Recovery from hysterectomy weeks 1-3

Three weeks ago I had a hysterectomy......and although the outer incisions have healed up nicely, there is still a lot of internal healing that needs to take place.

Fatigue has been a real bitch, if  you will allow me to vent. Walking around the house is such a pain.  nausea was really bad for a while, but it got much better after I stopped the pain meds.  Those were awful.  Hallucinations...omg.

Why don't the doctor's remember to tell you about constipation?  It was so tough using the bathroom after surgery.

The worst has been the back pain and the nerve pain.  Neuropathy kicked in with a vengeance since the surgery.  You cannot imagine the difficulty to walk sometimes.  I have a cane and a walker, but at times it makes sense to just stay seated that try to walk even the shortest distance to the bathroom.  I guess it must be because of all the lupus issues.  It must be exacerbating the recovery period.

I finally feel strong enough to take frequent showers .  The first few days after the surgery was the most challenging when it came to walking much less taking a shower.  I remember how thrilling it was to get into the shower, with a little help and take a shower without being dizzy or nauseous.  I am so grateful to my daughter who was there to help with my exit from the shower.

I long for those pain free days...and nights when I can sleep for more than a couple of hours.  The last few weeks sleep comes easily but does not last.  Getting comfortable at night for sleep is challenging. The pain from this surgery is unimaginable.  Why did I do it, you may be asking yourself.  It was a last resort.  I had no choice.  It was either to continue to bleed continuously with a rapidly growing fibroid or have my interiors removed and solve the issue, plus reduce the amount of iron infusions I was receiving.

No symptoms of  menopause have started yet, and I wonder if and when those dreaded hot flashes will start. I am in no rush.  Maybe I won't have them.  Wishful thinking.

Some days I overdid it, because I was feeling so well.  I keep forgetting that my interiors are still healing. I keep forgetting that my surgeon has removed so much of my insides that organs are shifting around to fill in those gaps.  I guess that is one reason there is so much restriction placed on me....on top of it having to deal with other health issues.
Some days I still can't feel when I need to urinate.  I've even had accidents or realize that I hadn't used the bathroom all day.

There are days when I look 6 months pregnant.  There are days when my tummy looks somewhat normal.  I anticipate the day when I don't have to choose my clothes based on whether they will constrict my still healing abdomen.

Boredom hasn't really kicked in because I have a lot to keep me busy.  I home-school my youngest son, so I am back in a position to where I can get up out of bed for a bit to help my fairly self-motivated 10 year old.
I managed to get some decorations up with the help of my kids.  I decided to start early this year because I want to drag out this time of year as much as possible.  This has been a tough year and I will be enjoying the decorations and the Holidays way past New Year. :-)

Now I know what my doctor was talking about when he said not to lift anything over 5 pounds...including laundry.  I guess those dust bunnies are going to have to wait for another week since I'm not supposed to even be vacuuming.

Writing is challenging, so I am appreciative of Dragon Naturally Speaking software.  However, I am getting tired.  Even talking seems to be exhausting.

More updates soon....

Be the Lotus. Rise from the mud!!

Just like the lotus, we too have the ability to rise from the mud, bloom out of the darkness, and radiate into the world!

The lotus is the most beautiful flower, whose petals open one by one.
But it will only grow in the mud.

It represents for me what I have experienced emotionally and physically since my diagnosis with lupus, fibromyalgia, neuropathy and others....and my journal to healing with each surgery that I have undergone.

The lotus flower represents one symbol of fortune in Buddhism. It grows in muddy water, and it is this environment that gives forth the flower’s first and most literal meaning: rising and blooming above the murk to achieve enlightenment.

The second meaning, which is related to the first is purification. It resembles the purifying of the spirit which is born into murkiness.

The third meaning refers to faithfulness. Those who are working to rise above the muddy waters will need to be faithful followers.

In order to grow and gain wisdom, first you must have the mud --- the obstacles of life and its suffering. ... The mud speaks of the common ground that humans share, no matter what our stations in life. ... Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one.
Suffering makes us stronger and teaches us to resist the temptation of evil. When we banish evil thoughts from our mind we are able to break free of the muddy water. The mud shows us who we are and teaches us to choose the right path over the easy one.

Finally, the lotus flower represents rebirth, both in a figurative and a literal sense. The rebirth can be a change of ideas, an acceptance , the dawn after one’s darkest day, a renaissance of beliefs.

"Be the Lotus. Rise above the mud!"

The mud for me has numerous meanings. It refers to the lupus and other illnesses that I battle everyday. It refers to the negative comments that I receive in messages. It refers to the nay-sayers...those who look to see me fail.

I hope that my words in this video help you to see that no matter what you might be going through...it is possible to rise above it, and become even stronger and more resilient....both in the face of negativity, as well as the face of illness.

Thank you all for being there. I truly appreciate it. Please feel free to post your comments, questions, remarks, etc.

Surviving the Holidays with chronic illness and post-surgery

Fractured by Gina Welds Hulse

Three days ago I went through one of the toughest surgeries I have ever had....even worse than a C-section, in my opinion.  Yes, I have had a C-section, so I can compare the two.
I had a full hysterectomy!  What do I mean by that?  Well, here is what was removed:

• uterus
• ovaries
• cervix
• Fallopian tubes and
• a very large fibroid

Well, you're right...a fibroid is not part of a typical hysterectomy, but it needed to come out due to medical reasons.  I won't go into much details here.

The last couple of days since the surgery has been tough, to say the least.  I've never felt more helpless or useless.  I haven't had much of an appetite, but preparing meals for my young son has been a challenge.  It has been rough on him.  Poor thing!

I saw a post today that reminded me that it is going to be Thanksgiving soon.  Great!  I was also reminded of my surgeon's words that "this type of surgery takes 4-6 weeks of recovery.
You may feel great after a week, but remember that the majority of the healing is taking place inside.  Don't push it!"  He gave me a look as if he has known me for ages, and knows that I am the type that hates being bedridden or sick, for that matter.

The pain has been horrendous.  The nausea, unreal.  Today I tried to move around for as much as I felt able, but it is still very painful.  To top it off, I am super hungry, but can't keep much down except porridge and simple soups, like broth.

I find myself having a little pity-party.  Although I have several surgeries, I have found this to be very difficult to handle.  I don't even want to think about the upcoming holidays, cooking, hanging decorations...you know all those things that everyone else will be doing as the Holidays approach.  Part of me wants to just bow out of this year's festivities, but I don't want others to wonder why I am not taking part....although I believe they would know and understand.

However, I know that I must push through.  As so many of my friends have reminded me of lately...I am a Warrior...a strong one....and I will make it.

I figure that I will have a plan of action when everything begins at Thanksgiving.

I will leave most of the cooking to my son and his family, and pitch in where I am asked.  After all, I don't want to spend weeks after recovering from Thanksgiving before Christmas gets here.

There will be a special area where I can just crash with no risk of bumping into people.  If I feel like lying down on the couch, just leave me there.

When you're chronically ill, one develops coping strategies.  Right now mine is...."This too shall pass."  Although I am looking forward to the week or weeks ahead when I am feeling better, I am taking it one day at a time.  I don't want to be selfish.  There are others who are in a worse condition than I am.

Anyway...some tips for surviving the holidays:

• Remember giving doesn't have to be expensive or materialistic.
• Keep things simple. Remember that the holidays are really about giving, loving and being thankful.
• Cherish and enjoy your precious moments with loved ones.
• Prepare and plan ahead.
• Get lots of clean air, pure water, rest, and exercise.
• Avoid sugar and unhealthy snacks. These will only exacerbate symptoms and aggravate depression. Make your own healthy alternative snacks sweetened with fruit juice, maple syrup, stevia, or other healthy sweeteners.
• Take these snacks with you when you go to social events. Find alternatives to eat, don't go without so that you feel deprived.
• Allow extra time to prepare for social events. Don't take on too much.
• Avoid crowds; shop early. Make some homemade gifts or give gift certificates or take advantage of catalogs and online shopping.
• Acknowledge and be aware of your feelings. You don't have to feel a certain a way. Allow yourself to feel whatever it is you feel.
• If you're feeling sad, allow yourself to grieve.
• Take naps.
• Don't set expectations too high. Your holiday doesn't have to be perfect.
• Prioritize and minimize. Don't overdo.
• Don't forget to give yourself a gift. (A massage, book, extra time in bed or something special you've wanted for a long time.)
• Communicate your needs and feelings to others.

Until next time......rest calls!

Letter to those friends and family of someone with chronic illness

Original painting by Gina Welds-Hulse

When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.

I have experienced this personally and have also connected with others who have experienced this, so I decided to write this letter.

Dear friends and family of those with chronic illness,

I’ve been struggling with chronic illness for going on 15 years now, but it got really bad about 5 years ago, and the last 2 years or so it seemed to take over my life.

Chronic illness turned my life upside-down.  I had to give up a lot....including work.  Yes, even keeping up with work became a challenge.  I had to go part time in a job that I loved.  I eventually had to quit when it became too diffuclt to keep up with the demands of work. Chronic pain was gradually stealing the life that I had worked very hard to build. I had to quit karate.  Painting became a challenge also.  Over the past year i have gradually worked to rebuild some semblance of a life that chronic illness had stolen from me.  I started to paint again, and set my sights on an art show that is now just a couple of weeks away. I stared training in martial arts again, but have since had to stop again due to illness and complicated health issues.

I knew that these kinds of health issues would make big changes in my life, but I don't think I was quite prepared for the changes it was to make in my relationships, friendships specifically.  Health changes really do undermine friendships.

When we are dealing with chronic illness, pain or discomfort some friends just aren't sure how to act under the new set of circumstances.

When you’re sick you constantly have to think about the repercussions of every action. We have to weigh how much energy it will take, what the effect will be if we overdo it. How will we feel tomorrow?

Don't get me wrong.  I know that I have not been the greatest at keeping up with certain relationships.  I have had to be really selective with the activities that I partake in.  As a mother of 3,  and one that still depends on me I also have to be careful to have the energy to be a mother while dealing with a chronic illness.

I get it, I really do.  People who love us want to help us. I've had some friends reach out to me.  The trouble is that many of my friends are overseas.  However, I was a little shocked when many of those whom I considered friends here turned their backs on me.  Some just stopped calling me.  When I called, I was given an excuse of why they couldn't talk.  Some people attacked me verbally.  The sad part is that I know that I am not the only chronically-ill person that this has happened to.

I am writing this now because it needs to be said. Chronically-ill people do not want to be sick.  We did not choose to be ill. Yes, I am in a position now where I am fighting with everything in me, but I know that there are others out there who are struggling with no around to help them or reach out a hand. 

Losing friendships is a whole different kind of pain.  I guess people find it easier to deal with death than it is to deal with a chronic illness.  I think it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief. There are no rituals for the grief that keeps on giving or the stress that becomes a way of life, like a chronic illness.

We try not to take the loss of friendships personally, although we still care for and need our special people in our lives.  However, sometimes we also realize that sometimes these loses are blessings in disguise...at least that is how I look at it these days. I've realized that some of those friends were really not true friends to begin with.  Instead of focusing on the heartbreak of losing friends, I have learned to let go, have compassion for myself, and know that new friends do appear. 

I understand that sometimes these things happen because of inexperience.  Some people just don't know how to deal with someone with lupus, who practically lives at doctors' offices.  Some friends who have not experienced loss or pain on this magnitude can't really understand the daily fatigue and pain.  However, please don't make us feel embarrassed, flawed, or inadequate because of the pain. That hurts even more than the physical pain we are feeling.

I will end this with a statement of gratitude to those friends who have stuck by me, and to those friends that I have gained in the process.  

Remember that those of us with a chronic illness are doing our very best and truly cherish the comfort and affection of our friends and loved ones.

I love you all.  See you soon.

Love,

Gina

Set new goals that offer challenge and the chance for success.

When we undergo any crisis, it is quite common for our self-esteem to dip somewhat.  As we are handed one crisis after another, our feelings of self-worth can wane from day to day.

Goals that we may have set for ourselves now seem impossible to achieve.  We put them on the back burner and forget about them....or maybe we think about them but don't think we are capable of doing them as well as we would like before the crisis hit.

Now consider that crisis is the diagnosis with a chronic illness.  

Goal-setting for someone with a chronic illness can seem like a waste of time. How are we ever supposed to succeed at a goal when our body is fighting against us?

I’ve learned a few things over the years I’ve been ill and one is that it is possible to set and achieve goals. You just have to go about it differently than most.

You have to take time to nourish your dreams! Illness or disability do not have to prevent you from reaching them.

Last month, I set a goal for an Art sale and exhibit in November.   To accomplish this I have to have completed a significant body of work to have anything to exhibit or sell.  So far I have completed 6 paintings and would like to complete at least 3 more each month until November.  That would give me 9 more to do. I also set a goal to write at least 4 articles per month. I try to write at least 1000 words a day.  Some days, I don’t have time to write, or I may not feel like doing it. So, I make sure to listen to my body, to not stress over it too much, and, to manage my time so that I can still stay on track with my goals.

Time management, and managing expectations are two great ways to also reach those dreams. Is your goal to stop smoking? To exercise more or drop a few pounds? To eat healthier? To learn a new language? To volunteer? To start knitting? To start drawing?

Here are the nine things I think are important when setting goals:

1. Be realistic.

It’s not going to do you a bit of good to set a goal you have no way of accomplishing. I’ve always admired people who complete triathlons, but let’s be honest here, that is not going to happen with me.  I did set a goal to complete a marathon and started to train for it ...until I had a minor surgery to implant a heart monitor.  That minor surgery set me back 4 weeks in training. So I set goal for a half marathon. Then I had another minor surgery...and then another.  Soon I had to say to my self...."Maybe this is not the year that i complete that marathon or half-marathon."  That wouldn't mean that my life is over. I had other things I wanted to accomplish.  Make sure your goal pushes you but make it one you have the ability to achieve. If taking better care of yourself is on your list, then work on that. 

2. Make it motivational. 

If you can already walk on a treadmill for 10 minutes at a time, setting a goal to walk on a treadmill for 15 minutes a day, three days a week by the end of the year isn’t stretching yourself. Give yourself something to push toward. That’s when you really feel alive — when you see yourself reaching goals that took effort to accomplish. Recently, I noticed that my art work took off on a slightly different style.  I noticed that it occurred around the time when I suffered a slight psychosis....although my psychiatrist stated that he was not concerned due to the fact that I was educated and knew how to handle the hallucinations that I was experiencing.  I decided to put that into my art....the subject matter.  People want to buy art that they can relate to, or art that is created based on the artist's experiences.  We'll see how that goes in the show.....but my emotions are being put out there.

3. Only set a few goals. 

 I am always reading of people getting college degrees in their 80s, or of running their 30 marathon, or traveling to a certain amount of countries in a set period of time...or climbing a certain mountain.  The quest to beat certain odds never ends, yet so many of us feel that when we get to a certain age it is time to slow down and not set goals. Why???

Don't get me wrong.  I know the challenges of dealing with chronic illness and trying to set goals at the same time.  Last year I decided to home-school my youngest son. He decided to continue with homeschooling this year, and although I have had some setbacks over the last few months, I have worked to get my health back under control to be able to achieve this, as being a mother is my greatest achievement, and I aim to be a great mother no matter the age of my children.

 If you’ve never set goals before, try one or two. If you have set goals in the past I would still stick to no more than four. The amount of time and energy our illness takes is huge. 

4. Always pick one health-related goal. 

You might be tempted to ignore this area of your life altogether because it already demands so much of your time, but your health is essential. Choose a goal that would make you feel a bit healthier when you reach it come next December. Maybe it’s to research your illness better so you feel like you actually know about the disease you're dealing with.  You might want to go to the library to pick a few books, or purchase some kindle books online.  When I was first diagnosed with lupus, I went on a hunt for more natural remedies to heal myself, ranging from herbal remedies to essential oils.

If your goal is to walk for just a few minutes a day, or to spend a few minutes on a nature walk each week....what ever your goal, set it and work toward it.

5. Start slow. 

If your goal is to gain strength, don’t start by joining a gym and trying a 30-minute workout on day one. You’ll only throw yourself into a flare. You might start instead by grabbing some soup cans and doing a few arm curls. As you review your goals, you’ll increase your amount of exercises and repetitions.

If you want to write, set a goal of writing 500 goals a day or a little less, if 500 is still a task.  Gradually build up to 1000 words a day.  I try to write about 500 words at least a day, in addition to painting for at least an hour, working towards my art show in the next 3 months.

6. Don’t always get caught up in an end goal. 

Make progress the true goal. Some goals do have an end game, like writing a book or organizing your house, or my upcoming art sale, or the articles that I write.  Most experts will tell you these are the only kind of goals to make. I tend to argue this when it comes to those with chronic illness. If your goal is to make your body stronger, then decide on a few exercises and number of repetitions you’ll do. Complete that consistently for a week or two and then re-evaluate. Increase the number of exercises and reps as you go.  Give yourself a date to evaluate and you’ll realize how much stronger you'll be than when you started.

7. Break it down into workable chunks. 

Take a few minutes to break each goal up into pieces.  Set yourself up for success. If your goal is to learn about your illness, decide which month you’ll read which book and which months you’ll be doing online research.

8. Review frequently.

Write your goals down on paper and put them somewhere you’ll see them often — if not daily! Set a specific time frame for reviewing your goals. I suggest once a month, but you might choose to review your goals weekly. Whatever you decide is fine. Just be sure to stick to the review periods. These are crucial. During your review period you’ll need to look at your goals and re-access. Don’t toss a goal out the window if it isn’t working right away. Re-assess. Did you try doing too much at once? Did an added illness or extended flare stop you from reaching the goals for that month? You might need to alter the plan a bit.

There are numerous times that I have had to adjust my goals for a particular week because I might have had an infusion that caused a bad reaction and I could not write due to joint pain.  In this case I try my voice to text software.  Sometimes it works and  sometimes it doesn't.  When it takes more work to complete a goal using this method, I just let it go for that day, and alter it for the next day or week.

9. Show yourself some grace, and allow for setbacks.

There are some things you can control when it comes to your health. But let’s face it, our health has a huge control over us. You have to allow yourself the grace to get through the goals or to scrap them all together and regroup, like I mentioned in the previous segment.

The whole point of setting goals is to make progress and be the best you possible. You may find some goals don’t work for you or you may find they aren’t that important to you after all. That’s OK! Just don’t let your illness force you into a situation where you feel like your life is over. Like I’ve said before, it may not be the life you imagined, but it can still be a good one, an inspired one!

Managing not only your illness, but the side effects, treatments, infections, secondary illnesses and more can quickly make it feel like God handed you a bag of rocks. Surprisingly, I have adapted over the years and learned to be content in circumstances I never thought I could find joy in. I've stopped comparing what’s in my bag of life with what those around me are getting out of life. I have learned to find joy by living the inspired life!

Oscar Wilde once said that "to most of us the real life is the life we do not lead." Today I am going to talk about envy. Do you enjoy feeling envious? I'm sure none of us enjoy feeling envious, but I am almost sure there are times we find ourselves wishing we had what others do.

Find out to concentrate on all its joys and treasures that your life offers you on a daily basis, here:

Envy and Chronic Illness

 

 

40 simple ways to enjoy life to the fullest

Man.
Because he sacrifices his health in order to make money.
Then he sacrifices money to recuperate his health.
And then he is so anxious about the future that he does not enjoy the present;
the result being that he does not live in the present or the future;
he lives as if he is never going to die, and then dies having never really lived.

– The 14th Dalai Lama

 

Do you want to live a happy life? If you say yes like most people do, then it’s important to learn to enjoy life. Some people may think that they can only enjoy life when they already have a lot of money or have a successful career. But that’s not true. You can enjoy your life where you are with what you already have. You can enjoy your life now.

As you know, with modern life, it is so easy to get stressed. There are so many things you have to deal with such as bills, overload work, family responsibilities, and so on. Yet, how can you reduce, even abolish all the stress all negative emotions and depression and really begin enjoying life with happiness and peaceful mind?  

Click on the link below  for 40 simple ways to enjoy life to the fullest.

40 Simple Ways To Enjoy Life To The Fullest

 

 

 

Going to my happy place.......

What a day of mixed emotions! Awesome art class! Preparing myself mentally and physically for the stomach procedure tomorrow.....now I'm told that a possible source of the bleeding that I have been having for the last several months has been found, but what was a two centimeter fibroid last year is now about tripled in size, "and it may be a type of sarcoma, so I'm writing you this script for a pill to slow the bleeding while we do some more tests." (Paraphrased of course)

God, my knees are sore. Can we do knee replacements first, please!?!?! I said, please!!!  Prayer seems to be my stronghold right now.  I seem to always be praying.  That's a good thing, of course.

As I write this, I am in the process of drinking a gallon of bowel-cleansing solution referred to as  NuLYTELY Lemon Lime (polyethylene glycol electrolyte solution).

What is it?

Polyethylene glycol electrolyte solution is a laxative solution that increases the amount of water in the intestinal tract to stimulate bowel movements. This medication also contains potassium, sodium, and other minerals to replace electrolytes that are passed from the body in the stool. 

 

I can honestly say that I have had some challenges, but drinking this has got to be among the top. I exaggerate, of course, but I don't care how much lemon-lime flavor has been punched into this solution, it tastes like.....well I'm sure you can figure that out.

When I first posted that I was going to be drinking this solution and asked if any others had experience with it, I got so much feedback and suggestions on how to get through the experience.  One suggestion that popped up frequently is to "go to your happy place."

This solution is supposed to "provide optimal bowel cleansing" for the biopsy of my stomach and small intestine tomorrow.   At the moment it is working a little too well, but I don't think that the bathroom is what anyone meant by my "happy place,"  although I have spent quite a bit of time in it over the last few hours.

It's a good thing this solution did not cost me anything (as my insurance company paid for it) as it would literally be money down the "proverbial" toilet.  I also can't help but wonder if this couldn't be harmful in the long run.  I've spent so much time trying to heal the gut.  After all that's where up to 75 or 80 percent (depending on what documents you read) of the immune system resides.  By drinking this solution, I am literally "flushing out all the bacteria, good and bad, from the system.

Is this for a good cause?  I guess I will be able to replace those good bacteria lost, using fermented foods, kombucha, and other forms of probiotics.

So, back to this happy place.....What and where is your happy place?  How do you get there?

It's literally like a mind game, isn't it?  We sometimes think of a happy place as a physical place and it can certainly be that.  Taking a walk in nature.  Playing with our kids.  As I was thinking of places that make me happy it's always one of two places....or I should say countries, and my children and/or family and friends are always involved.

So I started to think about all the reasons why I love my birth country so much...and I was yet again flooded with joyous memories.  One of my favorite places to hangout  was on the beach in East End across from my Aunt Marie's house in a hammock, especially on a Tuesday night, watching the cruise ships pass by as the moon rose over the horizon.  My aunt has long passed on into heavenly realms, but my memories of those visits with her long remain.  Of course, I have so many areas that envelope my mind when I think of my "happy place."  I highlighted them in article I wrote recently here:   http://hubpages.com/travel/Reasons-to-love-AND-visit-the-Cayman-Islands

How do you get to your happy place?  How does doing this impact your life?  I’d love to learn your perspectives.

What I learned from a walk in the dark.

In two days I will once again be plunged into a world of darkness, when I will be given anesthetic to put me to sleep.  You see, I will be undergoing a biopsy of the stomach and small intestine, and, unlike the uterine biopsy that I had last week (for which I was awake), I cannot be awake throughout this one.  I've been informed that a tube with a camera at the end will be inserted down my esophagus into my stomach and small intestine.  Another tube with an apparatus at the end will take a few "clippings" from the stomach and small intestine, which will be later tested for a variety of things.

When I first learned that I would have to have this procedure, of course I started to think about the other times that I was "put under:"

• the DNC after suffering a miscarriage
• The breast surgery
• ovarian cancer surgery

I flat-lined during the ovarian surgery, so of course that has been on my mind recently.  Even though I know that God himself brought me back from the brink of death, it still makes me wonder, and be a little anxious about this coming Wednesday.

I will be taking a trip into the darkness, again.  Now normally the darkness does not bother me....at least not like it did when I was younger.  Some, or most,  of you can probably relate to having a fear of the dark as a child.

The gift of imagination has granted us the ability to invent ground breaking technology and to surpass nearly every hurdle that mankind has faced. However, this talent has a flipside. The power of imagination is so potent that it is capable of destroying lives and reducing the strongest of men to gibbering wrecks. These terrifying thoughts generally need a catalyst, and the most commonly responsible is the dark.

From an early age, fear of the dark has plagued young children. Sleepless nights wondering what monsters await under the bed or what manner of aberrations live inside the closet are common place.

Fear of the dark has its roots from early man when we were perceived as prey by all manner of fearsome beasts that roamed through the shadows of night. The discovery of fire was hugely influential in primitive engineering circles but perhaps more than anything, it gifted man the ability to overcome darkness and keep perceived and very real dangers at bay.

There is so much that I have learned about darkness, as I have grown. Click on the link below to see just some of the lessons that I have learnt from the darkness, and that I believe the darkness teaches.

http://hubpages.com/health/What-I-Learned-From-A-Walk-In-The-Dark

March 12th, 2017

Since this article was written I have undergone a major surgery, a complete hysterectomy in November 2016, in which the uterus, ovaries, fallopian tubes, cervix and a massive tumor were removed.  Since that surgery I have had several complications.

There are days that I have sever migraines, where I am screaming.  At other times I am shaking as in in a seizure.  I have developed tremors and am in chronic pain.

Has the thought to give in ever entered my mind?  Sure it has!  It has been a challenging last few months, but I am not a quitter, even though I consider this to be the darkest period of my life.  I hold onto faith and know that things will get better.

.....but you look so good!

Tip for living well with chronic illness:
Remember that some friends and family won't understand what you're going through, especially when you look the same on the outside.
True friends will stick with you no matter what!
Do your best to educate them on your illness and what you experience from it, if they are willing to listen.  True friends  will come to visit, help with errands and chores, laugh  and cry with you and understand!!

Navigating Motherhood and Chronic Illness

When you have a chronic illness, parenting has a whole new set of challenges and worries.

If these words, Chronic illness and parenting, relate to your life, chances are they are enough to keep you busy indefinitely. They can easily become a large part of your identity, and they both fight for control over your energy, time, and some days, your sanity.

Today has been especially tough, as I have been recovering from a procedure done a few days ago.  I have been a little tired, and really have not been able to do much, except fix meals, rest and think about what I'm going to write for my next blog. 

Handling chronic illness is about learning to live in balance.  You can't dwell on questions like, 'Why is this happening to me?' or 'What if it gets worse?' But you do have to be constantly conscious of your health status, and take the time to rest, exercise, and have fun. It's important to focus on feeling well and to maintain a positive outlook.

Read about my journey as a parent with chronic illness here:

http://hubpages.com/health/What-Its-Like-Being-A-Chronically-Ill-Parent

When overwhelming fatigue is a B***h!

Yesterday was an extremely tough day for me.  It started out fine, with a trip to the hospital for some blood-work and an ultrasound.  On the way back home the overwhelming sense of I can't go on any further" just hit me.  I became so exhausted.  It was difficult to breathe.

I got home, and all I had energy to do was crawl into bed.  However, I tried really hard to stay active as "I had so much to do." I managed to fix something to eat, while thinking about writing this very blog.  I didn't have the energy to do that.  I wanted to work on a painting, but I didn't have the energy to even lift the paint brush.  So.....I gave in to rest.  I put on a movie to help beat the silence and quiet the tinnitus in my head.  I grabbed my iPad and started to do some reading.  If I had to be in bed, and couldn't sleep, I could at least read.

This kind of fatigue does not hit me often.  It's the kind where I have no energy.  I'm not being lazy.  I just feel drained. I guess that's what lupus and chronic illness does to you.

From what I understand, as many as 80 percent of people with lupus experience fatigue. For some people with lupus, fatigue is their main symptom and can be debilitating, even to the point of forcing them to stop working. It is unclear why extreme fatigue occurs in so many people with lupus, but disease activity, pain, age, and medicines being taken, as well as poor physical and mental health and lack of good social support, all appear to play a role.

For me, maybe it was my martial arts class the night before.  I made it through, because I knew today I probably wouldn't be able to take class due to it being "fusion day," as I call it.  You see, my iron has plummeted again, and I will be back sitting in the hematologist's chair as they pump a cocktail of iron-rich "stuff" into my body.  ....but maybe the fatigue is from all the excessive bleeding I've been doing.  The gynecologist suggests an ablation since the hysterectomy is out of the question due to my health concerns, plus the fact that I flat-lined during the last surgery.

Ok...so I have been diagnosed with a few anemia types.....iron-deficiency anemia, pernicious anemia.....I also have vitamin D deficiency....folic acid deficiency.  I'm getting a biopsy on the stomach and small intestine soon to see what's going on.

Whatever the reason, fatigue was a b***h yesterday.

My secret for dealing with normal fatigue is essential oils and my power smoothies, (I'll post on that soon), ....but this was a powerful kind of fatigue. I'm glad I'll be seeing the hematologist today, as the fusion will help.  It did the last time...at least for a month and a half.  Maybe when I get home today I will be a whole new person.

If you suffer from fatigue that you just can't seem to get past, please be sure to see your doctor. The following issues will add to the fatigue, so be sure that you are in touch with your doctor regarding them, to minimize the effect on your level of exhaustion.

*Stress

*Depression and Anxiety

*Thyroid problems...make sure your doctor has checked these at least once. a year. 3-4 times a year if you are on thyroid medications.

*Anemia (This is common with Lupus)

*Sleep Apnea

*Pulmonary fibrosis

*Low vitamin d levels

*COPD

*Congestive heart failure 

*Chronic pain

*Other concurrent conditions (Diabetes, Rheumatoid Arthritis, MS, etc.)

Ok....rant over.  Yes, this for me was a rant.  I don't frequently complain of what I go trough daily, but being this tired......OMG...it was the worst!

Do you have any secrets for combating fatigue?  Feel free to share them with me in the comments below....or just add your own rant.  That's fine, too.

Before I leave, may I suggest watching this video:

https://www.youtube.com/watch?v=Oo9vxur6B7Q

It contains great tips for overcoming fatigue.

Losing friends due to chronic illness

 "In time of prosperity friends will be plenty; In time of adversity not one in twenty."

 English proverb

I’ve written about my experiences with lupus and chronic illness before from so many standpoints, but I believe this has been the toughest topic to address.  So many of those folks that I have called friends in the past are no longer a part of my life. They, like many of the reader's friends, seemed unwilling or unable to comprehend my disease or my journey with chronic illness, and when I stopped participating in activities that we shared, they slowly just dropped out of my life. When I happen to meet one of them somewhere, they will inevitably ask politely, "How are you?" and fully expect me to simply smile and reply that I'm fine. Which is what I do and then we both move on.

I have felt your frustration and disappointment, really I have. It hurts when people that say they care about you don't seem to want to take any initiative or make an effort in understanding the enormous changes that your body is going through, doesn't it?

What I once thought was a very large circle of friends has become much smaller over the past five years. But those that remain are those that keep me going. Here's a great example: One of my friends, after hearing of my diagnosis, actually called me to say that she had done a lot of research on lupus, and wanted to know how she could help me.  Her gesture told me volumes about the sincerity of our friendship.  Another friend questions me, genuinely, each time she sees me….which is several times a week….”How are you doing, REALLY?”  I also deeply appreciate the friend a few weeks ago who gave one look at me, put her arms around me and whispered, “I can tell you are having a rough day.  What can I do to help?” To be honest, though, I don’t expect everyone to be that insightful.

 

If you’d like to read more about my journey with chronic illness, you can find that here:

http://hubpages.com/health/Facing-The-Giant-My-Lupus-Diagnosis
 

So the questions remain - How can you tell which friends will eventually GET IT and which won't? How many times do I have to explain it all? And what do I have to do to maintain my friendships? Why did some friendships become so hard, and why do some seem unchanged by my disease?

Chronic illness scares some people, or they don’t know what to do with me or how to treat me. I am learning that this is just what happens in chronic illness life.

Don’t get me wrong, it is frustrating and it does hurt, but I have realized that my illness pushes people to their poles. Those who are not interested or can’t cope (regardless of the reasoning) create a distance between us that was not there before, and those who are able to take my illness in their stride create a closer bond. People have clearly become more safe than they ever were,.…or less safe, and it is being defined by their responses to my illness.

The irony is that I don’t want to be defined by lupus, or the host of other diagnoses that I manage each day.   I am not embarrassed and truly, anyone of you can ask me anything. But that is not the same as me wanting to talk about it all the time, and the last thing that I want is for it to be the main thing that we talk about.

 I would love my friends to be safe enough for me to cry on their shoulder when I need to or for me to tell them of a frustration or whatever, but for the most part I just want to be me as I am…..the crazy designer artist, who is still dreaming of that great exhibit, still working to put together that solo show, the eccentric herbalist who is constantly experimenting with different blends of essential oils to heal my body, the home-schooling mom, martial artist, and friend who I hope my friends can call on in time of need.

My public world has expanded as I have taken on a role of creating awareness and understanding, but my personal world has shrunk to about a quarter of what it was! I am pleasantly unsurprised by some of whom fit into that safe category, and pleasantly surprised by others who have chosen to move closer rather than run away from me or attack me. But all three quarters of those who are running away have surprised me.

It was a painful process of losing people. It still is.  Some of those friends have willingly walked away, and some I have purposely ended relationships with. Part of this is a result of the people in my life not being the greatest people to have as friends, and part of this is a direct result of me making positive changes: getting sick allowed me to see my world with a new perspective. My life is no longer about petty concerns and trivial bullshit. (Yes, I used that word.  I know that shocked some of you.)  Now, it’s about creating a calm, positive, healthy environment and keeping my stress to a minimum. It’s about creating as happy a lifestyle I can, living the inspired life,   for myself, and my family and friends that remain....... in spite of immense suffering.

And that means being proactive about who I surround myself with.