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Updated posted by Marie Mello 1 month ago
It's been awhile since I've made an update...so here it is.
I have a Neurologist who sent me for an MRI of my brain, luckily my aneurism is fine, and I DON'T look like I have Chiari. My tonsils are low, but not Chiari, so that was eliminated as the cause of the Syringomyelia & Syringobulbia. That would have been a horrible surgery and I'm blessed not to have to need brain surgery. The causes of my Syrinxes on my thoracic spine (causing all this debilitating pain) seem to be from 1.) the abuse I've suffered over the years- the last time being the worst on my spine and neck, in September- choking and slamming my spine into the floor(not to worry, I'm very free of that now) 2.) Meningitis I endured in 2008- was hospitalized for 6 days and told it can create issues that can cause spinal pain later on/ 3.) I already have scoliosis, so when I suffered the abuse from my ex boyfriend, he triggered these cyst-like pouches to form inside my spine.
What we know: I NEED SHUNTS SURGERY- or I may go paralyzed. I'm having horrible debilitating pain that keeps me in bed and I'm truly feeling such terrifying pain in my spine that never goes away, but gets much worse when raising my arms above my head, when sleeping in bed, standing for more than a few minutes, sitting without my back against anything to stabilize me... I am discussing my next moves to figure out where to go, who is the best, etc...I'm ready for my pain to subside.
My pain......where to begin?! I'm currently being tapered OFF my pain medications (Fentanyl Patch) 50 mcg every 48 hours, because I missed an appointment, was unable to get up, re-scheduled, then showed up late on the day of my next appt....he was unable to see me and it became a no-show. I also was sent an email to come in and get a urinalysis and pill count (fentanyl patch count) contract orders. I haven't used the patient portal since last year, so after 14 months, I never got that message, and don't check emails regularly...I have always gotten a phone call for that previously. Well, i missed the 24 hour period to come into the office as required by contract rules, and received a violation/termination letter from my pain management dr! I wrote him a polite letter explaining my situation, and in a very rude response, he wrote back NO, I'M A PROBLEMATIC PATIENT.... LOL, HUH?! I take my meds on time, as prescribed, I'm a good girl, God knows it, but low nod behold, we all know how good people go under and bad people prevail, lol.....I have to laugh, because in between my vomiting and shakes and chills, from withdrawing, I have to know that the Devil will STILL not take me down! I'll take this withdrawal, find a new dr, and won't ever get on this drug again!
I found out what happened: my neurologist made a call to him and wasn't happy about how I've been there almost 2 years with minimal results....ONLY received pain meds?! No form of referrals to any surgeons, no therapy, no kind of surgical help.....and my pain dr also said Syrinxes also "DON'T CAUSE ANY PAIN AT ALL".......ummm, Dr B? I have some info for you:
What Are the Symptoms of Syringomyelia?
Symptoms of the disorder are caused by the pressure the syrinx puts on the spinal cord and the damage that follows. The symptoms may include:
1)progressive weakness and pain in back, shoulders, arms, or legs
2)inability to feel hot or cold normally
3)loss of pain sensations
4)difficulty in walking
5)bowel and bladder function problems
6)facial pain and numbness
7)scoliosis (curvature of the spine)
Other new information......
I'm FINALLY not scared to go to a new colorectal surgeon! :) let's discuss taking my colon out and taking my next step into fixing my rectocele (again) even though that's still a very touchy subject for me, but I can't leave my pelvic prolapse and rectocele like this anymore...it's ruining my life.
My appt is for the 26 of this month and he's got 4 star ratings. I'm ready to handle my health, I know that withering away and having more issues arise (zinc deficiency, skin rashes, cuts that refuse to heal for WEEKS/months, more weight loss, and now bouts of diarrhea and then constipation). I've also been vomiting more often, I can assume this time it's from tapering down on my pain patch and withdrawing, but I never have diarrhea or vomiting, so this is new.....I had it a few weeks ago also, my insides (upper g.i. feels like it's shutting down. I take slow shallow breaths, yet my pulse races! I'm ready to get better. No turning back. It may take a miracle to get me out of bed and get me to the dr offices, but I'm not giving up! I'm so frail and skinny....I miss my life when we went places and did things. I'm always in bed or on the couch. I have truly become a hermit living in my bubble of a home, afraid to show my face to society, since I FEEL so sick inside, I feel they'll KNOW how sick I am, it feels so odd to me. I'm so weak it hurts to walk, and now with getting off this pain med, I'm feeling the FULL effect of my spinal trauma! My bible is out, I pray a lot, and remember Jesus sacrificed for us all......in 15 days I will be off all pain meds and pray I find something to help the pain from a new pain dr. Possibly butrans or something less toxic as fentanyl- this medication is truly great at taking pain away, but good gosh, when it's time to get off, it's the hardest and most harsh thing on my internal organs! Looking forward to being done, and pray for your prayers.
Lots of love to my dear followers. God bless each of you.
Marie J Mello
Updated posted by Marie Mello 2 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
Updated posted by Marie Mello 3 months ago
I haven't been quite so honest about many things...I tend to be more optimistic than I ought to be, as to not bring others down...so that I don't ruin others' good moods. I dislike ruining other people's happiness with my bad fortunes, or my mishaps...or my CONSTANT bad health, or blabbering on and on aimlessly about my fading health...I feel that it wouldn't be fair, and would't be nice to do...so I choose NOT to bring up the TRUTH about ME and how I'm REALLY DOING daily or weekly to most people....My life isn't at all what I have been posting.....I read my posts, and I am NOT that girl....and when my Niece Jasmine is sleeping, I sometimes read my posts and cry my eyes out, praying I WAS the girl in the blogs, with the little ounce of energy SHE had, so that I could get up and DO the things she NEEDED TO DO!!! But I'm NOT HER, and I LIED....or let's just say, I concealed the truth, because I hate calling myself a liar....it's harsh and cruel and very unfair to call myself...so lets just say that I was just trying to protect what little ounce of decency I had left for myself at this point...whatever little pathetic ounce of sanity I have left during my time awake during my very boring, vegetable-state that I live in of a life. My life is NOT what I have been saying!! Want to REALLY KNOW ABOUT MARIE MELLO?? The sick girl in the blogs who has been acting so happy and showing smiles from a hospital bed while crying afterwards?? Or while cowering in the fetal position right afterwards in pain?? Here goes NOTHING>....because God knows, I have NOTHING to lose, my Faith has fallen short, and I am fading away fast, my pain is so severe that I can't think straight, and I can't even breathe without intense pressure and pain...I'm ready to get this burden off my shoulders....ready to TELL THE TRUTH ABOUT ME:
Here is WHO I REALLY AM:
I am Marie J Mello. I used to be full of life. Last year at this time I used to get TONS of stomach aches to where I would become bloated at no notice and would have to leave the store, or a date, or wherever I was to go home to lay down...It hurt so badly, felt like full blown labor!! It would last for a few days, until finally it would just disappear!! I was so relieved!! That lasted a few times a week all year long....I had a few days off. I made the BEST of those days off...although, sometimes my flares from my Lupus and Fibromyalgia would kick in, but I would just give in and OVERDO it and say "forget it" and over-do it anyways and have a blast with my kids and Niece and have so much fun! We went all over the place....Random road trips, Six Flags, Parks, The Beach, Friends Houses, Out to eat a lot!! Whatever felt good, we did it! No matter how sick I felt, we usually STILL tried to force through it and go somewhere, unless it was TOO bad for me to bear and then I would have a hospital visit for some IV fluids and some rest and rejuvination and some pain medications to get me going again....until the next time another occurance would happen again. I made the best of it though...I truly thought I was living life and had everything handled very well. I didn't feel "good" but I didn't feel "awful" like I do NOW!! Boy, do times change or what?!?!
The past year was great, UNTIL surgery!! In March things changed. My life turned very bad for me. I had MANY more problems with my bathroom issues and MUCH more pain, lower back pain and pressure (due to the rectocele repair going horribly wrong and taking my entire pelvic region down with it and causing extreme pressure on my lower back).....I still made the best of it and was able to get a part time (night club) job. I HAD to, because I NEEDED rent $$. I felt somewhat better, to be out of the house, but noticed LOTS of bruising, on my legs, and then some on my spine- They were bright red and/or black bruises!! It was very strange and peculiar! That was a short lasting job position, because the pain ended up cutting me short. I was in intense pain and noticed my neck and spine had something terribly wrong with it. I had also had an "encounter" with an abusive ex in which he hurt me and injured my spine at the same time (in september) and it cut my time much more short at work than originally expected...the pain never went away- and now I found out that on my Thoracic Spine I have several things called Syrinx(es) because I have something called Syringomyelia and also have MORE in my Cervicval Spine. They can be caused by blunt trauma- I've had pain ever since that specific night, and where two of them are, is exactly where I hit the desk with my back- I now feel this extreme excrutiating pain that stops me from being able to fully inhale and exhale because the pain is so extreme! I get so dizzy when I am walking or standing up. I can't raise my hands over my head for more than a few moments, so now I have to shower differently- putting my head in the faucet of the bathtub first to wash (with Jasmine- My Niece) help, and then taking a bath to wash off, because a shower takes too much energy for me to stand up and I tip over easily. I tend to fall down alot, and I am not very steady on my feet anymore. It is very embarassing. I get VERY tired easily.
It is so much work to get dressed, or to take a shower, that I go days without! I feel so gross, but it takes so MUCH ENERGY, that I just skip it....Jasmine loves to help, and I love her help, yet, I feel so defeated by life. I am 33!! Not 93! I am not sure what has happened in the past year to make me decline to the point of needing SO MUCH HELP. Or why do I need to lie to all of you and come across as this HAPPY girl who WILL GO TO THE DR. and GET HER mri results the next day and will write letters and do this and do that?!!!!! When I can't even help my own children with their homework?!!! I can't even do that?!!
I am in NO WAY holding a pity party, I have decided to be HONEST. In order to be REAL, I have decided to let you all see the REAL ME....and as shamed as I am that I am nothing more than a VEGETABLE, when I was once a beautiful girl in heels and a pretty blouse, I am now a thin, flail, weak girl in pj's 24 hours a day who can't even make it to her dr. appts!!!! I had to SKIP TWO DR appts this WEEK!!!!! I couldn't even MAKE IT!!! I had TO CANCEL! What is wrong with me? I knew I had to go!!!!!! But I had NO ENERGY and absolutely could NOT GET OUT OF BED, and had no one to take me.......I had no energy at all and couldn't even open my eyes. All I do is SLEEP, and when I'm not doing that, I am watching tv, because it's good to be part of THEIR happy lives instead of my own pathetic life....and when I'm not doing that, I'm watching movies with my kids or listening and singing music with my children, trying to make the best of being in bed all the time....who wants a sick mom? My kids swear up and down that it's not a problem.....kids are the best!! They make me feel so loved!
Created by Marie Mello on January 17, 2013
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