Friday, August 30, 2013

My Invisible Illness

 

30 Things About My Invisible Illness You May Not Know

1. The illness(es)  I live with is (are): Psoriatic Arthritis, Psoriasis, Asthma, Schizoaffective disorder, Sjogrens
2. I was diagnosed with it in the year: PsA 2005, Asthma,:2000, :SZA 1982, Sjogrens:2013
3. But I had symptoms since: PsA: 2003, Asthma: 2000, SZA 1980
4. The biggest adjustment I’ve had to make is: Staying at home after I could no longer drive
5. Most people assume:  I'm a hypochondriac and that every week it's something new.  Fact is: all the problems spring from these three things
6. The hardest part about mornings are: severe pain and stiffness.  I'm blessed that I do not work and most mornings am not rushed so I can ease into the day slowly.
7. My favorite medical TV show is: I never watch TV
8. A gadget I couldn’t live without is: a great Jar opener I have--it will open anything
9. The hardest part about nights are:  Waking in pain and stiffness.  I have to get up and walk around a while several times each night.
10. Each day I take __ pills & vitamins. (No comments, please)  Not sure.  At LEAST 24 pills
11. Regarding alternative treatments I: I eat a vegan diet....try to be as healthy as possible in what I eat.
12. If I had to choose between an invisible illness or visible I would choose:  They both suck
13. Regarding working and career:  I miss my job.  It was hard to admit I will never be able to work again.
14. People would be surprised to know:  How severe my pain is.
15. The hardest thing to accept about my new reality has been: the isolation.  Every one is busy; too busy to visit or call me.
16. Something I never thought I could do with my illness that I did was: learning to give myself injections.
17. The commercials about my illness: are laughable.  The golfer who has PsA only has it in one hand a little bit....so people assume since he's still golfing , that the illness is no big thing.
18. Something I really miss doing since I was diagnosed is: Driving.  And doing my art work
19. It was really hard to have to give up: Driving.
20. A new hobby I have taken up since my diagnosis is: restarted knitting.  But am finding it hard
21. If I could have one day of feeling normal again I would: go running. or better yet: roller blading
22. My illness has taught me: to be more patient with myself and with others
23. Want to know a secret? One thing people say that gets under my skin is: "Oh, you look so good! You must be feeling better!
24. But I love it when people: Understand that hugging and shaking hands is painful, so they back off.
25. My favorite motto, scripture, quote that gets me through tough times is:  "There is no God like the God of Jeshurun who rides the winds to help you, majestic through the skies. " Deut 33: 26
26. When someone is diagnosed I’d like to tell them: Learn as much as you can and get aggressive help immediately.  That is when the meds work the best, as soon as you are diagnosed.
27. Something that has surprised me about living with an illness is:  That it never goes away.  There are no "good days"
28. The nicest thing someone did for me when I wasn’t feeling well was: Called me and said she was going out to the stores, did I want to come with her?  It was a wonderful day.
29. I’m involved with Invisible Illness Week because:  I'm tired of being invisible.
30. The fact that you read this list makes me feel: hopeful. 

Thursday, August 29, 2013

Smoothie Recipe

I just have to share this.....This is my new favorite breakfast. I bought a pack of baked and mashed sweet potatoes (they also have mashed butternut squash). I use about a half cup of that, two frozen bananas, cinnamon, real vanilla--1 1/2 tsp.... some kind of sweetener - I used stevia but maple syrup (the real kind) would work very well also. I put in about 2./3 cup of almond milk and today I put a handful of alfalfa sprouts (home made...the kind you find in the store are full of e coli.) and blend it all up in a high speed blender. It is a nutritious, delicious breakfast.

Wednesday, August 28, 2013

Worries and Waiting

Today I've been stressed...and I've been at peace...."Not as the world has" is the peace I've been given.  My mom is back in the hospital...she's literally spent more time in the past years as an inpatient compared to being at home.  She is not doing well and I would ask you to please pray for her.  I''ve spent today trying to get a ride to the hospital to see her.  To no avail.  I guess it wasn't meant to be.  I keep thinking "What if this is the last chance I have to see her?"  That's a sad thought...and one that keeps going round my head.

And then my mom told me of a problem my dad has been having that she feels may have been caused by a stroke.

And my husband is not well either ....nor is he taking care of himself.

I don't know what to do about this....because all of it is in God's hands - not my own.  And this fact may be my only hope...my only respite....my only rest..my only hope.

The biggest prayer I have been praying is for me to make it to heaven's doors before the rest of my family.  I think every one has been steeling themselves to that possibility for years now....I feel like it would not take much for that to happen and that they could handle it because they been thinking of it for so long.

As I laid here. I talked to Jesus and asked him to just have the grace and the strength to just make it through today...in terms of giving me strength and peace.  For me?  I'm done.  I've had enough and am crying "Uncle"  -- just make it stop Lord. I do long for heaven...but I know that to get there I have to serve the years of this life sentence until the Lord God gives the word.  "come"....It does no good to think of suicide...I think I've been cured forever from acting on a death wish...because God has proven to me that attempts at suicide or not...NOTHING will get me to the end of my life without the father's say-so.

(later)  after a time in prayer, my anxiety lifted...and that without an Ativan.

I just got home ---a friend of mine kindly took me to visit my mom (and then my dad also arrived)... It was good to see them both and I think my fears were alleviated a bit.  Especially regarding my dad. Turns out he HAD already seen a doctor and gotten a diagnosis...which was not a great one to have but certainly beats out a stroke.

Sorry for this long, rambling entry....just wanted to give you some insight into what's going on here

Saturday, August 24, 2013

Combing out the Tangle of Tragedy

I have been long on pain and short on energy this week.
Last night I had to cancel the dinner I'd promised my daughter to make for them....I could barely stand up.  I have to make it tonight.  I'd wanted to go the campfire at my pastor's house this week but making dinner will use up my last spoon (see  The Spoon Theory for explanation)

I apologize for talking so much about the PsA that so much limits my life.  I know it is not something that people want to hear about.  I'm supposed to Endure in Silence.  Or Be Brave and Suck It Up.  It is not cool to talk about this unless I am posting on a site that is specifically for use by those of us who suffer.  No one there will tell some one to "Get a LIFE" because there, EVERYONE would LOVE a LIFE.  Unfortunately it is just beyond our reach.  And to talk to people about how it feels to be an hour late and a dollar short is really  best done with people of similar troubles.  However.  This is my blog.  And I can say what I want here.  You don't have to read it if you don't want.  If it is too much misery to be swallowed at one time...then do what you have to do.

The point is:

  • I hurt
  • I feel left out
  • I feel forgotten...abandoned.
  • Did I mention already that I hurt?
  • I cannot have my choice in how I spend my day
  • I didn't sign up for this
Sorry for whining. I'm running short of courage.  I think about my future and I don't want to go where I'm being taken.  That's as far as this life is concerned.  Maybe this needs to be listed as well.

  • I have a future in heaven
  • God will more than reward me for what I've suffered here.
  • I will see the friends whom I've lost to death.
  • God will take away my pain.
  • I will be able to run and jump in those heavenly fields.
  • God will give me strength to get through my day
  • He will wipe away my tears.
  • I DID sign up for this 
 So this story, while presently a very sad tragedy will end in joy.  The other day I was reading a book and I told my daughter "I have to quit reading this...everything in this story is  a mess...a tangle of tragedy and it was stressing me to read the book....and I wanted to put it aside (Like many of you feel about me...and no, that's not paranoia...Many friends have had to shun me and go in other directions because my difficulties were too hard to bear. )

My daughter said to me, "But mom you're missing the joy that comes at the end when all the tangles have been combed out and all is well.  That's what books are about!"

I have to think about this.  People may put me aside....but they are then going to miss my joy---and the time when I meet my Bridegroom and am healed of all my diseases...It's the ultimate conclusion.  Folks...this is going to be one amazing HAPPY ENDING.  Stay tuned.....so that you can share my joy once I get to where I'm going.

Friday, August 23, 2013

From Rags to Robes



If  I had to pick one of God's characteristics that I most love and desire, I would pick his Mercy.  I so much deserve the fires of hell.  More than almost anyone knows how much I need that.  God has poured his grace over me once his mercy cleansed me.  The disciples were puzzled about  Jesus acceptance of a "loose" woman.  A woman that has committed the unspeakable.  The Pharisees nearby question  Jesus also.  His response?  "One man owed someone $3 and another man owed  $1,000,000...both were forgiven. Who loves him the most?"
 
 That's  me: the $1,000,000 lady.  

 And Jesus said elsewhere, when questioned about his choice of people to hang around with: Jesus replied  "I came for the sick ...Like a doctor receives the accolades  of those he had snatched  from the jaws of death...This sickest were the ones with the greatest debt of gratitude.
God's  mercy extends as far as the East is from the West.  He has bathed me in Mercy, rinsed me with his grace and the toweled me off with his Love... And soon. Very soon, I will be dressed in his righteous white gown.

Wednesday, August 21, 2013

An Invisible Illness: Psoriatic Arthritis


These pics are both of my hands, taken one year ago.  My hands are notably worse now but I don't have a good pic.


This week is a week set aside to focus on a group of sufferers who mostly go unseen.  Please watch the video posted above.  I wish I had a dollar for every person who told me, "Well it's good to see you out and about.  That must mean you are feeling better."  No.  It just means I was clawing my hair out with loneliness and decided to face the pain and exhaustion that come alongside "being out and about."  I understand that every person (ok  most people who) say the things that are listed in this video...are harmless, ignorant, and just trying to help but do not know how to help.

Psoriatic Arthritis ( sore-ee-aa-tic)  http://www.humira.com/psa/what-is-psa.aspx  I have two kinds of this disease.  I have symmetrical PsA and also Psoriatic Spondylitis which means that my spine is under attack as well and it is fusing itself together.  This is a very painful process and right now both my neck and lower back are fused which make movement difficult to impossible.

http://en.wikipedia.org/wiki/Psoriatic_arthritis

Typically this type of arthritis is destructive and painful but the prognosis is usually somewhat better than it is for people with RA (Rheumatoid Arthritis)...How ever the type I have is rare and is worse than most cases of RA because it has affected most of my joints..  I did not receive care early enough in  my disease to have a good outcome.

This arthritis has nothing to do with age.  Children can get it...and it can sometimes be fatal as it can attack the heart and lungs as well as the skin and joints.

 http://www.medicinenet.com/psoriatic_arthritis/page5.htm#what_is_the_outlook_prognosis_for_patients_with_psoriatic_arthritis

http://www.psoriasis.org/psoriatic-arthritis


Sunday, August 18, 2013

Are you a Liar with Good Intentions?

Yesterday I went with 6 other women to Lancaster County...home to many Amish people.  We went to Shady Maples Smorgasbord and ate til we were full.  I had a plan and I stuck to it, so I didn't do the damage I could have. However my scale this morning was NOT my friend.
I was in so much pain toward the middle our trip that I sat in the car for the last two stops....I used  my rollator walker and it was great to have a seat available when I got tired.  However at that midway point my pain levels were sky high and I couldn't have taken another step.   I came home and hit the bed, not waking til 7:30 this AM (which is late for me)

I was just thinking this morning of the verse on my wallpaper

Come to me all you who are weary and burdened and I will give you rest.  Take my yoke on you and learn from me, for I am gentle and humble in heart and you will find rest for your souls--for my yoke is easy and my burden is light.  MT 11:28-30

I really want to "learn of him"  I want God to incise my soul and spill out whatever is sinful and poisonous there.  Is God in the process of teaching me something? Something of his character and how mine needs to be conformed to his. Would I recognize it if God is at work in me?  Because honestly, right now I can't tell.

One thing that has spoken to my heart is the need for greater commitment to honesty.  I need to catch myself in the "little lies" I sometimes tell and recognize them for the evil they are. And you know what? Lies can look little or insignificant...or even noble....like the kind of lie you tell someone because you know they would be hurt or distraught by the truth.  That's the kind of lies I know I am guilty of telling.  It's important to be "humble in heart" when you have to drop those truth bombs...it's important to be gentle with the truth.  When I find myself in the decision stage...the place where I'm teetering from one side to the other in the act of deciding how much truth this person can handle...at this point I need to learn of him and to cry out to him for him to give me the right words.  And you know what? If you get your words from Jesus and trust him to work blessing rather that strife, He will do it!  He will use that situation to teach you and I and he will use those words to work some kind of strength and healing in that fragile heart.

And you know what?  When you've dared to speak a hard truth  God can begin a good work in the heart of your friend.  But what is so important here?  To speak with the humbleness and gentleness of Jesus.  To LEARN of him...because only then can the burden of truth be borne easily.

Have your way in me Jesus...help me to honor truth because you are the way the TRUTH and the life and by speaking truth I am honoring you Jesus.

Thursday, August 15, 2013

Needs, Wants, and Have to Haves

I know I "owe" you all an entry here.  HOnestly I would write more except that I am suffering from poverty of thought and poverty of speech. Both are symptoms of SZ. I used to have so MUCH going on in my head.  I could sit down and write an article based on any topic..  Now?  Not so much.
I can tell you things that I've done lately.  Like yesterday I went with my daughter and her friend who is visiting from Michigan to a mall in NJ (about an hour from here).  I was happy because I haven't been in a mall for a very long time.  We were excited because there was a huge bookstore there and we were both pretty sure it was a Barnes and Nobel.  But shoot. When we got there it was GONE.  Yep it was a Borders and thus is GONE.  It's so completely unfair that the only bookstore  available anywhere is a Barnes and Nobel.  B&N is okay but it's not like Borders were you can sit and take a stack of books and try them out while sipping  latte.

Anyway...how did I end up on a bookstore rant?  Oh yes.  The Mall.
Well this mall has a Teavana and I really wanted to go there. They have the best tea anywhere around but also many accoutrements   I got a glass mug with their logo etched into it.  I had the same much in a white dull ceramic finish but it rapidly got stained and then it fell out of the closet and got chipped.  The purpose for needing  a replacement of the same type of mug is that I  have an infuser that you sit on top of the mug and the tea just drains out of it (leaving the grounds behind) into your cup and this cup was designed for that  infuser.  Not to mention it's just a GREAT tea mug. Nice and big.

So that made me happy.  Plus  my daughter got a badly needed pair of shoes
 I love my daughter so much.  She is a really cool person...she's literate. She has a great sense of humor.  She's gorgeous....but doesn't believe she is. And she struggles...with agoraphobia, synesthesia and now  she has told me of one other struggle.  This struggle has the capacity to tower over all the other issues and it is one that hit me too close to home. My heart is aching as I think of what this could mean in her life. But yet I couldn't imagine my life without her.  It's true,she will and is suffering...But not to have her?  The world would ache from  the cavity she would have left in it were she never to have been born.  The world is more complete for having her in it.



I read a book which I  reviewed  in the post just prior to this.  And then I received an email from Voice of the Martyrs which is an organization whose purpose is to shine the light onto the sufferings of Christians around the globe and to make public the rapid and escalating rate of murders of those of a Christian faith.  They bring aid to the widows and orphans touched by those who have murdered a beloved family member...And this organization also brought aid to the efforts of Kimberly Smith(author of the book I reviewed) as she was in the Sudan building orphanages for the thousands of suffering children whose parents either had been killed or had abandoned them out of poverty.  This letter from VOM was for the purpose of raising funds for medical supplies in the Sudan where people are touched by famine and violence.  It was a topic so very close to my heart that I knew I had to contribute.  I already support a child in Swaziland and a family in the Philippines and my husband and I support a little girl in Kyrgyzstan .  I wanted to be a missionary.  I wanted to go there and serve...but since I can't...I can give.  I don't have a lot to give but I pray that God would expand my money to cover needs greater than the funds.  I would encourage you...open your heart and your checkbooks and support ministries like Open Doors Ministries and Voice of the Martyrs (VOM)  ...The world is crying out in need.  We are so very blessed here in this country.  Ask God to show you who needs your help and then be obedient to what he tells you to do.

I think of my daughter, her struggles and her pain and I think of those abandoned children and their struggles...their need for clean water, medical supplies, some one to keep them safe from being torn apart by the wild animals ...The children could have been mine.  Out of my gratitude to live in the United States I give.   I give because --giving and prayer are the only two things I can do.

Wednesday, August 14, 2013

Passport Through Darkness

Passport through Darkness: A True Story of Danger and Second ChancesPassport through Darkness: A True Story of Danger and Second Chances by Kimberly L. Smith

My rating: 5 of 5 stars


I have always loved reading tales of missions and missionaries...Were I not physically disabled I would have been honored to serve and maybe someday write my own story.  Kimberly L Smith said that she could never be a person who serves Christ in the shoes of someone great and holy as Elizabeth Elliot...I don't know...I didn't think to compare the two but I think there are more similarities than there are differences between the two.  Kimberly heard the call of Christ calling her to minister to his beloved, suffering people in the Sudan where her life every minute was challenged all for the purpose of sharing the love of the Father to his hurting children.  Kimberly sold all she had and faced constant risk of death due to disease and lack of rest and proper food...She lived on the level of those she served.  Kimberly worked to build a mission compound in one of the darkest most hate-filled dangerous corners of the globe...She brought the message to forlorn orphans that they are loved and that Kim would tell the world their stories in the hopes of being  able to return with more funds and food and the knowledge that their stories were heard by people who cared for them.  In the end of the book, Kimberly listed the Names God had for her...Name of tender love and pride in his creation.  Kimberly never attempted to elevate herself for her readers.  She presents herself in all she is: fighter, tender hearted, heart broken for those who suffered.  She tells of her heartbreak over the lives she was unable to save....but did not take any credit for the many she DID help.  Kimberly spoke of her fear but it was her bravery that most glowed on these pages.  I would definitely recommend this book if only to open your eyes to the plight of those on the other side of the world who every day face starvation, violence,rape and disease.  I pray that this book will prompt you to give if you cannot go and pray without ceasing for God's beloved and that Peace would reign. Only by a work of God will that be possible and he just may be looking for an intercessor to stand in the gap.




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Friday, August 9, 2013

Sweet Jesus Hear Our Prayer

I know my writing has been sparse lately.  Please forgive me if you've checked only to find nothing new here.  I've been dealing with more pain in my arms.  I finally caved in and admitted that I need to stop procrastinating and to start being proactive with this issue.  I have  scheduled my shoulder            to have a total shoulder replacement.  I've had major surgeries before...on my hips alone I've had 4 replacement surgeries in the past two years.  And while that's difficult and it carried risk also; those surgeries did not strike fear in me the way this surgery does.  I've heard both doctors and patients say this is the worst surgery to go through. Not only  does the surgery hurt but the rehab for it is excruciating.... and LOOONNG.  12 Weeks of complete disability.

What's going on in my head??  Not too much that doesn't already belong there.  I'm not sure when my brain cleared up.  I'm thinking it was somewhere in the midst of my 6 day fast.  Is there a connection there?  I'm sure Dr Fuhrman would say "yes--the fact that your mind cleared was due to the purification of the fast." But I don't know what the true reason is.  A more acceptable reason would be that God heard the cries of my heart in the midst of my fast and he answered my pleas.  Tomorrow at 10:00 AM I am have a time of pray with a pastor friend and another woman from my church who is a prayer warrior.  They are coming to my house tomorrow at 10:00 and the three of us will pray in one accord that God would heal me.  I have three maladies that I would like to lay before God.    Now here comes the hard question.  Am I READY to be healed?  In other words, what would my life look like if it were minus some issues?   What would a day be like without pain?  It seems easy to say, "it would be wonderful!" but it would also be terrifying.  What if I needed to go back to work and was able to go and succeed.  That thought honestly scares me.... I haven't worked in years.  And I think that my mental illness is as big a factor in my lack of ability as my physical illnesses are.  And how will I know if I've been healed or not? It would take time and trial by fire to know for sure.

So then, what do I hope to achieve in tomorrow's prayer time?
1) I would like a definitive "yes" or "no" in terms of an answer.  I want to be assured that this is where God has me for a purpose that only he knows so I could know once and for all that this is where God wants me...or does he have some other purpose in my life?  (And it would be GREAT if he would somehow clarify that purpose for me.)   Ie: does God want me to KEEP ON PRAYING for healing or am I to be satisfied like Paul that his strength will accomplish and keep me in my weakness and demonstrate himself to be strong and for me just to accept God's answer once and for  all.

2)   I would beseech God to show me something of his purpose through my suffering.  Is there some way on earth that my illness is playing a role in God's purposes?  Or would healing bring him more glory.  I'm tired of being on the sidelines and not being "in the game"  Does God have me on the sidelines to minister to others some how?  Just to bring him glory in the way I suffer --doing whatever God has ordained me to do there, ministering to other sufferers.....and demonstrating the greatness and immensity of God by being my source of help and salvation.

3) and finally:  Am I ready to be healed?  Sort of sounds like a stupid question..,,but I've gone for all these years praying and being prayed FOR . and I've had to resign myself to unanswered prayer.  I 've had to kind of look at my life and come to a peace between myself and my infirmities while I tried to explain God's  possible reasons for not "coming through" and answering my prayers.    Is there some part of me that is NOT ready to unearth those answers and to dig up my dead hopes for them to be dashed once more.   Or is there some part of me that is comfortable being dead.  Life demands much more from me well than it does being sick.

When I look at my life...any given day...I deal with unspeakable, unbearable pain. I can no longer imagine my life without pain.  Or without hallucinations==  And that unknown part of healing  is something that raises dis-ease in me.  I'm sort of like the man at the pool of Bethesda when Jesus asked him, 'Do you want to be healed?'  And the man immediately launches into a reason why he has not been healed before.  He never does answer Jesus's question....probably because sickness was all he'd ever known.  And he'd turned it into a career...He probably was  not sure how he felt about being healed. And how did Jesus leave him?  With the words, "go and sin no more, or something worse may happen to you.." What was his sin?  Making money off of his illness?  Did something happen to him as a result of something sinful that he did which resulted in his disability?

Elsewhere in the Gospels Jesus asked a blind man, "What do you want me to do for you?"  And the blind man answers "Lord I want to regain my sight"...and Jesus heals him...Both men regain their health but I'm sort of having the view since the lame man immediately pointed out Jesus to the Pharisees as the man who healed him....despite Jesus telling him not to point him out.  I have the feeling that "something worse" did happen to him because his heart was unchanged.

What does this all have to do with me?  Well I think it is really important for me to put myself in front of Jesus and I have to be ready to be healed..instead of offering a bucket full of excuses about why Jesus has not yet healed me.  I should not  come feeling like Jesus hasn't healed me because he is unable or unwilling to heal me;  Tomorrow is a new day. maybe tomorrow is the day of my healing;  At the very very least, I would like to leave tomorrow with some new insight into what God has for me....and what he expects of me with whatever resources he has given me.

Friday, August 2, 2013

A Contest and a change of Face

I just complete a precursory  search of "Tresearch asures From Darkness" and unfortunately came up with several links who had similar names...one of a car club and another book by a grieving mother.  It kills me to have to change the name of my blog and the title of my memoir...but better to do it now than AFTER I've published. I thought it would be cool if you all had a say in what the book title will be...so comment on this thread ...and if you have a suitable title and I choose it...I will send you a free book and I will make mention of you in the credits of the book.  I know that's not much of a prize but I'm running super low budget...

This blog will give lots of hints as to what the book contains.  Suffering.  Faith. mental illness. the omniscience of God....to name just a few of the themes here.  So really...even if you've never ever gone public in commenting on a blog before...it would be wonderful if you would give this some serious thought and share your thought with the bloggy world and me.
Thanks in advance for coming through with this.