Mood:
brightNow Playing: Day 1140-Gastroparesis Life-A New Road For Me
BEAUTIFUL WEATHER TODAY! Love it! I am totally a fall-weather gal. I don't do heat nor do my internal organs. I am crossing my fingers this much cooler weather stays with us for more than a few days. I am dreading the upcoming months of heat and humidity, along with it more frequent migraines and seizures.
Today was one of those days that I was able to close another chapter of life. I was also able to be given some additional facts regarding stress and the toll it can take on the human body. Worse when you are sick. I already knew the stress I have endured over the past few years surely couldn't had been healthy. In fact, sadly it has played a part of causing my internal battles to rapidly progress. If I wasn't put threw such unnecessary hellish stress caused by others I would sadly not be in the position I am in today, fighting harder than ever before just to keep my head above water. Medically. Mentally, it sure couldn't had been healthy either. It couldn't had been healthy on either of us. Thank goodness little E didn't have to take a front seat and for that I am grateful for not putting a young child through the unnecessary stress, but instead protecting him from it. I am glad to finally be coming out on the other side. ALIVE. Emotionally? Its going to take quite some time. A very long time I was told to really start being able to fully trust people again. Thankfully I can still put complete trust in my current care with my other specialists. I assume todays news just verifies that when blood goes behind your back contacting your physicians that one thing can be learned for the one physician of over 10+ years who took it upon themselves to state, "Being sick is just all in your head." I would LOVE LOVE LOVE to bring that individual to my next big cancer battle procedure!! Actually I would love to take them to every single one, every three months for as long as I have to endure them. I would also LOVE LOVE LOVE to have that same physician endure the hellish nightmare, "Drano-aka-Hell-In-A-Jug on a weekly basis. Better yet I would LOVE LOVE LOVE to have that same individual whom went behind my back and told blood that I am not sick, its just all in your head, to endure every last procedure, test and surgery I have went through my entire life.
Then, maybe just then, they would understand their words were forever damaging. Physically and emotionally.
Their words given to blood who went behind my back without my knowledge after being in the "know" of my medical for years only to cause me more problems and jeopardize my care also lead not just myself but both of us to court for defending the exact thing I have gone through since at the young age of 6 months old, now proven on medical facts/documents, "I am sick." I have been sick. Instead, we were sued for blogging feelings of defending oneself of being told I am not sick based off of my physician meeting with them over a year ago, without my knowledge or written consent. We had to endure a senseless court hearing being sued for over $25,000 by blood all due to defending those who believed this same physician, that being sick is just all in your head. Why? If this isn't enough to literally MAKE you sick, then I don't know what would?...
As of today, the final decision was made regarding not just internal investigations but other HIPAA violation investigations in regards to personal off-the-cuff opinions and medical information being released without my knowledge and blood not being on any HIPAA forms. For those who have witnessed first hand the pure stressful HELL we both endured, but mostly myself, we were advised, "Internal reprimands would take place." We were aware of this over a month ago as the physician admitted to meeting with blood, those not listed on my HIPAA privacy forms. I can't begin to tell you the hell I have went through and outlandish attacks from those who actually believed such off-the-cuff comments from someone who isn't even a specialist and blood making me out to be a mockery of not being sick. Being made out to clearly be someone I am not and constantly trying to defend such accusations has destroyed any sense of self I had left. This has other specialists who have treated me for years scratching their heads on how any doctor could go past HIPAA guidelines then state a patients conditions is just in their head. This is even after my last surgery (5 years ago) provided hard color copy photos that showed an internal walking time-bomb that could only be fixed with temporary band-aids. The surgery wasn't successful by any means. It was a complete nightmare BUST.
Disappointed? YES. It has also taken a toll emotionally. It has caused me many days of depression and high anxiety. It has also made me severe ties with most of those involved. I don't trust. Rightfully so. Thankfully there are still those I can trust although only two remain in this city. Everyone else resides out of state. Professionally I have been told the healing process can now start but it will take a lot of time. Months. Even years. I doubt I will ever be able to forgive anyone involved in such a horrible act of betrayal and trust. Having individuals, blood tell everyone you know or have known for most of your life, those you even grew up with that I am not sick, due to off-the-cuff physician comments then in turn sue you and walk away, for ME to pick up the pieces is in my opinion, "Unforgivable and Unforgettable."
Call me the "Little engine who 'thought' she could." Maybe "can't" seeing I tried that ONE LAST TIME to talk to blood and listen, as well as one can with hearing issues, to work things out. The end result was another conversation that went absolutely no where. I assume you can say, I was always the type of person that in dealing with life problems, I always chose to sit down with all parties involved and work things out. I don't sit well with brushing things off under the table or pretending as if they never happened. No one can go through any normal emotions when turning a blind eye. It doesn't work for me. It also doesn't work when those who hurt you feel they don't owe you anything, that includes an explanation and sincere apology by all parties involved.
I can handle being sick better than anyone I know. I have done so as to my knowledge for over 9 years. Not to my recent knowledge with all prior medical records since birth, "6 months old."
Truth isn't always two sides of a story, especially when only one side has been told. Over this past week we were advised by a professional, "Its too late to continue fighting for your dignity because what has been told to others by those involved has only been one side. Sadly, others believed it without even giving you the benefit of the doubt. You will never be able to change the opinions of others but you can always take heart in knowing you now have the real truth. In writing."
Another chapter of my life officially closed today. My body can't handle anymore stress and by golly, it has been through enough. I wouldn't wish my 2 year nightmare on anyone, "HOWEVER" there is a lot to be learned. There are valid life lessons we have learned from going through such a bad experience. Thank goodness for finding out the hard way that if a physician who isn't any type of specialist feels the need to disclose medical information, listen to those not on HIPAA or makes off-the-cuff inappropriate comments, then clearly they should had never been on team with other doctors to start with whom are specialists and take my unique medical condition VERY SERIOUSLY. It is a complete disgrace to them, but mostly me, the patient.
As of this month I had to change primary care physicians once again since leaving my prior doctor of over 10+ years back in January. Its not in the best interest for me to continue seeing the same connected health group that involves the prior doctor. I am happy to say as of today I found a new, permanent primary care physician whom put right on top of my medical chart-online, "No contact from so and so and so and so as well there will be no contacting his office." This also took effect with several other of my treating specialists. One stated late last year, "Family now has an option to be either in or out when it comes to COMPLETE support. If they choose out then they stay out. They are interfering with your care and will respect you as adult, you are a not a child. If they ever again doubt if you are sick, they are all welcome to an arms length worth of factual medical records."
As Eric said this evening, "If only your old family doctor did the same thing as others and respected your HIPAA privacy then you would had never endured such hell from blood overstepping boundaries."
I ended a very long, highly emotional and stressful day with a walk at our local park, reflecting on the past that I now bury along with my prior identity as I take the final step starting a new life with a new name and soon a new home. I pray that the good Lord allows me to find some sort of peace and happiness again and that my health never again has to suffer by the hands of others.
-Rainbow Bright/VV
rushed
After taking my physical therapy trainers advice this afternoon, Eric & his friend did some re-arranging of furniture and work out equipment in the house. Since we have to keep a close eye on Oreo its been impossible to use the treadmill seeing its in one of the back spare bedrooms that we made into our work out room. I can't have Oreo in the front part of the house and me in the back not knowing if he needs help moving or has to go outside. Now after re-arranging everything I will once again be able to use the treadmill in between therapy appointments. YEAH!! Thanks to the work-out movers and for being patient with the Supervisors constant changes. ME. Hahahahaha!
cool
I am now up to taking 11 pills including vitamins of all sorts on a daily basis. I have to put up reminder notes on the kitchen cabinet just so I don't forget anything. Yes, NUTS! I am still using my 'Nutribullet' machine so I am getting plenty of fruits and vegetables via liquid form. Why am I still fighting the impossible? I assume because I still have a ton of FIGHT still left in me although once again this week I have had my moments of doubt. The feeling of just "giving up" because this battle is certainly a TOUGH one! Amen. 
Last week one of my specialists expressed concern that maybe I am not getting enough light. Sunlight-heck, any light at this point! So...this afternoon Eric surprised me with a 2 month membership to our local tanning salon. Hmmmm?.... I would usually be excited about going to the tanning salon and getting some R&R time in the tanning bed however I am growing a bit frustrated with finding some energy. Any energy! They say even tanning bed bulbs-light can provide Vitamin D for the body in low doses-10 minute sessions. At this point I said, "Oh, what the heck!" I will have to bring a dark kitchen towel from home to protect my eyes since I sure don't need to aggravate my seizures but at least I won't be looking like 'Casper the Friendly Spring ghost' anymore. Hahahahaha! Most would say with cancer and other serious medical conditions, "Why in the world would anyone step into or lay down on a tanning bed?" Here's my input: If you are at the point where there are no further medical options and your specialists are just utilizing temporary band-aids then by all means, "WHY NOT?" 
Guess who's birthday is today? LITTLEBLUE! My, how the big dinosaur has grown over the years and at 5 years old she is now topping the scales at over 55 pounds. Pretty large for such a small puppy! HA!! Of course we celebrated her day with the rest of the fur gang via floor style, just for Oreo so he could also share her birthday treats. Also, so he could once again show his pearly whites to the curious kitty gang, hahahahaha! He might not be able to walk again just yet but Oreo still has a ton of spunk! We can't believe Littleblue can still fit into her birthday 'PAWTY' shirt from when she was over a year old. OK, maybe it didn't fit quite so much like a shirt, more like a tank top now. After taking some photos Eric said, "They look so happy!" Littleblue had a great day and a few walks across the street at the local park to boot! This evening? ZZZZZZ.....
don't ask
Here we go...Another dreaded day of treatment and another cycle of migraines that I 'thought' were gone after taking the new migraine medication. Since I can't do Drano and strong migraine medication at the same time, the ole head games have once again reared their ugly heads. Add an unexpected seizure, no auras-pre warnings and you have the makings of a bad start to the week. 
*Many thanks to those who always keep us updated on various Gastroparesis research/information. I always felt that when people choose to feed their infants solid food too early in life that it will lead to future GI problems. Now there appears to be data that proves the theory to be true! I know of a few individuals who started their children under the age of 1 on solid foods, adult foods when they should had continued using baby food/formula for various stages of life. The result of feeding infants under the age of 1 a diet consisting of adult-solid foods that GI organs which are still developing can't handle? Severe food allergies, constipation/dysmotility issues and GI development problems. Sometimes I regret not speaking up when watching toddlers/young children being fed adult foods and now seeing the consequences come to life. I would never wish Gastroparesis on anyone, nor especially a child because GP is for life.
hug me
I first got sick when I was 13/14... I don't really know because I didn't grow up in a home that allowed me to be sick. I just remember that's when the rashes started and not being able to pull stiff fingers out of my pockets. By the time I was 18, my knee was collapsing, I had scarring rashes, and fatigue that laid me out for a month. 19... pneumonia, pleurisy, and extreme fatigue... etc, etc, etc...
chillin'
Eric had a few meetings today while at the Armory with his superiors regarding re-enlistment options. Of course this may sound WONDERFUL to the average healthy person or even to someone who is sick but has an abundance of family support. For us, this meant an hour long debate that ended with the most obvious decision. Sadly there is just no human way possible can we attempt any type of re-enlistment that would had put Eric only 5 years away from full Army retirement benefits. Why? Its clear. We have ZERO support. ZERO physical support. Trust me, Eric is even starting to become exhausted keeping up with working, chores, normal every day life then adding to the mix the over whelming things that come along with being chronic/terminally sick. Its IMPOSSIBLE for us to find a way, any way to make things work so he could continue another 5 years in the Army.
d'oh
I had a follow up appointment with my specialist today in which it turned out to be a very good visit. Informative visit! Since they now have all my medical records since birth we can finally make sense of things that otherwise were mysteries to be solved. A few days ago I started having the ole strange bruising again. I was aware of some bruises on my legs and side of my stomach but what I couldn't see were the ones under my arm and on my back. Now since we have prior reports its easy for my specialists to resolve issues due to flair ups that didn't just start after my GP diagnosis but were there for most of my life. The odd bruising, rashes and blood issues aren't so odd anymore, its actually an auto immune condition that shows a history of flair ups which are to be expected. For now it looks like lots of rest on Saturday then back to the ole Drano aka Hell-In-A-Jug treatment for Sunday and Monday. 
celebratory
THANK THE HEAD GODS! THERE IS A MIGRAINE MEDICATION THAT WORKS!! 
happy
Fun sure doesn't mean this hellish nightmare jug. A fellow GP'er friend is having a colonoscopy and endoscope procedure later this week. I asked her if they use the ole Drano aka Hell-In-A-Jug anymore? She replied, "No, they actually use a medication that comes in just two small bottles." Seems no one hardly uses this ocean salt water toxic crap anymore. Only if you are having certain types of surgeries or your insides are shut down/paralyzed. Maybe this means a smaller Drano for this gal in the future? One can only hope...
