upcoming appointment....

 Dearest Betty,

        It was so good to hear from you. How are you doing? I hope well. I have been thinking of you and Helen lately. Is she still coping?

       Your prayers have been "felt" The Lord has given me peace about the appointment. Mom and Dad have planned to make the trip a little get-away. My brother is going to stay here in WV with family and friends. Mom, dad and I are going to the appointment on the 19th and we are going to stay overnight to sight-see on friday and then maks our way home from there.

       I know that you are busey,so I will talk to you later. I will try to keep everyone updated about the appointment etc.

                                                                          Sending Love & Prayers to You My Friend,

                                                                                                 Morgan

Morgan

Hey sweetie

Have a wonderful time with your parents.  Sounds like a great opportunity to get to see some great historical sites (I'd love to see Philly).

try to enjoy the quality time with mom & dad.  You'll be all grown up and gone to college before you know it.

I'll also pray for a safe & Enjoyable trip for you all.  Bring lotsa pillows and a special blanket for you to be able to ride in the car more comfy.  When I travel, I bring my own pillows, soft cozy blankie and I also call the front desk and ask for more, just so I have enough to keep me as comfy as possible.  Theres no charge and they will have a person from the maid service bring them right to your room.  Take care of yourself and stay comfortable.  Long car rides can be very difficult, so be kind to your little body and you'll enjoy the sites more too.

Hugs honey

Always in my prayers

Betty

 Thanks for the tips Betty! 

  I often tend to worry when we have long trips to go on. It's almost impossible to get "comfortable" enough to endure a long journey. I know that I will probably be awake most of the night just thinking about tomorrow, so I plan to dress comfy and bring my pillows and such so that I can try to get some shut eye.

  I will try to get some pictures and post them so that you can see a little a Philly.

  I have such a busey day ahead. I still have to pack and get things ready to go. I need to get my work from school today, so that I can get all of it finished over the weekend.

  Please keep me in your prayers. I will continue to pray for you and Helen.

                                                                                                     Love & Prayers My Friend,

                                                                                                                     Morgan

    Denise,

           thank you so much for your thoughts and prayers. They are greatly appreciated.

My appointment went alright. It was over three hours long! My parents and I think that this doctor may be a good one. He did the normal exam and such and he ran the ANA panel to see if the lupus diagnosis is correct(sice there were no further testing done after a positive ANA) This doctor thinks that I may have RND, but no diagnosis yet. This is a rare issue. There is no medicine used for treatments. Only brutal therapy that forces you to do the very things that hurt you the worst. The therapy goes in 6 hour sessions. NON-STOP. This is thought to "fix" the misfires of the nerves. This treatment has worked for his other patients with this, so if I do in fact have this maybe this is the right doc.? Just please keep me in your prayers. I have been warned that this is very,very painful and no matter how many tears come you MUST do this to get some relief. Thanks agian for your time and prayers.

                                                                   Wishes of Good Health to You My Friend,

                                                                                        Morgan

Dear Morgan,

I will pray that this is the right doctor and that he can help you find relief, although I wish there was a less painful way for you to find it.

I will also pray that God grants you the inner and physical strength you will need to accept and deal with whatever the outcome is, either a very painful treatment and possible relief or a lifetime of continued pain.  

Having lived in pain since I was 12, and I am now 57, I can tell you that it is important to take care of the other parts of your life, such as your emotional and spiritual health and to make sure you just have fun once in a while.  Pain takes away so much in our lives, don't let it take away your sense of humor and your ability to enjoy things that you like.  And if you can't do some of those things for physical reasons, then find new things.  I tell everyone I know who is going to the hospital to hold onto their sense of humor, as it will be tested and I think there are times my ability to laugh at myself and others is the only thing that has gotten me through with my sanity in place. I'm not saying to go around giggling all the time, but look for the humor in daily activities or watch a funny movie rather than a sad one.

You sound like a very bright, strong young woman and I am sure you will find a way to handle whatever trials God sends you.

Denise,

    thank you for the advice and prayers.

As I said before, we won't know anything until next Thursday, but that seems like such a long time away. We'll get there though. The treatment plan for this issue that might end up being my diagnosis scares me, but the Lord has given me the strength to last this long, He will continue to carry me on. He has brought me through so much already... I don't think that I caould doubt Him.

I too like to turn my "issues" into some form of fun since I can't really do much right now. Anyway, I use a cane to walk. My friends and I enjoy laughing at it. We joke and say that no one will bother me b/c I will wack em'.

It's been a pleasure talking with you. I will talk with you a little later.

                                                             wishes of good health to you,

                                                                              Morgan

 Stephanie,

     thank you for your prayers. I'm sorry to hear that you too have had issues in your childhood years.

I think that this may be a good doctor. We ran more tests to rule everything out once agian and I should know something by next thursday.

                                                                                                    wishes of good health to you my friend,

                                                                                                                    Morgan

                          * Please keep me updated about your surgery.

Dear Stephanie,

I am sorry to hear that you are facing more surgery.  I have had 4 surgeries including, fusion with hardware, in my lumbar spine and can empathize with what you must be feeling.  Back pain can be so horrible, I know, I have lived with it for 45 years.  

I fortunately started to see a pain specialist in 1998, and after attempts with several other medical treatments he implanted an intrathecal morphine pump into my abdomen that delivers morphine, to my spine and I now enjoy more pain relief than I have ever known.

The pump is right for everyone, but if your pain continues I urge you to see a pain specialist and ask him or her if this might be a good treatment for you to try.  The pump is completely implanted and you are not able to change the settings or do anything to it. The doctor manages all the dosages, delivery rate and everything else by computer and checks it every time you have it filled.  I get mine filled every 6 weeks but that depends on a person's dosage and the pump model.

I hope you have positive results from this surgery, and wish you all the best in the future..

  Catherine,

       I think that I may only know a small portion of your pain. You've been through the ringer. I do know what you mean about the meds though. I hate pills of any form. On many ocassions mom had to "beg" me to take those things. You just get so wore out from the process. I think that the things that help me most are:

     -Realizeing that I'm not the only one

     -Finding some one in greater need than I and thne helping them in any way possible

     -Don't dwell on the disorder; don't make yourself known as the lady who has lupus, let your personality shine through no matter what the pain level.Believe me I know that this is way easier said than done.

     -Don't bring up the "old you" except the you now. Enjoy what you can do now no matter how little it is.

     -Christ: THIS IS NUMBER ONE FOR ME. I have no idea where I would be without Him. I'm not sure if you are the "religious" type or not. Maybe give it a try.?

      -Find a support group that is especially made for your illness.

I'm sorry that I can't help any more than this. Let me know if ya need anything.

                                                                  wishes of good health to you my friend,

                                                                                                  Morgan

Thank you for getting back to me.. Yes Iam a believer in GOD!! If it wasnt for him, i think i would of given up by know. Do u know of any support groups in the Dallas,Texas area?? Thank u for the kind words.May GOD Bless You...Catherine

 Catherine,

       I live in west virginia, so I really don't know if there are support groups there or not. Maybe call your doctor's office. Normally, your doctor will think it to be a good idea for you to do so. The way that I have found support has been over the internet. Just type lupus support groups in texas into your bar code. Good luck! Sorry that I can't be of more help to you.

                                                                                       wishes of good health to you my friend,

                                                                                                           Morgan

 Hey Mary Helen,

            it's good to hear from you. I'm sorry to hear that you are struggling.

My appointment went alright. I as well as mom and dad think that this doctor is a good one, but you know how that goes. You think one thing and it turns out to be something totally different. We may be looking at another different diagnosis. I won't know anything until thursday or friday though. Since my ANA test came back positive my doctor asumed that I had lupus and began treatments for it, but there is a whole panel that has to be done in order to diagnose lupus, so somewhere the test was missed, I was diagnosed and began heavy duty lupus meds. I feel really bad though... Mom told everyone that we had found the answer and that relief was on the way, but now we are looking into this illness referred to as RND. There is no test to prove this though. That's why the doctor did the ANA panel to make sure that the test was either right/wrong. No medications are used to treat the RND. Just extreme therapies. Six hour long sessions. You are forced to do the most painful things possible. This is said to retrain the nerves in my body.( if I do in fact have RND, but as I stated before I have to wait on the test to caome back on thurs/fri.)

There is very little information on this illness, but if you are interested just look up childhood RND. Most websites are based on the treatments that my doctor formed years ago while in washington state. His name is doc. Sherry.

I need to go though. I will get back with you very soon!

                                                                           wishes of good health to you my friend,

                                                                                                 Morgan

 Oh Momma Jo,

        it's so good to hear from you! I was really beginning to worry about you. I should have been a better daughter and wrote you to check up on ya.

      I'm so terribly sorry that those dentists were so horrible to you. I strongly dislike going to see the dentist. I have to go on Thursday to have some work done on my teeth. All of that medicine did horrible things to my teeth.

    Thank you for your prayers momma. I really appreciate it. My appointment went alright. I, as well as my folks believe that this is a good doctor. I'm nervosily awaiting test results that should come on thursday. No matter the out come I have a long hard road ahead of me.

     I will talk to you very soon! I will pray that the Lord will give you a speedy recovery. ; )

                                                                                   Sending Much Love & Many Prayers to You Momma,

                                                                                                            Morgan

NEVER FEAR LITTLE ONE.I HAVE BEEN THE ONE WHO HAS NOT BEEN CHECKING IN LATELY.THAT NEW WEBSITE FACEBOOK POPPED UP AND IT SEEMS LIKE I AM WRITING THE SAME PEOPLE ON 3 DIFFERENT SITES.THEN THEY CHANGED THE COMCAST FORMAT TO THIS SMARTZONE.IT REALLY TOOK ME A WHILE TO FIGURE OUT HOW TO OPEN A MESSAGE.THE FUNNY THING ABOUT IT IS THAT MY HUSBAND WHO DOESN'T EVEN KNOW HOW TO SEND AN EMAIL FIGURED OUT THAT I HAD TO DOUBLE CLICK  ON THE MESSAGE TO READ IT.

LAST SEPTEMBER I HAD SINUS SURGERY.BUT ALL THESE DOCTORS ARE SO SPECIALIZED THEY ONLY DO ONE THING.IF THERE IS SOMETHING ELSE WRONG YOU HAVE TO CONSULT WITH ANOTHER ONE.I AM SURE YOU HAVE BEEN THROUGH WHAT I AM TALKING ABOUT.I WANTED HER TO CULTURE AROUND THE IMPLANT THAT WAS CAUSING PROBLEMS BECAUSE THE ORAL SURGEON WHO IMPLANTED IT SAID THAT HIS BEST FRIEND HAD THE SAME PROBLEM AND THE INFECTION CONTINUED EVEN THOUGH THE IMPLANT WAS REMOVED.SO HER JOB WAS TO CLEAN OUT MY SINUSES SO THAT WE COULD SAY THAT THE INFECTION WAS NOT COMING FROM THERE.I WISH SHE WOULD HAVE REMOVED IT BACK THEN.I WOULD HAVE HAD THIS ALL BEHIND ME BY NOW.ATLAST....A YEAR AND A HALF LATER I HAD AN ACTUAL CULTURE SHOWING STAPH AND YEAST INFECTION.AND YOU KNOW PEOPLE WITH FIBRO HAVE TOO MUCH YEAST IN THEM TO START WITH.I WAS ABLE TO MAKE T-DAY TO SEE MY NEW GRANDSON WHO WAS BORN OCT.11TH.THEY KEPT HIM IN THE HOSPITAL FOR A MONTH.I WAS SO WORRIED.THEY KEPT SAYING HIS NOSTRILS FLARED AND THEY THOUGH HE WASN'T GETTING ENOUGH OXYGEN.WHICH REALLY SCARED ME.I DIDNT WANT TO GO AROUND HIM WITH THIS STAPH.HIS IMMUNE SYSYTEM COULD BE BAD LIKE MINE.POSSIBLY INHERITED FROM ME...HE IS BI-RACIAL.I HAVE 3 BI-RACIAL GRANDS.ELIJAH WHO IS 10 AND RAVEN WHO IS 6 AND MICAH WHO IS ALMOST 5 MONTHS OLD.I MISS THEM SO MUCH.BUT EVEN THOUGH MY OLDEST DAUGHTER IS A NURSE AND SAYS I DONT HAVE THE BAD KIND OF STAPH THAT COULD KILL YOU.I SHOULDN'T BE CONTAGIOUS.BUT I DO NOT WANT TO TAKE ANY CHANCES.I AM SORRY I WAS NOT ABLE TO GIVE YOU A GOOD PEP TALK ABOUT YOUR FEARS BEFORE YOU WENT.BUT YOU MUST EXPLAIN WHAT THEY DID AND WHAT THERE PLAN OF ACTION IS.I FORGET WHERE YOU LIVE.BUT I LIVE IN JAX FL.AND I DID WORK AT MAYO HERE FOR 7 YEARS.SO WHAT WAS YOUR TRIP LIKE.I KNOW THEY ONLY HAD THAT LOUSY MARRIOTT CLOSE BY.THERE WERE NO OTHER HOTELS WITHIN WALKING DISTANCE WHEN I WORKED THERE.AND THEY CHARGED WAY TOOO MUCH IN ALL OF OUR OPINIONS.I KNOW THE PEOPLE WHO DONATED THAT LAND TO MAYO.THE DAVIS'S.THE OWN ALL THE WINN DIXIE'S ETC....THEY ARE PRETTY WELL KNOWN HERE.IN FACT WHEN I WAS A HAIRDRESSER A MILLION YEARS AGO I DID THE DAVIS'S AND THE KOGERS HAIR STYLES.THEY WERE OLD MONEY AND VERY SWEET AND KIND.NOT LIKE THE NEW VOU' RICHE'.I AM GETTING WEARY BUT JUST HAD TO CHECK IN AGAIN ON YOU.DID YOU GO TO THE MAYO IN FL.,MINN.,OR ARIZONA,MAMMA JO, LOVE YOU GIRL.

 Momma Jo,

            I went to Philly children's hospital, but it was alot like what you were explaining about Mayo. There aren't any hotels near the hospital and the ones that you do find are so expensive. The cheapest hotel that we found was $150 a night.

           Right now I have to wait on some tests. The doctor thinks that I may have RND. The only thing that I can do for it is therapy that causes unbarable pain. I will further explain if when the tests come back telling that I do have this, but you never know what crazy things that tests show. No diagnosis... yet. Sorry I need to run, I will talk to you soon!

                                                                           Sending Much Love & Many Prayers,

                                                                                                Morgan

                                                                                                                XOXOXO

MORGAN WHAT IS RND.I DONT THINK I HAVE EVER HEARD OF IT.SO THEY PUT YOU THROUGH A BATTERY OF TEST HUH.AND YOU KNOW WHAT ALMOST EVERY TEST I HAVE IT ALWAYS IS NORMAL.I HAD A COLONOSCOPY FOR BAD STOMACH PAINS....RESULTS NORMAL....BLOOD WORK TO CHECK MY LVFTS AND EVERYTHING ELSE.NORMAL.AND I KNOW IN THE PAST I HAVE A SLIGHT ANEMIC AND HIGH CHOLESTERAL.BUT THE RX FOR THAT EATS MY STOMACH UP.ALL THE THINGS THAT HURT ARE NEVER EXPLAINED.IT IS JUST LIKE THERE IS NO ANSWER.SOMETIMES I WISH SOMETHING WOULD COME BACK POSITIVE.SO THAT ATLEAST WE COULD TREAT IT.WHEN IT ALL COMES BACK NORMAL THEN HOW DO YOU TREAT THAT.I

I DO HAVE A GREAT PN MANG. DOCTOR THOUGH.AHEAD OF HIS TIME.ISNT'T AFRAID OF THE DEA.THEY SAID HE WROTE TOO MANY NARCOTICS.HE SAID MY SPECIALTY IS PAIN MANG.WHAT DO YOU THINK I SHOULD WRITE.ANTIBIOTICS.EVERYBODY I TREAT IS IN GREAT PAIN.HE IS A REAL PIONEER FOR HIS PATIENTS.HE ALWAYS RESPECTS THEIR CHOICES.HE ALWAYS KNOCKS ME OUT FOR PROCEDURES.I LOVE IT.I WILL BE TALKING MY HEAD OFF AS USUAL.THEN ALL OF A SUDDEN I AM AWAKE WITH SOME SWEET LITTLE GIRL AND SHE IS ASKING ME IF I WANT SPRITE OR COKE TO DRINK.THEY REALLY TREAT ME LIKE A PERSON.

BUT I HAVE NOTICED THAT HE DOES SOME PEOPLE IN THE OFFICE.I GUESS THEY PREFER THAT.ONCE HE TOLD ME HE WAS SCARED BECAUSE HE HAD TO HAVE A ROOT CANAL.THE LAST TIME I SAW HIM WAS DEC.18TH.AND HE WAS CRYING BECAUSE HIS MOM HAD PANCREATIC CANCER.AND HE WAS GOING TO THE PHILIPINES TO BE WITH HER.SHE ONLY HAD 6 MONHS TO LIVE.AND HE CAME OVER TO THE TABLE AND HUGGED ME CRYING FOR HIS MOM.HE ISNT YOUNG EITHER.HE IS PROBABLY CLOSE TO ABOUT 50 YEARS OLD.BUT HE ACTS LIKE YOU OR ME.

TELL ME WHAT THE NEW DEAL IS WITH WHAT EVER THEY SAY THAT WILL HELP YOU.I TOLD YOU .THEY BUILD ONE OR 2 HOTELS NEAR THE PLACE AND THEY HAVE YOU.IT IS REALLY TAKING ADVANTAGE OF PEOPLE BECAUSE THEY KNOW THAT THERE IS NO OTHER PLACES NEAR BY TO STAY.I THINK THAT IS SO HORRIBLE TO DO TO PEOPLE WHO ALREADY ARE STRAPPED FOR MEDICAL BILLS ETC...YOU HAVE TO HAVE MONEY TO EAT OUT EVERY MEAL.WELL I JUST THINK ITS TERRIBLE THE WAY THEY DO SICK PEOPLE.I GOTTA GET SOME REST SWEETIE BUT THANKS FOR KEEPING ME IN THE LOOP.YOU ARE ONE OF THE BRAVEST KIDS I KNOW.YOU GO THROUGH THINGS THAT GROWN PEOPLE COULD NOT ENDURE.AND IT JUST GETS MY TEMPER UP WHEN PEOPLE SAY WE ARE PEOPLE WHO HAVE A LOW TOLERANCE FOR PAIN.

MAN OH MAN LET THEM LIVE IN OUR BODIES FOR A FEW YEARS.THEY ARE THE ONES WHO ARE THE FIRST ONES TO CRY FOR SOME RX FOR PAIN.WAS IT JUST YOUR MOMMA AND YOU THAT WENT? I AM SO SORRY YOU HAVE TO GO THROUGH THIS WITHOUT ANY PEERS YOUR AGE TO TALK TO.MAYBE YOU MIGHT MEET SOME NOW.KEEP ME UPDATED WHEN YOU FIND OUT WHAT THEY ARE GOING TO DO.I DID JUST GET A TAI CHI TAPE AND SOME FIT FLOP SANDALS THAT WORK OUT YOUR LEGS WHEN YOU WALK.I AM GOING TO START OUT SLOW.I JUST HAVE TO GET SOME OF THIS WEIGHT OFF.I LOVE YA HONEY.YOU TAKE CARE OF YOUR SELF AND DONT WORRY ABOUT WRITING BACK TO ME.YOU REST FIRST.I THINK OF YOU AS A DAUGHTER.MOMMA JO

 Momma Jo,

       I'm glad to hear that you have found a good doctor. Thant's great!

RND: I don't want to tell ya too much about it until I know for sure what is going on, but...

                     this is what the paper ( the one that my docotr gave me) says to tell folks:

                                                 In simple terms you can explain that RND is a medical issue invlving the nerves going to the blood vessels. These nerves are overactive and cause horrindous pain. The treatment paln is a special formulation of therapies that can help, but these therapies are often extremely painful. Less than 200,000 people in the U.S.  have RND, so it is classified as a "rare disease". Many doctors don't know what RND is or how to treat it.

      Mom, Dad and I went to Philly. I was a really, really long trip.

      I have to go to the dentist tomorrow to have some work done, any advice. I've never done this kind of thing before.

     I know what you mean when you say that you just wish that something would come back positive just so that you know what monster that you are fighting and then begin treatments. I'm suppose to get my results tommorow, but you know how that goes.

    I will talk to you soon Momma! ;  )

                                                                                                                   Much Love,

                                                                                                                          Morgan

ABOUT DENTAL PROCEDURE I CANNOT THINK OF ANYTHING TO SAY EXCEPT THAT THEY ARE NECESSARY THINGS EVERYBODY HATES TO GO TO.AND I THINK THAT WHAT YOU HAVE MAY BE LINKED TO MYOFASCIAL PAIN SYNDROME.THERE IS A CLEAR LAYRER OF STUFF AROUND EACH NERVE.IT PROVIDES A WAY FOR THE TOXINS TO GET OUT OF OUR NERVES AND MUSCLES AND BONES AND GET OUT OF OUR BOODIES.THIS WAS THE FIRST DIAGNOSISI I GOT.AND I COULDNT FIND A THING ABOUT IT.GO TO NORD.THAT IS THE NATIONAL ORGANIZAITON FOR RARE DISEASES.IT SHOULD GIVE YOU PLENTY OF INFO.....THEY ASK FOR DONATIONS...BUT THE PEOPLE WHO THEY ARE ASKING DONATIONS OF ARE TO HELP US.SO DONT LET THAT STOP YOU .IT WILL STILL ANSWER YOUR QUESTIONS.HOW ARE YOU FEELING TODAY.I HAVE TO HAVE AN MRI OF MY T-SPINE.MY DOC SAYS THAT HE THINKS MY STOMACH PAIN IS COMING FROM MY T=SPINE.SINCE ALL GI TEST HAVE BEEN DONE AND ALL SAY EVERYTHING IS NORMAL.I HATE THAT WORD.NORMAL.WE AREN'T NORMAL.AND I AM TIRED OF BEING TOLD SO.IT IS LIKE THEY ARE CALLING ME A LIAR.I SURE AM IN A FOUL MOOD TODAY.DONT LET IT WASH OFF ON YOU.I LOVE YOU.MOMMA JO

ABOUT DENTAL PROCEDURE I CANNOT THINK OF ANYTHING TO SAY EXCEPT THAT THEY ARE NECESSARY THINGS EVERYBODY HATES TO GO TO.AND I THINK THAT WHAT YOU HAVE MAY BE LINKED TO MYOFASCIAL PAIN SYNDROME.THERE IS A CLEAR LAYRER OF STUFF AROUND EACH NERVE.IT PROVIDES A WAY FOR THE TOXINS TO GET OUT OF OUR NERVES AND MUSCLES AND BONES AND GET OUT OF OUR BOODIES.THIS WAS THE FIRST DIAGNOSISI I GOT.AND I COULDNT FIND A THING ABOUT IT.GO TO NORD.THAT IS THE NATIONAL ORGANIZAITON FOR RARE DISEASES.IT SHOULD GIVE YOU PLENTY OF INFO.....THEY ASK FOR DONATIONS...BUT THE PEOPLE WHO THEY ARE ASKING DONATIONS OF ARE TO HELP US.SO DONT LET THAT STOP YOU .IT WILL STILL ANSWER YOUR QUESTIONS.HOW ARE YOU FEELING TODAY.I HAVE TO HAVE AN MRI OF MY T-SPINE.MY DOC SAYS THAT HE THINKS MY STOMACH PAIN IS COMING FROM MY T=SPINE.SINCE ALL GI TEST HAVE BEEN DONE AND ALL SAY EVERYTHING IS NORMAL.I HATE THAT WORD.NORMAL.WE AREN'T NORMAL.AND I AM TIRED OF BEING TOLD SO.IT IS LIKE THEY ARE CALLING ME A LIAR.I SURE AM IN A FOUL MOOD TODAY.DONT LET IT WASH OFF ON YOU.I LOVE YOU.MOMMA JO

 Thanks Momma Jo,

             the appointment went well. I coulden't feel a thing, but the shot really hurt b/c even my mouth is sore to touch. Anyway, I have two more appointments and all of the work will be done.

            My test results came back and I do have RND. I'm really sore today. It's kind of damp and moist here.

           I will talk to you soon!

                                                                                                               Lots of Love,

                                                                                                                 Morgan

                                                                                                                                  xoxo

 Thanks Momma Jo,

             the appointment went well. I coulden't feel a thing, but the shot really hurt b/c even my mouth is sore to touch. Anyway, I have two more appointments and all of the work will be done.

            My test results came back and I do have RND. I'm really sore today. It's kind of damp and moist here.

           I will talk to you soon!

                                                                                                               Lots of Love,

                                                                                                                 Morgan

                                                                                                                                  xoxo