Lupus Explained

Lupus ExplainedThis is going to be a personal explanation of how Lupus affects my life. I’m not going to get into too much of the literal description, as we can find that online.  This is the knock down, drag out, FIGHT against a disease that’s not known as anything other than something bad by most people.  (Which I plan to shed some light on and help others understand.)  Some of these symptoms are also experienced with MS, Fibromyalgia, and Chronic Fatigue Syndrome, etc.  I’ll also explain the paths that I’ve taken that have helped to lessen the symptoms.

I went through years of misdiagnosis, as you can see here:





Misdiagnosis is Too Common

For those with family members or friends who just “Don’t get it.”, here are two of my articles that can help:





Having a Support System

Understanding Disability




“Looking Sick”

I’m going to start with an experience that I had recently.  I live in Maine and this will be the first Winter since 2010/2011 that I’ll have my own vehicle.  YAY, in so many ways!  Uh Oh, in other ways.  Namely, clearing snow off of my small SUV.  My other option would be free Winter Relief Parking, with a 5 city block walk in the blusteryness.  :-)   So, I decided to buy a nifty snow rake this year.  On days that my arms work better than my hips, I’ll have an easier time with this splendid device.

I’ve worried that buying it would get pushed further down on my list of “To Do’s”, and as it gets colder, I have much more pain and less ability to venture out.  So, I went to my local auto parts store.  I hobbled in with my cane and asked the man for a snow rake.  He looked shocked and told me that I was first to ask.  I said, “Yep, getting prepared.”, with a smile.  They had to go and dig it out of an unopened box.  Another guy joked around that it was supposed to be 105 degrees the next day (not true).  I replied jokingly, “If we get a freak storm next month, you know who to blame.”  ;-)   Well, when the guy came back with the snow rake, 4 male employees in there really started laughing and saying how ridiculous it was and how “she” should come back for another one next Spring, too (like I wasn’t even standing there).  To which I replied, “It’s not that funny, guys.”, hoping that they’d knock it off before I had to make them feel completely foolish.  Onward they go…getting more and more insulting.  I looked to the ring leader and said, “I have Lupus and I’m not able to get out much, so I really appreciate this.”  (My tone of voice showing that I didn’t appreciate it one bit.)

BOY, did they zip their lips and scatter like cockroaches!  The one that I commented to could only mutter, “Oh really, Wow!  Thank you for your purchase.”  I finished my transaction with the guy next to him (who was the “105 degrees” guy, who then fumbled with my receipt awkwardly).  I said my “Take Care’s” and hobbled my way back out.

Those men didn’t know that I had to choose that errand over a shower.  They’re fooled by the fact that I choose to dress nicely (yet uncomfortably) when I’d really like to show up everywhere in my comfy, old gym clothes.  They don’t realize that my hips are dreading the extra walking that I need to do and that I’m praying for them not to dislocate.

Lupus can be mild to life threatening.  When your white cells send out antibodies to attack, there’s no telling what a confused immune system (from what I think is years upon years of exposure to toxic chemicals in our environment, food, and medicine) will target.  My immune system has destroyed cartilage to the point where my ribs and hips can’t stay in place with even minimal pressure.  I can’t open heavy doors or use my hip to keep them open.  It has also deteriorated the lining of my bladder which is EXTREMELY painful.  (This has its own diagnoses of Interstitial Cystitis, but it stems from the same issue.)

Here are some of the things about Lupus that the web won’t tell you.  You should really live in a bubble.  Yup, that would make life better.  ;-)   If someone with Lupus comes into contact with bacteria, they will be sicker than someone with a normally functioning immune system, and most times for about 3 times as long.

I’m very strict about washing all of my veggies that I eat raw with a 50/50 solution of peroxide and water.  I also stay far away from any produce that’s showing signs of even slightly going bad.  I had a 2 day vomiting episode from a too mushy, brown spot on a banana, never again!

If your allergies are triggered, a domino effect happens and signals your immune system to search and destroy.  You can feel the “flare” throughout your entire body.  Your eyes burn, your skin itches intensely, your joints and muscles feel like your worst injuries all at once, your nerves feel like you have a constant electric shock going through them, and your body feels like the time that you had the worst flu, but triple that.

The exhaustion that comes with Lupus can’t be related to anything that I’ve experienced before.  Pretty much, it feels like anesthesia.  Sometimes, I can sleep all night and have a 3 hour nap during the day, but barely have the energy to get my little dog outside.  It certainly feels like you haven’t slept in days.

Sunlight triggers rashes that feel worse than a horrible sunburn.  When it’s 75 degrees or above outside, it feels like I can’t breathe properly and like I’m carrying around twice my body weight.  When it’s 45 degrees or below, every bone in my body feels like how a sensitive tooth does when you eat or drink something very cold.  Bone chilling pain is an understatement.

Lupus causes you not only to bruise and injure easily, but healing time is severely stunted.  Your body’s healing mechanism is actually malfunctioning and is off doing damage somewhere, instead of its job.

Lupus affects your cognitive function.  Since Lupus eats away at any tissue it pleases, brain tissue isn’t off limits.  Your memory goes from snappy to sluggish.  You find yourself having trouble forming sentences properly.  Following conversations and directions is harder and you’ll need to write EVERYTHING down.

Lupus comes along with sister diseases like Sjogren’s Syndrome and Raynaud’s Phenomenon:

Sjogren’s Syndrome can have similar systemic issues as Lupus, but the unique issues are that the immune system destroys your moisture producing glands, so you don’t produce enough saliva, or lubricating tears.  It affects your skin, lungs, and nostrils as well.  Breathing can be painful.  It feels like you have a coating of sand or baby powder in your eyes, nose, mouth, throat, and lungs.

Raynaud’s Phenomenon causes circulatory issues that lead to cold hands and feet that turn blue-ish purple, or pale yellow/white.  Having this on top of arthritis in your hands and feet makes using them very difficult.  Add onto this that these numerous conditions cause neuropathies (nerve irritation) that also lead to numbness and difficulty with dexterity.  I’ve found that I can only wash a one or two dishes at a time because my strength doesn’t last that long.  I’ve also realized that I can’t knit without a loom, or play guitar (a newly learned skill) for very long.  My novice, at best, piano playing skills have gotten rusty, too.

If you stay in a stationary position for too long (standing, sitting, or lying down), your joints will freeze up like the Tin Man.  Gentle movement and stretching help this.  I tried Aquatic Therapy and found it to be too much of a strain on my system.  This is coming from someone who couldn’t wait to leave work to spend two hours at the gym.  Here’s the old me in the Summer of 2007:


I can’t even begin to tell you how many people think that all I need is exercise.  I miss this ability terribly and I strive to get back to it, yet I know what my body is and isn’t capable of right now.  I even had a doctor tell me that all I needed to do was Jumping Jacks.  I fired him and now refer to him as “Dr. Jumping Jacks”.  ;-)

I watched my father go through Lupus for a year and a half before my diagnosis.  I saw him flare, then save up energy to get on a ladder to clean out the gutters, then be in bed for a few days afterwards.  That’s what happens to me as well.  When I’m active one day, I find myself in bed the next few.

Bodies with Lupus only have so much energy.  I think that it’s because the body is always on attack and uses your energy that way.  I tried to push through this early on in diagnosis and paid the price.  I’ve learned to change my “plans” to “intentions” so that I don’t constantly feel like I missed the mark.  You can read more about this in my article here:

Pacing Ourselves




Pacing Ourselves

I’ve learned to live moment by moment.  I recently put together a bookcase that I had the pieces of sitting in my living room for 5 months.  I knew that I’d eventually have a good enough day to complete it.  I also knew that I’d pay for it and I’m still recuperating from putting it together on 9/4/13.  However, the accomplishment far outweighs the pain.  :-)

Some with Lupus have much worse symptoms than I do, some can still work and exercise.  Just like Cancer, Lupus invades every body differently.

Intestinal issues are rampant in people with Lupus.  Celiac Disease is common.  I have that under control, yet I’m still struggling with my digestion.  I can eat 2800 calories a day and still continue to lose weight.  There’s some sort of malabsorption going on.  This comes from an imbalance in good gut bacteria, which is killed by the MAD (Modern American Diet).  I’m increasing my intake of Fermented Veggies, Sole, Aloe Vera Juice, and Pau D’Arco tea.  These are all healing agents.

I’ve noticed that diet plays a HUGE role in the severity of symptoms.  For 2 years, I decided to try an extensive Elimination Diet and found the culprits of many things that increased inflammation, migraines, rashes, and fatigue.  I plan to write on this topic in the future.

Unfortunately, my experience with Lupus has been disabling.  I’ve received a lot of questions regarding the disability process.  I’ll be writing about my 2 year battle for SSDI in the very near future.  I used to work 50 hours a week, spend 8 hours a week at the gym, and go hiking or some other activity on the weekend.  Lupus leaves you with a mind that wants your old lifestyle back in the worst way, but with a body that won’t cooperate.  I realize that it took over 34 years for my health to deteriorate to this point, so with my new found healthy living, I’m wondering if I can reverse the damage.  One thing about me is that I have hope even in the darkest of situations.  I believe that has kept me from embracing Depression and Anxiety.  Not that I haven’t had my fight with it, you can read about my journey through Situational Depression and Anxiety here:

Depression & Anxiety




Heal Depression & Anxiety

While there are many symptoms that haven’t budged yet, I’ve been able to heal the lacerations on my eyes from Sjogren’s Syndrome, naturally.  After many costly and ineffective drops and ointments, I found a real solution (Opthamologist Approved) to the problem.  You can read about that here:

Dry Eyes9




Dry Eye Relief – All Natural

I’ve also been able to greatly reduce my inflammation by knowing the Inflammation Factor of foods.  You can read about that in my article here:

IF 5




Inflammation Factor

There are many things that have made Lupus worse for me because of their chemical or hormonal make up, or the process of creating or refining them.  Also, anything that’s estrogenic has made life worse for me by prompting migraines, difficult menstrual cycles, and flares in general.  Here’s a list of only SOME of the things that I’ve removed and/or reduced from my home/diet:

  • Commercial Household Cleaners
  • Commercial Toiletries
  • Artificial Colors/Flavors (Including “Natural Flavors” which is ANYTHING but natural)
  • Citric Acid
  • EDTA
  • Nitrites/Nitrates
  • Preservatives
  • Titanium Dioxide
  • Carrageenan/Guar Gum (Causes intestinal irritation and perforation)
  • Chocolate (Unless it’s Dark Chocolate without Malt/Milk/Soy and other additives)
  • Coffee
  • Corn (Some products I can tolerate)
  • All forms of Dairy (even Goat/Sheep’s Milk)
  • Garlic/Onions (Anything in the Allicin family.)
  • Mushrooms
  • Nightshade Vegetables (Potatoes, Tomatoes, Peppers, etc.)
  • Oats (Estrogenic)
  • Pork Products, Shellfish, and some Red Meat (Highly inflammatory)
  • Soy (Estrogenic)  (It’s NOT the health food that it’s touted to be, that’s all marketing for Big Business.  Fermented Soy products are okay.  More on this to come!)
  • Sugar
  • Table Salt (Using Pink Himalayan Salt can stabilize mineral imbalance from a poor diet.)
  • Yeast

I’ll be writing an article on Soy, and my personal experience with it, soon.  Here’s an excellent book about “The Hidden Dangers of Soy”.  Dianne Gregg’s story was written as if she was talking to a friend, but her informative sections were factual and concise:




I urge you to start reading labels and type just one thing a day into Wikipedia.  If you scroll to “Health & Safety”, or read the about the process of production, you’ll wonder why we even ingest these things.  Additives like Carrageenan are known to cause gastrointestinal disease in laboratory animals, including ulcerative colitis-like disease, intestinal lesions, and ulcerations.   Everything that I’ve removed from my diet leads directly to disease.  We ARE what we eat.  The cure is literally right under our nose, it’s our MOUTH and WHAT we choose to put in it.  :-)   Also, I honestly believe that GMO’s are also to blame for the rise in all disease, including Lupus.

I’ve also learned how much our thinking impacts our health.  Here are a few of my articles that will help you to see how our thoughts affect our body and prevent the possibility of healing:

Inner Dialogue 3




Inner Dialogue

Anger is Like Acid




Anger is Like Acid

While I haven’t been able to heal anything other than small things (For now!), ;-) I’ve seen major improvements in many little areas.  Those little things all add up!  Some things are still very hard for me.  I’ve only been on the path to healing through diet for 4 years.  So, I definitely need to give it more time.

My last piece of advice is on Food Combining.  Did you know that there’s a way that our bodies work their best?  And, it’s not the balanced meal that the FDA suggests.  Here’s the link to many informative charts on this topic:











I’ll be writing in depth on how Food Combining has helped me, in the future.  I’ve learned that most of what the government tells us about health is FAR from healthy.  Remember, they’re out for profits!  The sicker and more addicted to food we are, the more money that Monsanto, Insurance Companies, Hospitals, and Pharmaceutical Companies make!  It was easier for me to quit smoking than to stop eating certain processed foods.  I believe that’s from the HUGE amounts of addictive chemical additives in them!  They’ve got us HOOKED!

Please question everything that you’ve ever been told about health and you WILL be healthier for it!

I look forward to continuing to tell you how I’ve healed, little by little.  Thank you for being part of my journey.  :-)

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

Heal Depression & Anxiety

Depression & AnxietyYES, it’s POSSIBLE!  I only ask that you have an open mind and heart while you read this article.  It might help if you start off by reading MY HEALING STORY and Life Saving Surgery to get a background on what I’ve experienced.

My goal is to help people by giving them hope through sharing my journey and what turned my life around!

You’ll see from my history of accepting abusive behaviors that I was welcoming pain and dysfunction into my life.  I explain this to you so that you can see that when you choose to have hope, over and over, you choose well being.  I just KNEW that there had to be something better than what I was experiencing.

I know that Depression is an extremely dark place.  I experienced it twice in my life, each for about 6 months in 1998 and 2003.  Once after a failed Heart Surgery attempt, and once before the second successful one.  While I experienced Anxiety and PTSD daily from the years of severe abuse and neglect, (I discuss the freedom from those here: Forgiveness Requires Two.), the Depression led me to be seconds away from suicide.  I was upset that my heart surgery failed after going through a horrible surgery experience where I nearly bled out waiting for the nurse to answer my call button.  (I will post on Supraventricular Tachycardia in the future.)  I was upset that my first husband called me a Medical Misfit.  I was upset that he hit me, close fisted, in the head for the first (and only) time not long before this attempt.  This brought back severe trauma from my childhood.  I had never fully dealt with the Sexual Abuse by both of my parents (during the beatings, they forced me to bend over their bed in a way that exposed my genitals for attack), or my mother allowing my pediatrician to molest me right in front of her.  I got married to get away from my parents’ continued abuse.  I had never mourned what I lost during rape.  I had always thrown myself into my work as an escape and I had to resign from many jobs, repeatedly, due to my heart condition (and what I now know are several Autoimmune Diseases).  So, I was faced with all of this and didn’t see a way out at the time.  I thought that taking my newly refilled, 90 Beta Blocker pills would make it all go away.  I had them in one hand, and a glass of water in the other.  I tried to get those pills in my mouth, but something stopped me.  I realized that I wanted RELIEF, not DEATH!  I put those 90 pills on the kitchen counter and started to spell out HELP, but couldn’t finish the “P”.  I put them back in the bottle and went to wake up my husband at the time up and asked for help.  He just said, “Oh, hear we go!”, which made me realize that I needed a divorce.  I started to secretly plan my escape.  He was active duty military and was sent away for a few months.  I was almost free, but I met my second husband during the transition.

When we found out that he got orders to Okinawa, I told him that I would wait for him.  He said “Marry me, and come with me?”  So, I did what any naive, 23 year old girl perpetuating the cycle of abuse would do…I married him within less than a month of my divorce being final, and only having known him for less than four months.  Was he a predator that smelled weakness?  ABSOLUTELY!  When we went back to meet his family before the wedding, I tried to leave in the middle of the night because of how abusive he was being to me there.  He talked me into trying marijuana for the first time when we got back into his hometown and his sources were nearby.  He had already talked me into a pack a day cigarette smoking habit.  I truly believe that the marijuana was laced with something.  As we were driving around in his car, I asked if we were near the ocean.  He said, “No, why?”  I said, “What are those boat masts, then?”  They were TELEPHONE POLES!  I ended up throwing up and in tachycardia in the basement of his mother’s house because he was trying to hide this issue.  He wouldn’t take me to the hospital.  I felt like I was dying.  I made it through that.  A few days later, his sister offered to take me to get my tattoo modified.  One that my ex-husband and I shared.  He was all upset that I altered my body without asking him, even though he told me before we got there that he was sick of the tattoo and that I should get work done on it.  He kept telling me that I was making a mockery out of him in front of his family.  So, I tried to sneak out and call a cab.  He picked me up and body slammed me onto the wooden Futon arm.  I yelled out in pain and he began to hold me down with his hand covering my nose and mouth.  I yielded to him.  The next day, I was getting changed and he asked about the bruises all over me.  I told them they were from him.  He said that I bruised too easily.  I was controlled by complete fear at this point and mostly just did whatever he said from 1999 to 2006.  When I crossed him, I surely paid for it.  I’ll go into Domestic Violence, including the abusers desire of ownership, more in another post.

My ill health caused me to lose more jobs.  (Looking back, I believe that it was undiagnosed Lupus, Celiac Disease, and the like, too.)  In 2003, when I first applied for SSDI (and gave up after the first denial), the Depression creeped back in.  I had also been on a shoebox of pills.  The Beta Blocker lowers the blood pressure, then you need a blood pressure stabilizer that causes stomach spasms, and you need something else.  Varioius doctors tried me on all kinds of different psychiatric prescriptions because they believed that it was all in my head.  They even tried to take me off of my heart pills.  The psychiatric medications didn’t do ANYTHING for my symptoms and just made me feel agitated, shaky, irrational, and I couldn’t find the person that I once was.  Nothing made sense to me.  I ended up stopping everything but the Beta Blocker and Blood Pressure medication right before my second heart surgery.

My mother-in-law would call my ex-husband and because he couldn’t hear well, he would have the phone turned way up.  She would tell him how I was lazy and faking it and just didn’t WANT to work.  Of course, he didn’t stick up for me, even when I confronted her with it and she lied about ever saying it.  When my surgery was a success right before Christmas 2003, she did buy me a heart pendant bracelet that could be engraved with the date of my surgery on it.  I took that as a peace offering.  :-)

After the surgery, I had a new lease on life!  Nearly all of the tachycardia symptoms were gone!  I started a job the next month.  I found myself falling a lot and needing to sleep in my office with the door closed on my lunch (Now I know that this is from Arnold Chiari Malformation of my brain, and possibly the Postural Hypotension as well).  My doctor again told me that it was Depression.  I tried to convince her that I wasn’t depressed anymore, something was physically wrong.  I explained that I didn’t have a hopeless feeling, or lack of interest in life, or anything that I experienced during those two deep depressions.  (You could have waived tickets to France in front of my face and I would have pulled the covers back over my head.)  I explained to her that the second deep depression didn’t even budge with the medication that I supposedly needed to be on.  So, against my better judgement I tried a whole slew of other prescriptions.  All making me feel on the edge of losing my mind, something that I didn’t feel off of the medication.  No matter how sad, lonely, or hopeless that I felt, I still had my wits about me until they introduced these drugs.  I don’t have an accurate count yet, as I’m getting ready to organize all of my records, but I believe that I tried at least 12-15 different psychiatric medications.

I had a few little blips of counseling right before I left my first husband.  However, I started to see a counselor regularly in 2004 and was making good progress on the Anxiety and PTSD.  I could feel myself healing a little at a time with every “Ah Ha” moment.  (I don’t think that it’s necessary forever, though. I had one try to tell me that I was feeling something that I wasn’t because I was getting to the point of not needing her anymore. She saw $ walking away and wanted to keep being able to bill insurance.)

When my doctor convinced me to go back on the medication again, I found myself unable to use my brain properly.  The medication changed my thought process in such a huge way.  I kept telling my doctor that the pills made me feel like I was losing my mind.  When I stopped them, everything in my mind returned to normal.  I still wasn’t depressed, but I was still exhausted and falling a lot, with intestinal issues and heat intolerance, the lists goes on.  Yet, every time that I went to my doctor she told me that it was just stress and that I needed a pill.  I write about this negligence in Misdiagnosis is Too Common.  Doctors really need to test for diseases to rule them out BEFORE jumping to the conclusion that it is “All in your head.”  I stopped going to the doctor, unless I had one of my repeated infections.

I worked with my counselor and got strong enough to leave my second husband.  That was a battle for sure, but standing up to someone that threatened to kill me was easier than even the side effects of those pills.  Within a year, the Anxiety and PTSD were hardly noticeable.

However, I still complained of my physical symptoms to my doctor again, as they kept getting more and more severe over time.  She told me that I just needed to work out, so I took up that old hobby of mine again and truly suffered.  Most times, I nearly passed out during my workouts.  I found myself sleeping on my lunches again and took up a coffee habit that would make Columbia worry about supply!  ;-)

I found myself getting worse and worse physically after this.  I kept running out of sick time at my job and had to leave or face getting fired, so I resigned.  This wasn’t anything new for me.  The next employer laid me off during their third round of layoffs before eventually selling off the company.

While going through all of this, I was trying to be a “Step Mom” to the 4 children that I loved, and still love, so dearly.  Their father kept getting upset with me and telling me that I wasn’t trying to get better.  This relationship became abusive as well and he eventually told me to leave, which I did.  I miss those kids terribly and will always love them, but their father wanted hired help (without pay), not a life partner.  His 5 year old boy told his mom, “Mom, Dad is mean to every woman he knows.”  How sad, but amazing how they pick up on these things!  His 7 year old clung to me on the couch the night that he told me to leave and we cried after she said, “I don’t think that I will ever see you again.”  She was right in knowing that her father would cut me out of their lives.  I told her that it wouldn’t change the fact that I love her and her siblings.

I moved back in with my abusive parents after this.  I mourned and healed from this huge loss.  Now, I’m filled with only beautiful memories of the children.  I had to realize that my “Man Picker” was still broken.  It was broken when I dated the next creep, too.  He bailed when I needed to resign from my career and apply for SSDI.  Unfortunately, I was no longer the Accounting Manager that this fellow Accounting Manager wanted.  I picked myself up, and dusted myself off, and I was thankful that I hadn’t moved in with him when he suggested it.

When I went into my doctor’s office crying because I finally realized that I just couldn’t work anymore, she again told me that I needed pills.  I explained all of my physical symptoms.  How I was sleeping in my car at lunch, feeling excruciating pain, burning eyes, bladder problems, back to back infections, etc.  Yet, this was all in my head, still.  She gave me the horrible concoction that put me into Serotonin Syndrome.  It wasn’t until I went in to her afterwards to demand in writing to see the Rheumatologist (who she KNEW diagnosed my father with Lupus a year and a half before), that she actually did the RIGHT thing.  In order to justify her lack of attention in this matter, she tried to say that she was just trying to help my SSDI case by “proving” that I was mentally ill.

During the Serotonin Syndrome, my mother called all of my “friends”, including the boyfriend, and told them that I had a nervous breakdown and to stay away from me while I got the help that I needed.  (I had left my cell phone with her before I went to the hospital with Serotonin Syndrome and asked her to text my friends to let them know what was going on.)  When I came back from 2 1/2 days in the ER, my parents told me that I had to shower up and be ready to leave the house because a realtor was coming and they were moving to Florida.  I could hardly even walk.  (My father told me that I was being foolish when I bought my cane with a credit card a few days later, because there was nothing wrong with me.)  I was urinating every 30 minutes, having trouble not falling, and my father was furious that I was keeping him up at night, even though he suffered with the same issues early in his diagnosis before treatment.  He told me that I couldn’t wear the rubber sandals that I used for house shoes to keep myself from falling in my socks anymore.  He told me to wear his slippers, which were too big and made falling almost ensured.  I didn’t expect my parents to react in a healthy manner, but this was brutal!

I found myself disowned and kicked out by my parents very shortly after and they told me that they didn’t care if I went to the local homeless shelter.  Facing this, along with them trying to take my aging dog (who they had abused in front of me) with them to Florida, I had to do something.  A “friend” allowed me to stay on her couch for a week.  She then gave me her spare room but asked for money.  I took out a cash advance on my credit card to give her $100.  In the one month that I was there, I saved her a few hundred dollars on snow days by watching her son in my weakened physical condition.  I paid for Chinese take out for them.  The diagnoses were pouring in and I was making chocolate milk in the middle of throwing up.  I applied for assistance at her town as well, but she said that $200 a month was not enough to cover electric, heat, and water.  Living on my own, I know this is ridiculous!  I only paid $23 a month in electric in my own apartment.  She kept reminding me that she was putting a roof over my head.  She received assistance from a local church, as well.  She then tried to pin 3 months of retro electric bills on me and told me that it was my fault, when I could clearly see that she had “Estimated” on her bills because she didn’t shovel the snow away from her meter.  When one of my procedures prevented me from picking up her son so that she could go to Happy Hour, she told me to be out in 3 days.  This is when complete strangers took me in.

The 6 months that I was with them, I was able to convalesce as much as I could.  I was able to look at the poor relationship choices and see that I was choosing to associate with disrespectful people.  I was able to see where the abuse stemmed from and how my choice of not dealing with the past led to inviting users into my life.  I didn’t respect myself enough to require respect from others.  The 6 months that I spent with these kind people made more of an impact than 7 years of “on and off” counseling.

I was able to see that I was pretty awesome, even with a disability.  Instead of my parents refusing to visit me after my heart surgery that was only 45 minutes away, this kind woman was with me at every appointment that was an hour away.  When I needed a Protection From Abuse order, I had an entourage of 3 people.  :-)   This love was more than I ever received in my entire life!  I finally knew love!

Different family members were able to help me to see that even though my negative choices brought me much pain, my positive choices impacted my healing.  I chose not to allow addictions to take over my life.  I chose to leave both abusive marriages no matter how foolish I felt for making the mistakes in the first place.  I chose to know better than my doctor when the medications weren’t helping, but harming me.  I could go on and on about the choices that I made to get out from under the negativity, but that doesn’t mean that the negativity didn’t take it’s toll.  I truly believe that stress is a partial cause of Lupus (just like it is for heart disease, or whatever someone is predisposed to).  I know that my food choices helped to cause Lupus as well.  The rest, I chalk up to genetics and environmental degradation.

EVERY ACTION IN YOUR LIFE REQUIRES A CHOICE!  Saying that a Mental Illness doesn’t give you a choice is an excuse to not do the hard work that it takes to pull yourself up out of bad situations.  I had to spend nearly all of my waking hours changing my thoughts and actions.  I was willing to do that for happiness.  While I believe that a small percentage of people with Mental Illness don’t know right from wrong, I believe the everyday sufferer does.  If you know right from wrong and choose wrong, you’re at fault, plain and simple.  How many times did I say, “I know that it’s bad for me, but I’m in pain, so I deserve this cigarette, drink, joint, etc.”  I can see (now that I’m on the other side) how much of a cop out that is.

I’ve had people tell me that it’s pure luck to overcome Depression and Anxiety.  They say that some people are lucky to overcome it, others aren’t.  This is ridiculous!  Luck has NOTHING to do with it!

I’ve had people tell me that they don’t want to be in their situation.  If you don’t want something, you CHANGE it!  Their excuse is that Depression “won’t let them”.  If you give Depression that much power over your choices, that’s exactly the result that you’ll get.

Now, there are other aspects of Mental Illness that are more severe.  I didn’t have Depression all of my life.  It’s probably the difference between a 20 year smoker, and a 1 year smoker, quitting smoking.  The process of change will be THAT much harder!

There are more severe diseases as well.  However, I know someone personally that has completely healed from Schizophrenia.  He actually told me:  “Don’t refer to Lupus, as “My Lupus.”  He said that disconnecting from any illness will help in battling it.  It’s true.  This one change in thought pattern made a huge difference for me.  This was hard to change for sure!  I still slip up sometimes, but for the most part I’ve rid myself of owning any illness.  If I own an illness, it will OWN ME!

My message to others is that there’s hope out there.  My request is that you choose to keep the option for healing someday open.  Instead of saying that you can’t, say “Maybe someday, I CAN heal from this.”  These little changes are LIFE ALTERING!

I’ve had people tell me that this isn’t what a person suffering with Mental Illness wants to hear.  I was even recently called a drill sergeant by someone telling me that my words can hurt people.  Someone might not want to hear the truth, but it could save them heartache, pain, and suicide if they do the work to apply what I’ve done.

Here’s the type of advice that I give others:  “Respect yourself enough to realize that no other human being deserves more than you do!”  “Stop telling yourself that you’ll try!  Tell yourself that YOU WILL!”  I know that we might not believe it at first and it’s awkward, but it will change your life.  When someone tells you that you have changed their life by giving them tools to manage their thoughts better, you can’t help but want to do a cheesy, happy dance.  ;-)

Remember this:  I CAN’T = I WON’T.

Why give yourself that kind of prediction?

I’ve been told that my advice lacks compassion and love.  My message of hope comes from a place of DEEP compassion and love.

There are other things within our control that we can change to affect our overall health and mental health.  Personally, I believe that doctors throw around the term “Chemical Imbalance” to scare you into thinking there’s no way out, and then the drug company has a customer for life.  (I’m not suggesting to stop taking medication.)  If there’s a “Chemical Imbalance” in our body, could it be due to Aspartame, Fluoride, etc.  How much Formaldehyde in Febreeze do we need to inhale before the chemicals cause a wide variety of health problems.  Can we function well neurologically this way?  We can (and should) remove these chemicals, and many more, from our lives.

I’ve always wondered how physicians can claim a chemical imbalance without a test, though?  That’s because it’s not scientifically proven, only a hypothesis.  The encyclopedia says this:

Chemical imbalance is one hypothesis about the cause of mental illness.  Other causes that are debated include psychological and social causes.  One criticism while not outright rejecting the theory is that it has been scientifically proven that things other than drugs can influence brain chemistry.  Exercise releases endorphins.  Even our own thoughts change our brain chemistry.  These natural methods of changing brain chemicals are claimed by critics to be preferable to drugs since drugs have side effects. Furthermore, some psychiatric drugs might alter the mind by disabling moods and emotions not just in circumstances where they’re a problem but in circumstances where they’re appropriate or even beneficial as well while natural ways to change brain chemistry can be used as needed.”

I’ll write more on this subject in the future.  But, think about it…  If I’m stressed and turn to alcohol, cigarettes, or marijuana, they’ll change the chemical balance in my brain, temporarily raising Dopamine or other things.  If we’re overloaded with stress and take a drug that changes the amount of our “feel good” chemicals, we’re masking the cause of the original symptoms.  We’re then distracted from dealing with the root cause because in some ways we feel better, but as the encyclopedia explains, we’re left with whatever downside there is to those drugs.  (Muscle twitching, personality changes, the feeling of dependency, or whatever scary side effect that they rush through at the end of their money hungry add – including death.)  Personally, I think that the brain can only deal with a certain amount of stress, and if we’re put into overload because of life experiences, our body’s ability to handle it will be exceeded.  We can alter how we feel with street drugs, or prescriptions, to increase our Dopamine or Serotonin respectively (our natural “feel good” chemicals), but either way we’re just masking, and not dealing with, the root of the problem.

If we can find ways to boost endorphins, while healing stressful memories and creating better approaches to new stressors, we can naturally get our body off of “OVERLOAD”, and into a place of peace.  We also need to embrace the fact that we can protect ourselves from preventable new stressors.  Negative stress will continue to produce Cortisol, which leads to disease, obesity, and a whole slew of problems.  We need to find a good balance in our lives.  Laughter releases endorphins, pet bonding releases endorphins, getting out in nature releases endorphins, and experiencing love releases endorphins.  Try to find ways to bring these experiences into your life.  You’re in control of your endorphin levels by the experiences that you choose to take part in, or walk away from.  We’ll always have stress in our lives.  Even good stress is hard on my medical conditions and requires periods of bed rest after fun activities.  On the flip side, there are unavoidable evils, but if you have control over keeping happy brain chemicals floating around, why not do it?  Why avoid these things, take a pill to synthetically mask the issue, but still carry around all your underlying issues?  Who wants to carry that baggage with you everywhere you go?  Now don’t go chuck your pills tomorrow saying that Tamara told you to.  I’m not saying that.  Just research both sides of the issue and find ways to make your life as comfortable as it can be.

Keep a symptom journal.  This really helps.  I’ll post a sample at some point of the one that I created and use daily that has helped me tremendously to see how weather, water intake, food choices, and exertion all affect the Autoimmune Illnesses that I’m fighting.

We also need to remember that most physician’s main goal is to get you on a prescription, or give you a vaccine.  (I’m not telling you to stop your medications or vaccines, let’s be clear on that.  But it’s important to research both sides of every issue and not believe everything that we’re fed.)  Thankfully, the doctor that one of my friends has had for years originally told him that he should only take a prescription for his Mental Illnesses temporarily until he deals with the root cause of his issues.  She even told him to read “Wheat Belly” and how Gluten is not good for us.  An M.D. that has done research?  A wonderful thing, indeed!  :-)

I want to talk about suicide for a minute:

  • Suicide requires an action
  • An action requires a choice
  • A choice requires reacting to a thought
  • A thought can be revised
  • A revised thought brings about a better emotional state

There’s too much involved to say that one doesn’t have control over suicide.  Certainly, like I said before, there are the cases where you just don’t know right from wrong, but how often is that?

Our thoughts are key in this.  A lot of thoughts can go by completely unnoticed and wreck havoc on us, if we aren’t self aware.  If you have a thought come into your head, evaluate it to see if it’s “Trash” or “Keep”, instead of hearing a self destructive thought and subconsciously choosing to embrace it.  “You’re a loser.  There you go again.”  That’s GARBAGE and needs to be handled in just that manner!  Throw it away!  We have to really uncover that subconscious and see what kind of job it’s doing.   Is it on the same defective autopilot that was created when you were mistreated as a helpless child?  You believed what they told you back then, do you realize that you’re choosing to embrace the same unkind words years later?

Say, “No, you’re WRONG!”  Learn to be the person to stick up for yourself!  THAT’S how we love ourselves.  :-)   Would you like to have hope, peace and joy?  This is the way to do it.

I used to have crippling Anxiety and want to run away from situations.  Sometimes, I did just that and looked foolish (probably like “Mr. Bean” running!).  ;-)   The PTSD that I suffered with had SO many triggers that are now gone.  If you read Inner Dialogue and Anger is Like Acid, they will explain things further.

Some of you might think that healing from major Mental Illness is impossible.  My mind was changed when my friend with Schizophrenia told me about his complete deliverance from it.  The freedom of conquering something so huge and knowing that it’s gone must be incredible.  I began to hear more and more people talk about how they know that they WON the battle.  I know that I celebrate the complete peace that I have knowing that I’ll never have to fight to keep my mind from going to such a dark, worrisome place again!  VICTORY!

When someone explained to me that disease is dis-ease, I realized that finding the root cause of the lack of ease in our lives is the starting point.  Whether that’s an unhealthy diet or an unhealthy way of thinking, those need to be completely renovated.  There are diseases that will kill you because they have destroyed your body.  Personally, I believe that Mental Illness is a dis-ease of our emotional health, but there is Neurological Illness, too.  I think they all get lumped into Mental Illness with the stigma that they can’t be overcome.  Our brains can definitely be neurologically defective beyond repair, without a miracle.  Our emotional health is separate and has many factors that have made it the way that it is.  Saying that we can’t change the state of our emotional health, I believe, is false.  If a “disease” that we have been diagnosed with has a possibility of regaining health, there’s much more hope of eradication.  That put it into perspective for me.

Because of my Faith, I believe that there are evil forces in this world.  1 Peter 5:8 says that the “adversary, the devil prowls around, looking for someone to devour” .  That battle will never change.  I learned to differentiate between my own negative thinking and the battle of “good and evil” that I believe we all face.  I’ve learned to see the difference between the devil’s urgings and my own thought process:

Devil: You can’t do that.
Me: Yes, I can! With, my God’s help.

Devil: You’re worthless.
Me: No! My Creator sees my value, and so do I.

If my responses were, “Right, I can’t do that.” or “Yeah, I AM worthless.”, those are my own thoughts that need adjusting.

I think that we tend to own too much of evil’s game.  It’s how we react to evil’s game that matters.  We have to get those reactions healthy.  We have to know that those urgings will never stop as long as we’re alive and there’s a soul at stake.  But, we have a loving God that will give us the strength that we need for the battle.  Choosing to follow our Heavenly Father was the best choice of my life.  I have an ally now, whose power is limitless.  A healthy mind is one that’s free from our own negative beliefs that cause us to get stuck in feelings of hopelessness and the inability to see a way out.  Our mind will be even healthier if we choose not to embrace the devil’s urgings as our own thoughts.  If we think those urgings are our own thoughts, we’re degrading ourselves for no reason.  My beliefs might not work for everyone, but they sure changed my life.

I’m cheering you on to take the first steps in this:

  • The first one is to treat yourself with respect by talking to yourself kindly.  (This includes Inner Dialogue and Verbal Affirmations.)
  • The second one is to allow yourself room for mistakes.
  • The third one is to take time to ask yourself if what you’re feeling is going to help or hurt you in your recovery.

RECOVERY needs to be your primary focus!  Envision making a difference in your life!  :-)

Anger is Like Acid

Anger is Like AcidWhether you hold it in and let it erode your insides, or throw it in someone’s face, anger is like acid.  It burns, and can destroy, everything that it comes into contact with.  What you’re left with is a painful recovery.

Not only figuratively, but literally, anger is like acid.  Did you know that stress, resulting from anger, actually causes an acidic environment in your body?  Did you know that disease thrives in an acidic environment?  There are numerous reasons to stop being angry.

We all know that feeling when it starts to bubble up inside of us.  There are many triggers.  For me, it was when people acted disrespectfully, when people would lie to me, or when I felt that justice was missing.

Let’s look at Road Rage.  I had to learn that it wasn’t each individual driving experience that I was angry about.  It was angry about the feeling of being taken advantage of, along with the issue of people not following rules and therefore jeopardizing my safety.  When I took this personalization out of driving, I was able to detach from people’s lack of common sense and do everything in my power to make driving a pleasant experience.  Planning my routes to avoid congested areas or dangerous intersections might add a few minutes to my driving, but a better experience is worth it.  A lot of times, all it takes is a little tweaking and we can find ways to avoid stressful situations that could provoke anger.

I started to look at all the scenarios that used to make me angry.  I realized that people lie, and are disrespectful, because of something deep inside of them that doesn’t allow them to function properly.  I was then able to neutralize my own “acid” (anger) and actually see them in a different light.  I now look at them and think, “If only they could experience the peace and joy that I have.  All of that toxicity could be gone!  They’d be free!”

Anger is linked to a feeling of injustice.  One thing that changed my life was realizing that even if the courts are completely corrupt, our God sees all.  It’s not my responsibility to make sure that others get their punishment.  It’s my responsibility to make sure that I’m acting in a way that would make my God proud of me, and He will deal with everyone else.

A lot of the good advice we hear floating around is found in the Bible:

  • “do not let the sun go down on your anger” – Ephesians 4:26 (NRSV)
  • “let everyone be quick to listen, slow to speak, slow to anger” – James 1:19 (NRSV)
  • “One who is quick-tempered acts foolishly” – Proverbs 14:17 (NRSV)
  • “A soft answer turns away wrath, but a harsh word stirs up anger.” – Proverbs 15:1 (NRSV)

We have a choice, every moment.  Would you rather be sucked into other people’s anger?  Or, would you rather choose to respond gently and diffuse situations?

Let’s look at it this way.  Do you want to allow toxicity from outside of you to take up residence inside of you?  How much of other people’s garbage do you want to own?  They’re throwing it out there because they have no idea what to do with it, how to handle it, and they’re hoping for someone to join in with them to validate their anger so that they can just keep on acting foolish!

Now, I’m not saying that we’ll be void of frustrations, as that’s part of everyday life.  It’s how we deal with those frustrations that matter.  Do we let our feeling of frustration turn to anger?  Or, do we quickly turn the focus back to all the beautiful things in our lives?

I have some frustration releasing “Go To” phrases that really work for me:

  • “Really?”
  • “Who does that?”
  • “Seriously?  WOW!”

These are not said to the offender, and are usually followed by a laugh, and then I’m over it.  While these are good for random encounters with people who obviously left a portion of their brain at home, dealing with those who are in our lives, day in and day out, requires a different approach.

When my hunny and I find ourselves in a conversation that’s becoming frustrating, one of us will say, “We aren’t getting anywhere and we need to stop and talk about this later.”  Usually, we’ll go and do something separately and think, or pray, and then come back with a clearer head.  This approach works for home, work, and friendships.

There are a lot of hot-headed people out there.  The way that I see cashiers and others being treated is atrocious!  Being angry is definitely choosing to put yourself before everyone else around you.  For some, it’s easier for them to hold onto a faulty coping mechanism for dear life than it is to look at the root cause of their feelings.  Kindness is contagious though, so it’s up to us to put ourselves aside and be kind to those who were just spiteful to us.  It’s one of the hardest things to do, but it’s the RIGHT thing to do!  It’ll make your speck on the map a nicer place to live.  :-)

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

Inner Dialogue

Inner Dialogue 3Have you ever stopped to listen to the things that you tell yourself?  Even subtle, negative things that you say to yourself can make quite an impact!

If you find yourself making the same mistake over and over again, what do you hear in your head?

“There you go again!” or “You’ll get the hang of it.”

These two statements produce completely different conditions in your body.  The first fills you up with stress and doubt.  The second gives you hope.

Our negative thoughts in our heads are very, very old recordings of negative comments from others that we have embraced.  These recordings need to be erased and we need to start over with new statements.  Even if we don’t believe the new statements at first, TRUST ME, they will eventually stick.

Think about it, what would you say to a close friend who has found herself/himself hurt by someone’s actions?

“You should’ve known better than to trust them.  Didn’t you see that coming?  What were you thinking?”  or  “I know that you’re hurt.  It’ll take some time to get over it, but you’ll be okay.  Let’s figure out how to prevent that from happening again.”

We wouldn’t find ourselves talking to our friends the way that we talk to ourselves.  Or, we wouldn’t have any friends!  So, why do we give ourselves such a hard time?

If your best friend needed a shoulder to cry on, you’d certainly give them one, right?  You wouldn’t tell them five minutes after something happened, “Stop being such a cry baby, and just get over it already.”  So, why not allow yourself to mourn and grieve, too?  Emotional hurts need healing time, just like physical wounds do.

We’ve all heard, “Be your own best friend.”  For a long time, I didn’t know what that meant.  I took myself out to dinner…nothing.  I bought myself something that I’d been eying for a while…nothing.  Just like in friendships, it isn’t what you DO for someone, it’s how you make them FEEL.  We want friends that encourage us, respect us, and treat us kindly.  Ah Ha!  That’s what I was missing.  In many ways, I wasn’t doing ANY of those things for myself.  No wonder why I felt poorly about myself in certain ways.

My ex-husbands both told me that no one would ever want me with my health problems and that I should be glad that they put up with me.  They both called me a Medical Misfit.  (The second, liking the first’s put down so much that he used it against me later.)  I actually believed this garbage for a while.  I really thought that I belonged on the “Island of Misfit Toys” in Rudolph.  :-(   After removing myself from those situations, and after being disowned by my parents during early diagnosis, I had time to self-reflect and see just how wonderful I was without their contamination.  I realized that I was worthwhile, no matter what I could or couldn’t do.

In the past, I had been good at giving myself credit in my career and at the gym, but I was awful at accepting my shortcomings.  This is because making mistakes as a child resulted in being called a “Stupid Idiot” and being beaten profusely.  When I began telling myself that it was okay to miss the mark sometimes, a huge weight was lifted off of my shoulders.  This only happened after becoming disabled from many illnesses, including Lupus.  After my career ended, and my aspirations of becoming an “American Gladiator” named “Glacier” were gone (Yes, the cheesy 90′s show!), I was left with having to look at who I was without these things.

I was able to see that staying in unhealthy relationships or friendships was NOT dedication, it was actually a way that I was disrespecting myself.  I was also able to see that if I did allow my house to get a little cluttered, I wasn’t going to turn into some Master Hoarder.  ;-)   Lastly, I was able to see that because I was never treated with patience, that I had a hard time being patient with myself and others.  This is something that I have gotten better at, but I’m still working very hard on it.

Another thing that I forced myself to do was to look in the mirror and stop nitpicking.  I had to train myself to look at the things that I liked about myself.  Instead of looking and saying, “Wow, your hair is getting really thin.”, I say, “Good job getting your teeth nice and white again after quitting smoking!”  Instead of focusing on the Lupus scars on my back (that a “friend” in a dressing room said were gross a few years ago), I choose to admire the fact that I have pretty finger nails.  I don’t want my inner dialogue to be focused on put downs.  The sad thing is that I didn’t even realize how much that I was putting myself down.

Positive self talk has helped me immensely with being disabled.  What others might see as something miniscule, I truly celebrate.  My statements now look like the latter of these two:

“You ONLY managed to clean the toilet today!  Woopty Doo!”  or  “Great job knocking that off of your ‘To Do’ list!”  

The way that we phrase things makes a huge difference!  Imagine what kind of frame of mind you would be in if you looked in the mirror and told yourself that you were basically a useless, forgetful fool, and you didn’t see any hope for improvement.  Would you say that to a friend?  Then, DON’T say it to yourself!  PLEASE!

I had always thought that patting myself on the back was being prideful.  Seeing your value is not being prideful.  Seeing your value can actually prevent, or reverse, depression.  If negative thoughts are fuel for depression, positive thoughts are depression’s fire extinguisher.

Be kind to yourself.  Forgive yourself.  Be patient with your shortcomings.  And, most importantly, celebrate your strengths.  For instance, you can be great with kids, you can be a knitting genius, you can make people laugh easily, etc.  Notice what you’re good at and know that it’s a gift from above.  Someone once told me, “If you see yourself as faulty, you’re calling God’s work faulty.  You’re basically disrespecting God because He created you the way you are for a reason.  See yourself the way He created you.”  GREAT advice!

Putting this into practice will be awkward at first, but it’s a must!  Really hear the thoughts in your head and categorize them:  TRASH or KEEP!  Start truly being gentle with yourself and see what a difference it makes.  :-)

You can read about how I healed from Situational Depression and Anxiety here:

Depression & Anxiety





Heal Depression & Anxiety

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

“Looking Sick”

Understanding DisabilityA lot of people think that being disabled is a choice.  They say, “Well, I have ‘this illness’ or ‘that illness’ and I just CHOOSE to keep working.”, somehow insinuating that those with the same, or other illnesses, should just “Man Up!” and do the same.

If there’s ONE thing to learn and accept about disability, it’s that disability is what happens when you have NO choices left.  Your inabilities are what they are, and no matter how much willpower you have, it doesn’t make the physical roadblocks disappear.

I’ve even heard others say, “I can’t be disabled, I have kids.”  I’m sorry to be the one to tell you, but having children doesn’t fend off disability either.  Most families of a person who is disabled are completely changed by the event.  Children and spouses have to take on responsibilities that they didn’t have before.

I know that in my case, I kept pushing and pushing until I had nothing left in me.  I was a “Step Mom” to 4 beautiful children, ages 3-10.  I tried my hardest to keep up with the family, but when I couldn’t do certain tasks, their father ended the relationship.  Some people are equipped to handle what disability brings into their lives and others aren’t.  While I miss and love those precious kids terribly, the situation was just not meant to be.

How many times have you heard, “Well, my sister’s, housekeeper’s, hairdresser has (insert illness of choice here) and she runs marathons.”?  UGH!  I’m not sure what provokes them to compare one person to another, but the bottom line is that everyone’s journey through fighting an illness is different.

What about the famous, “Well, you don’t LOOK sick.”  What is “looking sick” anyway?  I’ve been to plenty of funerals where the person who had passed away didn’t “look sick” in their casket.

What people need to grasp is that there are stages to illnesses.  Like in my case, Lupus (1 out of 47 illnesses that I have) can range from mild to life threatening.  Once it has moved into your organs and eats away at them, like it has with me, life becomes extremely difficult.

The one thing that a disabled person wants more than anything is to win the fight against their illness.  Insensitive people, who are blessed with the ability to work, say to someone who is fighting for their life, “I’d love to just be able to stay in bed all day.”  A disabled person wants anything BUT that.  Let me reiterate the fact that you are NOT disabled until you find yourself unwillingly in this position more often than not!  Do people really think that not being able to reach your original goals is something that you consciously chose to do?  We ARE talking about those who assume, rather than those who make an effort to learn about illnesses though.

I’ve had people tell me that I wouldn’t be sick if I just stopped thinking about it.  Really?  I’m a firm believer in the power of positive thinking and I employ that in my life today, and always have.  It’s what makes my life so enjoyable.  These same people believe that you bring on death by your thoughts.  So, that’s what happens when a newborn dies?  That baby just didn’t think positively?  GARBAGE!

While I believe in being hopeful for change, I also believe that it’s necessary to accept the things that you can’t change.  I’d rather not NEED to use an automatic door opener, but I’m glad that the tool is there.  Otherwise, my ribs would constantly be dislocated from the pressure of opening a heavy door.  This isn’t because of my thought process, this is because Lupus eats away at my connective tissue, which then doesn’t allow my joints and bones to stay where they should.  Why shouldn’t I do whatever I have to do to avoid pain and discomfort?

With all of this being said, I still research ways to reverse illness and I put my all into the changes.  If anyone could be able to grow back cartilage, that’s me!  ;-)

So, next time you see someone that “looks healthy”, think twice before judging them.  If someone battled excruciating pain, nausea, and dizziness to get through a shower that day, do you think that they need your judgement and disbelief on top of their suffering?

Just because someone makes a disease look good…  Just because you can’t fathom life being THAT hard for someone…  That doesn’t give you the right to give them a hard time!

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

Pacing Ourselves

Pacing Ourselves
Pacing Ourselves:  I’m getting better with this concept and I’ve found ways to save energy that certainly make my life easier.

I’ve been almost completely successful at scheduling my doctor’s appointments and errands with rest days in between.  Sometimes, I schedule too much in one week.  But, I have to think rationally because I could be setting myself up for a lot of pain if I overdo it.  Sometimes, I know full well what the backlash will be and I do whatever it is anyway because I have things that I want to experience.  Even the times that I’ve been in bed for three days afterwards, I still have not regretted anything I did to get me there.

I used to institute “Shut Out the World Fridays”.  It sounds awesome already, doesn’t it?  ;-)   I wouldn’t answer the phone, open any mail, make any appointments, or do any errands.  This was great while I did it because it was much needed.  I’d like to get back to this, but sometimes you have to take an appointment whenever it’s available.

Right now, my disability is to a point where I need In-Home help.  This has been a HUGE blessing and what she gets done in 2 hours would take me probably 6-8, and then I would need ridiculous amounts of bed rest.  Sometimes, you have to admit that there are things that you can’t do and look into resources that may be available to you.  Even though there are people out there that may look down on you for this…well, that’s because they can’t get out of their own stress long enough to be compassionate towards someone else.

I’ve come to realize where my weaknesses are.  I break “big jobs” down into small sections.  Sometimes, I take a couple of hours to make my bed in stages.  I’ll do a task that can be done seated for a while and when I can get up, I work on part of the bed, and then find another seated project.  I follow this same pattern with many other tasks.  I’ve become comfortable with the fact that it doesn’t matter how long a task takes to complete.

One of the biggest lessons that I’ve learned is that if others are let down by my limitations, that is not something that I’ll take responsibility for.  I don’t make any concrete plans.  I’ve chosen to replace the concept of plans with intentions.  There are a lot of things that I intend to do, but if I don’t make it, there’s always another time.  Having people in your life that can go with the flow is crucial to this working.

My life is no longer run by other people’s schedules.  It’s run by what my body can accomplish.  If I need a 3 hour nap in the middle of the day, I don’t feel guilty about that anymore.

It was a difficult process to accept this “New Me”.  Not only was I no longer able to work out 8 hours a week (after putting 50 hours in at the office), but I had to ask others to carry heavy things for me (heavy being more than 10 pounds).  I used to row 90 pounds at the gym and be the “guy” on the other end of the furniture during a move, and then be able to unpack an entire house in 3 days.  You definitely go through an identity crisis when disability hits you.  You have to find yourself amongst the rubble and see where your new talents lie.

As I say that, I sit here with my laptop, in my recliner, after not being able to muster up the energy to shower today.  But, look at all the blessings that my poetry and writings have given me and others.  Even though I can’t hold down a job, I can certainly see my value.  I can’t predetermine my bad days and I can’t function more than a few hours at a time on my good days, but I certainly make the most of it.

I love the fact that if Lupus has different plans for me other than my desire to sleep, I can roll over, grab my laptop, and give others hope.  :-)

It takes a lot of careful planning, rationing of precious energy, and the ability to know when to stop to keep yourself from crashing too hard.  Learning to stop BEFORE you think that you need to is a great idea.  It leaves a little reserve, and you’re not starting your next day, or next task, completely depleted.  If you’re excessively stubborn, like me, this is a tricky one.  ;-)   I’ve had a lot of, “I wish that I didn’t do that!” moments, as far as pushing myself around the house.  Making homemade applesauce, reorganizing your entire filing system, and grooming the dog should probably be done on different days.  (I haven’t done this in a WHILE!)  I’d push myself through the pain to the point of nausea because I didn’t want to admit that I couldn’t do something.  I gave this ridiculousness up, and my life is easier for it.

When people see those with Chronic Illness out and about, it is because they have paced themselves.  People don’t see every ounce of rest that went into it, or every ounce of pain that will be endured afterwards.  Every little thing that a disabled person does takes more strength than people even realize.  Giving illness fighters credit for their accomplishments is one way to show them that you are proud of their determination.

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

Having a Support System


Having a solid support system is crucial when you are fighting a chronic illness.  It’s counterproductive to have people around who refuse to understand your battle.

It’s up to us to recognize situations that jeopardize our peace of mind.  There’s no way that you can focus on living the best life that you can live, despite your limitations, if those around you are telling you the opposite of what you need to hear.

I’m truly blessed with a wonderful husband who applauds me for being so strong and positive.  Having someone see that you are, in fact, a special kind of super hero is a must!  High-Fives don’t hurt either.  :-)

It hasn’t always been that way for me though.  Besides my abusive marriages, my relationships ranged from a guy who came in and woke me up every 15 minutes to ask if I was done napping yet (he thought that I was lazy and depressed), to a guy that literally thought that I was going to break.  I wondered if he was going to try to brush my teeth for me.  ;-)

While our symptoms shouldn’t be questioned, we shouldn’t be fawned over either!  There should be a delicate balance between your loved ones stepping back and watching you reach your goals, and waiting to be asked for help or offering help when appropriate.  Sometimes, those close to me know that they need to offer help before I hurt myself because I am slightly stubborn.  Well, “slightly” may be an understatement.  When I’ve tried to be Super Woman in the past, I have re-dislocated ribs and all kinds of fun things, so their help is appreciated.

My friendships, in the past, have had their issues.  This is because the key ingredient of respect was missing.  I had one friend who was all upset that I canceled plans with her on a Saturday, but took an impromptu trip into the mountains the next day.  A good friend would have said, “Way to go!  I’m glad that you were able to get out and enjoy yourself.”  She said that she understood that I had good days and bad days, but obviously this isn’t true because she even accused me of lying about the trip being spontaneous.  :-(   Those that experience chronic illness know that spontaneity is where it’s at in order to enjoy life!

In the past, I spent too much time trying to explain myself to others who had no desire to “get it”.  Those people will probably never change that part of their personality that lacks compassion.  Now, I like to take the time to initially educate others.  If they are responsive, then I know that they are someone to connect with further.  Others who tell you that you’re making yourself sick by doing “this” or “that” are not worth your precious energy.

Living life with debilitating illnesses has shown me people’s true character.  I actually call it my “Character Radar”.  You’ll see who’s who very easily when you have limitations.  Anyone who thinks that you’d choose a life of pain and disability is actually more handicapped than you could ever be.  They’re missing a huge chunk of their soul.

No one deserves to be judged, or ridiculed.  Our responsibility lies in being able to recognize what’s healthy and take appropriate action when situations are unacceptable.  I’ve had to disconnect myself from many people that simply chose not to listen to me.  When you realize that it’s their deficiency, and not yours, a sense of peace comes over you.  As you surround yourself with more compassionate people, those who choose to make negative assumptions stick out like a sore thumb.

While I value my online friends and support groups immensely, I believe having people physically there for you is important, too.  How do you find these people, you ask?  I found some great things pinned up at my local library that led me to meet some incredible people.  Also, I started talking to people on a very deep and meaningful level, instead of just the superficial talk about the weather.  This brought a lot of joy into my life.  A conversation with a new neighbor can turn into a beautiful friendship.  :-)

When we look at people the way our God wants us to see them:  A person of value, that deserves respect and gentleness, life changes.  Imagine how much easier life would be if we would show kindness and understanding to people as they work through their trials?  That’s what this world needs more of.

If you’d like to know more about my story click on:  ABOUT or MY HEALING STORY.

Dry Eye Relief – All Natural

Dry Eyes9

Castor Oil, for Dry Eyes?  Really?  I thought that was to help you…well…use the bathroom?”  ;-)

I thought the same thing the first time that I heard it.  It even says on the bottle “Avoid contact with eyes.”  When I get conflicting information, I go into research mode.  I found these websites, amongst many others:

I had a friend tell me that she used it on herself, and in her dog’s eyes because of his chronic eye irritation.  Hmmmmm, with all of this back up, I just HAD to try it.

When I was first diagnosed with Sjogren’s Syndrome, my eyes were so dry that blinking had caused terrible lacerations all over both eyes.  I would wake up in the morning with them completely stuck together.  I was given Restasis, Refresh Eye Drops (Preservative Free), Refresh Ointment, and Ciloxan (an antibiotic to treat the infected lacerations on my eyes).  The Restasis didn’t help at all.  After starting the drops and ointment, my need for drops and ointment in between doses seemed to increase.  Nothing was helping.  I figured this Castor Oil thing was worth a shot.  :-)

I had read that it makes your eyes blurry for a bit, so I tried it before bed.  Yes, they do get blurry, so keep this in mind.  I used it on my elderly dog who had recurring eye issues and she looked at me like “Mama, what relief!”

The morning after this science experiment, I could open my eyes!  It was amazing!

I have less of a need for it now, as I have changed to an Anti-Inflammatory diet.  Did you know that every food that you eat has an Inflammation Factor?  This is very important for Autoimmune Fighters.  I urge you to read my article on it here:  Inflammation Factor.

Here is the FANTASTIC part about the whole process:  I went back to my Ophthalmologist one year later and he was shocked!  I told him that I was using Castor Oil.  He said, “Well, your lacerations are gone!  Keep up whatever you are doing!”  I loved hearing that, especially because he was involved in the introduction of Restasis.

Try it, and let me know how it helps you.  It’s cheap in comparison to those ridiculously expensive drops and goo.  All you have to do is pick up a little glass bottle, with dropper, from the Natural Food Store.  I recommend this so that you are not constantly opening the big bottle and possibly introducing contamination.  I have found that one drop is plenty for each eye.

As with all oils, it is best to buy Cold Pressed because they haven’t gone through a heating process that causes oxidation.

This helps with dryness from medications and any other cause.  Pass this on to your Chronic Dry Eye friends.

(As always, check with your doctor for any personal restrictions.)

Misdiagnosis is Too Common


I’m appalled by the fact that it takes SEVERAL years to get a proper diagnosis from our health “professionals”.

I kept going back to my doctor for 8 years with all the same symptoms that I have now, but not as severe.  They were getting worse and making me miss more and more work.  Her conclusion each time: “You’re just stressed.  Here’s: Prozac, Wellbutrin, Zoloft, Paxil…” And the list goes on with whatever drug was popular at the time.  (Not that these medications aren’t necessary in other situations though.)

Never once did she test me for all the diseases that I have.  It was just depression, according to her.  I couldn’t convince her that despite all of these symptoms, I was NOT feeling hopeless, or having a lack of interest in life, or experiencing any of the other symptoms of depression.  However, apparently when you cry because you had to resign from your career, you are automatically mentally ill.  UGH!

You begin to believe that these symptoms ARE all in your head.  Then, you wonder how you made yourself this way.  It’s a terrible feeling to have.  Physical illnesses should be ruled out before coming to these erroneous conclusions.  I’ve had thoughts creep in like, “Would I have severe Osteoporosis at 36 years young if my body wasn’t deteriorating this whole time?”  But, I can’t focus on the past.

So, I trusted that she knew best and left with Prozac and Minocycline for my skin lesions (those lesions didn’t tell her anything?).  I then proceeded to not be able to sleep…for 3 WEEKS!  Then, they added Trazedone, after which I went into Serotonin Syndrome and had a severe allergic reaction.  Over the years, as she’d push these drugs on me, I’d try them and then explain to her that they made me feel severely agitated, confused, shaky, and didn’t alleviate any of my symptoms.  Hmmmm, I wonder why?  This wasn’t what my body needed!

I started to have tremors in my legs and think things that weren’t logical.  I felt so drugged and not myself.  I desperately wanted my mind back, which I knew that these drugs were taking away.  It was bad enough that my body was failing, I didn’t need this on top of it!  No one would listen to me and it was such a frustrating and scary time.

I ended up spending 2 1/2 days in the ER for the Serotonin Syndrome and allergic reaction.  When I recovered, I went to my doctor with a list of everything we had ever talked about that she had disregarded.  I demanded to see the Rheumatologist that had diagnosed my father with Lupus a year and a half before.  Finally, she listened.

Then, the diagnoses started pouring in.  It was validating, but frightening at the same time.  Those closest to me still didn’t believe that I was sick.  But, I didn’t need their approval.  I had blood work, scopes, ultrasounds, and numerous other tests that told me that I did, in fact, know my body.

I dealt with all of this alone because my parents had kicked me out before I saw the Rheumatologist.  This is explained more in MY HEALING STORY.  Before kicking me out, my mother called and emailed all of my “friends” and boyfriend and told them that I was mentally ill and to leave me alone while I got treatment.  To this day, I don’t know WHAT she was thinking.  It was just continued abusive behavior that began in childhood.  I explain more on that abuse and neglect here:  Life Saving Surgery.

I can’t understand why getting a diagnosis was such a battle.  The tests are simple!  Unfortunately, greed and corruption has infiltrated every aspect of life, including “healthcare”.  Some doctors are more interested in herding you in and out like cattle than helping you to manage your health.

Now, I have a stronger team of doctors. I pray that others don’t have to go through all the years of disbelief, and the confusion that comes along with it.  If you know something is wrong, ADVOCATE for yourself!  You might not be in my condition, with destroyed intestines and bladder, and the Osteoporosis of an 80 year old.  It’s really sad when they think that you are a “Drug Seeker” or “Hypochondriac”.  If you can, bring someone with you to your appointment that knows you and can help you stand up to false accusations of laziness.  It’s also helpful if you can show pictures of who you were before illness took the helm.  Lastly, don’t worry about being labeled a “Doctor Hopper”.  Find a PCP and specialists that you can talk to, and who listen to you patiently and compassionately.  They ARE out there!

Chapped Lip Relief – All Natural

Lip Balm3

Are you looking for something AWESOME to use to combat chapped lips?  Having Sjogren’s Syndrome has led me to find the best ways to remoisturize, as it is a disease that destroys all moisture producing glands and leaves you feeling like you’ve walked in a desert for a year!  Those that suffer from dryness due to medications, or from living in a dry climate, will benefit from this, too!

The back of the container explains that:

“Jojoba is very similar to the sebum produced by our own skin, making it an excellent choice for facial and body oils, as well as hair and scalp treatments.”

SUPER BONUS:  It smells like chocolate!

SIDE NOTE:  I don’t eat ice cream anymore because dairy and sugar increase Inflammation.  Don’t feel sad for me…it’s okay.

The two ingredients: Cocoa Butter & Jojoba Oil are all natural and not harmful, in comparison to the following in other lip balms:

  • Yellow no. 5 (independent studies show it causes cancer)
  • Titanium Dioxide (independent studies show it causes cancer)
  • Oxybenzone (results in an increased production of free radicals under illumination)
  • Phenol (Phenol and its vapors are corrosive to the eyes, the skin, and the respiratory tract. Repeated or prolonged skin contact with phenol may cause dermatitis)

REALLY…on that last one?  No words…  :-(

We truly need to research EVERY ingredient in our food, shampoo, cleaners, make-up, etc.  We could be making things worse for ourselves, not better.

Back to how incredible this stuff is…  I was using a Q-Tip each time to put it on my lips.  Then I thought, “What if I pick up some of those nifty, empty lib balm containers at the Natural Food Store and put it in there?”  It could see the light bulb over my head in the bathroom mirror.  ;-)

I went and bought a pack of 8 containers for around $2.00.  Then, I took a butter knife and scraped it out in chunks and jammed it into the lip balm container (pretty much the same way you try to get the most ice cream packed into a cone).  This makes it nice and solid.

One thing that I have noticed is that it warms on contact (and in high heat), so DON’T carry it in your pocket and DON’T leave it in a hot car.  There WILL be a mess!  I brought it with me on a hot day once and put it in a sandwich bag in my purse and there was no leakage.  I haven’t tested this theory enough yet to say “Go ahead and throw it in your purse.”

It works wonderfully and a lot goes a LONG way.  (I have gone through less than 1/3 of a jar in over a year!)  It’s also great for dry hands.  I put in on my hands and put those cotton gloves on overnight.  My cuticles are happy in the morning and my hands look younger.

This is great to use on your feet, too.  However, I find myself using Coconut Oil more often for many reasons, including its natural antibacterial properties.  I’m going to write a post in depth about the healing benefits of Coconut Oil.

Keep checking my site for information on what has worked for me.  I will be letting you know what works for Dry Eyes soon!

(As always, check with your doctor for any personal restrictions.)