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Help Me Heal

$380 of $500 goal

Raised by 9 people in 44 months
Marie Mello   WESTFIELD, MA
My name is Marie J Mello, I am a single mother to 3 young children- a 10 year old girl, sweetest girl on earth and 6 year old boy & girl twins, my keys to my heart. I do not have family support, and don't have many friends (other than those wonderful people online in my support groups who have been such a blessing, and those who are on facebook and twitter who I have never met in person, but have made my life much happier).I live a quiet life with just myself, my 20 year old niece and my 3 young children.

My life "looks" normal on the outside to most everyone I know, but inside, I am sick...VERY sick. I have conquered many things in my lifetime of 33 years, many battles and hurdles, such as sexual, emotional, and physical abuse from early childhood all the way into my adult years, and once I conquered that, I found out I have Systemic Lupus and Fibromyalgia, along with PASH (Pseudoangiomatous Stromal Hyperplasia), a rare bleeding disorder in which I don't clot (and suffer from nose bleeds that come on suddenly and last for weeks at a time and then disappear for months and then reappear again), and newly diagnosed as of December 2013 with something rare called Syringomyelia (I have several syrinx(es) sort of like cysts on my thoracic and cervical spine. It's VERY painful and if I don't have a Lupus flare and have painful joints, I have constant spinal pain that feels like zapping, stabbing pain, in which I take Tramadol, Fentanyl pain patches, and Ketamine daily to help assist with that
. I also suffer from gastrointestinal issues- have had several tests done to figure out what shall be done to correct my situation. My colon is NON-functioning at this point and needs to come out. I know that my quality of life will improve greatly once my colon is removed. :)

I have lots of infections and even have been hospitalized MANY times- several times with Meningitis, Kidney Infections, and pneumonia many times. I have also had problems with my "bathroom" duties since being a child and have always been told "you're just constipated" and sent home with laxatives. Now, MANY years later, and with what could have been FIXED many years ago, I have been seeing a Gastroenterologist Dr. who is amazing, and he said I have a Tortuous Mega Colon Long and Redundant (long, loopy, and twisted) and Colonic Inertia (very slow transit- removal of waste), and he referred me immediately to a surgeon. I went in to meet the surgeon Dr. in March of 2013, and was diagnosed with a grade 2 rectocele (bowel prolapse)- my feces prolapse into my vaginal wall and when I have to have a BM (bowel movement) I have to splint (use my finger inside my girly part...not so much fun! And so naturally I quickly volunteered for a trans-anal rectocele repair. It went horribly wrong!! The surgeon Dr. ended up botching the repair and I ended up with a MUCH WORSE (grade 3) rectocele than I had previously! AND I now have a full pelvic prolapse and may need to be on an ostomy bag after my colon removal- which I am absolutely FINE with. At this point, I am in so much pain so many days out of the week, and NOTHING makes the abdominal pain better, on top of all my other pain, that I feel like it will be a blessing to simply be alive and well with all of the issues that I survive with.


I have Faith that God will heal me, along with the funding that all of you may help me with so that I can get the tests and surgeries I need so desperately. :) I'm so ready to start the process of getting back in the game (I stayed away from Dr.s since April, because I had been admitted to the hospital with severe blood loss, as you can read in my updates in my journal entries). But, I'm ready now, and stronger mentally than ever...I'm getting frail and weak physically, and I keep fainting, I can't eat, I NEED to get surgery, and the only thing stopping me is MONEY. I can't get the tests I need to figure out my bleeding disorder, and to give me a PET scan to see if I have cancer, and other tests to figure out why my thyroid is so enlarged. Medicare is unwilling to pay for several of these tests, and I am barely able to get by each month, as I live off of disability, and have a very sick son- he has chronic asthma and gets admitted to the hospital several times per year....so I desperately NEED your help. I've NEVER asked for help, and feel strange even asking for help, but know that God steered me in this direction for a reason. I know that we can do this together. I know that there are people and organizations, churches, other places and foundations that MAY possibly be able to help fund me and I pray DAY and NIGHT that my goal may even so much as get half way there. :)

Please, could you kindly pass this on to everyone you know that may be able to help fund my foundation? Please SHARE & copy and paste my DIRECT LINK:

http://www.gofundme.com/MarieJune

God Bless each and every one of you who have followed my journey. It has been one of learning, one of soul searching, and one of tears of sorrow and joy....I have found myself at some of my lowest points, yet those were the days that made me stronger. I now know that God gave me those days as GIFTS because I am stronger now because of those days! I am getting sicker and am so frail and ill. I know time is running out for me. I pray to get the testing I need soon. Please make my miracle happen so that I can know for sure that my surgeries can happen and I can begin to HEAL and start my life again. I am ready to LIVE and not let life pass me by. I am ready to get out of bed, and not be a vegetable...as I have been for months now. Help me make my dreams come true and make my miracle of health come true. Help me start my journey of healing. :) Bless your hearts and souls for being there emotionally and for all your prayers during some of my toughest times. It really helped to know I had a whole army behind me. :) I'm ready for what's to come in 2014. Let's bring it on. My children deserve their Mommy to be a vibrant flower that all 33 year old moms are...not one that lives in her bed 98% of her day and can't so much as shower by herself...let's do this and never look back. Let's make 2014 my year to start again and take control of my life and take it by the ballz and kick sickness in the booty ;) I know I can beat these things (yes, I may be sick with MANY illnesses and diseases, but NOTHING can hold me down once I get my surgeries)....because I have great people standing behind me. And for that I am one thankful girl, and with Faith, ANYTHING can happen, and my Faith is stronger than ever. Please, share my link and help me HEAL. :)

http://www.gofundme.com/MarieJune


Sincerely,
~~Marie J~~
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Update 43
31 months ago
~Another Emergency Room Visit~

I had another (my third) ER visit on the 17th. I doubled over with severe pain and bloating in my abdomen- MUCH worse than normal- I noticed it was more located under my right ribs this time, and also lower too, around my lower right area of my abdomen, but since I have my apendix out, I knew it elimintated that issue.

It seemed to come in waves (the pain). It was SO severe!! I stayed up all night and finally by the time I sent the kids to school, I was doubled over in fetal position on the floor clutching my stomach with both fists and gasping for air. My face was flaming red and I felt this intense pressure and pain in my chest and in my neck too. It would stab with pain and then would turn to an aching pain to where I would moan and could try to catch my breath and then I would try to move and then would begin again! I took a couple Lorazepam (Ativan) to see if that would help and thank God that DID help a tiny bit- enough to GET me to the Emergency Room.

I got there and my Blood Pressure was 100/86....with a heart rate of 98.....the nurse asked "are you in a bit of pain?" as I clutched my abdomen...I was bawling my eyes out and as I tried doing lamaze breathing, I said with a half hearted forced smile, "yes, miss, I truly am, I hope to get the help I need, because this is awful". She was so sweet, and got me right into a room, since my lower number was high (higher than normal- which is 80- and my normal bp is usually 110/60....and lately I have been running super low of 92/76).

Once I got in they took tons of blood and labs and did the full work up, I drank that yummy drink for a nice CT scan, even though I have had way too many scans in my lifetime, but at this point, I can't risk this kind of pain, so I was willing to get one...and so I had my two CT contrast drinks in the delicious vanilla flavor. And got fluids through the IV, had excellent nurses, wonderful dr.s and staff. I went to a different hospital than the other ones I went to before, and I was VERY thrilled with my treatment. :)

My results after getting pain meds, and full treatment after hours of a day stay, were: bowel obstruction which I have had loose stools but I guess I have an obstuction in my UPPER colon, and need to cleanse it out, so I have to take a nice thick liquid called "Lactulose" a few times per day for several days to get my liver working correctly and also get the blockage fixed, and if it doesn't correct, then I will have to go back in and get it fixed the "other" way....and also have a hemorrhagic (blood filled) cyst inside my right ovary causing me pain and it hasn't erupted yet....I have ALWAYS had issues with my left ovary, and never had issues with my right ovary....my left ovary is actually doubly the size of my right ovary, so this was a little strange, and of all the times that they have found cysts, they've always seen the hemorrhagic cysts emptied already inside my left ovary.....but this time it is inside my right ovary and is still hanging on, which is causing me extreme pain when I move. I pray it does its' thing soon! Because coughing, sneezing, laughing, moving, stretching, anything at all, HURTS!!! And not to mention the pain I already have with the blockage going on under my ribs!! I am just one blocked up lady.....I am certainly looking forward to getting this all finished.

Strange things have been happening: I have been losing my hair in huge clumps. I asked Jasmine to check my hair to see if I have bald spots, and she saw some on the very back of my scalp- thank God they are NOT on the top of my head! It's sad....I'm not sure if it's the lupus, or if it's something else, but each time I pull my hair out of my braid or pony tail, I lose tons of hair, and each time I wash my hair, I lose it by the handful. :/ I take vitamins and drink ensure, and don't know what else to do, I guess that's just what's in store for me....and I accept it, because I don't have a choice....the last time I took a picture, because I was so shocked!

I have several dr appts coming up- I made sure to make them in the afternoons so that I will be able to be awake for them and not feel so tired and achy if it's morning appts....who am I kidding when I make morning appts?! I take these appts as if I can actually BE THERE! As if I could? That would be great, but that person isn't this girl right here, the person who fights with herself just to get off the couch to get up to struggle to go 15 steps to the bathroom in my own home. I hold my own pee all day because my pain is so bad that I have trouble getting up. So sometimes (ok, MOST times, its just easier to just hold my own pee than get up and go)...so forget actually get out and drive to a dr appt! that would be a miracle. :(

So I am learning to be honest and not hide behind the mask of who I PRETEND to be and I am learning to be REAL and HONEST and let everyone know what my life is really like....and I am going to also be doing vlogs (video logs) of our lives also....we have started on youtube and we will make many more...I have hid myself and made myself look so happy and secure, with make up and smiley, but I am going to make one called "a day in the life" and it will show what a day in the life of THE MELLO FAMILY will look like....and you will see exactly what 24 hours looks like. It will be hard for me to show what I am....because I am not much more than a vegetable at this point....some days better than others, but I hardly get up anymore, I hardly go anywhere, it's a project just to do my hair, just to put on clothing, I run out of breath just trying to brush my teeth....I know I need help and the drs. are GOING to help me! I am not giving up! I am going to fight this fight because I have faith that I can get an answer to why I feel so sick...I know something is terribly wrong with me, and I know there's a reason to why I'm losing so much weight!! I am a single mom and don't need to end my battle with life so young! I need to WIN the battle and LIVE this life to see my kids graduate school, watch them marry, live until I'm old and die when I've lived my entire life....I'm not ready to go, so why the heck do I feel like I am being taken so early?! Why havn't the dr.s found the answers? Why don't I have the energy to get out there and fight?? And Why the HECK is it that when I DID get out there, the OTHER dr.s TURNED ME AWAY and PUT ME DOWN instead of HELPING ME?!!
I know one thing.....I am not stopping!!! Those dr.s that told me to "LEARN MY LESSON" at the last hospital- and then NOT giving me any treatment at Baystate hospital last time I went and last time I blogged on Christmas- they HELPED me......I am more motivated than ever! I am going to get out there and FIGHT LIKE HELL!!!! Screw that woman for saying that to me! I hope she sleeps well at night knowing she turned a very sick single mother of three away without any treatment!! Because I am going to get my help and I am going to get my surgeries and going to heal spiritually better than I ever have before. :) She did me a favor. She gave me motivation. So thank you, CRUEL, horrible, Physician Assistant at Baystate Hospital for telling me "I hope you learn your lesson for staying away from drs for this long! serves you right for skipping dr appts and not following up!" and then not giving me IV fluids despite my dehydration, not giving me a ct scan or any scans or tests despite my WEEKS of constipation (?!?!) Not checking into my nose for SEVERE nose bleeds (one of which happened while there- I rang the call bell 4 times, and they shut it OFF all 4 times and I fainted, a paramedic woke me and I had bled all over the blanket and was sitting indian style with my face buried into the blanket hunched over and dried blood which meant I must have been there awhile ?!?! (nice), and also I didn't receive any type of pain medication, any type of ANY medication for anything the entire time I was there, not for constip
Super Low BP
My Daughter's 11th B-day Today 1/18/14
Jasmine & Me
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Update 42
32 months ago
Hello, My favorite followers; My viewers; My team; and My inpiration!
I am going to call my dr tomorrow for a few healthcare concerns. I have had this constant pain in my thigh (and a few veins bulge outwards) and I have continuous pain in my left lung area) especially at night...I get winded very easily, more so when I am walking up or down the stairs, and it wasn't that bad prior to a few days ago. I had a nosebleed the night I went to the ER by ambulance and ended up getting severe chest pain along with some really bad dizziness, which brought me to my knees and everything around me turns black!! I literally feel as though I am going to fall down! My knees get wobbly and I go down for the count!! Not a good sign.....So I will go in for a D-Dimer test to check to see if I possibly have a blood clot DVT (deep vein thrombosis) or PE (pulmonary embolism).

The pain is constant and it is severe at night. I seem to go pale and my breathing is abnormal. I noticed on the monitors while at the second hospital on Christmas Day (evening) that I had issues with my respirations, very shallow, and very rapid pulse, high blood pressure, which is rare for me, usually I am 105/60...I was 142/39 at one point! And then once I was low at 101/52....My vitals were all over the place. I was shocked that I didn't receive any kind of medical care at all....I just sat in a bed for 8 hours and that was IT. I did have my blood taken and I will be going to pick up the results of those tests tomorrow. Since they didn't tell me and didn't print one copy out for me, stating that I had to go to medical records to gain a copy for myself, so I gladly said I would do so, as to not cause a ruckus.

I'm taking the ball by the handle and chains and going to go full speed ahead with my health! As scared as I am of Dr.s, I am NOT going to stay in the shadows any longer. Although, I need help, YOUR help, because without financial help to get the PET scan (the cancer screening test) to see if I have cancer in my abdomen, bones and body....they can't start surgery...and without the blood testing stuff done, which Masshealth also won't pay for, I can't have ANYTHING done....because surgery could kill me if I don't get diagnosed with which kind of rare bleeding disorder I have....but masshealth refuses to pay for these expensive tests. They said it's not a necessary test to have, and although I am having the OPEN and LEAST expensive masshealth surgeries (the ones that cut you open- not the laproscopic tests- which at this point, I am so sick, I couldn't care less, lol. I am READY to just get this over with and be healed and happy), I still need to pay for the testing out of pocket for the specialty services. I don't have the funds to do so.

My biggest prayer from my children and myself and Niece is that someone out there will be able to grant my prayers and help me with the funding that I desperately need right now to pay for the specialty care (the hematologist testings and the PET scans). I will need to figure out what is going on precisely inside me prior to cutting me open because without knowing what's going on, we could be risking a major mistake. If I have cancer (which could be the cause of all the wacky weight loss and the reason for the elevated levels of blood and platelets, etc,) then that would have to be taken care of first. It would save my life to KNOW before hand and we could start treatment right away. If we know what type of bleeding disease I have, we can be sure what to do while I am under the care of anasthaesthia. I may not have to bleed out like I did the last time, and maybe they can catch it before tragedy happens. :) Knowing and preparing is the key of success. And I certainly want to be prepared. Especially after what has happened to me already. I am ready for this fight!! I was ready months ago, but NOW, I am truly looking forward to going ahead and getting my dead colon removed. I am so sick of the symptoms and the sickness it causes me. I can't stand feeling so ill anymore. It's time to kiss it goodbye. :) And as for my blood disorder....let's find out what this thing is....what are you?? Let me meet you and get to know more about you! I want to know you and be prepared to really know how you operate under pressure, lol. ;)
And as for my spinal surgeries...those are next....or maybe those are first!! Who knows! I think my colon comes first, considering that's what's causing me to be in bed and not move much, but my spine is also causing me to be in a veggie tale state....if you know who they are....but not as much spunk. I've been a mother who mothers from bed! Imagine trying to command out orders from BED? Yea, doesn't go over so smoothly, lol. It's not so pretty.
But.....on a serious note.......I'm losing clumps of hair, and I am downright scared. I've made notes that I need notorized and I am about to make a living will......I am not sure what will happen. I am so weak and so fragile these days. Nothing fits anymore, My clothing is so loose on me and I am alsways feeling so sick and in pain. I must get this done as quickly as possible. And I truly need your help financially. I ask of you to send out my link and story to everyone you know....please......please hear my prayers and help me heal. I need your prayers, and I am also in desperate need of these valuable tests.....without these tests, I CAN NOT go for surgery. :( I desperately need you now more than ever. I truly need your help. Any amount helps. Please, pass on my site and bring it into stores, and tack it up or put up a jug and collect the money at the end of each week or something....or maybe a church. I am out of options. I have tried everything. I am now at a vegetable state.....I'm in bed 98% of my day and need Jasmine (My Niece) to help me with almost everything..and have begun "letting go" little tiny bits in my underpants, which is odd, since I have a rectocele.....I am at a loss.....I have nothing left, other than this site, and God....and God is all I need. He cheers me up, I always pray and feel better. But one thing that doesn't get done is the tests....The money for these tests isn't getting funded for just by praying. So I am now asking my dear friends, followers, readers, and viewers, to pass this on, post this up, share this blog, and foundation site with as many people as you can? I've never been one to ask, but I am asking out of desperation. Please, Help me. I will Pray so hard to God hears me and helps my funds come true. He knows how badly I need these tests or this could mean no surgery....Or it could mean surgery with MAJOR risks, that I am not willing to take, because if I take surgery without knowing which kind of bleeding disease I have, how will I know what to do to prepare in the operating room? The surgeon is not happy about my having a bleeding disease and is very uneasy...he really would love for me to have this test to show him what kind of bleeding disease I have....and this could mean that I could be on the road to recovery, because with my nosebleeds, bruises, and other issues, I could find a medication that could save my life...this could be my key to finding out my future. :) I know that we can ALL find a way to make this happen for me. Please? Let's all send this on to everyone we know. COPY & PASTE :

http://www.gofundme.com/MarieJune

Lots Of Love, Prayers, & Light,
Marie J Mello
& Family (Kaileigh (10- almost 11 in 2 weeks!!, Keyghan 6 3/4 , Keyahra 6 3/4 -my boy & girl twins, and my Jasmine (Niece) who is 20 1/2)
Another Bed Rest Day~ But with Movies :)
Jasmine & My Children
There's a little something on my nose!!!
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Update 41
32 months ago
****UPDATE****Emergency Room Visits(2)*****

HERE'S my update on how my ER visits went......I had TWO of them!! And they were a MESS, and I now remember CLEARLY why I DON'T GO TO THE HOSPITAL!!!!!!! My GI Dr. is VERY mad, my regular care Dr. is VERY mad and the hospital Dr.s are being reported for lack of care. I am just going to see my regular Dr.s I guess, since I I didn't get any treatment at all (other than nasal cauterization with silver nitrate) for any of my issues!!!! No IV fluids, No blood tests, No urine test, No X-ray, Ct, Mri, or any other test to check internal bleeding or other cause of my severe stomach pain and non-bowel movement issues; And No rectal check, Not ANYTHING was done OTHER THAN nasal cauterization, NOT even looking in my throat, ears and eyes!!!! Not even my blood pressure was taken, except in the ambulance! And at that point it was VERY high, so they got me right into a room, because I was having chest pain!! So they were concerned with possible internal bleeding- which was dismissed completely by the hospital staff- the 2 males (the nurse and the dr.)The Ambulance was concerned, but the Dr was NOT concerned and the Ambulance brought me to the WRONG hospital! The ambulance brought me to the local hospital instead of the big hospital 2 towns over that deals with trauma and the one that my Dr.s require me to go to!! I was stuck there for hours trying to get HOME! lol. I have to laugh because I ended up calling the police to force the taxi people to wake up and take me home. He got a nice tip, lol. The cost was 12 and I gave him $20, because he wasn't supposed to be open for Christmas and it was 4 in the morning!! lol. Crazy business. All that I got done was my nose cauterized and not even in the right spot!!!!! I have a polyp or several in my uppper nose- but they saw open veins close to my mid-lower nose and so I decided to get it done because he said it was bad and they were all opened up and exposed. So that's ALL he did. And he didn't do ANY other testing- despite my chest pain, (which is new- developed during one of my bad nose bleeds), my severe abdominal pain, my dehydration, inability to eat, etc.....no blood test to check for blood loss- I was only there for about 20 minutes and then discharged!!!! How strange! I asked to be taken to Baystate- the hospital that I was SUPPOSED to go to (when he asked how I was getting home- I told him the ambulance took me to the wrong hospital despite me telling them my dr. requires me to go directly to baystate- the trauma unit- every time I need treatment!) He told me NO, and I asked if he could check my chest out and my stomach, and he said they aren't required to do so....I need to check with my primary to do that. ?!?!I also told him I haven't been able to eat, and I am very dehydrated and did they want urine, because I have had blood in my urine, and he said NO.....it wouldn't be necessary......I said maybe I have internal bleeding?! That could be causing the not having a bowel movement for 29 days. I explained everything, had a paper of all my issues, written out neatly and precisely easily explained for them, so that they could skim over it and not waste their time, but he never even peeked at it.....He said I need a regular dr. and my GI dr to check me out...He wouldn't check me out andsaid really rudely that: "I waited WAY too long to come in! So why would he check me out if I have had issues for a MONTH"?! He said: "anyone who waits that long and expects to get emergency help is way beyond their expectations".....I bawled my eyes out and explained that I had a really bad surgery and was afraid of hospitals and dr.s now....he just couldn't understand that. He was nice, but was very UN-empathetic.

In Medical Assisting school, the FIRST class we learn and throughout the ENTIRE 2 years, we learn EMPATHY!!!! We go over and over and OVER EMPATHY!! I notice most students grow bored with it, and I looked at them with disdain.....but i knew I would always have that quality. Unfortunately, I was unable to go out into the practice for more than a year due to health issues.....I would've made a GREAT Medical Assistant. I LOVED being in the Cancer Unit and the Dialysis Unit on my lunch breaks and be with the patients while they were getting treated. Their lives were on the brink of life and death, yet they had God and were so ALIVE in spirit! They lived like it was their last day. :) I learned a lot from....but the Dr.s and nurses were so awful and absolutely RUDE and CRUEL to these patients at the practice that I worked at for 9 months!! I went home crying almost daily because I hated the way the workers treated the patients!!! NO EMPATHY is horrible! I loved my nurses from the small hospital I went to by ambulance the other night!! He was ready to take care of my abdominal issues, but the Dr. is the one who calls the shots, so he took the liberty to say NO and ditch me, which was supposed to do what exactly?!!!! Make me NOT want to ever go back?!!!!! Because I felt like a real idiot, and felt as though I never wanted to see a hospital ever again, under any circumstances, but know that no matter what, my LIFE is MINE, and no matter how rude these people treat me, I will continue to go back, because my kids need me and I will not stop fighting for my life, because I am ready to get better!!!! I didn't feel SO sick a month ago....that's why I didn't go in! I keep explaining that to people, but it's really hard for them to accept that as an answer......I am honest with them, have always been a friendly, sweet, caring and nice patient, but yet I get pushed aside like a piece of dirt!! They won't stop me though! I'll be back! :-)

The next day, Jasmine (my Niece who isn't my "real" family, but I adopted her into my heart and life when she was 12- she's 20 now) her family picked us up to go to their house for Christmas Dinner, since my tire still isn't fixed- and I ended up having to get to the hospital AGAIN, because I had yet ANOTHER severe bloody nose in which I began shaking, saw black, and needed to put my head between my legs because I almost fainted. I lost the entire silver nitrate cauterization that they placed into my nose!! What a MESS!!!!! I can't even hold that in?! Jeesh. :( My blood is SO thin, that it just refused to hold it in. I remember getting a cone biopsy done in 2005, for cervical dysplasia and I also lost that silver nitrate cauterization, and ended up gushing blood....it must just be my bleeding disorder that causes it not to work. So I'm left with MORE bloody noses than before! Because now I have MORE open vessels than before. Fun times. :-/ (I knew no matter what that I would go to the hospital again, because I didn't get anything resolved the previous night! So I was prepared to go in and take care of all of my issues and was feeling content and felt good about my decision to go in and deal with my long-awaited hospital visit, lol.....boy did that turn out to be a bad choice or what?!). No matter what though, I am going to keep being the squeaky mouse that getsthe cheese. I have made tons of phone calls. I have called ENT dr.s and will find one that will take care of me and my nasal polyps, can possibly re-cauterize my nose or do something else that may stick better, and have also contacted and made appointments with my primary for tomorrow, my GI Dr for January 3rd (unless there's a cancellation, and then I will be in sooner), and he will refer me to a new colon surgeon. I also have my neurologist appt at the end of January (24th I think?)

So.........Anyways........I finally got to the hospital- the GOOD hospital and was put on an EKG machine and it was a little messed up and came back with a few abnormal heart rhythms, so they got me RIGHT in and I had a bed. I thought I would be treated well, because I always WAS treated good. I got a good nurse, and was happy. Then the PA dr. came in and she asked me WHY I had waited a month to come in if I have had
~~Merry Christmas & Happy Holidays!!~~
My 3 Little Loves & Me (October 2013)
~~Christmas Day~~ Emergency Room Visit~~
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Update 40
33 months ago
Hello, My distant blog.
I am getting closer to a diagnosis (well to ONE lol). I have a rare spinal thing called "Syringomylia" a syrinx (cyst) on my thoracic spine and in my cervical spine causing my cerebellum (small part of my brain) to collapse into my neck, causing a herniation of my cervical discs. I'm going to get more MRI's and make sure I have another thing called "Chiari Malformation" (which would explain my headaches, ringing in ears, tingling in hands/face, chronic spinal pain, scoliosis, and severe neck pain, tipping over/balance issues, and extreme dizziness) and will see a neurosurgeon and get a craniectomy (brain surgery) to correct it.....I have faith it will help fix my quality of life. I have SO much pain in my spine and neck, and lately it progressed, so let's pray that my Dr listens and refers me to the neurosurgeon. It's a rare disease, so he was baffled about what to do....the more I read up, surgery is BEST, because once symptoms are felt, paralysis can occur, so I would love to correct this and have one painful thing checked off. I've had neck and spine pain since I was 10. It got much worse in 2003, when I got on tramadol, and in 2008 I had Meningitis, and must have had the effects of the Chiari Malformation and the Syrinx formation occur at that time.
These things can also be caused from trauma to the spine, which on September 15th, I was faced with physical abuse from my ex boyfriend. He injured my spine and I have had extreme pain since then. Much worse pain than prior, which I then went in to my pain management dr. and he sent me for an MRI of my thoracic spine and found the Syrinx which he knows nothing about. We were thinking it was something that we could correct easily with a simple epidural injection, or anti seizure meds or something....but that certainly is NOT the case at all. I am glad I was diligent and have found the cause of many of my spinal issues. I can cross off my neck/spine/headaches off the list.
I have been doing MUCH research on Chiari Malformation and Scoliosis is the cause of it...which can explain why when I was 10, I began having pain and then my scoliosis was found, I then also began having neck issues, and headaches, bloody noses, balance issues, and ringing in the ears. I believe I have always had Systemic Lupus, which was NEVER found until I was an adult, but also have had THIS Chiari Malformation also since childhood, but no one has picked up on it, until ME< the squeaky mouse who is now practically in bed 92% of the time, losing weight rapidly, not feeling well at all, and overall, not much quality of life, finally found ONE answer to MOST of my pain.....I am overjoyed to know that I found the answer to this! I am so proud to know that I am able to overturn my own disease and hopefully will be able to come out on top. There will be some concerns, because I have a bleeding disorder, I just don't stop bleeding....with each surgery, I continue bleeding, and it doesn't seem to stop....so that's a major concern, but we will talk about all of that and will discuss the risks, etc. I am just happy to hopefully NOT have my spine feel this zapping/jolting pain! And I get the worst headaches from the base of my neck every single day from just coughing, or leaning forward....I hardly move and I get a headache. It hurts so badly. My neck is in agony all of the time. It makes complete sense now that I have an actual prolapse in my base of my brain, it makes sense that I would have herniated discs in my neck.I was thinking I JUST had herniated discs with bulging (kyphosis) but now it makes sense that where the bulging happens is where my cerebellum (small part of my brain) is pushing downwards, and protruding into my spine.

I go in Thursday to my Pain Management Dr. and will get an appt to get a full spinal MRI with contrast and will then be referred out to the neurosurgeon in Springfield...Let's pray I can get this overwith and live much more peacefully. After this update, I will update my breast info....that's a much more annoying one. :/ This one is much more cheerful. So I started with this one. lol. I added a new pic of me.....just so you can see me smiling.....I haven't put a pic of me in a long time. It's nice to see a smiling face. :) Thank you for being there for me. Happy Holidays. God Bless you all.

Here is a link of information.

http://www.conquerchiari.org/education/syringo-faqs.html
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Lynnette Brown
27 months ago

Marie, contact me. I have the same bowel issues along with lupus and fibo. Fb message me.

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Raised by 9 people in 44 months
Created January 17, 2013
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Nicole Garcia
42 months ago

If anyone can relate to the trials and tribulations of before and after surgery it's me. Still recovering and pushing on each day at a time as I recover from what is now my 3rd hospital release and 2nd surgery to correct the first. Stay strong. In the end this will be worth it and you will be better and playing with your children and never looking back. Best Wishes! Nicole Garcia (NG1031 on AGMD Inspire.com)

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Lynnette Brown
27 months ago

Marie, contact me. I have the same bowel issues along with lupus and fibo. Fb message me.

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