We live in a very controversial and difficult time. There is NO doubt about that. The only doubt there seems to be is about Christ/God related topics while taking extreme actions to protect and preserve EVERY SINGLE possible idea as long as God isn't brought into it! Well, as a Christian with equal human rights as all the overly sensitive people that would crucify a believer today as quickly as they hung Jesus himself up there, what about how offended I am when they curse God in a movie or TV show or when me and my family are told we are not allowed to pray, celebrate, worship or any other activity that we are "offending" the delicate nature of others existence yet we are expected while submitting OUR values and beliefs to conform with the easily offended ears and psyches of those that are EXPECTING everyone else to observe their holidays (or respect them and their traditions), be tolerant of men using women's restrooms, be tolerant of every other religion- while not only stripping Christians of every possible right to believe and practice THEIR chosen faith, but that's not enough- they wont stop until they are making Christians criminals and/or morons and they insult us at every turn, all while preaching tolerance and acceptance of every other idea of faith.
There is SO MUCH science that backs up not just Christianity but also, the Bible, events told throughout the Bible- all of it!!! So now when these atheists, pagans, et all attack Christians- their argument of ignorant sheep is rather funny actually if they are so far up their own tails they cant even admit when SCIENCE has proven Christians right all along! Who isn't keeping up with the latest info???....
I keep saying it and I sit dumbfounded as it seems nobody else is smart enough to realize and understand the simplest truth of all ---
Everyone, i mean EVERYONE, that is fighting for their cause- whether it's rights for women, rights for African Americans, rights for animals, rights for LGBTQ (sorry if I missed a letter), rights for ANYTHING- you're going about it all wrong!!! As long as you are only looking to advance that ONE teeny faction, you unintentionally manage to put ALL others below that one thing you're trying to improve so you wind up over-correcting in a sense and rather than SHOW tolerance to everyone and promote others doing the same, you are really actually ENCOURAGING the spread of hate and division even more! The BEST way to get unity is to BE unified, regardless of what or why you feel there needs to be change- you HAVE to BE the change you want to see in the world. How do you possibly expect your kids even to be better people than you are just because you TOLD them to be better or because you SHOWED them how to be better? Which lessons do people and kids learn better, being told by hypocrites to be something they cant even be or to follow the example of someone smart enough (and brave enough) to do the right thing...
It IS hard to find real people like this. You DO find them, but they are fewer and farther between than they should be so let's get off our duffs and do something to show people we are the smart ones, we are the change we want to see in this world. You don't get love or respect without first showing and giving it. Yes, that is one of the hardest things to do which is why it takes the strongest and smartest people to make those changes, to stand up and not be silenced, to be a champion for our future as people. If we are spreading more and more hate- what kind of world will this be in another few decades?? centuries..??
A Miracle 26 Years Waiting To Happen...
A Miracle 27 Years Waiting
In 2006, my life was slipping from me fast. A few years earlier during my last pregnancy, I began having weird symptoms and they intensified until I was in a bed 24/7, hardly even able to get around when utterly necessary WITH someone to push me in a wheelchair and help me with every little thing you can imagine because I could not force my arms, legs, and numerous body parts we all take for granted daily to work for me in just about any way! It began with a few small twitches and grew to me dropping things and falling all the time to where I couldn't lift my head from the pillow and sometimes I couldn't even breathe!!! The worst of it all was that every doctor I saw had no answers for me. I can't say that- I'm sorry, their answers were that I was one of the Munchhausen people in dire need of attention OR that I was simply SO depressed that either way it was manifested by me and me alone. There was NO disease, disorder, or illness of any kind to cause such symptoms and I just needed to "stop wasting the time of important doctors that were needed by REAL patients" (we were actually told that during one ER visit that later proved that while that doctor said those words to us, I was literally hanging to life by a thread THEN! Anyway- ANY diagnosis of ANYTHING (even something fatal) would've been better than feeling and knowing you were dying and every doctor dismissing you with that response.
The whole thing was mind blowing. One day I had been fine, juggling several jobs as a single mom, raising beautiful children and surrounded by friends and family and the next day here... As I said, it started earlier but 06 is when it came to the critical point. My youngest, Keala, was born in 2004 and the problems began halfway through the pregnancy. She was even born with problems like mine but still it was a mental problem I had, they had her go through extensive tests and never figured out why but later in 2005 when we finally got a real diagnosis of Myasthenia Gravis did it start to make sense. Even Keala's problems breathing at birth!
That, as well as MANY different forms of treatments and drugs and such were only temporary wins for me though. It was one of the bigger hurdles figuring out WHAT the problem was, much less trying to get it under control once we knew. First off they just had me try the 1 medication. It was like night and day when I took the first dose. 15 minutes after taking it I stood up and walked on my own to the bathroom alone for the first time in about a year. My mom and I were crying so hard that day thinking I was finally going to be able to be alive again- not just watch my life pass by as I became more and more helpless and more of a burden waiting to die.
It would be a short lived joy though... That medication alone would not be near enough to return my life. I had a LOT more to lose before I would get anything back for real. Every time they tried a new approach it would work at first, some for a few days, some a few months but every time, the treatment would end up turning on me and making it worse not better!
The last straw would be plasmapheresis- This is where they put a port in your chest in order to hook you up to this machine with 2 huge tubes. 1 in and 1 out into this centrifuge thing where it separates your blood and they would remove as much of MY albumin from me then after they would refill me with healthy stuff from donors. Since this treatment had the best results in my body, it only makes sense in keeping with the pattern that it also would be the one that nearly killed me!!!!
Since they had to put the port in my chest (completely awake- usually people aren't but with MG they don't put you under if they don't absolutely have to because its quite dangerous for MGers to go under) to stay for an undetermined length of time, they also had to use Heparin in the lines when they were finished in order to prevent clots from closing off the lines.
All was going along fine, or so it seemed. I wasn't at 100% but I was doing better than I had in several years and finally I could do more with my kids again and be a little more independent myself which was more than enough for me to be very happy with all I'd been through til then. Mind you- even hearing myself now- there is no way to BEGIN to describe what kind of hell I was in from summer of 2004 until fall of 2006, NO WAY POSSIBLE. During that time, I spent most of my time either praying, reading the Bible or fighting just to breathe. I couldn't talk, I couldn't eat or drink really. How I even got enough nourishment into my body to sustain it for nearly 2 full years with almost no food and very little water (swallowing is affected as well as respiratory muscles and functions). The everyday horrors of my reality through that time were inconceivable ON TOP of the hell of being prisoner to your own skin.
For example, when all this was happening, I was still with my youngest father "C" (as I am unsure of legalities regarding real names and he and i are most definitely not on good terms!). Being that we are no longer together, yes of course I have biases in talking about my time with him but you will soon understand why... When he and I were first together, he seemed like the ultimate guy. He was younger than me by a little but not enough to make anything weird but in the beginning he pulled out all the stops. He was always such a gentleman with me and did everything right. Always had little gifts, showed affection a lot but not overwhelmingly, he was great with my older 2 girls from my ex before him and all seemed well. Once I got pregnant the first sign came up that he was not the man he appeared to be as his porn addiction was outed. It was devastating (at least to the point he took it) but we supposedly got past it, especially when all the health stuff started. Over time though, he developed an addiction to MY pain medications! I didn't realize for months because I hardly ever took them since I hated them. He was stealing them from me more and more until there was NO doubt that he was taking them. As this progressed, he began changing horribly for the worst as you can imagine. First of all neither of us had any clue what withdraws were or what that meant. He'd put me through sheer hell just trying to get him up and out of bed for work every day to the point where I was terrified of waking him because it meant we would be fighting badly IF i was successful in waking him and if not he missed work and we were barely getting by as it was(we weren't really since utilities would be cut off regularly and we relied on meals on wheels for food, don't even think about the massive repairs the house needed just to be livable, especially with small kids and a sick adult). Anyway, it wasn't until I was entirely helpless- unable to yell or run for help in some way- to get physically abusive now too! I'd be desperately trying to wake him to at least get Keala from her crib where she was wet and hungry and I couldn't get myself up much less her so I'd literally fight with him for hours while begging him to get the baby and bring her to me so I could at least help her or to call for my mom to take care of her, anything but me her mother, watching her misery as she couldn't get why the parents who should love and care for her were ignoring her. It killed me every time. I would cry my heart out and try everything I could to get her or get someone who could but "C' just got angry to be bothered by me for ANY reason!!!! Once, this exact scenario got so bad I had the phone and I told him we were over (I was trapped as I didn't think we could make it without even his half working paycheck but more so his help as nobody else could help me physically) and I wanted him to leave immediately, so he should leave or I would call the cops to make him leave but then he was too scared the cops would see he'd been beating an invalid and neglecting his newborn for drugs basically so he took the phone from my hands and threw it across the room!!!! It would be hours before my mom would find me on the floor where i landed after he hit me harder after taking the phone from me.
So yea- like I was saying before- in my life there has ALWAYS been a multifaceted hell that's so insane its almost unbelievable. The health stuff wasn't enough, I was also beyond poverty level, was with a VERY abusive man (in many ways- not just hitting me but demeaning me, verbally abusing me, stealing meds and abusing them, emotionally tormenting me and best of all he was the BIGGEST pathological liar I have ever met in my life!), my newborn baby I was forced to watch suffer regularly just because he wouldn't do anything and I couldn't who was also on a heart and lung monitor until she turned 1 because she had transient MG from me during pregnancy with her (which is when it came on) and my next oldest daughter Lilly had gotten as sick as me simultaneously with her own freak rare disorder/tumor, AND that was also when the Gulf coast got hit with all those awful hurricanes because when Charley hit in our town we were locked down in All Children's Hospital 2 hours away having her tumor removed! Your problems are seeming trivial at this point I'm sure because as I write this (I am still in my life which rarely gets too much of a break from this kind of insanity) my current problems are seeming smaller than they did when I started writing!
Back to the main story though- like I was saying, the damages of the treatments were about equal to how much they were helping so since this plasma exchange thing had worked the best, it also hurt the most too. At some point in October 2006 I had been trying to figure out our Halloween plans for the kids that year as I finally had a power wheelchair so I was able to go out a lot more and I had missed the past few years being too sick to do much. We always loved dressing everyone up cute and decorating stuff and October in Florida is by far the best month of the year. It is the ONLY time the weather is comfortable, period.
The next thing I know is having really weird dreams during what felt like a very long sleep. I woke up to see "C" in my hospital room. Wait, why was I in the hospital and how did I get there??
I remember slowly my eyes opening and recognizing him being there. He wasn't sitting in there talking to me or even just being in there, he was rummaging through every drawer, cabinet, etc in the room. It seemed like he was there to try to steal meds and I remember trying to yell at him but I couldn't say anything... Why? I pushed the call button for the nurse and when she came he left I guess because I don't remember seeing him there past that. The nurse was really, really sweet. She was telling me things I wanted to know and gave me these weird spongy things to suck bits of water from and all the while I never realized I hadn't spoken. Finally I understood I had a tube down my throat, but I still had no idea why because she had told me how happy she was to see I was awake, she had seemed to know my every need and want and addressed them without my asking (since I couldn't) and before I knew it I had fallen back asleep and back to odd dreams. I think it was about 2-3 more days like that, kind of awake but not enough to actually think clearly.
Finally I woke all the way up and began to worry whether or not my mom knew where the kids Halloween things were since that's what I remember last, getting things ready for them. When I tried to tell the nurse why I needed to call home (still had the tube so I couldn't speak to them myself) she informed me that there was no need to worry about that because it was mid-November!!!
Wait, that's almost a full month... I knew I'd slept a bit but certainly not THAT long. So I began asking a LOT of questions. As nice as the nurses were, not a one of them would tell me what had happened. That started freaking me out even more. Other details I was aware of but had not gotten answers to were things like what happened to my chest that it ached so bad? Why did I have the tube down my throat? Why don't I remember anything but a few dreams right as I was waking up? Worst of all, why wouldn't anyone tell me what had happened to me!?!?!?!
Well finally the doctors came through for their rounds and with the main doctor back and in to see me, I was finally told I'd been in a coma, and they didn't things were looking too good for a bit but since I woke up all was good. After they explained most of it, everyone from doctors and nurses to candy stripers and my minister that came daily to pray over me all told me they thought they were talking to my ghost as I was surely dead!
Apparently, what had happened was the site of the port had gotten infected with Staph while my body had began rejecting the Heparin they were using to keep the lines clear which created a mass of MRSA infection ON my heart... Something about pulmonary embolisms (although that was the LEAST of their worries) but the big deal was that on top of all that, these nasty infections hadn't been responding to any treatments so somewhere along the way I went septic!!! For anyone not sure of what that means, my own blood was becoming toxic and sepsis is often fatal! They had surgery scheduled but I wasn't going to make it even until then so they had to rush me in much sooner as my chances had slipped to less than 5% chance to live through everything....
The doctor that did the surgery to repair my heart and valves was thankfully a good Christian man. He told me himself that there was no way I should've made it through everything. One of the things that saved me above everything else, the hole in my heart nobody even knew I had! Apparently, if that hole had not been there, some of the blood clots that were drifting about could've caused me to stroke on the operating table. How many ways does that make it that I could have or should have died in such a short time frame???
Thankfully, one of the only things we hadn't tried to help the MG was a thymectomy. Seeing as they had to crack me wide open and rebuild most of the heart area where the thymus gland is, they opted to go ahead and yank it out while they did all the rest. Once they started to back down my dose of prednisone (there is 1 really awful doctor that to this day, in spite of everything he was there to witness himself- still insists there is not a single thing wrong with me other than Munchhausen's!!! so when he treats me, and every time I end up in the hospital I seem lucky enough to see him, he jacks up my prednisone even though its in my file not to and how much more harm than good it does) and started me on a strong water pill to drain the extra 200 pounds i was holding in just water (literally the first dose of diuretic I lost 24 pounds peeing within 2-3 hours!!!) and I finally started to get back on my feet a bit. Just around my house mostly but that was HUGE as I was finally able to care for myself on my own and better yet, care for my children again properly.
Here is the funny thing though- before I had gotten sick, I was a pretty good mom.... I just wasn't there as much as I would've liked because I worked 2 or more jobs all the time. I had decided from the start of becoming a single mom that if I could provide for my family myself, I would not file for govt. help. Other than W.I.C. during pregnancy and/or the younger years for each kid and Medicaid, that was the ONLY thing I used. I did not beg from every agency to get as much free help as was available. That is NOT to say there is anything wrong with using any of those services, I just felt wrong about asking for their help if I did not absolutely need it. The medical bills and baby formula was the only stuff that was a bit out of my range to provide without help so that's what I took. My ex was great at the time about paying his end of child support too so I thought I was doing the right thing.
Maybe initially I was but I guess I got greedy. Just before I got so very ill, I had maxed out on work. I was literally going from one job to the next, around the clock most of the week to the point where I only had about 2-4 hours to sleep 3-5 days a week. NOT daily even! My mom kept warning me I would kill myself at that pace and that the little extra money was not worth missing even more time (although Mon-Fri one of my jobs was babysitting for a friend so I DID get to see my kids but it wasn't the same as being off the clock with them. I needed to slow down but I have always been a very determined person with a lot of drive. I grew up very poor and I wanted my kids to have a little more than that at least. My mom was amazing and the best mom I could ask for but for many birthdays and holidays I got IOUs or had to offer up any gift money from others to my parents to help out and it sucked as a kid. I never wanted to put my kids through that and was determined to do anything (short of stripping or worse) to give them that.
So through all the hell I endured fighting for my life and struggling since then, I never said "why me?" When I was in the hospitals care I was as good a patient as I could be and in spite of my agonies I tried to be friendly with the staff caring for me. So many doctors and nurses would comment on how amazing it was that I could stay so positive and smile while going through these things (and apparently why that one jerk doctor figured I couldn't actually be sick because sick people can't smile while sick) but I'd always tell them this- What good will it do me to wallow in pity? How will that help me get better? I believe in God and prayer and that one day I wont be down like I was then so if I was going to be bitter and upset the people caring for me, they would likely not be as concerned with my comfort. I figured staying as hopeful and positive as I did would only help matters as my nurses were happy to come help me since I was nice and not griping over what they didn't do. Ultimately, this was one of the best things I could do to improve things. My faith in being healed, or at least better enough to enjoy my life fully by God's grace and mercy never waivered. I refused to claim the illness as MY illness because I didn't want it so why accept it? \
Besides that, I mentioned earlier that while I was stuck in my body from 2004-06 I spent pretty much 24/7 in prayer or Bible study. I had joined online prayer groups that were HUGE and very personal where literally thousands of people daily saw and reposted and prayed over every post (myself included- my oldest daughter and I would chose a number of prayer requests posted to pray about together too daily). I posted my requests plenty too and my closer friends and family sent out even more requests all over the world. When I came out of the coma, my ICU room was wallpapered with cards from people who had heard about my story and wanted me to know their prayers were with me and my family. The prayers that went up for me I believe greatly helped. The pastor of my church came in daily to pray over me, even while in the coma. In fact, he said that one day while he was there, he had been praying over me slipping in and out he said- as if my soul was coming in and out ready to leave- and as he was finishing up getting ready to leave he said God spoke to him and told him not to stop yet, to keep praying right then or I was going "home" basically. So he did as was instructed. My step-mother (from birth father- I was adopted from birth and met my birth family when I became an adult) is a very devout Catholic and she doused my room with holy water every time she was there, she brought a beautiful fiber optic angel for my room and she prayed quite a bit over me and sent my requests on to even more prayer lines.
More than just not asking why me, I understood why I was allowed to be afflicted with this. I needed to be shown that I was going about things all wrong even though it seemed right. I shouldn't have been working half the jobs I was, I should've been spending as much of my time with my kids as possible because that 1 detail of my childhood was not a good enough reason to work so hard I was providing better things but not a better mom. So getting sick like that helped me become a MUCH better mother, it helped me accept the help of others when needed rather than trying to do everything on my own. I'm not mad now nor was I ever mad at God for allowing this to happen to me. Why NOT me over someone else?? At least I could endure this and still see how this helped me rather than becoming bitter and mean as many would in the same position. I knew that the entire time I suffered, I was in Jesus arms with only one set of footprints behind us in the sand so that was a comfort in the darkest hours. I wasn't scared to die so much as worried about my kids if I did. Actually the idea of going "home" wasn't entirely awful, especially through some of the worst times but like I said- no matter anything else, I knew it couldn't be my time because my babies needed me too much. Why would God teach me how to be the mother He meant for me to be then take my life so I couldn't BE that mom? I never believed I would die- I believed I would be restored.
Today, doctors have tested me for remission. Technically I am NOT in remission, however, I get by pretty good. I have some limitations but on a day to day basis, it's hard to spot. I get myself to and from stores, appointments, etc. I keep my own house (immaculate at that since I live in a tropical area and if you do not you have bugs, MAJOR bugs... we don't like bugs, or messes), I cook and bake regularly again, I have to rest when I need to but as long as I do right by what my body asks of me instead of always pushing myself too far. I had been awarded disability after the first appeal which is quite normal but just last month I was notified they no longer feel I am still bad enough to continue being on disability. So that's a current hurdle I am dealing with but I have some good options now that I did not have before all this. If God kept me then, He wont fail me now.
It isn't easy to be able to see the good in what most would see as a nightmare. It WAS a nightmare but God never forsake me. He WAS with me all the way more than ever. Not only am I OK with what has happened, I am thankful for it. If things had happened differently, I might still be with an awful man that was a brilliant liar, I wouldn't even know my own kids and many beliefs and ideals have been drastically changed by everything. I feel like I became an entirely new person through all of that. The damages of so many other awful things in my life were undone by the many things I learned about myself, life and God. So no matter how strange it may seem, I'm very glad to be on the other side of that particular misery but still glad that I learned from it rather than pulling away from God and growing bitter as so many might in that situation.
Welcome
Welcome To Melisa's Testimony
So as you can imagine, I am Melisa and I will be sharing my testimony among other things. Over the years, everyone around me has told me how I should be "telling my story" or writing a book or some way tell different stories of my life through some media or another. This seems as good of a way as any and cuts away some of the red tape so here goes nothing right!
I don't have just one big story either... My entire life has been so insane, if I can't share it to help others, then I went through an awful lot of sheer hell for basically nothing. That's no good and if only I grow, learn and benefit from all this, then I would be more selfish than I thought myself.
I've spent most of my life trying to dull down the details because when I would be talking with people about whatever was going on in my life, it always felt as if they thought I was adding things to spice it up but I was doing much the opposite! I didn't want pity or things like that. I am not a charity case in spite of how pitiful my life might have seemed during certain times. Nor am I some kind of drama queen seeking all the attention I blame others for me not getting. I am a realist, I would rather someone know the truth and have whatever opinion they will have than have ANY opinion of me for false information. I am VERY big on truth, ask my kids, exes or my current boyfriend- without truth, communicating is not just pointless, but wasting my time as you have to spend double time over lies correcting whatever they messed up and trying to make things the way they should've been.
As I begin this journey, I am 36 years old- I am mother to 3 beautiful girls/young women, I am with a wonderful man who is no more perfect than I am or you or anyone and as I sit here, its weird to think about the fact that its been 10 years already that I'm alive on borrowed time in a way.
So, you ready??
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