Wednesday, April 20, 2011

Let's Talk Lupus...



I had a lot of positive feedback on my last video blog post...so I thought I would try again. :)  

Saturday, April 2, 2011

Central Nervous System Involvement and Lupus

Lupus is the great mimicker. It can manifest itself in so many ways that many doctor's do not catch it for years. They suspected lupus in me two years into my diagnosis of Rheumatoid Arthritis because of occasional episodes of pericarditis, pleuritis and glomeruonephritis...and a pesky magenta rash that would come and go. I would get horrible eye pain and no one seemed to connect it to the lupus until 9 years ago. I was always told it was an eye migraine. Because I couldn't tell I was losing peripheral vision, it wasn't an issue until then. That is when my central nervous system was first being recognized as being attacked. Now, I have peripheral neuropathy, in my legs and feet, my arms and hands...and now in my esophagus.

When the central nervous system gets involved, it is usually a sign that you have an aggressive and progressive form of lupus. Among the neurologic manifestations of lupus, the most common are the organic encephalopathies (35-75% of case series), which basically comprise all potential variations of acute confusion, lethargy, or coma; chronic dementias; depression, mania, or other affective disturbances; or psychosis.  I have presented with depression and psychosis.

Acute or subacute mental status changes may be secondary to diffuse cerebritis but should be differentiated from focal cortical dysfunction resulting from thromboembolic cerebrovascular accident (CVA) or from diffuse changes resulting from electrolyte or metabolic derangements (accentuated by concomitant renal failure); medication effects including steroid psychosis (most problematic with high dosages and long durations); aseptic meningitis (seen especially with nonsteroidal anti-inflammatory drugs [NSAIDs]); or opportunistic infections that result in meningitis, encephalitis, brain abscess, or systemic infection with a secondary toxic encephalopathy.

Seizures are already known to occur in 14-25% of patients with lupus compared with 0.5-1% in the general population. Seizures may result from cerebral vasculitis (ischemic or hemorrhagic manifestations) -- this is the type of seizure that I have experienced, cardiac embolism, opportunistic infection, drug intoxication, or associated metabolic derangements. A seizure focus may result from an acute insult or from the development of a seizure focus in an area of prior brain insult. Partial or secondarily generalized seizures are most common, but all seizure types have been reported.

Electrolyte disturbance and medication effects should be excluded, especially those resulting from antidepressants, stimulant medications used to treat fatigue, or withdrawal from sedatives or alcohol. Opportunistic infections should be considered in patients receiving immunosuppressive therapy. Steroid therapy, especially high-dose pulse therapy, has been associated with status epilepticus.

Cranial nerve involvement is also relatively uncommon and usually transient, occurring in roughly 10% of lupus patients. Oculomotor nerve palsies and all other cranial neuropathies have been reported. Visual disturbances tend to be bilateral (80%) and usually occur late in the disease course (77%),

These disturbances include: optic neuritis, retinopathy, and concurrent migrainous features. Anterior segment findings include: keratoconjunctivitis sicca, keratitis, and scleritis. Retinopathy can be associated with cotton wool exudates (indicative of local retinal ischemia) and hemorrhages. There is a reported case of SLE with recurrent laryngeal palsy resulting in vocal cord paresis. Laryngeal electromyography (LEMG) on both cricothyroid and thyroarytenoid muscles confirmed a left recurrent laryngeal neuropathy with ongoing processes of denervation and reinnervation.  I have recurring optic neuritis from vasculitic lesions along with the keratoconjuctivitis sicca (dry eyes) and scleritis (where the whites of the eyes get all RED and demon eye looking).

Peripheral neuropathy occurs in as many as 18% of patients. A sensory or sensorimotor predominantly distal polyneuropathy is most common; however, the patchy deficits and subacute time course of mononeuritis multiplex and the rapidly progressive course of acute demyelinating polyneuropathy have been reported. The neuromuscular junction may be affected, mimicking the weakness patterns (and physiology) of myasthenia gravis or myasthenic syndrome (ELS). Myositis is clinically apparent as proximal weakness and myalgias in 3-5% of patients but, if assiduously sought, may be found in as many as 50%.  In the past 6 months, I have started presenting with swallowing issues very similar to those seen in myasthenia gravis patients.  It is also important to note that my mother has myasthenia gravis, rheumatoid arthritis and ocular citatrical pemphigoid -- a rare autoimmune condition of the eye.  Yes...my family seems to be prolific with the weird diseases.

Autoimmune-mediated myopathy must be differentiated from myopathy induced by steroid or antimalarial therapy as well as arthralgias and other musculoskeletal sequelae of SLE. Distinction from arthralgias and other musculoskeletal conditions is based on symmetrical, proximal muscle weakness (in excess of that weakness explained by painful give way), elevated creatine kinase, and absence of other musculoskeletal findings. Distinguishing SLE-induced myopathy from medication-induced myopathy is dependent on the time course of the weakness in relation to changes in medical therapy. In difficult cases, clinical response to increasing or decreasing the suspected medication may settle the issue.  The testing is ugly, painful and generally not something to want to go through more than once.

Chronic fatigue is a common symptom in SLE and usually does not relate to objective muscular effort, ie, walking up stairs may seem no harder than walking on level ground. Fatigue may contribute to both self-perceived and to measurable cognitive impairment, chiefly by impairing frontal lobe attentional functions. This may relate to metabolic dysfunction of brain parenchyma, as discussed in Organic encephalopathies. Depression, myopathy, excessive daytime fatigue due to nocturnal sleep disorder, and systemic conditions (i.e., electrolyte disturbance, fluid overload, pulmonary insufficiency) remain in the differential diagnosis. Many patients with mild orthostatic hypotension present with symptoms resembling chronic fatigue and may not complain of the usual presyncopal symptoms.

Cranial neuropathies most commonly result from lupus vasculitis affecting the vasa nervorum supplying the involved nerve. Although optic neuritis (painful or painless subacute loss of visual acuity, usually accompanied by visible inflammation of the optic nerve head) and retrobulbar neuritis are most common, any cranial nerve may be affected. Imaging studies can exclude compressive lesions that result from opportunistic infection, tumor, or aneurysm.

Mononeuritis multiplex results in patchy, asymmetric weakness, sensory loss, or both in the distribution of multiple peripheral nerves or roots. Clinical distinction between proximal myopathy and polyradiculopathy or proximal mononeuritis multiplex may be difficult, requiring electromyogram (EMG) or nerve conduction velocity (NCV) studies or even nerve and muscle biopsies for an accurate diagnosis.

I know its a lot of technical information to absorb.  It was a lot for me to digest  when I first started researching lupus.  I have a good chunk of these issues.  I have had to adjust and change the focus of my life to accommodate my disease and the limitations it has placed on me.  But please do not think that I am not LIVING.  I make the most of my days.  Love those important to me.  I have learned to value the precious moments we create for each other.  If I can help someone who isn't sick, learn the value of creating priceless moments with those they love...then I have accomplished something great.





Friday, April 1, 2011

Walk in my shoes...



Having issues with my eyes and it was easier to "say" this post rather than type it.


Thursday, March 17, 2011

Get It Right




What have I done? I wish I could run
Away from this ship goin under
Just tryin to help out everyone else
Now I feel the weight of the world is on my shoulders

What can you do when your good isn't good enough
And all that you touch tumbles down?
Cause my best intentions keep makin a mess of things
I just wanna fix it somehow

But how many times will it take?
Oh how many times will it take for me
To get it right
To get it right

Can I start again, with my fate again
Cause I can't go back and endure this
I just have to stay and face my mistakes,
But if I get stronger and wiser, I'll get through this

What can you do when you're good isn't good enough?
And all that you touch tumbles down?
Cause my best intentions keep makin a mess of things,
I just wanna fix it somehow
But how many times will it take?
Oh, how many times will it take for me to
Get it right?

So I throw up my fists, throw a punch in the air,
And accept the truth that sometimes life isn't fair
I'll send down a wish and I'll send up a prayer
And finally someone will see how much I care

What can you do when you're good isn't good enough?
And all that you touch tumbles down?
My best intentions keep making a mess of things,
I just wanna fix it somehow
But how many times will it take? Oooh
How many times will it take for me
To get it right, to get it right?

Wednesday, February 2, 2011

Week 3: Surprise...Surprise!!

Well, imagine my surprise when I stood on the scales to see that I had dropped a few pounds...well...more than a few pounds...can you say 24?


Yes...I know.  Shocking.  Well...I would venture to guess that the tinkering with my blood pressure medication has helped with the water retention in my legs and feet...and apparently in my torso and hands and face.  Who knew?  I didn't.  Just didn't think there was enough water to be the equivalent to a small child. :P


Also, I didn't know my thyroid was sputtering out a batch of hormones which wasn't playing nice with my T3 and T4 medications.  So...means I need a scan of my thyroid to see what's going on and to rule out any nodules or tumors. Personally, I would prefer to not feel like I am on speed and coming out of my skin...or like I have ADHD. 


Due to the ice storm this week, my walking has been limited...for fear of my extreme klutziness and how easily I would break my bones.  I did do 3 sets of 10 of my bicep curls, tricep extensions and dumbbell squats along with 50 wall pushups.  I even spent 30 minutes dancing to pop music.  


I have also cut my Coca-Cola intake down from my normal 32oz drink with ice to just a 12oz can once a day.  My water intake has increase over 72oz.  (I hate the taste of water...well...the lack of taste...but I am trying.)  I have also been very deliberate on not cheating and taking a nibble of garlic bread or a bite of a sugar cookie.  The wheat allergy & gluten sensitivity has finally become too dangerous...and my need for comfort food will have to find another way to deal with stress.


My life is full of so many changes...things that I must do...for me -- so that I can be a better, healthier "me"...for my kids -- so that I can be around a long time for them...and for my Imzadi -- so that he knows how much I love him...that he is all that I need and want...that he is enough for me...that he is my safe harbor and haven. 


Things have been strained between he and I...in large part to a failure in communication between us.  He's dealing with a lot of stress due to things surrounding money and job situation...he's been shutting me out and trying to deal with it all on his own...thinking its not my business to share the burden with him or help him deal with the stress...and probably trying to protect me from it as well.  I just wish he would realize that when two people are in a long term relationship that they face these things together.  When you say vows, there isn't anything in them that says...I will handle my burdens alone.  It's all about how you are stronger as partners in life than as single entities.


Now, I am not saying he is to blame in this breakdown of communication.  He knew how stressed I have been at my work with all the craziness that has been going on...with the stress my body has been going through from all the medical issues.  He's actually being quite loving in trying to protect me.  He also needs to realize that if I ask, he needs to share because keeping things from me bears the hallmark of "SECRETS" and as everyone knows...no relationship survives secrets...ever.


Okay...back on track to my changes...my positive changes this week to add are going to be ways to improve my work.  I will continue with the other changes -- the walking, the stairs, the weight training and the dancing. Please share your positive changes with me.  I want to hear them.

For the man I love....

I wanted to embed the video but the channel on YouTube wouldn't allow embedding.  So the lyrics are posted below...


http://www.youtube.com/watch?v=GP7zpdwo3Xo&NR=1


This time, This place
Misused, Mistakes
Too long, Too late
Who was I to make you wait?
Just one chance
Just one breath
Just in case there's just one left
'Cause you know, you know, you know I love you

[Chorus]
I have loved you all along
And I miss you
Been far away for far too long
I keep dreaming you'll be with me and you'll never go
Stop breathing if I don't see you anymore

On my knees, I'll ask
Last chance for one last dance
'Cause with you, I'd withstand all of hell to hold your hand
I'd give it all
I'd give for us
Give anything but I won't give up
'Cause you know, you know, you know I love you

[Chorus]
I have loved you all along
And I miss you
Been far away for far too long
I keep dreaming you'll be with me and you'll never go
Stop breathing if I don't see you anymore

So far away, so far away
Been far away for far too long
So far away, so far away
Been far away for far too long
But you know, you know, you know I wanted, I wanted you to stay
'Cause I needed, I need to hear you say that I love you (That I love you)
I have loved you all along
And I forgive you (And I forgive you) for being away for far too long

So keep breathing 'cause I'm not leaving you anymore
Believe it
Hold on to me and never let me go
Keep breathing 'cause I'm not leaving you anymore
Believe it
Hold on to me and never let me go
Keep breathing
Hold on to me and never let me go
Keep breathing
Hold on to me and never let me go

Sunday, January 30, 2011

Week 2: (Day 12) I love how God works...

I love how God works.  My doctor's appointment Friday didn't go as I expected it to.  My blood pressure was far too high and my asthma is not behaving.  Turns out its part of an allergic reaction to something I've been eating.  Although, Friday night I didn't know that.  In fact, I let myself get depressed and I had a massive pity party for myself thinking that it was just one more thing to add to my list of "broken" things.


On one of the forums I participate on, a young woman I know, posted early this morning about how she is considering suicide.  I had been in such a deep despair Friday night, I immediately felt a connection to her despair, although I would never consider suicide as an option.  I was able to reach out to her and let her know she wasn't alone and that she needs to find those happy moments and hold on to them and make more happy moments.  Others on the board rallied around her too.  I'd like to think we helped save a life...I just know that if I hadn't been so down and upset I might not have recognized the tone of her post.


My work has been massively stressful and we were pretty certain that was the main culprit for the high BP.  My work's environment has changed dramatically and we are losing a lot of good people because the "air" is filled with distrust and hostility.  We have had 5  full-time faculty members leave or give notice in the past 7 months and 6 staff members.  13 people in 7 months.  That is an alarming number to me...but it also is a huge red flag.  When people start jumping ship in large numbers, it may be time to re-evaluate staying.


I am trusting God to show me what he wants me to.  He will lead and I will follow.


As for my walking since Wednesday...averaging just under 10,000 steps.  The broken toe is not as painful today so I could do more.  I did only flat walking no steps or stairs...the pressure on the foot is just a bit more than I can take and probably isn't so good on the healing process.  Did my 3 sets of 10 each, bicep curls, tricep extensions and dumbbell squats with 10lb hand weights.  Also did 50 wall push ups. 


I think the positive change that I will be focusing on for the next 21 days maybe work related...but this change I am currently working on...will stay in the mix. :)


Please send me your positive changes...email or post a comment.

Wednesday, January 26, 2011

Week 2: (or Day 8) I think I can ...I think I can ...I think I can...

So...I had a teensy run in with a dresser leg and my toe.  The leg won. >.<    I got 8394 steps in today...kinda painful steps. I walked for 15 minutes today...and no stairs up...cause well it hurt.  I am seriously thinking that I am the little engine that could.  I keep telling myself that I need to keep chugging on.  I am pretty sure the toe is broke which also means that I need to baby it.  ARRRGGGHHH.  I want easy on something please.  


Work is most stressful and I wish I could figure out a way to make things better.  I just don't see a way to fix the situation.  I have never given up on anything...and I have to admit that I am feeling like that may be only option.  I keep praying to God to lead me where I need to go and show me what I need to do...to give me the words I need to say to keep the situation cool and calm.


Only positive I can say for today...my metal smithing class was AWESOME!!!  I have all my projects finished so far and I can prep my artwork for approval for my Letter project.  I am very excited.  I am thinking of a frog sitting on a log.  I have to see what clipart I can find since I suck at freehand drawing. I will try to get some pics together of the things I have made so far. 


Send me messages or leave a comment.  I want to know about your positive changes. 

Tuesday, January 25, 2011

Day 7 - Tired puppy

9221 steps today...30 minutes of walking down stairs...walked up four flights of stairs.  My knees are hating me right now...I might need to cut back on the walking up.  The walking down doesn't hurt as much but the walking up....excruciating...maybe do only 1 flight twice a day and just see how that goes.

Eating oatmeal with cranberries, raisins and currants for breakfast...lunch was an unwich from Jimmy John's...no mayo or dressing...turkey, lettuce, tomato, cucumber and onions with oregano and yellow mustard!!  Dinner...meh...not hungry...did drink 64oz of water and 20oz coca cola.

I am one tired puppy.

The stress levels at my work are at an all time high.  I have an employee who is leaving next week.  So, I need to start a job search but I do not know when my boss will have human resources post the job.  I would like to get someone fast, but there are questions about how to best allocate the work.

I wish things could be easy...and that people spoke the truth with out any agenda...I wish that trust was easily given and earned and not so easily lost or misplaced.  Then again...I wish I could hit the lottery....but you have to buy a ticket to win.

Time to change my attitude....life is what we make it.  Things will improve. Time for bed...

Monday, January 24, 2011

Day 6 – Oh my…what did I get myself into?

I did 10,938 steps today.   I walked down five flights of stairs for fifteen minutes riding the elevator up to the top floor to walk back down again…did it three times.  The last time up I took the elevator up to the 2nd floor; I stopped to get a bottle of water and then walked up the last two flights to my floor.  (Our building has a basement, in case you are wondering how I got “five” floors out of that. :P )  I had a meeting with my boss today, so I walked down and up from the third floor from that.  My knees are screaming at me so I will not walk up anymore today. 

I have been thinking about what other positive changes I can do in my life.  Making jewelry gives me such joy and passion for living.  I think I need to focus on how to make that be my “CAREER” full-time.  I am currently taking a metal smithing class at Herron School of Art.  I see such great potential for the things I can create now.  I haven’t been this excited about anything in a very long time…well…except for the love of my life…my Imzadi….oh yeah…and my kids! :P

I want to hear from you all!  Tell me about your positive changes…leave a comment…send a message to my email  (lupine.butterfly@gmail.com).   I just want to know so I can cheer you on!

GO MAKE A DIFFERENCE! ENACT A POSITIVE MOMENT FOR SOMEONE! BE THE CHANGE!


Sunday, January 23, 2011

Day 5...Resting today...not by choice

So...nothing like struggling to breathe in the wee hours of the morning only to realize that I am having not only an asthma attack but a full fledged allergic reaction.


I hate going out to eat.  We tried a new restaurant last night and I quizzed the chef and made him aware of all my numerous allergies.  He told me what dishes were safe and I ordered them.  Imagine my surprise when I find out that he cooked the flipping potatoes in CHICKEN STOCK.   So...the whole...I can SAFELY eat only turkey and pork fell on DEAF EARS.  I will never go back to that restaurant.  The pork chops were the best I have ever eaten...fork tender...thick sliced...the flavor was amazing.  BUT...that was a mistake that I can't afford to have happen again.


No work out today...or tomorrow...the hives haven't fully pulled in and I am still a little wheezy.  I freaking hate using an epipen or taking a ton of benadryl.  My face is swollen on the left side.  I feel like Quasimodo. 


I am making sure to drink plenty of water...and while I am not working out...I am doing slow stretches while sitting in bed.  Flexibility is important as is range of motion.  So it's not a complete loss.


Tell me your stories...leave a comment...send me an email at lupine.butterfly@gmail.com.

Saturday, January 22, 2011

Day 4 - Meeting my first Powerblock

My first meeting with the free hand weights...

Powerblocks are supposed to be the best style of free hand weights because of the versatility in weight amounts.  http://www.powerblock.com/Sportseries.php  This is the type of Powerblocks we have.  I am interested in trying kettlebells

I started with 15 bicep curls, 15 partial dumbbell squats...my knees didn't like going too deep and 15 tricep extensions...and 25 wall push ups.  YIPPEE!!!

The smallest weight to pick up is the ten pound weight.  I am thinking this isn't the best beginner level weight to use for someone with arthritic hands.  "Please do not let me drop this on my foot!"  (Mind you...I found out after I did my 3 sets of 5, that they could be made into 5 pound weights...I'm such a noob!)

I know it doesn't sound like a lot...each one was painful in the muscles and joints.  I will only do this two times a week until I can see how the lupus reacts to this.  It's something that my rheumatologist has given partial approval on. I need to build muscle and strengthen the bone by doing the weights...but I need to not trigger a flare.

I can tell you my hands are screaming at me from just gripping the weights.  I think a hot soak will help that for now.  Tomorrow...dancing for cardio.  


I would love to hear from you on what changes you are making.  

Friday, January 21, 2011

Day 3 - Comedy of Errors

Well...I managed to get 11, 097 steps in today.  =)


So...I left for work on time and was even going to get there early.  I get a call saying that there was car trouble at home and that I needed to turn around and come back.  Ok...I was 30 minutes out from home...I turned around and started back.  I get within 3 miles of home when I get another call telling that the car works now and I'm not needed.  HEAVY SIGH.  I turn around again and head back to work.  At this point I am 20 minutes late for work.  I get there and head to the testing center to drop of tests for a faculty member.  I leave my vehicle sitting in the fire lane with flashers going so I can run in and run back out.  I come out and try to start my truck.  DEAD.   The battery died.  


At this point, I am thinking that the universe is telling me I need to head back home and hibernate under the covers.  I call parking services to have them come give me a jump so I can head back to the office.  They tell me I need to be standing outside waiting for them to arrive.  HUH?!  It's minus two degrees outside and my truck isn't working.  It took them about 15 minutes to get there and another 10 to get me running.  I couldn't feel my feet or hands.  BAH...who needs them anyway.


I finally get settled in at my desk and the next round of things failing to work right started.  I think I had gremlins following me all day.  Three computers and a telephone.  I bought a lottery ticket because this much bad luck only means one thing...when good luck comes back to me....BOOYAH BABY!!!


Ok...so....I walked up two flights of stairs today only one time, but I did get to run all over my building just like...

CHICKEN  - HEAD = ME


Sigh....I will use free hand weights tomorrow to do some strengthening and toning of the arms and even attempt a few modified squats to be gentle on my knees.  


Hope you all are thinking about making small, positive changes in your life.



Thursday, January 20, 2011

SIGH....Day 2....

So...life is all about change.  All change can be positive if looked at in the right light.  That is what I am trying to do for me.  Make positive changes even if they are unpleasant.

Yesterday, I walked up two flights of stairs.  It was slow and painful...but I still did it.  =)

Today...meh...changes hit like a ton of bricks.  Lots of things happening at work that I won't go into here...at least not yet.  Suffice it to say, that I had no moment to myself for anything other than "chicken - head = me".

But I am determined to at least say, I got in 8472 steps today. =)  Then again, that is about average for me.

SO...tomorrow.  I have high hopes for tomorrow.

Wednesday, January 19, 2011

Making Small Changes...Day 1

One of the most difficult things to do when you have lupus is to make changes to your habits that work to keep you from hurting or expending too much energy...to fear the triggering of a flare...needing more meds to calm it down.  I get that.  Hell, I've pushed myself too hard just to prove I could still do something and then paid for it with a week of down time.  There is nothing wrong with adapting and making those small changes.  But what you must never do is give up completely.  There are some changes that we must make to improve our lives....our quality of living.


I am at a crossroads in my life...not fully happy with where I find myself...what I want for myself.  I see the proverbial fork in the road and I know I must take the one less traveled. Ah...Robert Frost...a wonderful poet...he stated it well in his "Road Not Taken" poem. 


"...I shall be telling this with a sigh
Somewhere ages and ages hence
Two roads diverged in a wood, and I
I took the one less traveled by 
And that has made all the difference."


Every choice we make is the fork in the road...albeit some are very tiny forks and others are gianormous...consider doing the difficult choice, standing up for what is right just because it is the right thing to do....because being happy is truly important...because love is more than enough...WAY MORE THAN ENOUGH.


Today is the first day of my life!  I am ready for change.  I have the the goal to make one change every 21 days.  The reason for every 21 days...apparently that is how long it takes to make something new become a habit.  :) 


I will spend 15 minutes walking stairs twice a day during my days at work.  The bigger part of this goal is to be able to walk up all five flights of stairs by the end of the 21 days.  This should be enough to not aggravate my lupus or arthritis in my knees and hips while still giving me the benefit of strengthening my legs and toning my butt!!!


I will keep you all posted on my progress!