Hope N the Word

I took myself off all of my meds; except my thyroid medicine and Aleve, 4 weeks ago.  I did it because I was constantly dizzy and wanted to figure out which one (or combination) was causing it.  I am pretty sure it was the Lyrica, but I not 100%.  I still need to take my list of medications to a pharmacist (NOT at the indian clinic) to see what the contraindications might be.

This is what I have observed since I quit taking them:  No more dizzy spells and I seem to have a little more energy.  However; the pain is IMMENSE!!!!  My ankle joints are pretty swollen and the pain is horrible (thank God for Aleve).  I don't sleep very well at night and I am pretty sure that is due to not taking Meloxicam and Flexiril at bedtime.  One good thing about not taking the flexiril - I don't wake up in the middle of the night because I need to go to the bathroom, only to realize I am already going.  The bad thing about not taking flexiril - the cramps in my legs are creeping back. I haven't noticed much edema since I quit taking Lasix.  I don't take my tramadol anymore and don't get the horrible headaches that went with it - I think it's kinda funny that the tramadol took the edge off of the pain in my legs and shoulders, but in return I got a splitting headache.

I feel so confused because I really thought the Lyrica was helping me and I fought so hard to get back on it.  Now I feel so much better (mentally) without it.

I am NOT recommending that other Lupies (or any other chronic pain sufferer) take themselves off of their medications!  This is my path and I have chosen to take this path off the fork in the road.  I am the one that will suffer the consequences for my decision.  I hope and pray that the consequences of my decision are favorable.

I have decided to look, a little more seriously into a product called Juice Plus.  I have read the website and the reviews.  I have also talked about it with one of my Lupie friends that is on it ( and swears by it).  I will discuss it with my doctor before making my final decision.  I am so very interested in looking into a more holistic approach to treating my disease.  I feel like there is a reason that native americans used so many herbs to treat illnesses - so many people survived thousands of years off of things that grow naturally on the earth.  I just feel like all the chemicals and poisons are making me sicker.

Again - I am NOT advising anyone else to take this path!  This is my decision for me.  I do not recommend that others do anything without first speaking with your own doctor and health care team.

Please say a prayer that I am following God's will for MY life concerning my health.

"The Chronic Games:  May the spoons be ever in your favor."

I have been thinking alot lately.  About how much my parents do for me and how much they take care of me.  I don't know what I would do without them.  My mom knows the minute that she looks at me, if I am having a good day.  Sometimes she can tell over the phone!  Amazing!  

She runs me up and down the highway to all my doctor appointments.  She sits all night with me in the E.R. (even if she has only had an hour of sleep).  She knows I am terrified to stay in the hospital alone and she will stay with me until I am released to go home.  She comes in and rubs my hair and looks in my eyes to see if I am ok.  She answers my calls day or night.

If I can't finish a pet sit, my Dad is off and running to take care of all the fur buddies for me.  He rubs my shoulders, calves and feet when I am having muscle spasms and cramps.  He just sits with me anytime I need him to.

These are amazing people with health problems of their own!  I should be taking care of them.  They  never say a word of complaint when they have to cancel plans to take care of me.  I say all of this because I appreciate and love them with all of my heart and I never want them to feel taken for granted.

I also have tremendous respect, appreciation, admiration and love for my brother - I know there are times that he "needs" our parents too, and I feel like I take all their attention.  I know that he is dealing with things, but he is always so good about texting, just to check on me.  

I am so humbled by my family and I just want the world to know how much they all mean to me!

Thank you!  I hope that I am always able and available to my girls as you have all been to me.  I promise to pay it forward.

"a person who truly loves you is someone who sees the pain in your eyes, while everyone else still believes the smile on your face."

I haven't been to sleep at all.  My mind is racing and I am STILL dizzy!  I think I am going to go off of all my meds (except my thyroid medicine & vitamin D) for at least a week and then slowly go back on them one by one.  I tell myself all the time that I really need them, in order to deal with all the pain and fatigue and various ailments.  But maybe not - I just had emergency surgery and with the exception of the iv medication for the 24 hours I was in the hospital, I haven't really taken anything.  I took tramadol (worthless) until late monday night, but I had to stop taking it because it was giving me a pounding headache.  Since then I have only taken Aleve.  I figure if I can go through the pain of surgery without taking my pain pills, then I can probably suffer through my daily pain until I find out which one (or combination of) is making me so constantly dizzy. 

I am pretty angry with the indian hospital in Tahlequah.  It's bad enough that I was there on the 11th and they overdosed me.  I realize I was complaining of dizzyness and severe hip pain, but the Urgent Care doctor only treated me for nausea and pain.  The only exam she gave me was to listen to my lungs!  The only questions she asked were if I had ever had phenegran and nubain!  I advised her of my extensive list of allergies and that I didn't think I had ever had nubain.  The next thing I knew the nurse came in and gave me 2 shots in my butt, handed me a prescription and said "when you button your pants, drop your prescription at the pharmacy and have a seat in the waiting room until they call your name."  Wow! Really?  Why didn't they keep me in the exam room for observation to at least make sure I didn't have a reaction to a new medication?????

I barely remember handing in my prescription and I don't remember sitting down next to my husband in the waiting room.  I don't remember texting my mom, I don't remember being unconscious in a waiting room chair leaning on my husband for an hour and a half.  I don't remember a nurse helping my husband put me in a wheelchair and wheeling me out to the truck and putting me in it facedown.  All I can say is THANK GOD my mom showed up and went to talk to my doctor and Scott realized that something wasn't right about the situation; Scott has seen me on phenerghan in the past and was aware that it totally dings me out, but this was totally different.  Scarey to think that the nurse was just going to send Scott down the road with me unconscious and non-responsive and I probably wouldn't be here right now. 

I don't remember being wheeled back into the hospital to the emergency room, where I spent the whole day!

Anyway - I just kept getting sicker all week.  It got to the point that I couldn't get comfortable sitting or laying down and it hurt like hell to walk.  I was dizzy and so tired, but I couldn't sleep.  Then my stomach started feeling like I had swallowed a brick, I thought I needed to eat, but every bite hit my stomack like a piece of led.  It was killing my back to breath.  Then my breastbone felt like someone was pushing so hard on it that it was going to break - that's when I got scared!  and I mean REALLY SCARED!  I thought I was having a heart attack.  I had my mom take me to the local (non indian) hospital, Saturday morning at 3:30am.  Thank you, Jesus!  It wasn't my heart!  Blood tests came back normal (for me), but the emergency room doctor ordered a CT scan, and guess what? Within an hour of the results, I was having emergency surgery to remove my gall bladder!  My surgeon said, "I have done hundreds of these gall bladder surgeries and yours was one of the nastiest I have seen.  You have probably been sick with this a minimum of 6 months.  It just wasn't manifesting itself as gall bladder pain."

I am angry because doctors treat me like I am a drug seeker.  No way!  Take a look at my allergies - why on earth would someone with a list of allergies like that be seeking drugs?!?!  I would love to have something to take away the pain without causing hives, vomiting or anaphylactic shock!  But that something only exists for me IN the hospital thru an IV drip and it is called dilaudid and I am not about to take it as a daily prescription...one of my biggest fears is becoming a drug addict!  I have seen up close and personal what prescription drug addiction can do to the most beautiful people.  No thank you!

I am angry because I can't get a referral to see a rheumatologist!  All I need is a referral to the OU Rheumatology Resident's clinic!  But the Indian clinic/hospital doctors can't give me that referral because it makes the hospital responsible for the bill.  I try to explain that the resident's clinic is FREE, but you have to have a referral to get an appointment.  The Contract Health Department of the indian hospital doesn't understand that.  So, instead I am stuck with primary care doctors who say "I am at a dead end, I don't know what else to do.  Your illness is beyond my experience and education."  And then I get dropped and have to start all over.  Good grief!  I am so sick of it!

One thing I can control:  how and when I take my medications.  I can do the private investigative work to find the culprit that is making me constantly dizzy.  I have also learned - I know my body and I haven't been with a primary care doctor long enough to trust that they do.  So, from now on when something is wrong, I will not budge!  If the blood work is "normal," what's the next test?

It's my body and I know when something is wrong, I am not a drug seeker and I am not a hypochondriac - so I will be LISTENED to and not judged to be something that I am NOT!

Evidently I had a very exciting day on Monday, August 11, 2014.

I had been feeling dizzy since last Friday evening and on Saturday I began feeling jittery, my lips and eyes were swollen and the pain in my hips and wrist was almost unbearable.  On Sunday, I almost went to the emergency room at Hastings in Tahlequah (indian hospital), but talked myself out of it.  On Monday morning, my husband said "as soon as you get up and dressed we are going to Tahlequah, you kept me awake all night crying over your hips."

We drove to Tahlequah,  I threw up on the way there and again when I arrived.  I went to the medical clinic to check in to see my doctor.  Her nurse advised me that Dr. Newton does not come in until 1pm on Mondays and she walked me over to the urgent care clinic.  The doctor came in, asked me a few questions and said she was going to give me a shot of Phenerghan for the nausea and another shot for pain.  She wanted to make sure I had had Phenerghan before and I advised her that my doctor used to give it to me for chronic migrains (so that I could sleep through the pain).  From here the excitement starts, 99% of which - I have no memory.

Here is what I remember:  The nurse gave me 2 shots, I left the office and went down the hall and turned in my prescription to the pharmacy window.  The next thing I remember is someone throwing ice at me and a bunch of people in my face.  The next thing I remember after that is opening my eyes and seeing my mom and Scott sitting across from me.  I vaguely remember being in the truck to come home.

This is what happened:  After turning in my prescription to the pharmacy window, I went and sat with my husband in the waiting room.  I texted my mom that I was in Tahlequah and had been given Phenerghan and a pain shot and I was very sleepy and asked her to call Scott.  She did not know he was with me and jumped in her car to come and get me.    From there I am told that I slept, draped across Scott in the waiting room for an hour and a half.  He asked a nurse to help him put me in a wheel chair and take me to the car.  The nurse was loading me in the car when my mom walked up and said she didn't understand why they were letting me leave in that condition (I was completely unconscious).  My mom made Scott wait with me in the truck while she went to the medical clinic to sign me in to see my doctor.

While my mom was over at the medical clinic, the nurse that had put me in the truck came out and told Scott that they had given me Nubain and it was a heavy narcotic and that I was having a reaction and he put me back in a wheel chair and rushed me into the emergency room.  The nurses and doctors were asking my family if I was on any other drugs and they ran blood work to see if I was positive for amphetamines, barbituates, opioids, cocaine, pot all of which came back negative.  Ha!  My family already told you that I don't do drugs!  Turns out I was having a bad reaction to an overdose of Nubain!

After two bags of IV fluids and some sort of medicine to reverse the Nubain and a catheter, a nurse dressed me and wheeled me back out to my truck to send me home.  I passed out and my legs would not work.  Back into the hospital I went.

I am told that it took 3 tries to get me out to the truck to go home.  My mom says that she doesn't think anyone was actually throwing ice me, but that she wasn't in the room.  She did say that the first bag of iv fluid was cold and they had ice packs around my head, so maybe that is why I thought they were throwing ice at me.  She also said that there were people in my face, they were trying to get me to respond to them and I couldn't.  

It is very scarey to know that I was overdosed in the hospital and that they were just going to let Scott take me home like that.

I have tried to make my follow up appointment (as directed by the e.r. doctor) and now the clinic says that Dr. Newton is not my primary physician that she was only seeing me until I could get a primary care doctor.  They say I will have to do my follow up in the urgent care clinic.

HELLO?!?!?  No way! They almost killed me!

Now what?  I am so upset, but all I can do is know that God's got this and I am going to be ok.

Sometimes I feel really sick, angry, disgusted and so frustrated by this sickness.  Other times, like today; I feel numb by it. By numb, I mean "oh well" or "can't do a dad gum thing about it."  It is just here and I have to learn to go on WITH it.

Jesus didn't heal everyone when he walked on this earth, and he hasn't healed everyone that got sick after he died on the cross and ascended to heaven.  That does NOT mean that I don't believe that I will be healed - it doesn't mean that I don't have "enough" faith to be healed.  God doesn't heal everyone and I have faith to know that it is not some sort of punishment.  If I don't receive my healing in this life - I will definitely be healed when I reach heaven!  Hallelujah!

I have been going to a new church and the first sunday that I went, the pastor came up to me during his sermon, introduced himself and put his hand on my forehead and said "I don't know what kind of illness that you are suffering from, but if you will draw closer to God, you are going to be ok."

He said "ok", not healed.  That means that I will be able to bear this sickness and that God has a definite plan for why it is part of my life.  Jacob wrestled with the angel and the angel dislocated his hip as a permanent reminder of his blessing.  Paul preached the Word and was beaten, imprisoned and had a permanent "thorn" in his side (what I believe was kidney disease) & he received the promise.  I am not near as important as those two great men of God, but I am still His child and the promise and the blessings are for me too.

So on the painful, frustrating, nauseous, mood swinging, and even the numb days - I put my faith in my saviour Jesus Christ, because he knows the plans he has set out for me.

A wonderful young man, an awesome witness for God, and pretty good friend, passed away on Monday.  In my sadness, I realized an awesome lesson that he was trying to teach, but that I had COMPLETELY overlooked while he was still with us.  

Jon was terminally ill from birth - he had cystic fibrosis and diabetes.  He wasn't supposed to live past the age of 16-17 years old.  He was 25 when he passed away.  He was such a sweet kid.  Even when you could see in his eyes that he wasn't feeling well - if you asked, he would say "I'm good, got another day - I will be fine."  He had to be hospitalized so frequently that the doctors put in a permanent port, near his collarbone so that he didn't have to be poked incessantly.  He called these frequent trips to the hospital - Tune Ups.

He would frequently call my husband and say "I'm in for another tune-up, not sure how long I will be here this time."

Jon had 3 major loves in his life:  God, playing guitar and working on cars.

He got married at a young age and when his wife began causing some major issues and his marriage fell apart; he picked himself up and said that his life was going on and that God still had plans for him.  

Jon never wanted to slow down, he wanted to live his life to the fullest.  He would not even think of going on disability, he just knew that someone would hire him and work around his "tune ups."  He was right!  He got a job working at a mechanics shop and worked his way up to manager.  He was thrilled and didn't even mind that he was there so much that it was practically his residence.  Those long hours are what contributed to his last tune-up.

He was a happy, bright, handsome, funny and wonderful young man and I will miss him greatly.

The lesson?  No matter how sick, tired, beat down, worn out he felt; you would always see a smile on his face, a twinkle in his ornery eyes and he always had something nice to say.   One thing you NEVER heard him do? ----- complain. 

Thank you, Jesus for sending Jon to all of us that knew him.  Thank you Jon for allowing God to use you.  I know that you are in Heaven worshipping you Lord and Saviour and you can breath, laugh, sing, and dance for the Lord; all without coughing and choking!

I am so excited and I don't even know where to begin, so much has happened in the last week!  Please accept my apology because I am sure this post is going to jump all over the place.

First things first:  Thank you to my Heavenly Father, who hears my prayers.

I went to my thyroid ultrasound and Dr. appointments on June 23rd.  My thyroid ultrasound came back ok, they can't say normal because I do have a goiter, that I have had since I was 12.  Thank you, Jesus!

My Dr. went over all of my previous labs with me - most of which was within normal ranges.  My leg x-ray came back normal, she said that if I did have MRSA inside of it - that they would have seen nodules or evidence on the outside of the bone.   Whew!  She was concerned that may be it is my sciatic nerve and has ordered a CT scan.  She wants an MRI, but that is a whole other can of worms, relating to my lack of insurance, inability to qualify for Obama care and the Indian hospital tying her hands.  She put in another referral for me to see a rhuemetologist (don't know how you spell it) , hopefully they will work me in soon.  

I had had active MRSA on my elbow, arm, neck and stomach, so I went to the e.r. on June 8th and was given antibiotics and bactraban.  My Doctor advised me that I need to keep my nails short, wash with antimicrobial soap, put the bactraban in my nose and stop shaving my bikini line - until I stop having break outs.  I wonder - why haven't the e.r. docs ever told me this

Anyway, because she is so limited in the type of testing she can do, she thinks that I have "pre"Lupus - she said "that doesn't mean that a rhuematologist wouldn't diagnose you tomorrow.  Or that you won't have every positive test 5 years from now." Whatever....Great!  I get so tired of starting over all the time. 2 doctors, a physician assistant and a nurse practitioner have all said I have it.  I don't want it, sooo maybe I don't have lupus....then, what do I have?  and what is the cure?  I am not going to wait another 5 years to just get sicker.  Oh well, God's hands, right?

So, to round up the appointment:  She kept all my meds the same and added compression stockings for my puffer fish legs and put me on a round of prednisone.  Oh, so SCAREY!  I have worked really hard to lose 44.2 pounds this past year and I do NOT want to gain it back!  I still have 100 more to go!  It will be ok, I will just be VERY careful.   I want to take them because they helped last time.  And the last time I was on them, I lost weight and blew my doctor's mind!  I can do it again!  

I had an appointment on June 26th with the Oral Surgeon to have the growth removed from my mouth and, guess what?!?  My MRSA became active AGAIN!  Needless to say, I have to reschedule my appointment.  I called Dr. Newton for another round of antibiotics and bactraban - I also told the nurse to let Dr. Newton know that she jinxed me with that bikini line comment, because now it is on my butt! (ok, TMI, but that is the most painful one so far!)

I had to give you the lowdown in order to get to the EXCITING, SUPER ECSTATIC PART!!!!!!

I have had minimal swelling and ZERO pain for 4 days now!  I promise, if I knew how; I would go outside and do a back flip!!!  My toes don't look like sausages.  I never thought I would say this, but "I am so thrilled to see my long monkey toes." I can see my ankle bone on my left foot and I can see the bones on the top of my feet.  When I push on my shin, there is no pitting.  I went grocery shopping yesterday and didn't think about how bad walking hurts, BECAUSE IT DIDN'T!  I came home and pulled everything out of my kitchen cabinets and cleaned the shelves and cleaned out my refrigerator!  I haven't fallen asleep mid-sentence since last Saturday.  Whoopee!

Last night I had a couple of muscle cramps, but I was able to work them out without waking anyone else up to help me.  AND - I found out that I didn't stop breathing, one, single time during the night!  Maybe my sleep apnea really is caused by the goiter and the steroids have caused that swelling to go down too!   

If I could feel like this again, all the time - I could go back to work!  Praying, hoping and crossing my fingers.  Even if it doesn't last - God is good and he is still on the throne.

Here I am on vacation - sitting in my brother's, girlfriend's house.  Everyone else went to the amusement park.  I can't go.  I am sitting here with my feet so swollen I can hardly walk.  

Don't feel sorry for me - I am making the best of it.  It's hot, but not humid, so I am able to sit on the back porch and enjoy the view of the mountains.  BEAUTIFUL!!!  And believe it or not, even though everything here is a shade of brown (to match the desert floor), I also enjoy looking at the different houses going up and down the hills in Leslie's neighborhood.  Some have flat roofs, some are peaked.  Some have adobe fences with cute little spanish gates going into their gardens, some have brick and wrought iron fences.  Some have glass blocks, placed sporadically along the sides of the homes.  

It's also super quiet here - you can actually hear yourself think.

I have taken a couple of short walks (about a block at a time) around her neighborhood - I had forgotten that there are quite a few desert plants that I think are absolutely gorgeous.  The desert willow is my favorite, it is a lot like a crape myrtle in that you can leave it to grow as a bush or you can trim the suckers around the trunk and it's a beautiful tree.  And the blooms smell absolutely delicious!  My preference are the ones that are trimmed to be trees.  I also like the thin leaved Yuccas with the salmon colored flowers.  Just because there isn't grass and all the yards are different color rocks - I still find beauty in this majestic area.

I plan on driving into the mountains with my niece tonight.  I am afraid of heights, but I do okay if I drive instead of ride.  

God is so wonderful and amazing - there is beauty every single place on this earth - you just have to open your eyes.  I thank Jesus that I wake up everyday and that I can see beautiful things and smell wonderful scents, I can hear my grandchildren laughing and I can actually hear "quiet", I can feel all the textures around me.  I am alive and I can praise Him.  

Sick or healthy, happy or sad, tired or rejuvenated - Thank you Lord for each and every day that you give me.

I had a thought - maybe it's not an original one, but it is new to me.

Doesn't it make sense that doctors and scientists need to find a definitive diagnostic test for Lupus (blood work, x-ray, biopsy, urine sample, etc)?  

The ANA can come back negative if the patient is not in a flair during the blood draw.  It can also come back positive on people that do not have lupus.

The Double Stranded DNA comes back inconclusive in 8 out of 10 patients.

Other than that, all doctors have is a list of 11 criteria, of which a patient needs to exhibit 4 of the symptoms in order to be diagnosed with the "possibility" of Lupus.  The problem is that the symptoms begin (for most of us) very slowly and sporadically and doctors don't connect the dots because it may be months or years between one symptom and the next.  So, unless you are exhibiting at least four of the symptoms on the list at the time of your appointment, they don't even know to investigate the possibility of this horrible disease.  Therefore; we are left suffering and misdiagnosed.

If you are not familiar with the list of 11 criteria, they are as follows:

The “Eleven Criteria”

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it.

(The "Eleven Criteria" was copied from an article from the lupus research institute.  For more information, please visit their website at http://www.lupusresearchinstitute.org)

I have made a new facebook friend. I found her by reading her story on one of the lupus pages.  She is really inspiring and very comical.  She seems to deal with this disease the same way that I do - humor and faith.  I don't think I could get through a single day without them.

Even though I have not met her in person - I have grown to admire her (in a very short span of time).

Even though I knew that I wasn't the only person suffering with this disease, I felt very isolated because I didn't know anyone (personally) that has it.  I could read all kinds of quotes about "I smile on the ouside, but I am dying on the inside" or "I don't look sick and you don't look stupid" , etc.  Or dealing with friends and family that don't understand and get angry and frustrated because I am not able to be who I was, or think that I am exagerating my symptoms.  I am scared to mention new symptoms because people think I am a hypochondriac. 

The biggest kicks so far have come from someone that should love me unconditionally and, as a nurse should be most understanding and/or sympathetic.  I realize though that I don't need sympathy and I ABSOLUTELY don't want or need pity! (A little empathy would be nice) If someone chooses to be disrespectful, rude and downright vile regarding my disease - family or not, I must write them out of my life.  The stress makes me flare up and I want to live a long time!

All that being said, lets get back to my new friend - I don't feel so isolated anymore, but I am very sad. This disease sucks and I wouldn't wish it upon Satan, himself.  So my heart broke this morning when I saw her post on fb.  She isn't feeling well, she's tired of wearing the fake smile, she is praying for satan to get off her back, she is tired of being tired....I know EXACTLY how she feels and I just want her to not have lupus! 

So, friend I am praying for you. I am praying for us. I am praying for all the lupies near and far.