Changes

 

 

I've been told lately that I'm not the person I used to be. I'm not sure if it was said to hurt my feelings, though I suppose it was as the tone was rather hateful, but it got me to thinking. You're damn right I'm not who I used to be. And how could anyone expect me to be? Life means changes. And these changes bring about changes in people - sometimes good, sometimes bad. I guess it depends on your perspective. If I'm not as trusting as I was before, I have reason. If I'm more self involved right now than I've been in the past, I believe I deserve to be based on current circumstances. As long as I'm not hurting anyone, I think it's okay if I don't remain a static personality. Change brings growth. And I've had plenty of reason to grow and change. And I believe if you care about me, you can learn to accept me as I change. Unless your motives are selfish. Then I can't help you. And, quite honestly, I don't want to.

In my lifetime, I’ve encountered a seemingly ridiculous number of hardships. These hardships have shaped me into the person I am today. That person is very different from the one you might remember if you haven’t seen or spoken to me since, say, high school, college, or even early adulthood. Even just the challenges of the past three years or so have changed me yet again.



I think it’s normal to experience change through chronic illness and pain. In order to deal with these things, you have to alter your actions, reactions, and perceptions. Beliefs alter as do relationships. It’s inevitable that dealing with a seemingly endless streak of “bad luck” would change my personality. But what you need to understand is that I’ve survived. And I continue to survive. In the past 25 years I’ve survived:



· A horrific marriage that included physical, as well as mental and verbal abuse by a drug addict & alcoholic who stole my innocence, my life’s savings, my belief in the justice system, and my health during a difficult pregnancy.



· An even more stressful divorce where justice was not served and the best interests of my infant daughter were traded for the “right price” by a woman who used her wealth to buy her son’s way through a corrupt court system.



· Twelve years of unmentionable horror where I had to abide by the law while my ex did not. Twelve years of trying to get my daughter extricated from a complex web of deceit, lies, lawlessness, drunkenness, lewdness, abuse, neglect, etc. etc. etc. Imagine having to let your 6 month old baby go away for three days and two nights never knowing if you’d see her again and if you did, what shape she’d be in. This continued for twelve long, agonizing years during which she nearly died at his hand multiple times. The judge’s response, “Well, she didn’t die, did she?”.



She was subjected to so many horrific things that I refuse to revisit here. Suffice it to say, no child should ever have had ANY contact with that man, his mother, his sisters, his cousins, his “friends”, etc. There are many people I believe should be living out the rest of their lives in jail for what they did and others who should pay (and I do believe will ultimately pay) for sitting idly by while witnessing these things & doing nothing. The atrocities that were allowed to happen to a small, innocent child while my hands were tied by a flawed and inhumane “justice system” took their toll, not only on my beautiful daughter, but on me as well. Which, I believe, was his point all along. My daughter suffered in order to cause me pain.



· By the time a new judge had taken seat and my ex had nearly (once again) killed my daughter, I was able to FINALLY extricate her from Hell. And, at that time, I began to have the leisure to finally notice some of the odd physical problems that had been plaguing me for years. Fevers of over 105, repeated cases of pneumonia and pleurisy, “infections of nearly all the organs in your body”, hair falling out, etc. I thought these were symptoms of the constant stress of my situation. I also didn’t have health insurance, though I’d kept it for my daughter at all times, with no child support being paid, I couldn’t afford to insure myself, so I’d let a lot of “weird” symptoms slide. Once the constant stress of every other weekend and holidays passed, I figured I’d feel better. In fact, I began to get much worse.



In hindsight, it’s clear that those years of stress helped contribute to my health’s deterioration. It took, in total, ten years to get my diagnosis of Lupus. They thought I had pernicious anemia due to my blood work & symptoms. Weekly B12 shots didn’t really help. They then were sure I had Leukemia due to my white blood cell counts, easy bruising, constant fevers, etc. I endured a bone marrow biopsy (in the hip bone – very painful), but was negative for leukemia.



· That was when they finally discovered the Lupus. By the time they did, my kidneys had been damaged to such a great degree I had to undergo some of the most noxious chemotherapy in order to save my life. Six months out of every year for 5 years I underwent Cytoxan therapy. It saved my kidneys. And gave me bladder cancer.



· After 5 years of chemotherapy 6 months out of every year, the worst side effect comes true. The doctors discover bladder cancer that has formed due to the toxicity from the Cytoxan. I undergo surgeries to remove the tumors & start on a different protocol of chemo – this time to treat the cancer. At least this chemo is covered by insurance. The loophole of using chemo for a non specified disease had resulted in my insurance company not paying for any of the Cytoxan treatments and associated costs for the past 5 years. Each infusion cost roughly $17,000. This disease had stripped me of my health, and systematically stripped me financially and ruined any credit I had.



· A year later, the cancer returned – tumor markers show that it has left the site of origin. Small tumors are found in my lungs. I undergo radiation & chemo for the metastasis. The cancer is now considered “chronic” and I am told they cannot “cure” it, only treat it. The cancer is considered to be “arrested” after 30 rounds of radiation & 6 courses of chemo.



I continued to work full time. I had not missed more than 4 days of work at a time due to chemo side effects and had gone more than six months during treatments missing no work at all. However, this is not seen as a great feat, rather I’m always on edge that I will lose my job. I get low reviews based on my illness, not my abilities. I’m encouraged to miss fewer days of work. The added stress is not good for my health, but I need the insurance that comes with the job.



· The following year, a CT Scan shows lesions in my brain. After further study, it is determined that these are not cancerous, but are leftover scar tissue from Lupus CNS involvement. But, then in December, the cancer shows up in my bones. Tumors are shown in my ribcage. More radiation. Through the course of six years, I undergo every treatment protocol they can imagine to rid my body of cancer. In December of 2009, they finally tell me to contact hospice as they can no longer help me. I turn to alternative treatments that I had studied throughout the years & in six months I am cancer free!











During the past three years, I’ve deteriorated in so many ways, the doctors are perplexed. But a recent visit to the physical therapist shed some light on the situation. He said, “The doctors don’t know what happens to someone in your situation because most people who went through what you have, died. You lived. And there’s not much we know about what comes next when that happens.. You have to expect that 10 plus years of basically poisoning your body to do some damage. Only time will tell what kind and how much.”



· August 6, 2011 – I went blind. You can read more about this horrifying experience in tomorrow’s post. Suffice it to say, it was one of the most terrifying things I have ever gone through. I was completely blind overnight as a side effect of a drug I was on to treat the chronic migraines I was suffering. The drug’s name is Topamax. It is a rare side effect. But it is one that has left people permanently blind because they did not get help in time. The drug causes acute angle closure glaucoma. This can cause irreparable damage to the optic nerve, as well as other parts of the eye. I will not keep you in suspense – I am no longer blind. Well, legally blind, yes. But with glasses, I can see. Something I will never take for granted again.

 

· In March 2012, I underwent an emergency full hysterectomy due to uncontrolled hemorrhaging and the presence of precancerous cells. It turns out my uterus was 9 pounds of fibroids, tumors, and scar tissue. I was lucky to have it removed when I did. But the sudden onset of menopause and the healing from the surgery were no fun at all. I went back to work two weeks early because they told me it was critical to the new system they were rolling out that I be there. They took another six weeks to roll out that system. And then I worked overtime and stayed in a hotel near work because of several weeks of intense, stressful work rolling out a new computer system world wide. We were the test site and I was one of only 2 people who were working like crazy to get it up and running. This was a highly stressful time. We finally had all the kinks worked out by mid August.



· In September 2012, I had to have a long put off surgery to repair damage to my nose. The damage was so severe that my oxygen levels were getting dangerously low & even my CPAP couldn’t get air through on the 100% blocked off right nasal passage & 60% blocked off left passage. So, I had a septoplasty & turbinate resection surgery to correct that. It was painful! But it worked, and for the first time in 23 years, I was able to get air through my right nostril.



· From May through October of 2012, I began to lose the ability to use my left foot and right arm. What started as ankle pain quickly and drastically became foot drop and paralysis of my entire left leg. During this same time, my right hand began to experience severe numbness and tingling and I was losing the ability to grip. The pain in my shoulder and arm had been ongoing for years, but I had been told it was mild carpal tunnel. Test after test finally showed that I had degenerative disc disease in my lower back and neck with herniated discs, spinal stenosis, and bone spurs. I needed surgery. STAT. The longer the nerves were cut off, the less likely a full recovery.







· So, in January 2013, I had a lumbar laminectomy followed by a month of inpatient hospital rehabilitation. When I came out of surgery, I had no use at all from the waist down on my left side and minimal use of my right. My left hip flexor had atrophied and the physical therapists spent 3-4 hours with me daily working to get my left leg back to minimal assist status. They showed me how to stand, sit, bathe, get dressed, etc. I basically had to relearn how to be.  They had a difficult time with many of the exercises because I still couldn’t use my right arm to help support myself on the walker. I had to use a platform walker. They did amazing things to bring my hip flexor back. They showed me how to reteach my body to walk using my brain, even though my leg was numb. I was able to leave inpatient care to go home for a couple weeks before my next surgery.



· In March 2013, I had cervical fusion surgery on my neck to fix the problems in my right arm & hand. This was also followed up by inpatient rehab. The same therapists worked with me daily for 3 more weeks.


This was followed up by outpatient physical & occupational therapy through August 2013. My foot drop is still there and muscle weakness is still present. I have a complete surface loss of sensation from the waist down on my left side. I have chronic nerve pain from my lower back down to my foot, but when they use the needle like devices to press against my skin, I feel nothing. I still have to think “pick leg up, set leg down, etc.” when I walk since my leg doesn’t receive the signals like it used to. I can somewhat wiggle my toes. I can just barely move my foot to the inside and outside. But the foot drop remains & the loss of reflex remains. My right hand is less numb. My grip has improved, but is still weak & weakens rapidly with use. My ability to pinch is gone. But I keep working at the exercises, hoping to get more ability back.



· Before I broke my right ankle on August 31, I was receiving a series of treatments at a pain management center for extreme lower back & hip pain. They believe I have nerve damage of the facet joints in my spine as well as my sacroiliac joints in my hips. They also suspect the years of prednisone may have left me with avascular necrosis of the hip. Which would mean a hip replacement. Eventually. I was recovering from the medial branch neurotomy when I broke my ankle. So, I’ve been pretty much bed bound with my leg elevated since & haven’t been able to get back to the pain management stuff. Sigh.



· I had gotten to the point of using my forearm crutches to get around short distances (<350 feet). Now I’ve been back in my wheelchair since I cannot use my left leg to propel myself without being able to put weight on my right leg. It’s a mess. I’m hoping I do not lose the ability to walk again once I am able to put weight on my right foot. I’ve tested it a bit, but I’m clumsy and am scared to go more than a few feet with my husband standing guard in case I fall. I cannot afford to fall again.



So, for now, I am in a wheelchair & I have to deal with what that entails. Unless you’ve been reliant on one, you don’t know just how inaccessible this world really is. Including my workplace. But that’s a different story.













 See what I mean?


I spend an inordinate amount of time lying down as that’s the position with the least amount of pain. I cannot sit or stand for more than 30 minutes, anyway. One of these days I’m hoping to find an end to the pain. And if not an end, at least some coping methods that work.

 In the end, I’ve been shaped by the pain, the hardship, the challenges, the losses (relationships, financial, physical). No one is immune to change. And a body under constant pressure will submit to that pressure. So, when I hear “You’ve certainly changed a lot” it’s usually in response to my being more direct and speaking my opinion. Sometimes it's because I have to put my own needs ahead of others. I have come to the conclusion that people say this when they don’t like that you’re not fitting into some preconceived box that you’ve been locked into for some time. Yes, I’ve changed. In many ways for the better. In some ways, you might say for the worse. But I am who I am. At least for now. Wait around awhile; I’ll probably be changing again.





Daily A-Moose-Ment:

In the Halloween spirit of things - I give you this poor little pup-moose! LOL
 

What It is Like to Have Lupus - My Story

Today I'm going to touch on what it's like to live with Lupus.  Lupus is the disease from which all my other medical complications & diseases have sprung. 

 

So, I'm again going off outline to put this out there.  Many people know I have Lupus.  But most don't really understand what that entails.  To better understand me, you need to have at least a rudimentary understanding of that.  Because Lupus is a big part of WHO I am and WHY I am and HOW I am.  So, here goes:

I have Lupus.  Otherwise known as Systemic Lupus Erythematosus (SLE). A mouthful.  There are different types of Lupus, but I have a severe form of the SLE type.

What IS Lupus? The medical jargon will tell you that it’s an autoimmune disease that may attack any and all living tissue in the human body.  You never know what it will attack or when or even why. 

 

The truth is that doctors do not really understand this disease.  Most doctors have only ever heard of Lupus and have a vague understanding that it’s “not a good thing.”  There are specialists, Rheumatologists, whose job it is to treat Lupus and other autoimmune disorders, like Rheumatoid Arthritis, Multiple Sclerosis, etc.  Which is good, since other autoimmune disorders like to “piggy back” Lupus, so most of us with the disease also have several more disorders along with Lupus.  The following is an excerpt from the Lupus Foundation of America.  It gives a simplistic, generalized definition of Lupus.

From The Lupus Foundation of America:

“In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better).

These are some additional facts about lupus that you should know:

• Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone.
• Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above.
• Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive.
• Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life.
• Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus.
• More than 16,000 new cases of lupus are reported annually across the country.
• It is believed that 5 million people throughout the world have a form of lupus.
• Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too."

 

But this just tells you what Lupus is and what it isn’t.  It doesn’t give a glimpse into the long list of things that Lupus does to a person.  It doesn’t tell you what it is like to live with the disease.  And there’s a good reason for that.  Each person with Lupus will have an experience that is unlike any other person’s.  Though we can all have similarities, each of us presents differently.  That’s one of the things that makes it so difficult for doctors & researchers to find treatments that work, much less a cure.

 

If you want to know the profound effect this disease has on day to day living & decision making, a great resource is “The Spoon Theory” by Christine Miserandino.  Here’s the link: http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

And while her Spoon Theory is an awesome resource for showing people how Lupus can affect your daily schedule as it relates to fatigue, it’s still not going to show you how  Lupus affects you on a personal level.

 

Recent Flare after Surgery - January 2013 - "Butterfly" Rash

 

So, I’m going to attempt to give you a glimpse into what having Lupus is like, symptom wise, for me. 

 What does it feel like to have lupus?

Imagine having to wake up every day & the first thing you do is look at a watch like device embedded in your wrist that has just one button on it.  In order to begin your day, you have to push the button.  You have no choice – you must push the button.  You cannot remove the device.  It is a part of you. 

You have no control over the button.  You don’t know why you have the device.  One day, you woke up & it was there.  There is NO way to remove it.  No one knows why you have the device & others don’t.  There are others out there with similar devices, but no two are exactly the same.  The only thing in common is that anyone with this device HAS to push their button.  The button determines what kind of day you’re going to have physically & mentally.  In its harshest terms, the button determines your ultimate fate – whether you live or die.  And how long you live and with what quality of life.  Everything is determined by the button.

The “experts” don’t even understand how the button works.  They only know that you have to push it.  The twist?  You never know what happens when you push it.  You might, when you’re lucky, be given a small reprieve.  The button will grant you a “good” day.  This day you might only have a bit of joint pain and stiffness that goes along with the general fatigue and malaise and fever.  Other times, the button sends you on a spiral of perplexing, agonizing, painful journeys. 

But no matter what, every day you’ll wake up with a “standard” feeling.  The button decides what is added to that feeling.  The standard feels like what most people experience when they have a mild case of the flu.  Achy, fatigued, feverish, and out of sorts. 

For those of us with Lupus, that’s a normal day with no complications. And then we “push the button.” And we pray for a good day.

What can Lupus DO?

It can cause a lack of focus and concentration, where the simplest of tasks can confuse you and leave you feeling like you’re walking around half asleep or drugged.   It can affect your speech.  You might be talking and thinking that the words you’re using are the right ones.  You learn quickly by people’s perplexed reactions when your thoughts & actual words are not adding up.  A funny story my daughter & I relate is the time I asked her to “button up the floor.”  She immediately got the broom & started sweeping.  At this point, she’d learned to “translate” a good bit of what I said into what I meant.

Sometimes the joint pain and stiffness are so bad, it can take up to an hour just to get out of bed, slowly easing each of your joints until you’re able to stand without falling. I miscalculate & fall often.  Other times, I find that I wake up & cannot move my legs at all.  I suffer temporary paralysis that can last from a few hours to several days.

Other times I can feel the heavy, pulsating beat of my heart, causing me to be dizzy, exhausted, anxious and worried.  The anxiety builds until I get short of breath and faint.

Most days, my stomach is upset or becomes upset if I eat anything.  I can be starving and craving something to eat, but the minute it hits my stomach, I’ll feel as though I’ve got the stomach flu. I can’t travel far from a restroom if I’ve had a full meal as the likelihood of digestive distress is high.  But, because of the medicine I’m on that saves my life, a steroid called Prednisone, I’m always a hungry and thirsty and I gain weight even though I often take in very few calories a day.

My skin itches and tingles and burns every day, all day long. I have the kind of pins & needles that make even clothing brushing against my skin feel like fire all over, in my scalp, down my back, on my chest, and down my arms & legs. The simplest of touches, a hug, a kiss become torture.  My veins feel like they are filled with battery acid.  They are at once on fire and yet I’m chilled to the bone and no amount of blankets brings relief.

My head will pulsate and my vision will wax and wane.  Sometimes my prescription glasses make things clearer and sometimes I have to remove them because I can’t see with them on. 

Often my head feels heavy and it pounds, feeling as if it will explode. I will often get migraines and most of the time it feels like a migraine is just one wrong movement, one sneeze, one laugh away. When the migraines hit, I have visual auras, nausea, and such extreme pain even the slightest sound will be torture.  I have to wait it out, lying flat in a dark room with no noise and no light until it passes.  This can last for hours, days and even at its worst, weeks.  The worst was in July & August of 2011. After many trips to the ER for CAT Scans (because they thought the cancer might be back), and trying various drugs, I was put on Topamax.  A commonly prescribed anti-seizure med used for migraines.  On August 6, 2011, I woke up completely blind.  The medicine had caused acute angle closure glaucoma. A story (like many) I'll save for another day.

Many times during the month, my mouth and nose are full of sores that start out itching and then burning, before turning into blister like sores that break & crust and hurt dreadfully, making eating and drinking a task of torture. The nose sores get so out of control that at times, my septum has been “eaten” through – on the inside as well as outside where you can see it.  On my face, the sores will often resemble acne at first.  But then it becomes obvious they aren’t. 

Mouth Lesions

These sores most commonly break out on my face, but when it’s bad, they’ll break out all over my scalp (brushing my hair becomes torture), all along my arms, back, legs, even the bottoms of my feet.  They can last for weeks and most tend to leave behind scars.  Sometimes, the sores are not well defined, it’s more like the skin just loses its elasticity and splits apart.  These are usually the kind that occur in the corners of my eyes, the corners of my mouth, and along any “seams” on my body. 

Sometimes I awake in streaks of blood from the sores breaking in my sleep. Sometimes, when my platelet counts are really down, I can’t clot and the really big sores will break & the bleeding won’t stop. These tend to happen when the skin gives way over a major artery or over previously scarred skin lesions. I have to have these excised and this leads to even bigger scars.  Other times, my back will be so covered in sores that I cannot comfortably lie down or sit down.  It’s on these days that I have to struggle to find a way to lie on my side, pillows propping me up, and change positions constantly because of the pain.  I cannot function on these days.

Most days, I have difficulty breathing. Breathing in feels like my lungs can’t fill to capacity.  Breathing out is often even more difficult because I have air trapped in my lungs & I cannot seem to get it out.  I feel it popping & hissing & gurgling, but the breath won’t escape.  It feels like what I imagine drowning is like.  Breathing itself causes excruciating pain.  It’s at these times, I ask myself…”Is it my heart? Do I have a clot? Am I about to die?” Those are often very long nights. I ride it out until it passes. Sometimes, I write messages to my family in the event they find me dead in my bed.  Because I want them to know that I was thinking of them & loved them.  And then, when it finally passes, I tear up the messages & throw them away.  Keeping them feels like a bad omen.

I have heart palpitations, known as HPV’s.  These come from the pulmonary hypertension caused by the scarring in my lungs.  On days when the palpitations come every minute or less, I’m often feeling as though my heart will just leap out of my chest or stop suddenly.  It’s frightening.  It also leaves me dizzy and lightheaded.

Lupus isn’t picky about which part of the body it messes with. And it likes to hop around so that one day your heart is being attacked, the next your lungs, and maybe it will then move on to your kidney, liver, brain, spleen, bladder, etc. 

I suffered for years with “mysterious” illnesses (fevers reaching 105 degrees, multiple cases of pneumonia, extreme fatigue, infections of multiple organs) that no doctor could really explain.  I was thought to have pernicious anemia, leukemia, etc.  When they finally diagnosed me with Lupus, I had had severe kidney damage due to Lupus. 

For this damage, they put me on Cytoxan (one of the most vile, harshest chemotherapies).  Why chemotherapy?  Because chemo systemically attacks your immune system.  This is a negative side effect when you’re on it for cancer.  In Lupus, this is the side effect they want to happen.  By driving down your immune function, the chemotherapy effectively “slows down or stops” Lupus from attacking its own tissues.

The Cytoxan worked to save my kidneys.  But not without a high cost.  The chemotherapy caused damage to multiple systems & organs.  It also caused bladder cancer.  I will save my cancer story for another day.

These are a few of the symptoms that plague me the most.  Then there are the flares.  Flares are times that multiple symptoms will come together and multiple body systems will come under attack.  It is in these times we are at our most vulnerable.  It is during the FLARE that most people who die, will die of “Lupus Related Complications” – most often of: kidney failure, heart failure, sepsis, or respiratory failure.

The Lupus Butterfly - One of Our symbols - Used because of the Butterfly Rash - But Symbolizes HOPE

Then there is the emotional toll that comes with having Lupus.

Vanity never really dies.  Through all the changes this & the other diseases have caused, I still, like everyone else, want to be at the least not offensive in my looks.  I hope for attractive.  But this disease attacks every single part of your body, so I have my hair fall out & thin, sores& lesions, easy bruising, wounds that won’t heal and the changes in body weight and these make it hard to feel anything but ugly.  This, too, can take its toll mentally.

I struggle with the words to describe what its like emotionally, so I’m going to borrow the words that a friend provided in case we needed help describing our lives to family and friends.  I cannot improve upon her words:

 “In a sentence…my body has forgotten how to mechanically run on its own. Each individual part is running independently of the others, in a type of mutiny. As the patient, I try to do my part by learning to adjust and following my doctor’s advice, although I have to say, a healthy amount of denial of my fate has helped me live my life to the fullest.

Along with the tangible comes the intangible, the parts of this disease that cannot be measured in a blood test, yet are very much a part of our lives. I am talking about the fatigue. It is debilitating. Do you remember the required obstacle course you were forced to navigate in gym class? Now imagine every day with an obstacle course laid out before you in the form of daily tasks. Only this time, when you finish it, you are required to repeat it again and again until you go to sleep that night. Or, imagine that the air surrounding your body is made of peanut butter--imagine the energy it would take to just walk--that is the type of fatigue I am talking about.

It is when every nerve ending in your body is pulsating with electrical charges, because it has worked overtime all day. And as ironic as it sounds, for some reason when it is time to retire for the night, your brain has disconnected the messages to your body that says it is time to sleep. Insomnia is one of the most common symptoms we Lupies share.

I feel, every day, that I have been given a test of survival. Despite the strength everyone says I have, the sorrow of the abandoned child lives on the surface, at the back of my throat, as a constant reminder of just how vulnerable I am. My world is different from everyone else’s. I am never on solid ground; it is always shifting beneath my feet.  There is no cure for lupus. If the numbers become good, it doesn’t mean I am cured or had a misdiagnosis…it just means the wolf is caged, for only a brief period of time, and she will be back.

On really bad days, I feel all of these things at the same time.

Lupus - The "Wolf" is Always Lurking

Lupus patients often refer to this disease as “The Wolf” because of its name. But it is also a perfect visual of the characteristics that this disease holds. As with Red Riding Hood, you are never completely out of the woods and safe. Everyday issues that most people have to address become magnified for us. With every slurred word…with every twinge of pain…with every rapid or slowed heart rate or indigestion, we wonder…is that the wolf lurking and licking at my heels?

With the complexities of a disease that lives in all areas of my body, it is helpful for me to give it a face. But along with that face is also a sound, the sound of a Jack-in-the-Box: that constant, slow turning of the handle and that awful tune playing in your head. Even when you are receiving treatment and you start to feel better, your brain never lets go of the thought that the Jack-in-the-Box handle is still slowly turning, and eventually the wolf, dressed like a clown, will pop up again.

Every night when we lay our heads down to sleep, it is as if we are put adrift on a raft, uncertain of where we will be when we wake up. Every morning is different. The only thing that is certain is that things will change, no matter how good we feel. There is a constant state of uneasiness, that you realize is now your constant companion. And then we awaken and do it all again--every single day-- until a cure is found.” – Jenn Schoch, Lupus and Me

 
And though, it might seem as though I'm being negative, I'm really only trying to give an honest account of what it's like to have Lupus.  But do not believe that I have given up hope.  HOPE is what keeps me going. 

I'm with Baldy

I'm going to go off outline today.

So, I belong to a couple of really fantastic support groups on Facebook.  Without the support and kind words of the members there, I would feel completely isolated at times.  Not that my husband doesn't support me.  He does. Fantastically.  But, unless you've been there, you just don't get it.  And, I'm forever grateful that he doesn't get it.  I wouldn't want him to have the insider knowledge!

Anyway, it was with the support of these wonderful people that I decided to even start this blog. I had dithered back & forth about it.  Had even started a couple of blogs along the way, but they always fizzled out because I couldn't see any evidence that they were being read.

Well, this time I've decided that if no one is reading my blog, that's okay.  I'm not on here trying to make money.  Its purpose is simply an outlet for me to talk about my life, my joys, my struggles, my battles & scars, etc.  If, in doing this, someone comes across my blog & something I've written gives them a ray of hope, a giggle of laughter, or information they can use to help themselves, then that's just fantastic! I really wish people would read - and comment.  But, I've resigned myself to continue with this project for the selfish benefit it will give me. 

So, today I was talking about hair loss.  It's a deeply personal experience for everyone. Everyone handles it differently.  And I thought, wow, you know I have lost my hair & regained so many times over the course of the previous decade, it's not funny.  I managed after that 1st time of losing my hair to find the humor in it.  I learned to hate wigs and love hats. I learned to try new hair colors, because, let's face it - if I didn't like it, it wouldn't be around for long anyway.  LOL

So, after talking a bit about the issue, I thought it might prove entertaining or helpful or whatnot if people saw the transition through a decade.  Through hair loss & gain.  Weight gain, and gain, and loss, and regain. 

I looked through the very few pictures I actually have of myself during those years & pieced together a montage video.  I've never inserted a video into Blogger before, so I'm hoping it works.

Here are the results - You can click on the link below to open the video in YouTube:

Dawn - Disease Progression

 

Let me know what you think - are any of you suffering through cancer? Lupus? or any other debilitating disease & you'd like to make a comment below?  Please do!

 

 

Oh, No! It's the OOGIES....Run for your LIVES!!! Or, you could simply do this...

Someone was curious about HIS new blog!

Personal Story

So, today is kind of a bad day for me.  My recent tumble which left me with a broken right ankle is causing me some serious pain.  It's also the reason I've missed out on some important events.  So, today I'm mad at my foot.  What good does that do?  Nada. Zilch. Zip.  But, for some reason today I'm just feeling "oogie" and I can't seem to shake it.  You know, blah, grumph, bleh.  I've had to remind myself of things that I can do to bring myself out of my funk. I've got a big ole case of the oogie virus.

Oogie Virus, Funk Strain

And that brings me to today's story.  People often ask me how I do what I do.  If you are wondering what the "it" is, join the club. LOL  I just go on living like anyone else.  Sure, I'm more of a flying unicorn amongst the rainbows and sunbeams kind of person, but I have my days where the clouds roll in, the unicorn develops a nasty head cold, and the rainbow droops and sags and the mean tempered leprechaun makes off with all the gold, laughing like a maniacal serial killer.  Yeah, today's one of those days.


Gather 'Round the Fire
Anyway, how do I "do it."  I'll tell you of my #1 coping strategy for when life throws you lemons & you have a profound dislike of lemonade.  Or you've had so much lemonade, if you have one more sip, you'll hurl.  You get my drift.

Listen closely, friends, because this one is a doozy.  Are you ready for it?


You sure?


Okay, here it is:


I make lists. Yep, lists.  It doesn't matter what the list is about.  It could be a list of my favorite words, the colors of all the houses I've lived in, the places in the world I'd love to travel to some day.  Whatever floats my boat. Trip planning, especially Disney World trips are a favorite of mine.  Excel spreadsheets are my friends.  They understand me. They allow me to arrange, rearrange, add, subtract, create columns, rows, charts, color coded & bulleted lines, etc. etc.  Bliss, my friends.  True bliss.  Making lists is therapeutic for me.

Infected Me - Building my EXCEL File LISTS

 

But there is one important step I take first.

In order to really get all I can out of my list making, I must first try to purge the oogie virus from my system.  I have a few methods for this:
(1) indulge in some pity party madness, which usually includes some sort of chocolate or pastry. 
(2) listen to music - feel good music that may be cheesy & dated, but hey, it's your music so play it loud & proud - and sing along
(3) If it's a certain person or persons giving me the oogies, I make up scenarios in my head that I'd never try in real life, but in my head, feel oh so good.  

AND THEN
(4) I decide to make a list.

Some might call what I do control-freakish.  That's okay.  Because I have ZERO control over most things. In fact, when people are asking how I do it, the "it" is invariably completely outside my scope of control.

But, I have COMPLETE domination over my lists!  MUWAHAHA! And this gives me a feeling of satisfaction, confidence, and  believe it or not, joy.

So, if you're having an oogie day, week, month, year...  try list making.  If you want to exert control over the situation, make your list count.  List what it is you need to know about your circumstances and then use this list to find the answers. It doesn't have to be perfect.  No one is grading you.  No one else ever has to see your list. But, whatever you do, just begin.  Believe me, you will find some sense of satisfaction. And hopefully, you will purge the oogie virus from your system.

Buh Bye, Oogies!

Daily A-Moose-Ment

Daily Discussion Topic/Question
When you get a case of the oogies, what do you do to get rid of the funk?

Smiling Moose brings Great Joy

So, now that I've finally boarded the blog train, I began to wonder just how structured I wanted this venture to be.  Do I have a random ramblings type thing, an outlined structure, a mish mash of the two? Should I go about it in some type of chronological order? After thinking about it, I've decided to just follow whatever my gut was telling me to share on that given day.  So, I guess we'll end up with the mish mash of topics with a splash of organization to reign in my admittedly wordy, rambling prose.  So, thinking about a general structure, I came up with the following format (which I reserve the right to change at any time due to suggestions from my readers, my own whims, the moon cycle, etc.).  In other words, don't hold me to this.

Personal Story --This could be a general life related or specific health related topic depending on my mood, the wind direction, and how hungry I am at the time. You know, random.   My real hope is that this section proves a cathartic place where I can examine my life and when lucky, maybe even impart some wisdom I've gained through my experiences that may help you.

Gather Round the Fire - Research and/or Guinea Pig Experiments That Might be of Some Benefit to Someone Out There.  I've been searching for answers my whole life.  Through reading, research, and practical applications.  I'm hoping I might be able to provide you with a new or different viewpoint, methodology, insight, or just something you can try out & see if it's of help to you in your journey.

Daily A-Moose-Ments: I am a big believer that laughter is the best medicine.  Laughter has gotten me through some of the most harrowing times in my life.  Laughter has bonded me with other individuals that I might otherwise never have formed a connection with at all, and laughter is good for the soul.  Who doesn't like to laugh?

Daily Discussion Topic/Question - Because I want to hear from you, my readers! I really do! Please take a moment to comment below if there is anything you'd like to share, whether an opposing viewpoint, an alternative therapy you've had success with, a favorite joke, or just to introduce yourself.  I'd love for this blog to be interactive.  In this life, I've studied countless books and periodicals, but some of the best information I've ever received has been from the people I come into contact with and admittedly, most of those people I know only through this great tool, the internet. 

So, now that the boring stuff is out of the way, on with today's post.  You may stop holding your breath now.  You know that's not healthy, right? :D

Today's Personal Story
I mentioned in yesterday's post that I have a 24 year old daughter.  She is the light of my life and has been the number one reason I've busted my fanny to stick around when the odds have not been in my favor.  Her name is Somer.  It's pronounced like the season, but is actually the Old English word meaning "beautiful." And she is beautiful, inside & out.  Allow this mom to brag about her kid on her own blog, please.  I promise not to lay it on too thick.  I'm aware she's not perfect.  Just as I'm not. 

Anyhoo, if you're good with math (which if you are, I might hit you up on some tips someday), you will deduce that I had her when I was a young babe o' the woods of just 19 years old.  The way in which she was conceived is not something I wish to delve into today.  Or the painful years dealing with the fallout of those circumstances.  Someday, I might.  Because I think I might be able to help someone else out there who has gone through or is going through something similar.  But, today's just not that day.

No, today, I want to focus solely on the joy of being a mom.  I always knew I wanted children.  Six, in fact.  I love children.  I love to embrace my inner child.  And I have been in love with my future grandchildren since my daughter first started carting around her various baby dolls.

So, it is with great happiness that I tell you my one & only, my precious daughter, is going to make me a grandmother within the next few weeks. It's a girl! And she will be named after my own dear grandmother, Naomi.  I'm thrilled to pieces! It's this miracle that has driven me to work so hard this past year to overcome some nearly impossible odds so that I'll be able to hold my precious little angel & play with her & watch her grow.  It is my fondest wish to be around for all her major & minor milestones.

My daughter, Somer, relaxing in the pool at my house during my belated birthday party.

Tomorrow is the baby shower that I and my mother were to throw for her.  I was able to spend the week at my parents' house week before last to pick out the theme, buy decorations, come up with a menu & game ideas, fill out & send the invitations.  But, then I fell & broke my ankle.  And this leg must be raised above my heart for at least one more week. And I'm not allowed to travel the 1.5 hours there with my leg hanging down, much less find a place to lie down with my leg raised in the air during the event & then make the trek back home.  All that would put me in danger of losing the functionality of my right leg.  Something that I can't afford to risk, since my left leg is non functioning. (More on my extensive medical woes in a later post).

I hope you have a fantastic baby shower, baby girl(s)!

Anyway, I was feeling pretty down about missing out & also about not being there to help my elderly, sick mother & father get this party set up. Here's today's lesson I re-learned: I cannot change what is.  I can only change my reaction to it.  So, I allowed myself to grieve & threw a minor pity party involving some chocolate ice cream.

Gather 'round the Fire
Life can suck.  Because, that's life sometimes.  Sometimes in the midst of happiness, an unfortunate event occurs.  And sometimes during the bleakest of times, a miracle occurs.  And I have come to realize that things happen for a reason.  I don't yet know what many of those reasons are, but I know they exist. But I know one way of coping in the meantime. Get busy.  Busy minds don't have a chance to brood.  One way I've used through the years to keep busy is with art therapy.  Now, you don't have to be good at it.  You just have to do it.  Trust me, it can take your mind so far away from your body that you forget time, space, and most of all, pain.

Today, I got  busy doing some touch up work on some pictures for Naomi.  During my recent stay in the physical rehab hospital, I was trying to get my fine motor skills back in my right hand.  I had over time lost a lot of functionality of my dominant right arm & hand.  After surgery, it was like having a noodle attached to my shoulder.  No grip, very little gross motor skills, and very tenuous fine motor skills. 

Although the facility is one of the top 10 in the nation, and they are fantastic at what they do, I wanted to do something on my own time that I love that could also serve as a therapy tool.  So, with shaky fingers, I picked up my new pens & began practicing to draw again.  After several pages of squiggles and lines and general doodles, I came upon what I'd like to draw.  A bird.  Not just any bird, though.  I wanted to draw a bird whose fanciful lines & beautiful feathers would evoke a sense of wonder & hope in those who viewed it. 

What would have taken me just a couple of hours to draw before I lost my functionality, took 9 days and many, many hours.  But, in the end I had something I was proud of.  And my fingers were relearning some important movements.  For kicks, I sent an image of the picture to my daughter to see if she liked it.  She immediately responded that not only did she like it, but that she wanted it!  And could I make more like it?  Ah, a purpose! Just what everyone who is recovering from a traumatic life change needs.  This purpose continued to carry me through many months of therapy. And it helped fill the long, often lonely hours spent in the sterile hospital room and later my own bedroom during weeks of nights & day hours I could not find sleep.

So, with a new purpose, I decided then & there that this would be my gift to my future granddaughter.  A keepsake set of pictures of fanciful birds.  A keepsake that I put all my positive energy into.  I'm proud of these drawings for I know what I put into them.  Many people have remarked that they think they're wonderful.  Even though I'm hyper aware of each flaw as my hand shook & I had to reshape & reroute the drawing to correct these errors, I'm still proud that others appreciate them as well.  But, I really have only one hope - that Naomi grows up looking at those pictures, knowing that I made them just for her, and even a fanciful notion that some of that positive & hope filled emotion somehow gets transmitted to her.

That's my personal story/life lesson for today.  I always need a good reminder of this lesson.  It's entirely too easy to slip into despair when life keeps throwing seemingly random, often hurtful and damaging challenges your way.  I have conquered.  I will conquer.  And, if by some chance, you're out there feeling blue about how life is treating you lately, maybe you can take a note from this blog article and find something in your deepest self that will help you find solace.  Find a purpose.  It may not resemble anything you've ever done before.  It may be frightening to begin.  But if you do this, and I dearly hope you do, you will find not only great joy, but a sense of pride.  Pride that has been stripped from you through forces you have no control over.  And in this, you will conquer.

Daily A-Moose-Ment:

A smiling MOOSE! And this guy - he looks like he's simultaneously thrilled & terrified that a giant smiling moose has stopped to take a photo op.  This gave me a smile today.  I hope you get one from it, too.

Discussion Question(s) of the Day
Have you faced a challenge (health or otherwise) that you were able to overcome despite the odds?  What was it? How did you handle it?  Have you tried art therapy? Or, you can simply pop in to say hello!  Comment below.  I'd love to hear from you.

Introductions, Moose, and the Daily Discussion Question

DISCLAIMER:
It all started with a moose! I know what you're thinking.  How could a moose be part of this story about a Southerner? Well, you see, I have this weird obsession.  I kind of have a fierce love for, well, um...there's only one way to say it - MOOSE. 

I LOVE all things moose!  I don't know where the obsession began or even how.  I've just always thought they were THE coolest critters out there.  Only now that I think of it, a hazy memory of Disneyland begins to surface.  A dark theater.  An excited hush in the air.  And then spotlights shine on the wall.  And there, lit up in all his animatronic glory - A TALKING moose.  And just like that, BOOM, moose love. Crazy world, isn't it? I've not lost that adoration in all my years. I'm still crazy about all things Disney, too.  Coincidence?

Now that I've made my disclaimer - on to introductions & today's post.  I started thinking about writing a blog about my life & experiences a good while back.  Several people have encouraged me to write my life story. I often joke it will read like a Lifetime Movie marathon.  I cannot claim a lack of excitement (be it good or bad) in my few short years (hey! age is relative!).

Anyhoo, I guess I have put it off because of that still, soft voice in my head that whispers "Dawn. Really. Who wants to read about a quirky, hippie-esque, nerd and all her various & sundry trials & tribulations?"  I recently received so many new requests, though, so today, in a bold move, I told that voice to take a hike! Ha!

And, so, here I am.  My name is Dawn.  In the last big hippie hoorah of 1969, I was born in California and adopted as a baby. When I was two, we moved to Louisiana.  And a weird mish mash of California meets Louisiana came together to help create the person I am today.   I am the mother of a 24 year old daughter and wife to my husband still in our honeymoon years (married Nov 2010). I am also the proud human of a 10 year old Shih-Tzu, Rufus, and a 2 year old lab mix, Hudson (who, is as big as a moose - LOL).  Those are the stats.  The juicy stuff you'll just have to wait for it to be revealed over time. (neener neener)

Now onto the big question - "WHAT, exactly, is your blog about?"  Well, mostly it will serve as a forum for me to chronicle my life story so far & as it unfolds.  Also, it will be a chance for you, my readers, to benefit from my years of extensive research and self inflicted guinea pig trials of health management issues, alternative & complementary therapies, and just about anything else that has had an effect on the overarching theme of my life - hanging on for DEAR life!  I also want to encourage you all to make comments below.  You can comment on the day's posts or answer the daily discussion question, or just give a shout out! I'd love to hear from you. <3

Oh, and I'm going to try my best to include a moose-ism in my weekly postings.  We'll see how that works out.

So, how do moose play into my post today?  Well, I'll tell you.  I've had a whirlwind of a ride on the health train from Hell.  During the most emotional of all my recent surgeries was my emergency hysterectomy.  The HORMONES! Oh, and that small yet powerful sense of loss of what still (though highly unlikely) could have been another child just crushed me.  And that's when Moosie came into my life.

Who is Moosie, you ask? Well, that's him as my avatar.  It's a pillow pet.  A MOOSE pillow pet. (Squeee!)  Yes, my dear husband, who incidentally supports my weird obsession even as he shakes his head in befuddlement, searched high & low for a moose pillow.  He presented this to me the day of my surgery.

You may know this already, but one of the things suggested to women to get through this particular surgery is a small pillow to hold onto for those times when you invariably need to sneeze, cough, laugh, ahem fart - all to soothe the sharp pains felt in your belly where your baby making machinery was dismantled.  Things in there take a while to heal up & parts left behind take some time grumping around in there adjusting to the new roominess. 

So, that moose pillow turned out to be the BEST thing I have EVER received as a get well gesture!  Not just because he's a moose, and a darned cute one at that, but because his soft fur soaked up my tears as I vacillated between laughing ridiculously at nothing much at all and sobbing at pretty much nothing at all.  I still sleep with that silly moose snuggled up to my side.  And my dear man just continues to shake his head.

That, my dear readers, concludes today's ramblings.  Have you ever received something during a difficult time in your life that made a big difference?  What was it? How did it help you?  If you'd like to share, I'd love to hear about it.

Until, tomorrow.  I'm off to dreamland now, snuggling up to good ole Moosie Moose.  G'nite all.