Life Over the Edge

Spring is a beautiful time here in the Czech Republic!  This is one of the most prolific places I’ve ever lived!  It seems that you could stick a branch in the ground and it would immediately begin to grow and blossom!!  That’s an exaggeration, of course, but spring is very pretty here.  Everything is blooming and growing right now…the leaves are out and growing by the day, the tulips are bright and colorful!  We’re having more sun, again, which is a wonderful treat after our long, dreary winter!

Along with all this beauty there is a lot of pollen in the air.  We’re in the midst of a tree pollen explosion!  Last week, the skies over Prague were hazy with pollen–it was that thick in the air!  We had some rain finally come through on Friday and Saturday, and that cleaned things out very nicely.  It was even possible to see down in to Prague from where we live…very pretty once again!

I’m currently dealing with an allergy attack…I’m very allergic to tree pollen…so my allergies and asthma have been acting up…fun!  My doctor was not at all surprised to see me today, and has put me on a low dose of prednisone for a few days and some other meds…along with my regular daily pharmacy I have to take!  Along with this, he’s ordered a sinus x-ray to make sure there’s no infection…if so, that will mean antibiotics.  It’s very frustrating, but this is the normal rite of spring for me!  

So, it’s time to take it a little bit easy till the meds are helping…and try not to become frustrated.  Frustration will only add to the mix of not feeling good…negative feelings and thoughts have a way of doing that to a person…and work against us more when we’re already feeling down and ill!   So, to avoid that, I will focus on the things that I am able to do right now–those things that are not too taxing, and have a plan of action ready for when I’m feeling better.  Hopefully this will be just a couple of days with all the meds I’m taking–and then I’ll be ready for normal activity again.  This is only a short-term, predictable flare-up.  It’s important for me to keep this in mind…this is only short-term–even if it lasts a month or two, it is still really a short-term, temporary flare-up!

Even with this current flare-up, I’m still looking at the positive things that come about with Spring–the beautiful new greens everywhere on all the plants and trees, the wonderful flowers and buds on the trees and shrubs, the song-birds that are happy and busy once again–plus the energizing sunlight that has returned!!  This, along with understanding that this flare-up is predictable and temporary will help to keep my mindset more positive during the rites of Spring!

Spring is here and is usually the time we like to get out of the house.  We’ve been cooped up most of the winter, and when we see the green and sunshine of Spring beckoning to us, we want to go out and have a great time!  But Spring is also a great time of the year to do some spring cleaning–not only in your house, but also in your life.  It’s good to take a small “breather” and rest…and look over your life to assess how you’re feeling and what’s working and not working for you. 

During this “breather,” you should also take a good look at your health and the care you’re receiving.  Periodically assessing our health care, medications and other treatments is just like assessing the other areas of our lives.  Our chronic illnesses and conditions can change over time.  Sometimes we don’t even notice the changes until we take a break from our everyday lives!  Then we begin to see and feel what’s been taking place. 

I do periodic assessments on a quarterly basis during the year.  For me, this works out to be the times of the year when my allergies and asthma have the most trouble.  These times, for me, are Spring, Fall, and Winter.  I have found that taking these “breathers” doesn’t have to be a long, drawn out process.  Usually, I just kind of stop and see how I’ve been feeling and I ask myself some questions:  Have I used my rescue inhaler more lately?  Has it been necessary to take prednisone?  What about my symptoms?  Are they worse?  Do I have more itching; more sinus trouble; is my peak flow stable or going down; am I feeling more tired than normal; am I feeling more pain than normal?  Asking all of these questions allows me to become aware of what my body’s trying to tell me, and make adjustments to my treatment as necessary.  I have to be on top of things all the time, or I’ll end up very sick since my allergies and asthma are so extremely sensitive.  Doing these periodic assessments helps to keep me feeling better most of the time.

Running assessments on your care, too, is very important.  You need to feel confident about your doctor, and comfortable with him or her.  You should also be satisfied with the treatments you’re receiving for your chronic illness.  If you’re not satisfied, then it’s time to talk to your doctor about the possibility of looking into other treatments, etc.  Plus, if you’re not satisfied with your doctor’s care, it is time to find a new doctor.  Trust and comfort are very important elements in the treatment of chronic illness and chronic conditions.  Without these elements you feel lost and alone.  But when you have confidence and trust in your doctor, you feel as if you have an ally who is there to help you.  

Periodic assessments are very good for our lives, and also for monitoring our chronic illnesses and chronic conditions.  Doing a short assessment at times that are appropriate for you will help you to feel more in control of your condition, and will help in better managing your chronic illness–and may also help to stabilize your chronic condition.  Being aware of our bodies and running periodic assessments help us to feel better; which in turn, allows us to enjoy the Spring when it starts to beckon!  We can go out and have a great time!

This weekend is Easter weekend, when Christians all over the world will be gathering to celebrate the resurrection of Christ on Sunday.  Easter is one of my favorite holidays!  Spring is a beautiful time of renewal!  Spring has definitely sprung here in Prague–in just the past few days leaves are popping out, flowers and fruit trees everywhere are blooming, and we can finally see the sun!  It is a beautiful time here in the Czech Republic!

My husband and I will be going to his mother’s for Easter–and meeting with the whole family there, or at my brother-in-law’s house.  I’m hoping for my brother-in-law’s house as they have a beautiful garden where we usually spend the afternoon–weather permitting!  This doesn’t help my allergies at all, but with a little forethought I can manage to make it through mostly OK when we’re out there!  I plan ahead for these visits–just as I would before traveling.  Most of the same procedures can be followed.  I have to be sure to take all medications with me, including emergency medications for a bad allergic reaction.  I have to pack my own food and also check the forecast for weather and pollen counts.  All of this goes a long way to help me enjoy a weekend with the relatives and keep me safe and mostly healthy!

If you would like to learn more about Czech Easter traditions, please head over to my other blog, Czech Off the Beaten Path .  Easter here is very interesting–with everything from men whipping women to kraslice (Czech Easter eggs)!  

I would like to wish you all a very blessed, beautiful and happy Easter!  

Picture is from Microsoft Clip Art

The practice of medicine is becoming more SciFi-like all the time!  I am waiting for the day when the doctor can run a scan  like Dr. McCoy (the ship’s doctor) did on the TV show “Star Trek!”  That will be a day to celebrate!  Till then, we can still encounter the SciFi in our medicine and health!  Scientists are currently working on many applications for stem cells.  I read about a new application in the news this morning.  The new stem cell application might be able to fix damaged bones and cartilage with only an injection!  This would be a great help for those with broken bones and those who suffer with certain types of arthritis!

The article I read was on the BBC online…you can find it here .  It is amazing!  Scientists are looking at injecting immature stem cells into the body.  These cells would first be harvested from the patient’s own bone marrow.  Next, the stem cells would be coated with magnetic particles in the lab.  After this, the patient would be injected with the cells, and the cells would be guided to the damaged area by magnets!  This therapy could lead into healing and repairing damaged bone and cartilage!  Evidently, this treatment has seen successful outcomes when used with mice.  The next step will be to research this treatment with goats.

The SciFi in medicine is here and now…scientists and researchers the world over are working on finding new therapies, and even cures, that will help us all to lead healthier lives.   And one day…I’m still hoping to have a scan with a hand scanner similar to the one Dr. McCoy used on “Star Trek!” 

Today I would like to share a list of some helpful and insightful blogs and websites dealing with chronic illness.  These are some that I personally visit and find so much helpful material!

Here’s the list:

Working with Chronic Illness.com :  this site offers help and advice about how to work at home with chronic illness.  Rosaline Joffe suffers from chronic illness, so she knows what’s she talking about when offering advice and help to others!  This is a very good sight to find all kinds of information about working from home, etc.

A Chronic Dose :   this blog is written by Laurie Edwards who is very young and has multiple chronic illnesses.  She writes and does freelance work, along with teaching a writing class at a university.  Laurie’s blog offers updates on her struggles in daily with chronic illness, and also offers many helpful insights and links to help others. 

Rest Ministries and Hope Keepers :   this site is run by Lisa Copen, who deals with rheumatoid arthritis.  Rest Ministries is the result of her search to find a Christian ministry for those who have chronic illness.  Lisa was unable to find one, and so created Rest Ministries.  Here, you can find so much information on many chronic conditions and illness.  You can also find a forum where you can “meet” others online who have chronic illnesses!  

Chronic Illness Pain Daily Devotionals :   this site is also run under the Rest Ministries banner.  Here, you can find daily devotions, with scripture readings, that help you in coping with chronic illness.  I  have found some very beautiful and insightful devotionals here.  The writers all have chronic illness themselves…and know and understand how to minister to others who have similar conditions. 

I’ll be adding these links to my blogroll, and will continue to search for more blogs and sites that offer help, information and assistance for those of us who deal daily with chronic illness and conditions!

Have you ever thought about becoming a blogger?  Would you like to become a paid blogger?  Then be sure to give some thought about becoming a blogger on Today.com. This is a great platform and network for bloggers–no matter if you’re only beginning, or are more experienced at blogging!  Today has a couple of great programs for bloggers to earn money.  One is premium advertising for only $4.99 a month; and the other is the blogger referral program, where a blogger can earn for each new blogger he/she introduces to Today.com!

Today.com is a network of blogs on many and varied subjects–everything from gardening, relationships and life to chronic illness!  You can choose from many subjects on which to become a paid blogger.  Be sure to check out the links above and give Today.com a try!  

This month, in Good Housekeeping Magazine (April 2009 edition), there is an excellent article–an interview with Michael J. Fox, by Rosemary Ellis.  You can also find this article online at Good Housekeeping.  I’ve always admired Michael J. Fox–I grew up watching the show Family Ties, and also watched him on Spin City.  I also saw many of the movies Fox starred in, including the Back to the Future movies!  Fox was diagnosed, in 1991, with Parkinson’s disease –which is a degenerative disease of the central nervous system that impairs motor skills, speech and other functions.  Michael Fox tried to hide his illness for a number of years, but then finally went public in 1998, and semi-retired from acting in 2000.

I’ve admired Fox for a number of years.  He has certainly been one of those who learned not only to “ride the wave” of his chronic illness, but also has been able to become a successful political advocate for Parkinson’s.  He also runs the Michael J. Fox Foundation which promotes funding for research projects for Parkinson’s disease.  Fox has learned from his illness and has been successful in learning to live with his disease. 

Thank goodness for celebrities who come out about their diseases and are able to help inspire others on how to have a successful life in spite  and because of chronic illness!  Be sure to check out Fox’s interview in Good Housekeeping (in the magazine or online), and also be sure to check out Michael Fox’s new book, “Always Looking Up,” coming out this month by Hyperion. 

Have you ever watched surfers riding the ocean waves on their surfboards? Each surfer has to calculate just when to rise up on their board to catch the wave…and need to maintain their balance…and then have to ride the wave out to the end…to the beach or maybe the waves crash down on the surfer.  Either way, the surfer (usually) comes bobbing back to the surface!  The goal is to catch and ride the wave to the end…either on the surface of the water or on dry land!

Living with chronic illness could be compared to surfing on the ocean.  We are not easily able to forecast from one day to day how our condition might be…how it will change…etc.  We have to calculate when the time to “rise up to catch the wave” is right…and when to just go with the flow.  Life with chronic illness is not predictable.

One thing we can do to make Life a little bit more predictable is to educate ourselves about our chronic illness.  That means questions to health care providers, reading everything we can get our hands on, researching on the Internet and libraries.  This will help us come to an understanding of our chronic conditions and give us a basic idea of what we can expect on a day-to-day basis, and what the long-term prognosis might be.

Of course, in this education process, we also need to realize that not everyone’s illness is exactly the same.  We can learn the generalities about the chronic illness.  We also have to become familiar with our own bodies as never before…and how every day life effects us–everything from our daily schedules, marital relations, how it effects our family and children, and if we hold a job, how does our job effect our illness and how does our illness effect our job?  We also need to consider all the medications we take–what side effects might result–and even how and what we eat!  This is a lot of educating!  But all of this information, along with the realizations that come along with it, are what help us to deal with our chronic illness and to have a better quality of Life. 

Just be careful not to become obsessive when you are educating yourself!  That is counter-productive.  You will know you’re obsessive when your spouse, family and friends start making comments about you only being interested in researching your illness…so watch out for this!

With the right information, advice, consideration and understandings we can learn when and how to “catch the wave” when we see one coming!  We can also learn how to weather the waves when they come crashing down on our lives…and we’re left trying to struggle to the surface once again.  We can see when it’s just best to “go with the flow” and ride the water for a time…resting where we are.  The more experience we gain, over time, will help us to ride the waves successfully more often…and to ride and keep our balance in the process of Life! 

A couple of days ago I was reading through some other blogs that deal with autoimmunity and the consequent life issues.  One lady, Lisa (at Chronic Illness and Pain Support ) wrote a post about her current situation.  Lisa writes a great blog with wonderful advice for those of us who deal with chronic illness.  The blog post I read was “You Must Be Feeling Better” Uh..No… “  This is a great post dealing with the realities of coping when we have a time when our illness gets worse.

Lisa makes a comment that she thought she should be past having emotions about her chronic illenss.   We would all like to feel that we’re at that point after years of coping!  But I believe that it is perfectly normal to have feelings–frustration, anger, sadness–when experiencing a worsening of our chronic conditions.

There is a time, when after the first diagnosis and life changes, we have come to terms with our chronic situations.  After suffering with a chronic illness for years, we have become “experts” in how our bodies react to different medications, activities, and even the weather.  We have learned how to deal with our illnesses when they take a turn for the worse.   In short we have learned to cope with our situations and illnesses.  That’s a great and healthy accomplishment!

Even so, I believe we have more than one instance of coming to terms with our chronic illness. We experience waves and phases–ups and downs–with our illness, and have resultant emotions with each wave or phase.   For instance, when we reach a plateau, or our illness decides to really mess us up by taking a major downturn–it is normal to have similar feelings as when we were first diagnosed.  We are facing a new situation with our illness…and feel overwhelmed by the circumstances and symptoms we are having.  Just when we thought we had everything under control, then bam!  Things are out of control once again.  It is only normal to have feelings about our chronic situation–all the feelings we had to deal with at the beginning can come crashing down on us once again.  But we need to remember we have past experience on which to draw to help us through!

Those  past experiences give us hope and strength to find the way through the new situation–whatever it may be.  We have learned to cope before…and we can learn to cope again.  Instead of getting caught up in the frustration, fear, anger, etc., we can choose to see how to deal with our current circumstances.  Draw on the lessons of the past.  And don’t be too hard on ourselves for feeling the emotions we thought were behind us.  Don’t repress these emotions–but try to work through them–and remember you have the strength and experience to face this new phase of your chronic illness.  Like the graphic of a button Lisa has on her site–it reads, “I’m choosing joy!”  We can find the joy once again by working through our chronic situation–and remembering the emotions are just part of the ride! 

Today has been one of those days that has been busy–and that’s OK!  This evening is very relaxed and nice…just a nice Friday evening.  These are the kind of days that are wonderful–the chronic illness is mostly controlled, or at least keeping a lower profile than normal.  You feel almost normal!  This kind of day doesn’t happen so often, but when they do happen, they are a treasure to enjoy to the fullest!  You know tomorrow might be different…but at least for right in this very moment you’re feeling OK…and can relax and just enjoy! 

I wish you all a very wonderful and relaxing Friday evening like the one we’re having here…just a nice, quiet evening!