 minutes instead of the full 60 minutes for the class. I told the instructor, “I just can’t do it today.” I then I started to cry.  She asked if I got…

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Chapters

I have always felt that my life has happened in distinct chapters.  From gutting fish in Alaska, to backpacking through Europe – these chapters have molded me and made me who I am. Some are longer than others, and I certainly enjoy some a lot more than others, but all have imprinted on me. The…

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First World Problems

A while ago, my husband used the phrase, “first world problems.” I think it is related to a phrase often used by our neighbors, “problems of the rich.” They both mean the same thing. How can we feel bad that we don’t have enough money for the perfect (insert your want here), when we have…

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Was it Worth it?

A question that many people ask me after I’ve had the HSCT is ‘was it worth it?’ I always tell them that I cannot decide that for them. It depends on your personal situation, and when I did it I had no other choice. I was feeling like I was not living anyway, so if…

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Feeling Good

I am feeling good.  I have gone out to exercise three days in a row now. I am going to keep it up. I do not get so tired that I feel like I’m going to die afterward, but I get tired in the evening, and that is OK. I do not feel guilty. I…

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Roller Coaster

I go through a lot of ups and downs these days. The phrase about transplant recovery being a roller coaster is no joke! I also struggle with depression, due to the MS, and exacerbated by my new life of disability, recovery, and minimal energy. Instead of complaining about how crappy I’ve been feeling lately, I…

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Balance

Balance is an important term for people with MS for many reasons. There is the physical balance that you lose which makes is hard to run, walk, and do yoga. For instance, I stopped running outside a while ago, when it got to the point that I fell every time. But luckily, because of the…

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More Adjustment

  https://www.facebook.com/Multiple-Sclerosis-Awareness-1573486702872865/       I saw this ad for a sweatshirt on Multiple Sclerosis Awareness Facebook page. This all resonated with me deeply. The line that got me the most was, “I dream of a person I was.” I say this to myself in some form or another on a daily basis. “I wish…

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This is Me

Symptoms of True Depression: You don’t want to leave your bed Complete exhaustion Inability to stop crying Not caring about personal hygiene You don’t want to talk to anyone     Benefits of it as part of the disease: You can recognize what it is and why you have it Knowing why you have these…

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Recovery Continues

I have been very unhappy with how my body performs lately. A lot of it is the recovery from the HSCT, and also the toll MS has taken on my body. But it is also that I have been having a hard time figuring out how to exercise in a way that works for me…

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The Need for Complete Honesty

I am once again finding the need to rein myself back in for a reality check. I seem to have a personality that makes it impossible to be completely honest with others or myself. When asked how I’m doing, I always respond, ‘great!’ ‘I am so much better, I am so blessed, I am so…

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Decision Revision

So maybe it’s time to make a new decision. Yesterday felt good for the first two hours of the day, and then I had to take a three-hour nap before I picked up my daughter from preschool. I then went to my son’s end of year party, my daughter’s pre-school graduation, and my three kids…

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Decision Time

I have once again broken down to tears when I realize what large cognitive effects still remain from either the MS, or the transplant itself. There was a 5-hour “spell” where I lost consciousness after all. I was trying to help my daughter with her fifth grade math, and I could not figure out why…

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Recovered! Or Close Anyway. . .

I am only two days away from my one-year-birthday, and I am finally starting to feel normal. It is the most amazing feeling! When it has been years since I’ve felt OK, it feels miraculous to feel normal. I am not always depressed and tired. I am not going to bed after I get my…

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Almost There

I am sick again, but it’s different this time. I am not knocked out of all my energy and it’s just a cold. This is really good news for me. I was really sad when I realized I had it, the snot, the sneezing, all the normal stuff. However after being awake for a couple…

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Remarkably Normal

I have been super fortunate in the last week. 11 months post transplant and I’m finally feeling good. I felt good when I first left the hospital, great even. I wanted to walk a lot and just enjoy feeling good. Then as time went by, and I got off the steroids and other meds that…

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Is Recovery Taking Every Piece of Energy I Have?

It is a mixed question, or rather a mixed answer, about how much energy it really takes to recover from myeloablative HSTC. Sometimes the answer is no. Like today luckily. I’m picking up my parents to come visit the kids and me for four days and we are super excited. I was able to get…

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You Decide

I am very well aware of the fact that I have not blogged in a while. When I started the blog, I had a clear purpose. I was starting to go downhill in how much MS was affecting me. I was still trying to work, workout, and stay positive. My blogs were about different ways…

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The Gift of Rest

My husband gave me the best gift today. He told me to sit down and do nothing. OK, maybe I should start from the beginning and outline my week for you. That way you’ll understand better why he would tell me not to get anything done. On Tuesday, I decided I’ve gotten my house unpacked…

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Recovery

I am very aware that I have not posted in a long time, and I apologize for that! This recovery from the HSCT is harder than it was initially. I am gettting knocked down by colds all the time, fatigue had moved in for good, and I even spent a full week in bed when…

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The Big Move

The Merriam-Webster dictionary defines anxiety as “fear or nervousness about what might happen.” I am currently feeling a very large dose of this psychological entrapment. My three kids, my cat and dog, and my friend who offered to drive as I still cannot concentrate at a level that would make it safe for me to…

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Amazing News!!!

Breaking news in Norway. HSCT now considered a part of the National treatment plan for MSBreaking news in Norway. This is amazing!  I am so elated for all of those in Norway this will help, but also very sad that I know the US will be far behind because we are such a litigious country!…

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The Good Stuff

I have recently posted a couple of depressing blogs. At least they seem so to others that love me. I want to make it clear that I do not find them depressing. I use this blog to be able to say the feelings I am having that I do not readily tell people who ask…

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The Questions Don’t Stop

I am watching this show, Six Feet Under, which has an amazing story line and character development. One of the brothers has found out he has something wrong with his brain that can cause an embolism or stroke at any time and he doesn’t know what to do. I can so intimately relate to this…

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Everything Will Work Out and I Cannot Stress Out

This is a very busy time in my life. No matter how much I try to simplify things, they always get out of control. Recovering from a Stem Cell Transplant is apparently not enough for me! My body is not back to normal. I’m still on steroids, and will continue to be for some time….

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Accepting My Current State of Existance

Something I am getting better at, which is necessary for life in general and not just recovery, is accepting whatever my current state of existence is. Whether I feel like I’m in shape, excessively tired, or productive or not, I need to be able to accept where I am in life. Not just where I…

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My First Cold, and My First Bath

Last night I filled the bathtub up with delicious smelling water and bubbles, lit some candles and took a hot bath. That is something I haven’t done since February. I couldn’t because I have had my Hickman line in my chest and it hasn’t been safe. It was so relaxing; I just sank in and…

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Remembering to Appreciate the Little Things

Today I am happy. I was feeling really unhealthy, like my body couldn’t move easily. It is hard to explain, but after not doing any real workouts for a week, I felt like I was sick again, and I couldn’t handle it. I was happy to have my husband back, which is helpful for my…

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The Ugly Truth of Recovery

I feel ugly and weak. It makes no since that I would harbor these ugly faults when I have had such a positive transformation. I should not be so vain that looking like a man with super short hair still bothers me. At least it is growing back. I should not be so proud that…

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First Run Post Transplant

Today I went on my first run post-transplant. It was a huge milestone for me. I have been waiting and waiting until I could. It’s part of how I identify myself. It’s part of how I ground myself. And it is the only time it is fairly easy for me to live in the moment….

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A Bad Day With an Upside

For a while now I have been having a feeling of being unsettled. Like I was waiting for something but I did not know what I was waiting for. Part of it is obvious. I’m waiting to be completely healed. That will be a very long time, which I am very aware of, so I…

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Recovery – Day # 97

I am very aware that I tend to sugar coat things and make it seem like everything is fine and I’m always doing great, so today I am going to talk about the other side of it. Then with that all out of the way, I’m going to relax and enjoy the gift of being…

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Writing Again

Hello, followers!  I’m back with a new purpose for this blog.  I have gone through the HSCT (Hematopoietic Stem Cell Transplant) process and am on day 98 of recovery. I did the full myeloablative approach, so recovery will take a full year, and even longer for all my cells that were lost due to MS attacks…

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To All My Followers

I have now moved up to Seattle for three months to start my treatment.  My blog up to this point has had two main purposes: to help myself figure out what’s really going on in my head, and to motivate others to turn their thoughts from the negative to the positive.  I will not take…

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The Miracle on 94th Avenue

I was in my bed writing, when my husband pointed out that I had yet to blog about me being accepted into Seattle at the last minute.  More accurately, the insurance changed their policy to cover my treatment, I was accepted into their study long ago.  Just day’s before we transferred the money to Italy,…

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Unwanted Guests

With MS, it is not just how you feel day to day that is questionable, but it’s hour to hour that really gets me.  I can go from 1 to 10, in terms of pain, in less than an hour.  And Pain’s BFF, Fatigue, is never left behind.  As I can no longer predict my…

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4:00 AM and Spinning

I have always had a bit of insomnia.  I recall times in high school where I would stay up all night watching TV because I couldn’t sleep, then sneak back into my bedroom before my Dad got up so he wouldn’t make me stay home.  I hated missing school.  If I missed a class, I…

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Six Weeks Away, and Falling Apart

I am now just a six short weeks from leaving for Italy.  Up until now, I have been very brave about the whole treatment.  I know it’s going to be hard and I will go through a lot of pain and discomfort, but I know I have to do it.  I have to do it…

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Back with a plan. . .

I have been not posting for a few months now, per my lawyers advice, while we were waiting for a final rejection from the insurance company.   Well, we were trying to wait for them to cover it, but we ended up getting a final rejection.  Now that that’s over, I can freely write about whatever…

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The Gifts We Take for Granted

I’ve had this blog in my head for over a week now, and I’ve been putting it off because I’ve been doing exactly what I’m blogging about right now, enjoying the gift of time. I have quit the waiting game.  This is not to say I know when or where I’ll be treated, yet.  I’m…

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Hurry Up and Wait

With the help of my family, I have decided to get an HSCT, or stem cell transplant.  This is a process that has been practiced for many years for blood related cancers and for MS, but the FDA only approves it for the treatment of cancer.  What this means for MS patients is that insurance…

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The Beginning of the Next Chapter?

Something big is about to happen and I can feel it running through my body like a surge.  It is scary, exciting, exhilarating, and impossible to think about all at once.  I am driving home for the weekend after my first round of testing, and will be back on Monday for more.   And once it…

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Hybrid

I am learning that there are multiple levels of disability for those of us with relapsing remitting MS (RRMS.)  The first level is called ‘Think’; this level comes right after the diagnosis before you really have any disability.  You think about what might happen, what the future might or might not look like, and you…

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Follow Up

OK, I cannot go to bed knowing I just put a depressing blog out there.  The point is, I am in limbo right now.  I’m between a possible cure and giving in to disability.  But the truth is, I can’t think of a single time I’ve ever given up.  I am not going to start…

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The Waiting Game

When I first got diagnosed with MS 13 years ago, I remember meeting a woman who was in an electric wheelchair.  She told me something that was very hard for me to comprehend.   She said she did not need the wheelchair, but she used it because it allowed her to save some energy to do…

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Perspective is Everything

Last night, my mother told me she was proud of me.  She said she knows how hard it was for me to make the decisions I have in order to conserve some of my energy each day.  I have made the choice, and I emphasize the word, choice, to start using a handicapped sticker on…

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A Cure for MS?

I have not blogged about it yet because I am not exactly sure what is going to happen, but I  have made the decision, with my families help, to get a Stem Cell transplant.  I believe it to be a cure, and I’m not quite sure why it is not being reported about anywhere yet,…

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All Hands on Deck

When everything falls apart, it’s all hands on deck!  We all have good days and bad days, and then there are the days that start out really good and crash into the pavement at 90 miles an hour. This morning I woke up awake, refreshed, and with no pain or fatigue.  Then somewhere around 1…

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Random Happiness

As I am preparing my speech on emotional wellness, I have lots of thoughts about what I feel is really important for happiness in life that is applicable to almost everyone. I am very aware that everyone’s journey through life is their own, and people have different likes and different things that please them. Keeping…

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Don’t Over-Think it!

Something that has been keeping me very busy is that I have been asked by the National MS Society to give a speech on emotional wellness.  I am putting a lot of thought into how to say everything I want to while still keeping in mind that I want it to impact others so that…

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Stay Strong Until there is a Cure

I have been so busy lately I’ve had a really not been making time to blog.  The irony of this is that blogging has become one of the things that helps to ground me and keep me happy in the mist of all the uncontrollable chaos around me; so I decided to write a blog…

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Adaptability

Adaptability ~ the ability to change and adapt to new circumstances. This is a trait that I find very unnatural as a human, yet very important as someone living with MS.  I find that in order to keep moving forward and staying positive, two very important factors to staying happy, I need to adapt as…

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A New Way to Choose

I have been feeling sorry for myself the last two or three days because I am experiencing something my doctor thinks is a Pseudo relapse brought on by stress.  This means that my body is presenting all of past symptoms: pain, lack of coordination, my fingers not doing what I’m telling them to, and many…

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On the Other Side. . .

All too often, we have a tendency to fall into the trap of thinking that the grass is greener on the other side.  We tend to think that if we could just be like so-and-so life would be so much easier.  If we just had money, or fame or were healthier, life would be better….

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The Power of a Positive Attitude

My Dad asked me if I could send him a couple of my blogs that I think show how I keep my spirit up.  His friend had asked him how I could stay so positive all the time, so he wanted to send him some of my blogs that outline how I keep my thoughts positive.   I asked how…

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When I Grow Up, I Want to be. . . .

How did I get here?  At some point, I think we all come to the scary realization that we are now all grown up, and this is the life we’re living.  For the lucky few that knew what they want to do from their senior year in high school, got through a four year program,…

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Reactivity

One of the reason’s I love to run is because it frees my mind to wonder without getting bored; this is when I have the most clarity in my thoughts.  Often I think of great things to blog about, but if I’m too tired after, I don’t get around to blogging them! Last week I…

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“My Awesomeness”

I think it is all too often that we forget to marvel in our own awesomeness.  As members of society, we are taught to have humility and not boast about our own strengths.  This does make you appear to be a more likeable and humble person to others if you do not act in a…

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Twirling in the Wind

Here’s my shout-out to you, Jackie, I know you’re reading this! I often try to figure out how to be the best me I can be.  Over analyzing myself can lead to negative thoughts where as noticing the traits in others I admire help me find out what I want to be better at. This…

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Because I Can

I have always been into running, but I have not always been able to do it.   As someone with relapsing remitting MS, it is not always possible to work out.  I go through periods of weeks or even months where I can hardly get across a room, much less get to the gym.  This last…

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The Benefit of an Off Day. . .

With my latest goal of being “good enough,” I have found the freedom to pursue my goals without the pressure.  Without having timelines or defined obligations to meet, I find that I still try to get everything done; I just don’t feel as stressed out about it. Perfect example: yesterday at the gym, I had…

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Good Enough

I am a type A person that also suffers from OCD, depression, anxiety, and a weird need (as if it’s possible) to be perfect.  Some of this is genetics, and a lot of it is just symptomatic of having MS. I feel that having these traits helped me a lot in my 20’s, because I…

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Name it. . .

Depression.  This is by far the scariest and most immobilizing symptom of MS I have had to deal with.  It is usually under my control, via by sheer will, tricks and tips I have learned, or medication.  But these things do not always work how they are supposed to.  And once you spiral all the…

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Balls in the Air

Some days just feel out of control.  I feel as if so many things in life are unsettled, unplanned and unknown.  The combination of chaos + the unknown + the unplanned make me feel helpless and depressed.  I don’t know what to do when I don’t have the answers for everything going on in life…

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The Power of Choice

People say all the time how you can choose to be happy.  There are even books written about this, with that very title.  It’s a choice; you choose your mood.  The problem with this is that it is not as simple as that.  Moods happen and things happen to make you feel bad. I propose…

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Forward Movement

Newton’s law of inertia states that a body will keep its velocity and direction as long as no force in its direction acts upon it. One of the main factors in living a happy life is forward movement.  People have an innate need to feel that they are going somewhere, achieving something, making a difference. …

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The Best Me

It’s a new year, and I am making the same resolution I make to myself every day.  I just want to be the best possible Me I can be.  I want to live more in line with my values, and worry less about what others think.  This means trying to always remember and believe that…

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Why I Blog

A friend of mine asked me if she thought she should share my blog with someone she knows with MS.  I told her that was the whole point of my blog, to reach others with MS or other difficulties and share what I have learned to motivate myself.  She told me she was worried because…

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Mind and Body

This weekend, we stayed at Lake Quinault Lodge in the rainforest of Washington for some of the peace and quiet that a family with three small kids needs often.   With no TV or other electronics allowed for the time we were there, I had great expectations of family hikes on trails, board games by the…

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Mind over Matter

My new plan is to cut out as many drugs as possible and saturate my body with vitamins and minerals.  The thing about being on a steady stream of pain killers is that you become more sensitive to pain.  You also develop a tolerance.  This means you have to keep taking it, and you have…

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Living

At some point, you have to stop ‘surviving’ and start living.  As my health is slowly, but surely getting better, I have been focusing on how to feel better both physically, and mentally and I found my secret to happiness. The reason I used the word ‘my’ instead of ‘the’, is because it is not…

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Live as if . . .

When I was a young teen, I remember a very confusing conversation I had with my Grandfather after I had learned that he had cancer.  I told him I was sorry that he was dying and he responded by telling me that he did not know what I was talking about.  I started to argue;…

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The Unknown

When I started this blog, I wanted it to be very inspirational, and all about how to turn the bad into good.  Stay positive, that’s the key!  The truth is, MS is hard.  Life if hard!  Right now, I am waiting to hear back about my MRI results from yesterday.  I got a quick peek…

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Mark a New Start

Yesterday I had a really great day.  Although I have been getting better and having good mornings, I have still been ending all activities because of pain and exhaustion by about 3pm every day.  But not yesterday!  I was still feeling great and had the energy to do a project with my kids that I…

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Fall into comfort

The last of Summer has been brought in to the house so that we may enjoy it thoroughly before it disappears. Now I am looking forward to the many joys and comforts that fall brings. Warm baths and candles, and soft cozy blankets; hot tea and cocoa, and lazing in bed late.  Go ahead and sing it…

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The Moment

I work in inside sales, so most of my day is spent on the phone. I have worked for the same company for seven years now, so I know many of my customers very well and we talk about our personal lives as well as business.  Yesterday, I was talking with one of my customers…

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A New High

When I’m feeling bad, it comes in the form of pain, tingling, fatigue or all of the above.  Sometimes when this happens, I start to feel bad for my husband because it must really suck to have a wife with MS.  To make myself feel better, I remind myself that he knew I had MS…

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Hugs

  When everything feels completely out of control, it is time to check in with myself and make sure I still have two feet on the ground.  After another summer has flown by with way too many activities packed into it, add on top of that me being incredibly sick for most of it, I am…

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Feeling Complete

I am both relieved and excited to share with you that I am feeling much better!  I know I have not been blogging much, but I have been in a really poor physical and mental state lately.  I am doing so much better after just nine days off my latest MS drug, Gilenya, that I…

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Warning: unreported side-effects of Gilenya

I have been having such bad symptoms that I thought I was in a 4 month exacerbation.  My skin burns like I have been scalded, and my fatigue at times is the worst I have ever experienced. The burning has gotten so bad that I am in tears by 3pm almost every day, I have…

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Everything in Moderation

First off, I would like to apologize to all of my followers that may look forward to my blogs. I have not blogged for a while because of the lack of energy to do so.  I’m afraid I may be entering into yet another new chapter in my life.  In this chapter, I will learn…

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Finding Your Special Place

The best thing to do when you don’t feel well is to go where you can be taken care of for a couple days.  More important than that even, is to be somewhere you can completely relax with no burdens, or pending chores. I have always had a hard time with this.  I tend to…

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Bouncing Off Walls

I am coming to the realization that this disease now has a complete hold on me.  I can no longer go about life as if I am normal.  The extra hard workout I did on Monday, probably combined with the one on Saturday and even quite possibly the fact that I have been pushing myself…

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Balancing Act

I have always known how important it is to stay in shape, especially having MS.  I have always been a runner, and have attributed the quick recoveries I have to past relapses to the fact that I stay in shape.  With this last bout of illness, however, I have not recovered very quickly at all,…

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The Blessing of Illness

The thing about going through months of feeling really crummy, having pain, and always being exhausted is that when I come out of it I enjoy all the things I would normally take advantage of. The evening chores that used to be hassles become something that make me happy after not being able to do…

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13.1 Miles

As we approached the top of the hill to start the half-marathon, I abruptly stopped my nervous chatter.  Suddenly, I couldn’t breath.  What was I thinking?  I not only had MS, but I had recently been so affected by the disease that I had a hard time just making it through the day, much less…

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Dance

Yesterday I got the results back from my MRI.  They showed no active lesions’.  This should be a really good thing; it means there is nothing new or worsening in my condition.  Except I am worsening, at least I am not getting better.  I was hoping this MRI would show a reason for all the…

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The End of Training

My last really long run was 10 miles, two weeks ago.  Yesterday I ran 3 miles on the trail, and today I ran 6 at the gym.  I am ready for the half marathon next week.  Now it is time to rest. There is nothing more I can do to prepare myself in this last…

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Chain of Hearts

Just when you think life sucks and you are feeling really sorry for yourself, something worse happens to someone close to you.  The only thing to do in situations like this is to hold together as a family and stay close to the ones you love, letting them know that you are there for them. …

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A Way Out

I love listing.  I list things I want to do around the house, I list things that I want to do with the kids, I even made a list of all the lists I want to make!  Sometimes I make lists just for fun and sometimes I do it for a specific purpose.  I make…

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Success from Within

I have succeeded in almost everything I have started, and I believe everyone can do this; a person just needs to have the right attitude.  Everything you do should be done with intention and then it needs to be followed through on.  Whether the end goal remains the same, or changes course over time, as…

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Becoming a Morning Person

Since my last bout with MS, I have found that I have to run early in the morning. I have never been a morning person, and my highest energy level has always been later in the day. Running in the morning has definitely been a progression and a very large adjustment for me. When I…

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Simplify and Go!

I believe everyone can be happy.  You  just have to find the little things in life that give you pleasure.  The trick for me is to always be moving forward, find a goal and stick with it.  I am happiest when I have completed a goal; whether it is finally organizing the junk drawer that has been driving me nuts, or…

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8 miles, and a little faith

This weekend my family and I stayed at what is said to be the longest beach in the world.  We had a fantastic time.  However, I did not get to run on the beach.  I was really looking forward to doing my long run for the week there, but the timing just did not work…

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Someday is Today

I do most of my running on a paved trail that starts very near my house. Towards the end of it on my way home, there is a dirt path that goes up to the road. It is a very rocky and steep path that I always see on my way home. I often say…

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A Bump in the Road

A bad day stinks, but it doesn’t have to ruin my mood.  I found this out today.  When I have a bad day, I have extra pain.  My arms are in pain and extremely irritated, and I can’t think straight, but I still have to live my life.  I still am a mother of three…

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