Tuesday, June 29, 2010

I am more than my book cover...

I am a mother...a wife...a daughter.  

I have dreamsgoals and desires.  

I am a good friend.  

I am a student and a teacher.  

I am a supervisor and an employee.  

I am a servant, and a leader.  

I smile...laugh...cry.  

I love with all of me.  I am passionate, feel deeply and care immensely.  

I am young and old.  

I am funny and smart.  

I am beautiful and radiant.  

I am sick and broken.

I have Lupus.

I am everything and more.  

I am worth loving and getting close to.  

I am worth all the crazy weirdness that I bring to the world.  

Because I make life more...more unpredictable and spontaneous...more full of love and laughter...more enjoyable...more alive. 

Tuesday, June 22, 2010

Summer's Little Setback...

Imagine my surprise waking up yesterday morning with drool coming out of my mouth and not being able to talk without slurring...then my surprise when the light killed my eyes and the alarm clock sent electric shocks into my ear. Well poop.  Looking in the mirror I saw the side of my face drooping.  It felt on fire and screaming with electric jolts.  I recognized the face droop...Bell's Palsy...it's not the first time I have had it...and unfortunately I also recognized the searing screaming pain...the early signs of shingles.

GEE...Ramsey Hunt's Syndrome...again. Can't I do anything simple and easy.

I know the drill...get in to the doctor.  Get my steroids increased, add an antiviral and pray the gabapentin works fast enough on the excruciating pain.  It takes three days to build up the level of gabapentin before it really hits the pain. AND the best part here (dripping with SARCASM) I have to come off my immune suppressing/chemo meds until this resolves (hands the lupus a FREE PASS to run rampant).

I feel like I am losing the fight.  I am angry and scared and in pain.  I want to understand and see how I am supposed to learn from this.  I am tired of being sick.  I am tired of hurting and seeing my family and friends hurt for me.  I want simple...normal...healthy...even if it is only for a day or an hour.  That would be a priceless gift.

Wednesday, June 16, 2010

My Two Lupie Feet...

Having lupus lots of things go wrong in lots of places.  My feet ache all the time…from the edema, skin rashes, nerve issues, muscle/tendon/ligament issues and joint pain. 

Many foot problems may occur in lupus patients and can involve skin, joints, bone, blood vessels and nerves.  Things like:

Ø    Tendonitis
Ø    Myositis
Ø    Arthritis
Ø    Vasculitis/Peripheral vascular disease
Ø    Osteonecrosis
Ø    Peripheral neuropathy/CNS involvement
Ø    Nail dystrophy/Nail fold problems
Ø    Chilbains
Ø    Raynaud’s phenomenon
Ø    Hypersensitivity

The 'lupus foot' has been described as having similar abnormalities to those found in the hands.  Things like:

Ø    Paratendonitis
Ø    Synovitis
Ø    deformity and subluxation in the toes and metatarsophalangeal joints (MPJs)

'Lupus foot' has been found in over 80% of patients with Jaccoud's arthropathy of the hands although articular symptoms in the feet have been reported less frequently than in the fingers, knees and wrists. Joint problems can lead to hallux valgus, forefoot spread and clawed or hammered toes. A high incidence of bunions and calluses has been found with these deformities along with associated pain and tenderness. Foot deformities may not be regularly reported since they are hidden and are possibly less disabling when compared to hand or finger deformities though they cannot always be attributed to lupus since they are also widespread in the general population.

Now, it would be a mistake for anyone to simply dismiss the 'lupus foot' as a common structural or arthritic problem.  Especially, if you take into consideration, the skin lesions which man result can be compounded by some of the dermatological complications of lupus.  Add to that, any neurological and circulatory problems such as Raynaud's phenomenon and vasculitis which are very common in lupus patients and you now have the possibility for serious consequences such as gangrene.  For many of us, steroid therapy further increases our risk of infection and peripheral ulceration which makes any lupus patient a strong candidate for 'high-risk' chiropody care.

Musculo-skeletal problems include painful tenosynovitis and tendonitis possibly leading to more problems than swollen joints. Tendon rupture, particularly in weight bearing areas, has been reported - usually as complication of local or systemic corticosteroids. Plantar fasciitis is common and in some cases may even be a prodrome of lupus. Hypersensitivity of minor skin and nail lesions is frequently found. Peripheral neuropathies may occur from transverse myelitis and mononeuritis multiplex due to arteritis possibly causing major loss of foot function, although this is rare. CNS involvement is more common with the loss of muscle co-ordination, chorea, hemiplegia or sensory problems. Myalgia has been seen as a result of myositis in 50% of lupus patients and gait problems can arise from muscle atrophy and weakness around the pelvis and in the upper leg.

Two thirds of lupus patients have one or more radiographic abnormalities in their feet, mainly subluxation (37%), diffuse osteopenia (29%) or cystic changes (20%). Joint involvement is usually symmetrical often presenting in the knees, ankles, MPJs, or proximal interphalangeal joints (IPJs). There is usually tenderness and sometimes swelling, although joints often ache severely without objective signs of inflammation. Synovitis with effusions is common and deformity is often of the reducible type found with Jaccoud's arthropathy although periarticular calcification and calcification of digital joint capsules has been noted. Repeated synovitis may cause a deviation and subluxation of the MPJs, with concomitant plantar pressure lesions, similar to those found in rheumatoid arthritis. Foot problems tend to be worse in patients with severe hand problems and the severity increases with time. There is an increased risk of osteoporosis from the disease process and from steroid therapy and there is a correlation between osteonecrosis and Raynaud's phenomenon. Lower limb function is at risk from avascular bone necrosis, commonly in the femoral head but also in unusual sites such as the talus, metatarsals or, occasionally, the patella.

It’s estimated that 25% of patients have nail changes, often onycholysis, or loosening of the nail. Nail growth may be slow and atrophic with pitting, leukonychia, or complete loss of the nails. Periungual erythema with telangiectasia can lead to skin atrophy around the nail and thickening of the nail plate with transverse and longitudinal ridges - often associated with acute phases of disease or with Raynaud's phenomenon. It has been suggested that the pattern of nail capillaries might demonstrate an evolution from undifferentiated to a specific collagen disease. The lupus patient often has tortuous, meandering capillaries with a prominent subpapillary plexus. Onychophosis, callus formation in the nail sulcus, is a common and painful complaint but seems especially tender in lupus. Onychophosis can lead to an ingrown toenail as the patient tries to cut down the side of the nail in an attempt to relieve the pain, causing a spike or wedge of nail to become embedded in the nail sulcus, which causes further complications such as infected hyper granulation tissue.

Corns and callus due to mechanical stress on dysfunctional feet with joint subluxations and deviations form a large proportion of the work in routine podiatry clinics; however, this hyperkeratosis may be unusual due to disease complications in the lupus patient. The pain reported is often disproportionate to clinical observations. Hyperkeratotic papules have been described as 'exquisitely tender' and lesions vary from inflamed weeping lesions to anhydrotic fissures. The pain can be severe and difficult to reduce with analgesics. Thrombocytopenia may cause hemorrhagic bullae and transient bullae may have caseous discharges. Purpura, discoid plaques and erythematous macules or papules may be present and, unusually, massive hyperkeratosis with an underlying caseous layer has been described. Atrophy of the epidermis, degeneration of the dermal-epidermal junction, dermal edema and inflammatory infiltrate and fibrinoid degeneration of the connective tissue have also been found.

Vascular complications seem to cause the most concern in the lower limb.  Things like:

Ø    Teliangectatic lesions
Ø    Dermal vasculitis
Ø    Thrombophlebitis
Ø    Raynaud's phenomenon
Ø    Livedo reticularis
Ø    Chronic ulcers
Ø    Peripheral gangrene
Ø    Dermal infarcts (similar to those in Degos Disease or Atrophie Blanche)

I would like to state that major ischemic problems are generally considered a rare occurrence. Chilblains are common and it has been suggested that DLE patients with persistent chilblains may be at risk of developing systemic lupus. The reported incidence of Raynaud's phenomenon varies but is probably about 15-20% although Raynaud's disease has been reported to precede lupus in 30% of cases. This digital vasospasm may have an inflamed, cyanotic or ischemic presentation and is frequently associated with chilblains but can lead to gangrene and amputation if not treated soon enough. The risk of digital necrosis is further increased by the tendency to form thromboses and embolisms due to hyper coagulation and clotting agents released due to arteritis and venulitis, in spite of thrombocytopenia. Thrombophlebitis has been found in 10% of patients and deep vein thrombosis can also be a recurrent problem. Vasculitis commonly affects small blood vessels, arterioles and post-capillary venules, forming papular, erythematous and purpuric lesions. This may also lead to splinter hemorrhages and small tender infarcts particularly around the nail fold and in the lower leg.

Slowly healing ulcers may form over areas prone to pressure or trauma such as the malleoli, a problem possibly complicated by edema from congestive heart failure, renal problems or prednisolone, or from compromise to the immune potential due to leucopenia, thrombocytopenia, hemolytic anemia or depressed complement level. The risk of infection also rises sharply when steroid doses are greater than 40 mg per day. Macro vascular occlusive disease has been reported in a few cases leading to gangrene and lower limb amputation or arterial bypass, but this is rare.

The key aim in the treatment of the feet of any high-risk patient must be prevention of serious complications as well as reducing pain and disability. It is likely that the risk of ulceration will be increased several times if impaired circulation co-exists with foot deformities. Orthopedic and neurological problems will lead to gait abnormalities, shoe fitting problems and increased pressure on the feet. Increased sensitivity will cause more pain, whilst decreased sensitivity may reduce the patient's awareness of potential problems. There may be localized increased ground reaction forces, a decreased ability to accommodate these with increased dermal stress resulting in the formation of corns and calluses with the risk of ulceration compounded by decreased circulation and tissue viability. Regular assessment of the feet is, therefore, important with advice to the patient about daily hygiene and inspection. There is no need to cause alarm if the lower limb is not affected by the disease but if risk factors become apparent podiatric referral becomes essential.

Treatment may involve aseptic reduction of corns and calluses with padding or strapping to decrease stress on the affected area or even splinting to stop motion in the toes or feet. Advice on footwear or possible provision of surgical shoes with insoles may be called for. Correct biomechanical control is essential and orthotics may be prescribed to reduce calcaneal eversion as a result of muscle imbalance or deformity. This may prevent or reduce compensation and wear on other joints and possible traumatic vasculitis leading to necrosis. Correct nail care is also vital and periungual problems often need skilful and sensitive treatment. Partial nail avulsion may be an option where there is co-existing nail involution or cryptosis but this may be contra-indicated by poor tissue viability leaving conservative methods of nail and hypertrophied skin reduction with nail-sulcus packing as the options of choice combined with footwear and home-care advice.

The treatment of podiatric problems obviously needs to be wide ranging and will frequently call for a multi-disciplinary approach with professionals such as wound care nurses, physiotherapists, podiatrists and orthopedists, monitored by the specialist in connective tissue disease. The risk of serious podiatric complications would suggest that all patients with lupus could benefit from referral to a chiropodist or podiatrist.

Tuesday, June 15, 2010

A Day in My Life...

A day in my life…

I peek through sleepy eyes at the alarm clock that says 3:14am.  (sigh) I get up to go potty.  Well…I inch slowly to the foot of the bed as it is closer to the bathroom and means I can stay flat longer not expending as much energy.  I pray that I can stand and not need to wake Keith.  Feet dangling off the foot of the bed and realize that I can’t get up. I reach up and touch Keith’s back and whisper “Honey”.  He knows the drill.  He rolls off his side and meets me at the foot of the bed.  He pulls me up on to my feet and helps me to the bathroom.  I finish and he helps me back to bed.  It’s 3:25am.  (sigh) Stupid prednisone. 

Now I am wide awake.  I lay on my back looking up at the ceiling wondering how long before I can fall back asleep.  Keith starts snoring softly almost immediately.  Keith shifts.  I glance up and look at the clock.  It’s 4:09am.  (sigh)  Okay.  I shift and turn to my left side.  It hurts like hell to move.  My left hip screams at me because I laid too long on it yesterday…but I sleep better on my left side than I do any other way.  I cry softly and close my eyes.  Sleep comes. 

(((SCREEEEECH))) I open my eyes and see the alarm clock read 6:00am. Didn’t I just close my eyes?  Time to start my day, so as I wake up, I am still exhausted.  My muscles ache.  My joints are stiff and very painful.  My hands feel puffy as I stretch them.  GAH…my face feels like it is on fire…my hip is screaming get off me!  I continue to stretch testing the waters to see if my weekday is going to be possible.  Hmmm…stretched ok…not too much pain other than the hip…I can do this…DAMN I need to go potty.  Let’s see how difficult it is to maneuver out of bed by myself as Keith has already leaped into his day full of energy.  WOOT! The EAGLE HAS LANDED!!!  My feet made contact with the floor and I didn’t fall down…at least not yet. =)

I wobble to the bathroom and open the door.  Keith has the bathroom all hot and steamy.  The heat helps warm my muscles and I can move a little easier.  I grab the curling iron and turn it on.  Damn my hands are really puffy and stiff.  Can I even hold the tooth brush?  I try to pick it up…that’d be a hell no.  Grab the Scope and swish.  That’ll have to do for now.  I head out of the bathroom to grab clothes…I’ve decided to get dressed.  So I grab the “breastplate” that I call my bra and wonder if I am ready to wage war with the clasps.  I make a few feeble attempts.  Command control…we have equipment failure. As if on cue, Keith gets out of the shower and sees my frustration.  Quick to my rescue, he takes care of my problem.  Guess I am not wearing anything with buttons on my top or slacks.  Buckle or lace-up shoes are definitely out of question…so slip-ons are my only choice.  BOOYAH! All dressed.  Well…let’s see if I can tame my hair. It’s 6:45am.  (sigh) Did it really take 45 minutes to do all this?  I use my curling iron to smooth the flippy ends of my hair.  Okay…maybe a head band or clip will help. It’s 7:00am.  Time to leave.  CRAP!  I forgot to take my meds. 

Hmmm…I’ve been standing in one place for 15 minutes.  Can I walk?  KNEES don’t fail me now!!  Baby step. Baby step.  I can hear the song now. 

“…Put one foot in front of the other…And soon you'll be walkin' 'cross the flo-o-or…Put one foot in front of the other…And soon you'll be walkin' out the door…”

So, I grab my pill case and take out the pills from the “morning” compartment…all 13 of them…and find my glass of water from last night to wash them down.  GAH!  Water sits so poorly on my tummy…boy am I going to hurl if I don’t get some Coke in me.  I pick up my purse and head slowly down the hall…reaching my right hand out to find the wall.  Since the repeated episodes of optic neuritis have left me peripherally blind in my right eye, I have to put a hand out or risk walking into walls, doors, tables…mystical creatures.

I open Gabe’s door and kiss him bye.  I turn to leave his room…my knees and ankles give out on me…and well…how to say this delicately…help…I’ve fallen and I can’t get up.  (sigh)  Now, my body is screaming in blinding, searing pain.  I try to call out to Keith and all I can do is sob.  Gabe wakes up and yells for Keith.  So…he helps me up and ushers me back to bed.  Gabe brings ice packs and the heating pad…and Heather’s laptop so I can email work to let them know that I can’t make it in.

I lay there feeling like a failure.  This used to be so easy.  Something I never had to think about.  Something that “normal” people do every day.  Something I miss being able to do.  Something I would give anything to be able to do again…without pain…without getting tired so easily…without being sick. I close my eyes for just a moment…and it’s now 1:00pm.  Huh?  I only just shut my eyes. (sigh) Guess I am kinda tired still.  OH GOD…my tummy…churning…I eye ball the bathroom door…can I make it…do I holler for assistance from Gabe…I start scooting toward the foot of the bed. Pain shooting everywhere…adding to the nauseous feeling I already have.  It seems like an eternity before my feet make contact with the floor…I can’t get up…”GABE!!!!!!”

My wonderful son comes flying into the room and knows that I am trying to get to the bathroom…he gently grabs my hands and helps me up…he stands behind me helping me steady myself and walk.  I barely make it in before the vomiting begins.  Gabe runs out of the room to get his sister, Heather.  Gabe doesn’t do well with me vomiting.  He tends to join me. (SIGH) Heather…my beautiful daughter…comes in…clips my hair out of my face and hands me a cold washcloth.  She says that I don’t look green anymore. We laugh…and then she says…that I am green with purple spots on my face.  Great…now I will look all bruised too.

Can this get any worse?  (SIGH)  Dumb question.  Of course it can.  Next thing I know, Heather is splashing cold water on my face to help me wake up from passing out.  OUCH.  My cheek hurts. Who knew the floor was so hard and that it could leap up and hit you in the face.  (points to self…I do now!) 

Gabe comes back in and helps Heather get me back to bed.  Armed with Heather’s laptop, lots of pillows, TV/DVD remotes and a LARGE glass of Coke…I settle in to try to relax.  Heather brings me a large bowl…just in case. She’s going to make a great mom.  I still haven’t eaten yet.  I don’t feel like eating.  Tummy hurts and is very queasy.  I ask Heather if we have rice.  She nods and runs to get me some.  Since I started taking the immune suppressing meds in high doses, she started keeping rice cooked in our rice cooker because rice is about the only food I can keep down. Gabe walks in with a small bowl and hands it to me.  A pat of butter and two tablespoons of sugar…ah perfect.  He sits with me just watching TV with me waiting for me to finish…to make sure I don’t need anything…to make sure I am okay.

We start talking about the video games he is playing this week and I blink…when I open my eyes again, Gabe is gone and so is the bowl.  It’s 5:30pm.  Ugh…I hate this fatigue.  I used to be so energetic and nearly hyperactive.  I was nicknamed the energizer bunny.  Gabe hears me moving around and peeks in.  He smiles at me and asks if I need anything.  My coke class has been refilled with fresh ice and there is a baked yam with butter sitting there.  My kids know me so well that they know about how long I crash for and what I want when I wake up.  I am so blessed.

Gabe and I sit there for a little while and once I finish my yam, he takes the plate in to the kitchen.  It’s already 6:30pm and I hear the front door bell and the door open.  Keith’s home. =)  He comes in and kisses me and can tell by looking at me that I had a rough day…he tells me how beautiful I am and then says I should probably take a nap before bed time.  That would be a HINT HINT…you look like tired crap and you need rest suggestion.  (SIGH) I ask him to hand me my evening meds, plus the pill bottle on top of my desk.  I take 17 pills…including my anti nausea med…now I will sleep all night…provided no one wakes me up after midnight.

Where did my day go?  Tomorrow will be a better day…at least I hope it is.

Wednesday, June 2, 2010

A Man's World...

Lupus is generally thought of as a woman's illness.  I have some interesting facts about Lupus and men.

Did you know???

Ø  1 prepubescent boy will develop lupus for every 3 girls.
Ø  1 teen male/adult male will develop lupus for every 10 females of the same age range
Ø  1 male over the age of 50 will develop lupus for every 8 females of the same age range

Did you know???

There is a higher prevalence in males with lupus for:

Ø  lupus nephritis
Ø  vasculitis
Ø  CNS involvement
Ø  drug induced lupus

Did you know???

These famous men had lupus:

Ø  The late, Charles Kuralt died in 1997 from lupus complications.  He was most noted for his “On the Road” segments on the CBS Evening News with Walter Cronkite and as the first anchor of CBS News Sunday Morning.
Ø  Former MLB Outfielder, Tim Raines was diagnosed in 1999 with lupus.  The lupus nephritis essentially ended his baseball career by 2001.  Fingers crossed for him being inducted into the Baseball Hall of Fame this year!!
Ø  Our favorite Martian, the late Ray Walston died in 2001 from lupus complications after a six year battle.
Ø  Singer, Seal (hubby to Heidi Klum) has had Discoid Lupus since childhood.  He has numerous scars on his face and hair loss as a result of discoid lupus.  He does not have the systemic form.
Ø  The late Michael Jackson had lupus and vitiligo.

Did you know???

There is research possibly linking a gene in the X chromosome to lupus.  Since women have two X chromosomes and men one, this could be the reason so few men get lupus. 

Tuesday, June 1, 2010

Not Today...

Not Today...

I am many things...a mom...a wife...a daughter...a friend...an employee...but more than anything else...a woman with lupus.  I am an employee who is valued, competent and depended upon to get things done.  I am the "go-to" person to solve everyone's problems and fix them yesterday.  I let my batteries get completely drained over the past two weeks.  I pushed myself beyond my safety zone and far into the danger zone.  (Kenny Loggins' music from Top Gun)  

We are prepping for renovations here at my work and with getting 8 offices/cubicles of people moved and then 9 adjunct faculty cubicles moved and coordinating the relocation of 24 file cabinets, door security locks moved and security cameras relocated...and physically moving two offices, 19 tables, 40 chairs and putting tape grid lines on the floor of our conference room just so I can make sure that 19 out of 24 file cabinets find a temporary home...I think...just maybe...I kind of over extended myself...kind of used up all of my energy and then borrowed against the next months worth to get most of this accomplished.

The file cabinets will be moved in two days. This is all having to be finished while still getting all my other work finished too.  I am getting it done...but at a steep price.  People are asking me why my smiles aren't bigger and brighter...why there is no spring in my step...why are your cheeks pink?  (uhm...the correct color is MAGENTA!!) 

SO...Not today...I will not answer the questions.  Not today...I will not move or lift anything.  NOT TODAY...will I look in the mirror to see the butterfly blooming on my face.  NOT TODAY...will I parsel out my energy for non-emergencies.  

Lupus isn't here with me...NOT TODAY.