Hope N the Word

I read an awesome quote on facebook the other day.  It said -   "At my lowest:  God is my Hope.  At my weakest:  God is my Strength.  At my saddest:  God is my Comforter."

How awesome is that?!?!?  It's so true!  God is our EVERYTHING - our problem is that we don't "let" him be our everything.  I know that I am so guilty of freaking out, losing my cool, letting go of hope, throwing ginormous pity parties, and a myriad of other knee-jerk reactions to obstacles in my life and concerning my health.  I get myself so worked up that I can't even appreciate the baby steps that are being made.  I just let go of Jesus and wallow in self pity and hopelessness.  (I said I wasn't going to do that anymore)

I worked myself up so bad last week that I was ready to quit!  I wasn't going to go back to the doctor, I wasn't going to take my medicine.  I was just DONE.  I didn't care and I didn't care that my family DID care.  I told myself that I was just going to bed and staying there till it was over.  I wished myself dead.

What an idiot! 

I did go to bed and I cried myself to sleep.  My faith foundered, a little, but it was still there.  Once I became quiet, God showed me (thru my dreams) that I have to keep fighting.  I have a family that loves me.  I have grandkids that need me and I adore.  I can still have a life and I still DO have a life.  I have plans and goals that I have not yet achieved. 

God has a  plan for my life.  I don't yet know what that is, exactly, but I know that he has one.  I know this because he said so...

 Jeremiah 29:11   For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future."

So how can I stop holding on?  He is my hope and he promised me a future!

I know that I will still have my down times and that I will probably still have pity parties, but I will hold onto the Hope, Strength and Comfort that my God supplies to me every single day of my life.

Ephesians 4:26-27 -  Be angry and do not sin; do not let the sun go down on your anger, and give no opportunity to the devil.

I am angry, sad, depressed and don't know what in the world to think.  All I know is that I absolutely do NOT want to play this stupid "game" for another single minute!  I can't do it, I don't want to do it.  I hate feeling trapped. I am backed in a corner and I stood onthat rug and it was yanked right out from under me!

This hurts so bad. Physically, emotionally & mentally.  I am forced to keep going because other people want me to, other people need me to. Why?

The nurse called yesterday to tell me that my leg xrays were normal (so it "shouln't" be hurting).  Well guess what?!?! It DOES hurt! It hurts like a #@%-€&-#¥&%@!!!! It feels like wood peckers are inside of my thigh bone, trying to peck their way out. It feel like my bone is going to explode. Everyone looks at me like I am crazy when I say that it feels like it is dying.  Why do they look like that?  I am not being dramatic - I am being as serious as possible.  Dont look at me like that, you don't understand!

The nurse also said that my bloodwork shows that I have some kind of strep infection, "so be sure and keep your doctor appointment" on June 30th!!!!!  What the.....?  6 weeks!!!! Whatever.  She did finally bump my appointment up to June 23rd. Whoo hoo.  (Doesn't matter I guess that I have had MRSA 4 times ina year! And I get every Iinfection within a 5 mile radius, just about) She said "it's strep not staph." Guess I better research the 2.

Next, she said "your ANA came back normal" surprise, surprise - now I have 2 negatives and 2 positives!  I already know that that test will come back negative if you are not in the middle of a flare!  So - ok - now "I don't have lupus." FINE! That is FABULOUS! What is wrong with me then???? Tell my why the only symptom of lupus that I dont have, is the rash on my face?!?!?!  It's B.S.!  

I would love it if I didnt have this disease. I would love to have my life back.  I would love it if I no longer had to be in constant pain, no swollen, puffer fish legs, no falling on my face for no reason, no neuropathy, no rash on my feet, no constant throbbing n my joints, no more fatigue and malaise, no slurred speach, no concentration/memory problems, no rashes from the sun, no mouth and nose sores.....I could go on and on.

So, tell me doctor - what IS wrong with me?

Dang it ! I am just so tired and freaked completely out. It is so hard to hang onto my faith right now. But I have to - get away from me, you stupid devil!  God isn't dead, he is still on the throne, and he will not abandon me.  I have to get past the anger and frustration. 

 I realize she is a new (to me) doctor, but I am NOT starting over.  She has all my records from my last 3 doctors, physician assistant and nurse practitioner.  I dont have time for her to start from the beginning and play guinea pig with me. Its crap and not fair!

And the dentist looked at the growth in my mouth and said he id 99% sure its not cancerous, that it is a papaloma (not sure of spelling) and needs removed by a surgeon. He said it will continue to grow until it is cut out.

Soooo - my leg xray is normal and the growth is not impeding my ability to breath (yet). Whoo hoo! I must be fine! I will go run a marathon now! Because all of this must be in my head!

I am praying to get over the anger and frustration.

I am so excited (but a little scared to be), I am finally getting some help!

Thank you to my Fairy Godmother and her AWESOME plea (see my blog entitled:  Shannon's Story:  Invitation to Make a Difference).  She sent that letter to Senators, State Reps, Cherokee Nation, Lupus Foundation of America, Oklahoma State Department of Health and every place else we could think of.  It Worked!!!!

I got a call last week from the Cherokee Nation Patient Liaison, who instructed me in what to do as far as getting moved up the list to see my doctor at the Indian Clinic in my town and how to get a written prescription to go back on Lyrica.  I did everything she instructed me to do, including calling the pharmacy to find out that my prescription was going to cost $306!!!!!! a month.  But, hey I am willing to do anything.

About an hour after that call, I got a call from the CEO of Hastings Hospital.  He overrode everything I had just worked out with the patient liaison - he scheduled me an appointment with one of their doctors and I now have a primary care physician at Hastings!  I had my first appointment last friday.  Prior to my appointment, she ordered 11 vials of blood for all kinds of tests, 6 xrays and an ekg, she ordered an ultrasound of my thyroid (still waiting for appointment), she ordered an appointment with the dental clinic to have the growth removed from the roof of my mouth (scheduled for this Thursday), will try to get an mri done of my leg (for now took 4 xrays), more bloodwork panels for Lupus and kidneys.  She also put me on the waiting list for their rhuematology clinic.

She put me back on Lyrica (which I do NOT have to have filled at an outside pharmacy), she gave me back my tramadol to help take the edge off of my pain.  She wants to get me back on all my meds that I have been taking and then she wants to look at putting me on meds that are more for Lupus treatment.  She mentioned Plaquinil.

I feel so thrilled that someone finally took me seriously and really seems to "want" to help me.  I told her that I have resigned myself to living in pain, but that I shouldn't have to be bedridden or a zombie because of it - and she agreed!  And she didn't blame everything on my weight - hooray!

I am very happy and very willing to take the baby steps needed, but I am really scared that someone will yank the rug from underneath of me.  It has happened so many times that I come to expect it.

I pray that God has shone favor upon me.  I also pray that no one else has to jump these hoops only to have the door slammed in their face. 

And now for an uplift:

"I am the Lord who heals you."  Exodus 15:26

I find myself in a tailspin to the deep dark pit.  It's so dark and sad and angry there.  I try to pull myself out of it and tell myself that it will all work out - but the pull is sometimes too strong. 

I know it's this horrible medicine!  I hate Neurontin!  I realize that it helps some patients with pain from Neuropathy, but all it does for me is make me sad, drunk, angry, itchy and have a massive pounding head ache.  It's so bad that my husband said if I continue being hostile and aggressive, that I need to live someplace else.  It is seriously that bad!  I can't be the only person that it affects in this manner.

I told the doctor that I can't take it, that I needed to be back on Lyrica.  She said "since I don't have your medical records to verify you have been on it before - I have to put you back on Neurontin for at least 2 weeks before I can give you Lyrica." Hello?  I am also allergic to pennicilun - does that mean if I had gone in for an infection, that she would have made me take that?  (since she doesn't have all my medical records)  What a crock!

Here is the deal - I am not taking another single dose of this horrible medicine.  So, I assume it will not longer be in my bloodstream come this friday.  She will just have to take my word for it.  

Lyrica is not exactly the end all either, but at least it only makes me sleepy.  Who cares?  I don't notice the difference between "may cause drowsiness" and chronic fatigue anyway.  It does take the edge off of my pain.  When I first went on Lyrica, I took it for about 6 months and thought that it wasn't doing me any good, except making me sleepy.  So - I quit taking it.  Within a week even my hair hurt. I quickly figured out that I can handle sleeping a little more than I already do.

Ok, enough of my rant.  Now let's have a funny:

I can't get out of bed.  These blankets have accepted me as one of their own and if I leave now I might lose their trust.

"To a large degree, the measure of our peace of mind is determined by how much we are able to Iive in the present moment.  Irrespective of what happened yesterday or last year, and what may or may not happen tomorrow, the present moment is where you are - always!" Don't Sweat the Small Stuff, by:  Richard Carlson Phd.

This has been a very hard lesson for me to learn.  You see, I am a natural born worrier.  It's in my genes.  My mother is a worrier, my grandmother was a worrier.  My mom actually had a friend that she would "worry"with!  They talked on the phone and if nothing was going on in their lives that was worth worrying about - Mom said they would just spin the globe and where ever their finger landed; they would worry about that country until the next phone call.

I love that story, but it really is pretty silly.  I can't fix yesterday and I can't do anything for tomorrow.

I worry about every single new symptom that comes along (while still worrying about the ones that are constant).  My legs are swollen more than usual - am I getting kidney failure now?  My ankles are locking up on me - will they possible fuse together the way niece's wrist has?  I fell flat on my face yesterday - will I end up in a wheel chair?   I have started breaking out from sun exposure - does that mean I will never get to go to the beach again? and on and on and on....

Then I worry about how to get a doctor to take me seriously about real issues.  Like the fact that my right leg has a pain that is scaring the hell out of me.  My actual bone hurts CONSTANTLY, sometimes so badly that I can't even think straight.  I think "what if it's leukemia?" and no one is checking it.  I have had MRSA 4 times in the last year, what if it has come back, inside my bone?  Or the growth in my mouth that went from a small ulcer the size of a freckle, now quadrupled in size and hangs down and catches food - my doctor wants it removed; but once again, I am at the mercy of the Indian clinics/hospitals and they won't approve the procedure.  So I worry - what if it's cancer?

This is what I worry about, but it doesn't do me any good.  You know why?

Because I could get kidney failure, I could end up in a wheel chair, I could have fused ankles, I might get leukemia or mouth cancer.  I could end up with a lot of things, but for now I don't have any of that!  For now, I just have a lot of symptoms and a lot of pain.  For now, I have to take my life as it is dealt to me.  For now, I am in pain.  For now, I have to find a way to deal with that pain.  

An Autoimmune Diseases Association survey found that "it takes most autoimmune patients up to 4.6 years and nearly 5 doctors before receiving a proper autoimmune disease diagnosis." This information came from the AARDA  http://www.aarda.org/autoimmune-information/autoimmune-disease-in-women/

No one should have to suffer the way that we "lupies" do, waiting for a diagnosis.  I realize that Lupus is known as the "great imitator", but testing for it should NOT be the last resort.  Tests for everything else (hypothyroid Hashimoto's disease, MS, celiac disease, neuropathy, etc.) don't take 4-5 years to get results, so once all those other disease have been ruled out...testing for Lupus should be immediately started.  That, in itself is another problem:  I have had the ANA test 3 times; 2 were positive and 1 was negative.  I have since found out that if you are not in a Flare stage, you will, most likely  test negative.  The next test is the Double Stranded DNA test - over half the time, it comes back as "inconclusive."  Another test is a syphilis  test, if it comes back positive and you really don't have syphilis, then it can be "assumed" that you have Lupus????  How can we possibly find a cure, when there isn't even a specific diagnostic test?

Finding the right doctor is a nightmare.  You start with your family physician who diagnoses you with the flu.  You go back a few weeks or a month later, with the same symptoms or a whole new group of symptoms and you get diagnosed with some sort of infection and are given antibiotics and sometimes something for pain.  You go back a month or so later, with yet another set of symptoms and MAYBE some lab work is done and you are referred to a specialist that deals with whatever your symptom is that day (neurologist, nephrologist, chiropractor, dermatologist, etc).  That specialist runs some tests and finds out you don't have whatever disease they thought it might be, so you are sent back to you family physician.  It is a vicious circle.  Don't get me wrong - I don't blame doctors, they have a hard job and they work too many hours and most truly care about their patients; the problem is that they are so busy and it's difficult to piece the puzzle together.

Now - try doing all of this without insurance.  I have been turned down by 6 Rheumatologist's offices because they can't take anymore "cash pay" patients due to the new ACA rules.  I don't qualify for help paying for ACA insurance, because I made too much  money last year (I live below poverty level).  I can't get medicaid because my disability case was denied and I am awaiting appeal, which will be sometime in the year 2015. 

I do have the Indian clinics, but they do not do any pain management, nor will they give me a referral to a Rheumatologist, Neurologist or Ear Nose & Throat specialist.  

I have a growth in my mouth that has quadrupled in size over the last 6 months and can't get it removed because they say "it's not a life threatening condition."  How do they know?  No one has done a biopsy of it.  How do they know it is not life threatening?

I have a pain in my right thigh bone that has me completely worried.  It is not my "normal" lupus pain - it is constant and it radiates from my hip to my knee and it is coming from inside my bone.  I can hardly think straight because of the constant pain.  But I am told "your bones don't feel pain."  They don't?  Hop inside my body and live for a day and then tell me that.  A bone is alive and has blood going to it - how does it not feel pain?

I have a primary  physician, but she is limited in what the IHCRC allows her to do for me.  She always tells me to come back to see her in 2 months.  The clinic won't make the appointment for me while I am there because, "we only book 2 weeks out, you will need to call 2 weeks before you need to be seen and schedule your appointment."  So I call everyday at 8 am, starting 2 weeks before I am supposed to go back and can't get an appointment because she is already booked.  If I am lucky, I get seen by  MY doctor twice a year; otherwise, I see the "walk in" or "urgent care" doctor.  The problem with those doctors is that they are limited to discussing ONE symptom and cannot give refills or request lab work and can only do an x-ray for emergencies.

I have jumped through every hoop that I have been asked to jump through.  I have hit my head on every brick wall that I can find.  I am knocking on all the doors - when will someone answer?   

James 1:2-4 2 Count it all joy, my brothers, when you meet trials of various kinds, 3 for you know that the testing of your faith produces steadfastness. 4 And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.

It is soo hard to hang onto that scripture when I have a had days like today - but my faith is what keeps me going.  If it wasn't for God and my family, I KNOW that I could not get through this.

I do not have insurance, but I do have an indian card.  I am not able to work, but I don't qualify for assistance with Obama care.  I use the Indian clinic in my town for doctor appointments.  I also go to Claremore Indian Hospital for emergency issues.  They do "what they can" but they do not handle pain management and they don't get funds from individual tribes to support their operations - they rely solely on federal funds. I have a growth in my mouth that needs to be removed, but Claremore will not approve a referral to a doctor to remove it.  Their letter said "because it is not a life or death treatment."  I have a problem with my right knee, hip and thigh - I know that there is something wrong and I need an mri or bone scan, but Claremore won't approve a referral to a doctor to treat it.  Once again, their letter said "because it is not a life or death treatment."  

My question is - how do they know?  No one has biopsied the growth.  No one has looked at my leg.  How do they know?

I decided to go to Hastings hospital in Tahlequah, OK, which is the CHEROKEE hospital, supported by both federal AND tribal funds.  I was told that it is a 6-18 month wait to get a primary care doctor, but I could be treated through the Urgent Care Clinic.  The urgent care doctor could only talk to me about ONE issue.  Hello?  Lupus is from head to toe, where should I start?  She ended up putting me back on Neurontin for 2 weeks and then she can put me back on Lyrica (only good thing that came out of that trip).  She told me to go downstairs to the Dental Clinic to have their Oral Surgeon remove the growth in my mouth.  She did NOTHING to address my leg.

I went downstairs to the Dental clinic and guess what?  They don't have an oral surgeon!  They would have to request that Claremore give me a referral to one.  Even though I am a Cherokee - since I live in Tulsa, I have to go through Claremore for all referrals.  MY OWN TRIBE WON'T HELP ME!!!!!  Claremore only approves referrals for Cancer and Heart patients.

What am I supposed to do?  I know that I cannot be the only Cherokee Native American stuck in this catch 22 situation.  I am so depressed - I just want to give up.  I don't even know how to fight anymore.  I am tired and I am hurting and I am sick.  I have accepted that I will have pain the rest of my life, but I don't think I should have to do it without any help or proper medical treatment; nor should anyone else.

I am hanging on by my fingernails.  I want to give up, but I can't.  I have to fight, I have to find a way.  Someone has to hear us!

Yesterday evening was fabulous!  Beautiful weather, not too much wind, a little overcast, but enough sun to enjoy being outside.  So I was enjoying being outside admiring my flowers from my rocking chair.  I wasn't feeling very much pain (just the usual dull ache in my joints), it was heavenly!

My 4 year old granddaughter asked me to push her on the tire swing and I did!  We were having fun and I was loving a day to finally play with her.  Next thing I knew, we were kicking the soccer ball around the yard - granted, I wasn't able to run after it.  Pure joy!  Whoo-hoo!  She did notice that after a while I was starting to limp, so she says "Grammy let's just sit in the chairs and play catch."  Between swinging her, playing soccer and playing catch - I played for over an hour!  

Oh my gosh - loved it!  Not one time, did I think "I will pay for this later." and guess WHAT????  I didn't pay for it last night or so far today!

I just want to thank my Lord and Saviour, Jesus Christ for taking away my pain long enough to play with my baby brat!  My God is Awesome!

I am so tired and I am so tired of being tired.  I know that I am not the only Lupie that feels this way - but it is a very lonely feeling.  I just want to curl up in my bed and sleep (for days).  I know that it is because I have had a very physical week and my body is telling me that it is done, but I have another day to go and I have to do it.

Why?  Why does 3 days of physical activity have to leave me feeling this way?  Why can't I just have my life back?  It's very easy to fall into a deep pit of despair and self pity.  I know!  I have spent almost 5 years in that pit.  I don't want to be there ever again.  If you are feeling tired, sad, depressed (suicidal), shear pain, like there is no way out - I am telling you that there is still a life to be had.  Maybe not the life that you dreamed of, or the life you were used to, but there is still a life for you.  

I have decided to take a different approach to days like today:  I will allow myself a brief period of time to throw a pity party, but then I will pray, I will get up, get dressed, put on my face, fix my hair and finally I will laugh!  I have figured out that when I laugh, I feel soooo much better!  Even if it is only for a minute - that minute makes my whole day!  

There are a million and one ways to find something to laugh about - here is a partial list of what has worked for me so far:  find a sitcom on tv, google "humorous quotes", find a stand up comedy routine on YouTube, take a silly "selfie"and text it to someone, find a book that is nothing but pure sillyness and laugh out loud while reading it, call a friend or family member and talk about silly things you did when you were kids, if you have grandkids - they are always a barrel of laughs, and of course, my dogs do something that at least makes me smile every single day.

Don't take yourself too seriously - that causes stress.  I did not say "don't take your disease seriously!" This disease is a serious issue - but when you never smile or laugh - you will get sicker!  Take time out to laugh, even at yourself.  I have quite a few symptoms that I laugh about, maybe not every time, but at least some of the time.  There have been times that my legs gave way from under me and I fall flat on my face; it's pretty funny when the only ones around are my dogs and they are looking at me like "cool game, I wanna play!" It's funny because, I am not in pain - I am just stuck face down on the floor with a pile of dogs on my back.

I love to laugh and no matter what this disease throws at me - I have always loved to laugh and I always will!

"I called my pain meds to say that they were supposed to be stopping my pain.  They said that they liked that joke too."

Hebrews 4:16 is of great comfort on tired and painful days.  It says "Let us then approach the throne of grace with confidence, so that we may receive mercy and grace to help us in our time of need."  

Approach the throne with CONFIDENCE - meaning, pray KNOWING that you will receive mercy and grace!  Go boldly to the throne, claim what you need and believe that you receive!