Wow! I began building this blog on October 26th, 2011. Here I sit 4 years later with a completely different life. Though the blog hasn’t been very active through all of those changes; you have all remained followers. Thank you. I will endeavor to become more active again, bringing useful information and updates on scientific breakthroughs via twitter as before.
You may find it interesting to know that I have achieved remission for the last year and a half; despite some significant life changes and stressful situations. There are symptoms that are permanent. I have tremors in my hands always; at times they are worse than others. I have minor peripheral neuropathy. I have ocular neuritis. I have some cognitive issues. These I have learned to live with.
I will turn 44 in a little less than a month. I don’t celebrate my birthday the way most people do. In fact very few people actually know when my birthday is. I will mark that occasion as I normally do by sitting down with a glass of wine and my bucket list. I will cross off those things accomplished and revise other things accordingly. Care to see it? It’s long. 100 Items long. But it gives me goals and a sense of accomplishment. I will add it to the end of this blog or maybe as a separate entry.
These last four years have been hard; this last year and a half in particular the hardest; but also the most rewarding. I looked the devil in the eye, and I met someone who showed me how to live again. I also met a group of people who taught me family isn’t always blood, sometimes family is chosen family. I found a job I love. I found a home I love. I may write about some of those very personal experiences in future posts but for now; suffices to say that times change and people change.
I am going to ask that as this blog moves forward everyone keep an open mind and embrace differences and lets try to make it more interactive. Let me know what you want to hear about. Its a resource blog. Have questions? ask for what you want and if I don’t know the answers I will endeavor to find out. I will also try to get some interviews with people who matter and make a difference to the MS lifestyle community.
So as promised here is the bucket list…
100 Things to do before I die. Kim’s bucket list
May 14, 2012 at 1:29pm
- Visit Japan
- Make a living off of my own business
- Start a successful blog / 200 subscribers and growing Completed 2010
- Have a photograph published
- Publish a book
- Get an article published
- Visit Victoria Falls in Zambia Zimbabwe
- Swim in crystal clear water in the Maldives
- Go skydiving
- Take a road trip on Hwy 66
- Drive Highway 1 along the California Coast
- See the Amazon Rain Forest
- Travel to Italy Completed 2006
- Visit every continent
- North America Completed
- South America
- Europe Completed
- Donate $1000.00 to a worthy cause Completed 2001-International Red Cross
- Achieve zero debt
- See the Dalai Lama speak
- See a Lion in the wild
- Visit all of the National Parks In progress
|State||National Park||Year Established|
|Gates of the Arctic||1980|
|Wrangell – St. Elias||1980|
|American Samoa||American Samoa||1988|
|Arizona (3)||Grand Canyon||1919|
|California (8)||Channel Islands||1980|
|Colorado (4)||Black Canyon of the Gunnison||1999|
|Great Sand Dunes||2004|
|New Mexico||Carlsbad Caverns||1930|
|North Carolina||Great Smoky Mountains||1934|
|North Dakota||Theodore Roosevelt||1978|
|South Dakota (2)||Badlands||1978|
|Tennessee||Great Smoky Mountains||1934|
|Texas (2)||Big Bend||1944|
|U.S. Virgin Islands||Virgin Islands||1956|
|Washington (3)||Mount Rainier||1899|
|Wyoming (2)||Grand Teton||1929|
- Drive a Ferrari
- Do something upstandingly newsworthy
- Fast for 3 days (nothing but water) Completed 2005
- Scuba dive
- Solo survival excursion in the Rockies Completed 2005
- Live in another Country Completed 2001-2005 Canada
- Put $100 on a long shot to win (horse racing) Completed 2006 California-Santa Anita
- Learn archery
- Learn to play golf
- Learn to play the violin
- Learn to dance the Tango
- Ride in a hot air balloon
- Ride in a Helicopter Completed 1991
- The Basilica di San Marco, Venice Completed 2006
- Peter’s Basilica, the Vatican, Rome Completed 2006
- Kiyomizu Temple in Japan
- Machu Picchu, Peru
- The Coliseum in Rome Completed 2006
- The Uffizi Gallery in Florence, Italy Completed 2006
- The Hermitage in St. Petersburg, Russia
- The Metropolitan Museum of Art in New York, USA
- The Van Gogh Museum, Amsterdam, Holland
- The Smithsonian Museums in Washington, DC
- Visit SeaWorld Florida, Orlando Completed 1988
- Visit Waikiki Beach, Oahu, Hawaii Completed 1991
- Visit Disneyworld Completed 1988
- Restore a classic truck
- Get a college degree in progress
- Make a difference in at least one person’s life.
- Visit Cuba before the embargo is lifted No longer possible
- Swim with dolphins
- Go whale-watching
- Visit the San Diego Zoo completed 2006
- Go on safari.
- Go bird watching in Costa Rica.
- Create a Japanese garden with a meditation area
- Create a workout room
- Install a spa on the back deck No longer Possible
- Grow bonsai trees.
- Visit Tibet
- Take up tai chi
- Attend a Stanley Cup game Completed 2006
- Eat truffles Completed 2006
- Eat oysters Completed 2000
- Eat Gumbo in Louisiana
- Get a Tattoo Completed 2006
- Visit Mexico Completed 2006
- Trevi Fountain Rome Italy Completed 2006
- See the Egyptian Pyramids
- Watch the Northern Lights Completed 2001
- Go to the airport and take a random flight
- Visit the Mayan Ruins
- Visit China
- Experience Zero Gravity
- Visit Bora Bora
- Complete a 365 project (photo a day for a year)
- Mexico for Dia de Muertos
- Climb a volcano Completed 1991 (Haleakala)
- Visit Florence Italy Completed 2006
- Wine tasting in Tuscany Completed 2006
- Visit Ireland
- Sky Lantern festival in Thailand
- Visit Alaska
- Visit the Galapagos Islands
- Own and be proficient with a 1911 handgun
- Witness the polar bear gathering in Manitoba Canada
- Hike to base camp on Mount Everest
- Try Kayaking
- Collect patches from all K-9 Unit services. In progress
- Go to an Opera
- Visit Alcatraz
- Visit the Redwood Forest
- Visit Barcelona
- Visit Borneo Malaysia
- See the Great Barrier Reef
- Attend the Burning Man Festival in Black Rock City
- Volunteer to assist at a national disaster Became Red Cross Disaster Responder in 2012
- Have my photo taken with a tiger
- Buy and sell a property for profit
- Find a way to actively help at risk kids
- One day, I’d like to have enough money to buy a house and brand new vehicle and just walk up to some; unexpecting, needing, someone on the street and hand them the keys to both and wish them a very nice life.
At some point, most of us are confronted with having to tell someone; whether it’s a significant other, potential partner, friend or family, about our struggles with multiple sclerosis. Choosing to disclose the illness; no matter who is listening, is a very personal decision and once the information is shared, we can’t take it back. Responses can vary as much as the symptoms we experience with this disease; so it’s important to consider the decision carefully.
Coming up with a plan of action ahead of time helps us feel less vulnerable and more in control of the situation.
Understanding why we want this person to know we are sick can help in developing the best approach to disclosure. Reasons to disclose might include; having support, their understanding of symptoms, giving them the opportunity to know something about us that will likely impact the relationship at times. Knowing what we want them to understand about our disease is also helpful; perhaps it’s the overall impact the disease has on our lives, or maybe it’s just one significant factor that impacts them directly. Sometimes we are compelled to take more of a caregiver role such as making sure they understand it’s not contagious or fatal; and sometimes we just need to show them we are still strong despite the illness.
Once we’ve decided the why’s and what’s, it’s time to figure out the how’s. What is the best approach? There really is no one, right way to explain to somebody who cares about us that we have a chronic illness. It’s important to remember that we are dealing them the same blow that we received. They are going to have feelings; they are going to react. Some of those reactions may be sudden concern or empathy. not everyone reacts to news such as this the same way. Some people will be at a loss for words or want to quickly change the subject; don’t mistake this for not caring. They may not feel comfortable processing the information at that moment or they may not know how to react. Some people have a gift for saying all the wrong things; don’t judge them, give them time. It seems that some people have a knee jerk reaction to help and it goes terribly wrong; again, it doesn’t mean they don’t care, and by allowing ourselves to negatively respond to something said will only undo everything we are trying to accomplish through disclosure.
So how do we present the topic? It’s often good to have a low-key, face to face conversation. It should take place at a time and in a place where distractions are at a minimum but it isn’t necessary to make it the sole focus of the visit. In fact it’s probably better to make it one topic of conversation among other topics so that there is far less pressure on either person before or after the topic is discussed. It is often nice to have another direction to take the conversation off-topic after all questions are resolved. Remember; its always better to end a conversation with someone on a positive note.
Being prepared to answer questions is really important. It really isn’t fair or healthy to tell someone something that will impact both lives and then refuse to talk further about it. Be prepared to explain what Multiple Sclerosis is, what the long term prognosis could mean, and remember to tell them that there is still a lot of research and testing being done with a lot of advancement and possibilities.
One thing to consider is that we should choose a time to disclose when we are feeling more in control of ourselves. How we are feeling will come through in our explanation and will affect the person we are talking with. This is not to say that we always have to be upbeat and happy; that’s not realistic, but rather that we give the person on the other end an opportunity to process all of this without the added burden of having to comfort us at the same time they are first hearing this news.
Long lines, delays, mysteriously missing reservations, and lost luggage are just a few of the annoyances that come with traveling. These annoyances are dreadful for everyone, but if you are a traveler with special needs, they sometimes become serious issues. Combine that with all of the considerations that must go with planning a trip when you have special needs and a trip seems daunting. Fortunately; Ingenuity and some careful planning help keep the enjoyment in the trip.
Planning a Trip
First consider how long you plan to be gone, where you plan to go and how you plan to get there. (Note; if this is a vacation, sometimes traveling in the off season is much more enjoyable. This gives the luxury of less crowds and more available resources as well as cooler temperatures and less heat related fatigue).
- Travel agents or tour companies are excellent resources for setting up a trip with all of the necessary accommodations. Remember to give them all of the necessary information such as your mobility requirements and any equipment you may travel with. I used a tour company when traveling to Italy and the convenience of it all was worth every penny. They quoted a price; and for that price, they arranged and purchased tickets for: flight there and home, boat, train and bus tickets in various cities, hotel accommodations and local tour guides for each city. All that was necessary was to show up, purchase meals and attraction tickets and the rest was all taken care of complete with a travel itinerary that said where to be and when.
- Check on your hotel. You can research most facilities online; however, don’t be shy about calling and asking for necessary accommodations. Having a room on the first floor really makes life with a suitcase easier. Its also important to note stair/ramp access, pool access, restrooms etc. It also helps to find out if the hotel has shower chairs available or any other special accommodations you may need.
What to Bring
- The most important item to have when traveling with all the necessary gear and medication is a doctors prescription and note of explanation. (for medications, and cooling vests).
- Medications should almost always accompany you on board in a small cooler with an icepack(if your medication requires). This allows you to still have your medications in the event that you and your luggage are separated. Also; keep in mind you can purchase or obtain free from some drug companies, a needle clipper. This clipper will cut off and store the needle in a small handheld device as opposed to lugging your sharps container everywhere. This renders the remainder of the syringe safe to dispose of in the trash.
- Use a wheeled, carry-on sized suitcase. As a veteran traveler I highly recommend using a small carry-on suitcase for all of your travel needs if you can get away with it. You can always find a place to do a load of laundry if you plan to be away for a while but this configuration helps avoid lost luggage, lessens fatigue from carrying your bag everywhere and waiting in baggage claim after your flight.
- Keep in mind the topography of where you plan to be. If where your visiting has loads of cobblestone streets, a rolling walker may not be the best aid. Take what works best for where your going. A cane may mean moving about slower but it may free up your options for where you go. If a cane doesn’t work for your condition perhaps forearm crutches are a possibility. Talking with your doctor may reveal many alternatives you hadn’t considered. Just remember; a great trip can turn loathesome if your fighting your way around everywhere you go.
- Remember many facilities offer free wheelchairs to use while you are there. Places such as airports, museums, and others can turn what would be a fatiguing visit into a more enjoyable vacation. don’t let pride keep you from having a great trip.
- Take advantage of early boarding for people needing assistance at the airport
- Try to arrange an isle seat near the front of the plane. (Anything to lessen walks and waits will help with fatigue, and close proximity to the washroom helps with those sudden need to go moments).
- Always keep medications in their original labeled containers.
- Keep hydrated and make sure you rest when you start to feel fatigued. Nothing can ruin a vacation faster than feeling sub-par while wrestling with long lines and navigating difficult terrain. Sometimes just taking a 30 minute break at a local cafe can reset you for the rest of the day.
- Know where the hospitals are in the cities you plan to visit
- utilize baggage porters or valets when you need to.
Enjoy your trip!
Gluten is a protein found in some grains such as wheat, barley, and rye. There is some controversy pertaining to whether oats should also be added to this group because of possible cross-contamination occurring at some milling facilities. Gluten is also a food additive that is found in many foods; for example, ice cream and ketchup.
Why would we want to eliminate Gluten from our diets? Answers vary. There is thought to be a connection between food sensitivities (not necessarily allergy); more specifically, the way our bodies react to this type of sensitivity, and MS symptoms.
When we have an adverse reaction to a food; it is often the protein in that food that is the culprit (gluten for instance). Our immune system responds to this as if it is a harmful invader. The immune system then triggers a reaction. Reactions can vary from person to person.
While I am skeptical at best of any type of diet “curing” MS, (at present; an incurable disease), I do believe that better nutrition can afford those of us suffering with MS a better quality of life through moderate control of some of our symptoms.
There are some issues with a gluten free diet. It is possible to become deficient in other nutrients (fiber, thiamine, riboflavin, niacin, folate, iron, or calcium for example). It is important to look at the big picture when exploring radical changes in our diet. Balance is extremely important for the human body.
One thing I always try to stress is to remember we are not trying to cure our disease. We are looking for ways to make our quality of life better. Leave the cures to the medical professionals. If a change in our diet improves our symptoms, we’ve found supporting therapy. We should always remember to discuss these with our doctor because some diet changes or herbal therapies can directly interact or interfere with certain medications.
I suggest; if planning to try a diet or herbal remedy, to always log findings in a notebook. This log should contain every detail:
- What changes were made (diet, introduction of an herbal remedy)
- Amount of change or what the change was (diet changes noted/dosage of herbal remedy)
- note the date and the time of day
- effects of change
Keeping track of our efforts will help us find what works best for us and what doesn’t. It will also help track down any causes, if we have adverse reactions.
Connecting with another person who knows first hand what we are going through is essential when confronted with a life changing diagnosis such as MS. Peer support groups or peer telephone support are great ways to meet new people that share similar experiences.
Peer support offers us a way to learn more about the disease, share experiences or personal feelings on the issues faced, talk through problems or choices, and discuss what works and what doesn’t. Topics can very from the disease itself to coping mechanisms for dealing with common day to day issues.
There are several avenues we can use to find those connections. In the United States and Canada; the National MS Society has; MSFriends for peer telephone support. Click on the links to find their web pages. They also have a Peer Support and Mentor Program. The Multiple Sclerosis foundation offers an interactive map on their website to find local (across the US) support groups. For readers not located in the US; I am working to put together a page that will offer a listing of contact information for support groups world wide. I will send out a notice when it is available; please make sure you are subscribed to receive updates. You can also find me on twitter: (kitsune1971) for updates. If you know of any resources that you would like to add, please contact me with the information: firstname.lastname@example.org
The initial diagnosis of Multiple Sclerosis (also known as MS) is scary. We feel a wide range of emotions of everything from shock to relief. Typically by the time diagnosis is reached, we’ve been through a battery of tests and already suspected the possibility but somehow having the official word still comes as a bit of a shock.
Denial, sadness, anger, fear, confusion, avoidance, sleeplessness, crying and withdraw can all be normal reactions. Relief is also a common reaction after wondering for so long what could be wrong and finally having those answers.
After the initial shock wears off, acceptance is our goal. Multiple Sclerosis is a progressive disease that does not yet have a cure. Acceptance is the key to being able to get on with life. Acceptance has different meaning to different people; however, the goal here is to accept that our life is going to change. We may not be able to do all of the things we used to do and we may sometimes need help. If we fight this; it will be very difficult, if not impossible to find happiness because we will be forever fighting ourselves.
Once we’ve accepted we have MS; then it’s time to take back some control. This disease robs us of who we once were. There are many ways we lose control with this disease; but it doesn’t have to stay that way. There are ways to regain some of that control. Aside from various medications that help to alleviate symptoms; there are also other ways to be in control. Taking control of our healthcare is a wonderful feeling of empowerment. Knowing our disease. Learning everything we can about it. Keeping our own health file (see: http://livingms.org/2011/10/27/taking-control-of-your-health-care/). Learning ways to manage our symptoms. Talking with our doctors and creating our own health care team that will work with us. A bit of planning or modification goes a long way to helping us accomplish some of the things we used to do; and those accomplishments become a lot sweeter than they were before.
A very important part of coping with Multiple Sclerosis is talking with others who are experiencing the same things we are. Thanks to modern technology there are message boards available if we wish to test the waters without jumping in. Once we feel comfortable talking about our diagnosis, we can consider joining a support group. It is a great way to get out and be around people who understand what we are going through.
When the time comes that our body changes, our abilities change; remember we need to look at ourselves for who we are; and not hide from our reflection. See the beauty within and within all accomplishments. Be assertive, no one should make you feel inferior. Speak up if someone says something frustrating. We are still the same people we always were; possibly even stronger.
For many people suffering with MS, knowing when to call the doctor is a difficult decision. Questions abound as to the significance of symptoms and what exactly is an exacerbation compared to the new “normal” for the patient.
An exacerbation (also called; a flare, attack or relapse), is a sudden worsening of a symptom or symptoms after a period of stability. Also included are new symptoms that suddenly appear or a symptom that grows worse lasting at least 24 hours. Remember; not all symptoms are always related to Multiple Sclerosis. Sometimes there is another underlying condition that is responsible.
Calling the doctor is always a good idea if you are unsure or uncomfortable about any aspects of what you are feeling. During this visit; it is a good time to review with the doctor what you can expect from the disease and from your treatment. This will help you to establish a baseline for your normal and what is considered an exacerbation.
During your visit with the doctor its important to ask questions and be an active part of your healthcare. Listen to what the doctor tells you and make notations of important points you want to remember. Make sure you communicate with your doctor if you do not think you can follow through with any of the recommended treatments.
“MS Hug” is a term used to define a symptom that is generally experienced as a tightening, in spasm, or burning sensation that affects the region of the body anywhere from under the arms to the waist.
Discomfort associated with the MS hug vary from person to person. It is possible to have a localized bout or to feel it around the entire torso; and to experience this symptom in waves that last from minutes to hours or longer periods of time. The pain is described by suffers as being; crushing, dull, sharp, burning, or constricting. The constriction can sometimes cause a perceived difficulty in drawing deep breaths which can lead to a panic attack.
MS hug is reported to be non-life threatening; though, it is important to bring these symptoms to the attention of your doctor as these are also possible symptoms of sometimes life threatening conditions unrelated to MS. Your neurologist may run tests; such as an MRI, to see if you are experiencing an exacerbation of MS. Tests; to rule out other conditions, such as; heart problems, gastrointestinal issues, lung problems, or chest infections may also be performed.
Treatments for MS hug sometimes include one of the following; anticonvulsant medication, antidepressants (this modifies how the central nervous system reacts to pain), and over-the-counter acetaminophen. Some patients also find comfort using warmth; such as a hot water bottle. The most important and effective thing you can do is to remain calm; stress will almost certainly aggravate it. Self calming techniques such as listening to calming music, visualization and meditation can provide some comfort. To further provide comfort; wear loose fitting clothing, apply pressure to the affected area, increase your fluid intake, try deep breathing exercises, and apply massage. Analgesic creams sometimes bring relief to some patients.
Awareness of psychological and emotional issues is important for patients suffering with Multiple Sclerosis. Sometimes the issues are directly related to the disease (an actual symptom) and other times they are secondary to the diagnosis, medication, or the symptoms experienced (a reaction or result of the experience). Crying, uncontrollable laughter, euphoria, anxiety, irritability, social isolation, depression, and sexual difficulties, are not uncommon complaints for MS sufferers. This is a side of Multiple Sclerosis most patients prefer not to talk about; though many worry about it regularly.
Recognizing the difference between feeling normal sadness, nervousness or anxiety can be a challenge. The indicators that signal its time to talk with a health care professional are; changes in appetite, changes in sleep patterns, depressed mood, or suicidal thoughts.
Medications (anti-anxiety or anti-depressants) and counseling (talk therapy) are effective treatment options for improving the quality of life for people affected by psychological or emotional difficulties associated with MS. Self care is another viable option. Self care includes things like spending time with family or friends, exercising or diet improvements; actions that helps to elevate your mood and alleviate negative feelings. It is important to remember though; that suicidal thoughts need immediate attention by a qualified health care provider.
Finding a local support group may help. Speaking with others who share the same struggles helps to minimize feelings of isolation or fear. It is also a great way to learn of new or existing treatments and to make some great new friends who understand better than anybody what you are going through.
You are not alone in this; reach out.