I've been going back and forth over my "eye" stuff. The double Vision. It has progressed and gotten much worse. Sometimes even now, with my glasses on, it rears its ugly head.
Since everything has happened as it has I already missed my Rituxan infusion and have to reschedule it, my new dentist who also works out of the same facility SW Med, in Dallas, and I am in desperate need of both of those. Plus I feel i may need to see the eye specialist again but I am not sure there is anything else to be done about it,,
I've narrowed the entire issue down to two "diagnosis"
First of all "retinal vasculitis" and moreover all of it definitely lines up as symptoms of Myasthenia Gravis. In fact "MS" and also Myasthenia Gravis came up at one of the last Neurologists I went to. He said it is also difficult to really "diagnose", due to like many of the other autoimmune diseases, there is no "one" test that tells them yes or no. There are a couple of blood tests out there, but just like RA, Lupus and the rest of them... they could be "serum negative" but you have it or be "serum positive" and not.... thus counting on tests right now is usually nuts...
But, my symptoms just tell the story and map out each and every way the symptoms go... so I am including a couple of articles about these, and I plan on doing more research myself. If any of you find something or come across some good information I would so appreciate it if you would post links here etc...
http://www.ncbi.nlm.nih.gov/pubmed/11257479
http://www.aao.org/publications/eyenet/200607/neuro.cfm
There are lots of good links out there with information so if you fall upon anything that mentions this, as well as anything that might help with Jim's recovery from the accident and trying to learn to walk again... any and all is so needed and appreciated..... Rhia
Saturday, April 19, 2014
Friday, April 11, 2014
Wanting to try and Give You an Update
Of course many of you already know about all that has taken place with myself and my husband, the accident, DC and the entire gamut of the past three weeks. What began as something so wonderful, was so abruptly ended in such a disaster.
I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.
I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.
Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.
KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,
For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...
I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..
I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..
I, nor honestly any of us really know what the hell happened out there coming into Dallas on I-45 a couple of weeks ago. There were three vehicles, 2 of which claim that "saw" it all". One man that says he "saw" from his own front porch what He thinks he saw, yet in the blink of an eye, it seems almost impossible for anyone to have just "happened" to have walked out at the exact time that something like this was taking place. It cab happen, and I understand that. But, the odds of something like that happening, and then between "hearing" and turning around to also "see", as I said odds are what you saw and/or heard were more than likely two different things.
I also know there was people that told myself and the gentleman that was at the time helping in in D.C. after all this took place, that my husband was NOT at fault. As a matter of fact, we both were told by the same "trauma" unit physician about the wreck itself, as much as they knew then, the injuries, how many and what "type" of vehicles were in involved. The details were very specific at that time, even down to all of the injuries they thought Jim had, and there was a long list. So, whomever this Doctor was (and I have his name) and also the name of the nurse who called the first time. As I said they repeated the list of injuries, the information about the accident and even went so far to say that it appeared an 18 wheel tractor-trailer that "ran into the back of our car.
Well, in the first place, lesson learned, get a lawyer immediately, if is it fairly bad accident and even if no one was injured, just get one. Secondly, do NOT wait the "10" days for a police/accident report to be "ready:". If you have to CALL three times a day every day until you have it in your hands. That bull about "10 days" was bull. My own insurance company and the others involved in the accident had much quicker than we were told it would be ready.
KEEP everything! Every note, every receipt.... parking, eating, anything... keep each & every receipt. At the time those things do not seem all that important, but that night I took a fall at the very hotel we stayed at, I kept all of my receipts from both. I did not know that I maybe needing medical attention or how badly I was injured etc. Actually I thought I just had a cut all the way through my lip and a scratch or two. Now, I am dealing with an infection and dry socket from a tooth that had to be pulled, along with now I have a chip in the tooth next to the other one, and my lower right hip/back is just giving me the blues as far as pain. Of course do I know that it is he fall? Well, speculation. But, I was not having issues with any of that until about 7 days later. Then it started acting up. Even an any kind of fall, or accident sometimes it is a week or more before all that is really wrong. So, never get up from a fall, or any type of thing such as that, and completely think oh "I'm okay"... you may think... but bruising on the inside, especially deep so nothing "feels bad, or looks bad", until it has had time to manifest itself in the right manner,
For the most part right now I wanted to let everyone know, that as lousy of a time this all is, right now we are just trying our best to put one foot in front of the other. When something such as this takes such a toll on your life... nothing I don't think every truly returns to what you thought was "normal again".
No matter whether an accident, or a chronic illness, anything that "moves" your life in such a dramatic way, forever more gives you a different vision...
I am still not near the place I am really comfortable to write about all of it. I am just trying as I said above, to keep my ducks in a row! I have several things "due" like my Mom's tax form, that I GOT to get done and in the mail by Tuesday, or file an extension...a which if I have to I will..
I also have some "brain fog" type mess happening to me... I think honestly what I need to do right now, is get off this computer, fix me some breakfast & watch a couple of movies for now. I am feeling lousy and my mind does NOT work, when I feel physically crappy... so I maybe back on today and I may not be. Also, don't panic if you happen not to see me post etc this weekend. I do have to finish those papers and get them in the mail, plus I have several other things hanging over my head I just need to get done and off my plate, When those things bothering me, I am never going to put my head back on straight. Plus whatever is going on with my lower back and hip are not helping things at all. I can barely sit HERE when I KEEP TRYING TO FIND SOME WAY it does NOT hurt to sit. So, I am off for a bit today.... and I will sign back on and talk more once some of this stuff is off my shoulders,..
Wednesday, April 2, 2014
World Autoimmune Arthritis Day/Convention - Check out the details below!
Please be sure to Check out WAAD14!!! The Premiere in a World Autoimmune Arthritis Day/Convention! Please see all of the information attached for all of the information! There are 47 hours o NON-Stop information, experts, booths, and so much more... We look forward to Seeing YOU THERE!!!
Registration for World Autoimmune Arthritis Day is now open! We have 47 hours of continuous live action, including chats from Christine Miserandino of ButYouDontLookSick.com, Randy Horwitz, author of Integrative Rheumatology, Arthritis National Research Foundation
and one of their top scientists will be talking to YOU about research
and MUCH more! 40+ booths from nonprofits around the world, an interactive
Day in the Life of an Autoimmune Arthritis Patient experience where you
can send Challenges to supporters so they can understand!
Pre-Registration is open NOW for $5 USD and you get THIS bag WHILE SUPPLIES LAST for no cost, just shipped to your front door. Why a bag? Because when you have autoimmune arthritis shoulder bags are helpful to tote groceries, carry items around the house and more. Why pre-register? We need to know how much space to reserve in the Virtual ONLINE Convention.
Learn more, pre-register and we challenge you to invite 5 friends- go learn more at www.WorldAutoimmuneArthrit
World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st
Pre-Registration is open NOW for $5 USD and you get THIS bag WHILE SUPPLIES LAST for no cost, just shipped to your front door. Why a bag? Because when you have autoimmune arthritis shoulder bags are helpful to tote groceries, carry items around the house and more. Why pre-register? We need to know how much space to reserve in the Virtual ONLINE Convention.
Learn more, pre-register and we challenge you to invite 5 friends- go learn more at www.WorldAutoimmuneArthrit
World Autoimmune Arthritis Day is a 47 hour ONLINE Virtual Convention you can attend from your computer! The virtual doors open at 6am ET/USA May 19 and close 5am ET/USAMay 21st
Sunday, March 30, 2014
Want to Update everyone here.... things are not very well right now
I am going to just "post" a few of my Facebook posts so everyone will know WHY I have not said much here about the Arthritis Summit....
I will say it was AWESOME! I would go back again in a heart beat! it was one of the best experiences of my life. When I get some pictures out of the camera etc. I will definitely tell you more about all of it.
But, just about the time the Summit finished up, my family suffered HORRIBLE, almost NIGHTMARE NEWS!!! My husband Jim, has only a "Step-Mom" other than me in his family. He had not seen her in over 12 years and I had not met her even though we have been married almost 10 years. So, Jim is originally from Washington DC. This was a perfect time for him to meet me after the Summit on Wednesday, we could stay with his Mom, and get to visit with her. And he could show me the "rest" of DC!!! Well, she was coming to pick me up, His plane was not due in until after 5:00pm due to me thinking we may not get back from the House of Representatives until 5pm or so from the schedule. But, we were back by noon. So, she was going to pick up me, and take me to her home, and he was going to come into Falls Church via the Train or whatever... anyway he would be very close once he got his luggage & came to that station. Well, she misunderstood and went to the "other" Hilton in DC, thinking I was there, rather than at the Capitol Hilton. So, she was late. I was outside enjoying the sun, since the day before we were in sleet and HUGE snow flakes, and COLD all day long. The wind was still cold, but the sun kind of warmed it up a bit. Anyway, due to the buses, etc. my cell phone was ringing, but I could not hear or feel it. I happened to go back in and see if I had missed her somehow and then I saw my daughter had called like 7 times!!! I knew SOMETHING was very wrong....So, I find out that my husband Jim, while on his way in Dallas to the airport to come to DC, was in an extremely bad car accident. As best as we know at the moment, an 18 wheeler rear ended him, and then shoved him up under a car or truck in front of him. We also were told the car may have spun him into other traffic. Needless to say, he is in one heck of a mess. Just about every RIB on BOTH sides are broken. They did massive 8 LEVEL back surgery Thursday that took 7 hours... from C-7 DOWN to T-7.... He has a "shattered" shoulder, a broken leg, a tiny "tear" on the outside of his main Aorta, a mild concussion, and he cannot "feel" himself move his legs right now. They first stablized his spine, then are going onto work on other things. I have some updates on my Facebook page. and I will just put a link to it here... that way if you want to know changes, and how he is doing you can....
I am also in not great shape. I fell that early morning he had the accident and cut through my bottom lip, bruised the heck out of my chin, skinned up both artificial knees ... I am barely able to walk, I am SO SORE from all of it and my hips are just hurting so badly... I DO have a Rituxan infusion FINALLY SCHEDULED for Wednesday... but I have an appointment with the dentist. I have cracked off several teeth due to this Sjogren's and I have one that really needs to be pulled... it is hurting badly... I also think I maybe coming down with bronchitis... so I may have to make a trip to the urgent care center today, so it does not mess me up worse with everything. I cannot help him, if I am sick... thus I have to try and get the care I need also.
Here is the "Facebook" URL:
https://www.facebook.com/ifaarhia
I am updating that page above so everyone can know what is going on. I realized it is just easier to do all of it in one spot and that way everyone knows the same information.... I appreciate everything that so far you are all saying... and wishing for us... Please keep Jim and I, and my family, his Mom and so forth in your thoughts and prayers. This is a very BAD situation, and sounds like as I hope IF things ar as they say, someone, (not m husband) was very in the wrong... but as you will read, I cannot even get the police report for another about 7 days or so... see the page above for updates and as soon as I have things from the Arthritis Summit I will post them :):) What an incredible experience! I am definitely going through to become an Ambassador.. and all they did to help me get back to Texas after Jim was hurt so badly was just totally amazing... along with another gentleman that helped me so much. He got hold of the proper people, helped me get on the plane, and back to Dallas very quickly... I will never be able to thank Chris Nieto and Laura Keival (Arthritis Foundation)..... along with Serena, Kerri, Pam .... everyone was totally amazing!!!!!
I will say it was AWESOME! I would go back again in a heart beat! it was one of the best experiences of my life. When I get some pictures out of the camera etc. I will definitely tell you more about all of it.
But, just about the time the Summit finished up, my family suffered HORRIBLE, almost NIGHTMARE NEWS!!! My husband Jim, has only a "Step-Mom" other than me in his family. He had not seen her in over 12 years and I had not met her even though we have been married almost 10 years. So, Jim is originally from Washington DC. This was a perfect time for him to meet me after the Summit on Wednesday, we could stay with his Mom, and get to visit with her. And he could show me the "rest" of DC!!! Well, she was coming to pick me up, His plane was not due in until after 5:00pm due to me thinking we may not get back from the House of Representatives until 5pm or so from the schedule. But, we were back by noon. So, she was going to pick up me, and take me to her home, and he was going to come into Falls Church via the Train or whatever... anyway he would be very close once he got his luggage & came to that station. Well, she misunderstood and went to the "other" Hilton in DC, thinking I was there, rather than at the Capitol Hilton. So, she was late. I was outside enjoying the sun, since the day before we were in sleet and HUGE snow flakes, and COLD all day long. The wind was still cold, but the sun kind of warmed it up a bit. Anyway, due to the buses, etc. my cell phone was ringing, but I could not hear or feel it. I happened to go back in and see if I had missed her somehow and then I saw my daughter had called like 7 times!!! I knew SOMETHING was very wrong....So, I find out that my husband Jim, while on his way in Dallas to the airport to come to DC, was in an extremely bad car accident. As best as we know at the moment, an 18 wheeler rear ended him, and then shoved him up under a car or truck in front of him. We also were told the car may have spun him into other traffic. Needless to say, he is in one heck of a mess. Just about every RIB on BOTH sides are broken. They did massive 8 LEVEL back surgery Thursday that took 7 hours... from C-7 DOWN to T-7.... He has a "shattered" shoulder, a broken leg, a tiny "tear" on the outside of his main Aorta, a mild concussion, and he cannot "feel" himself move his legs right now. They first stablized his spine, then are going onto work on other things. I have some updates on my Facebook page. and I will just put a link to it here... that way if you want to know changes, and how he is doing you can....
I am also in not great shape. I fell that early morning he had the accident and cut through my bottom lip, bruised the heck out of my chin, skinned up both artificial knees ... I am barely able to walk, I am SO SORE from all of it and my hips are just hurting so badly... I DO have a Rituxan infusion FINALLY SCHEDULED for Wednesday... but I have an appointment with the dentist. I have cracked off several teeth due to this Sjogren's and I have one that really needs to be pulled... it is hurting badly... I also think I maybe coming down with bronchitis... so I may have to make a trip to the urgent care center today, so it does not mess me up worse with everything. I cannot help him, if I am sick... thus I have to try and get the care I need also.
Here is the "Facebook" URL:
https://www.facebook.com/ifaarhia
I am updating that page above so everyone can know what is going on. I realized it is just easier to do all of it in one spot and that way everyone knows the same information.... I appreciate everything that so far you are all saying... and wishing for us... Please keep Jim and I, and my family, his Mom and so forth in your thoughts and prayers. This is a very BAD situation, and sounds like as I hope IF things ar as they say, someone, (not m husband) was very in the wrong... but as you will read, I cannot even get the police report for another about 7 days or so... see the page above for updates and as soon as I have things from the Arthritis Summit I will post them :):) What an incredible experience! I am definitely going through to become an Ambassador.. and all they did to help me get back to Texas after Jim was hurt so badly was just totally amazing... along with another gentleman that helped me so much. He got hold of the proper people, helped me get on the plane, and back to Dallas very quickly... I will never be able to thank Chris Nieto and Laura Keival (Arthritis Foundation)..... along with Serena, Kerri, Pam .... everyone was totally amazing!!!!!
Monday, March 24, 2014
Well, By Grace Go I
this shall be quick for now!!! By Grace go I!!! I have to be at the airport about 4:30 - 5am my place leave at 6:30am!!! And I am off to Washington DC to the Arthritis Foundation Summit!!! I am nervous, scared, terrified, joyous, have much pride, and all kinds of emotions right now are going through me. Even my puppies know something is up They are up this early and they never do that...
I will post the evening after I am through, I have no "smart" phone, mine is kind of dumb!
Take care and I will have LOTS to post soon!
I will post the evening after I am through, I have no "smart" phone, mine is kind of dumb!
Take care and I will have LOTS to post soon!
Thursday, March 20, 2014
Announcing the 4th Annual World AutoImmune Arthritis Day! Come Join Us!
JOIN THE GLOBAL VIRTUAL WAVE NOW
“World Autoimmune Arthritis Day is coming May 20th, pre-registration opens TODAY- Get excited and join the Global Virtual Wave by sharing this post!”
To be part of the wave all you have to do is “share” this post.
World Autoimmune Arthritis Day
Theme: A Day in the Life of an Autoimmune Arthritis Patient
This Global Virtual Wave marks the official OPENING OF World Autoimmune Arthritis Day 2014 (WAAD14) Registration as we start the countdown to May 20th.
WAAD14 celebrates May 20th in EVERY time zone in the world, so the online Virtual Convention “opens” its’ virtual doors at 6am ET/USA on May 19th and runs for 47 continuous hours, closing on May 21st 5am ET/USA. You can visit dozens of virtual booths hosted by organizations around the world, tune in to live Chats by scientists, patient advocates and more, send supporters to the Day in the Life of an World Autoimmune Arthritis Day Patient feature booth, learn about all the latest research and download 1,000's of resources right to your home computer!!!
So let's start the wave and get pre-registered for the event. Those who pre-register get a complimentary WAAD14 limited edition bag (ships internationally). Pre-registration cost to attend is $5.00 USD and $7.00 USD after the event begins at 6am ET/USA May 19th. 100% of the proceeds are used to put on the event.
Learn more about WAAD14:
http://
Register: https://engage.vevent.com/
“World Autoimmune Arthritis Day is coming May 20th, pre-registration opens TODAY- Get excited and join the Global Virtual Wave by sharing this post!”
To be part of the wave all you have to do is “share” this post.
World Autoimmune Arthritis Day
Theme: A Day in the Life of an Autoimmune Arthritis Patient
This Global Virtual Wave marks the official OPENING OF World Autoimmune Arthritis Day 2014 (WAAD14) Registration as we start the countdown to May 20th.
WAAD14 celebrates May 20th in EVERY time zone in the world, so the online Virtual Convention “opens” its’ virtual doors at 6am ET/USA on May 19th and runs for 47 continuous hours, closing on May 21st 5am ET/USA. You can visit dozens of virtual booths hosted by organizations around the world, tune in to live Chats by scientists, patient advocates and more, send supporters to the Day in the Life of an World Autoimmune Arthritis Day Patient feature booth, learn about all the latest research and download 1,000's of resources right to your home computer!!!
So let's start the wave and get pre-registered for the event. Those who pre-register get a complimentary WAAD14 limited edition bag (ships internationally). Pre-registration cost to attend is $5.00 USD and $7.00 USD after the event begins at 6am ET/USA May 19th. 100% of the proceeds are used to put on the event.
Learn more about WAAD14:
http://
Register: https://engage.vevent.com/
Wednesday, March 19, 2014
World Autoimmune Arthritis Day!!!
More on RA- Critical News when it comes to how it Systemically Effects the Body...
There are several great links, article and information that is critical to know about RA and how it can Systemically Effect the Body. Many people think of "Rheumatoid Arthritis" as "arthritis", which is TOTALLY WRONG! "RA:(Rheumatoid Arthritis) can effect just about every part of the body... starting at the joints sometimes. Yet, it can cause horrible fatigue, heart problems, liver and kidney problems, problems with the brain, with they eyes, with the ears... and so much more. That is why you see so many of us trying to "get the word out" and spread the news these are serious illnesses that when you delve into them, you find they can be "deadly". Lupus, which is another Autoimmune Arthritis, can even be worse, damaging skin, bones, the heart, liver, the lungs, causing severe fatigue, brain fog, and leading to heart problems and stroke problems. Women and/or men with RA have a 50 percent chance HIGHER in have a heart attack or stroke.
When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/expert-interview/a/44104
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/early-diagnosis/a/44107
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/Infographic/i/38228?xid=nl_mpt_DHE_2014-03-17&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786
When I saw these a moment ago, I wanted to post them. They go along with the WAAD14 and all of the information, research, and activist roles we are in with the IFAA, the Arthritis Foundation, WEGO and many others out there trying to get better research that would lead to a earlier diagnosis, earlier treatment, less sign effects & catch these illness BEFORE they do GARVE Damage as they have on many of us.
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/expert-interview/a/44104
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/early-diagnosis/a/44107
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/
http://www.medpagetoday.com/resource-center/rheumatoid-arthritis/Infographic/i/38228?xid=nl_mpt_DHE_2014-03-17&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g773630d0r&userid=773630&email=rhia@ravishingrhia.com&mu_id=5952786
Monday, March 17, 2014
An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it ...
An Autoimmune Arthritic Systemic Life: More on the Continuing Saga of "Rhia's Law" If it Will Happen Then It Will Be Rhia...Honestly, when I go back and read some of the things that I've been through, put up with, did do, did not do... and all of the "happen to me... it seems impossible that ONE person could have gone through so much in just 8 years! Of course there were other things well before all of the autoimmune illnesses began, and I thought those were horrible. I had moved several times. From Lancaster CA (Whish I loved and still do), back to TX to have a knee surgery, then from Ennis to Austin TX, where I rehabbed the knee an was ready to take a job, then something happened and I came back to Ft. Worth TX. Well that is when 9/11 happened. So, I quickly got back to Ennis (as quickly as I could at that time), and within 6 weeks was headed for Seattle WA. That is where my entire life changed "for the good". I got somewhat "healthy" ... I had a job a loved!!! .. I was making decent money... had a "man" in my life that I was not really sure of, but I did make good friends with his family, and other people around so by the time he pulled a stunt, went to Florida to see another "friend" who turned out to be a woman he had bought a cell phone to talk to every night. He Thought I did NOT know, but I found all of the bag, box and everything in the trunk of the car when I went o get groceries ... PLUS I KNEW E woULD NECER go through the halls for hours normally each night. He done a quick run through usually that took about 25 minutes and he was back. When it started to be an hour, more than an hour, 2 hours, 3 hours and I confronted him with cell phone box and bag in hand... he admitted he was "planning" to go to FL to "see" his friend... Well hell I am NOT stupid! So, he went all right... but I TOOK MY MONEY out of the acct... and left him ONLY WHAT WAS HIS... (He had already taken some out so he was screwed when he got there, and she really was WEIRD. and kind of not interested in him.... anyway... I thought after having to be "on the run" from a "husband" at that time I was trying to "divorce". The ONLY way I could keep him from abusing me physically, mentally and emotionally, was to GET out of TX! He still FOUND ME twice or three times! Each time I thought I was "safe", someone would tell him, and the next thing I know he is around "haunting" me again. Even after I had been in Seattle for over 4 years, divorced him, he got hold of my phone number and began calling and threatening myself and my "finance" then, Jim. Even when we came back to Texas for my daughters' wedding (his daughter) he had told everyone he would "take care" of both of us while we were there. Finally, some of my daughter's new husbands' "buddies" removed him from the premises and told him to stay the hell away. He had almost killed me several times in the past. I put up and "hid" the abuse for many years. I was scared he would hurt me worse, or the kids, or do something terrible. So, I kept my mouth shut to everyone. No body, but my kids knew it, and I would not allow them to tell anyone. I kept them away at the worst times with their friends. Little did I know he was not only "addicted" to Meth.... I knew he was an alcoholic.... but he had "meth" hidden under our shed in my back yard... lots of it there at the last I was told... I did not find out about the drug abuse until just a few months before I moved back to TX, in 2005! Dad had passed away, and even though I never wanted to leave Seattle I had to come back to help my Mom. By this time the "ex", had not only been "caught" and arrested, but was in jail for a LONG time! So, when we first got here, there was about a year or more we never had to be concerned about him. But, I STILL to this DAY have "night terrors" that I wake up screaming, scared to death he is hurting me and JIM, or hurting me somewhere in town.... I carry mace with me everywhere I go. And I still find myself looking over my shoulders, for him even though I have been away from him since 2001, he still "haunts me"....
But, ALL of that, as HORRIBLE and as bad as it was.... and it was bad... still does NOT compare with what these immune illnesses have done to me.... they have also turned my life inside out, they have caused me to be unable to do SO MANY things, I've so wanted to do... EVEN just EVERYDAY. ordinary things... I am always either dealing with a flare, or a surgery, or getting over an infection, or my mouth full of ulcers and knots, or my throat so sore I cannot stand to drink anything. We make plans and I get ill so we have to cancel them. I am supposed to be taking care of my Mom. And I feel as If sometimes "She" is having to "take care" of me!!! NOW these teeth.... and my vision again being so bad!!! Yet, if I go to the physicians most of them are no further along, so their answers are it is the Lupus, RA, Sjogren's, Raynaud's the medications, like the prednisone, which my own PCP calls it a "necessary evil"... if I have a flare, it is the only thing to help get it kind of under control... THEN when my Rheumatologist FINALLY gets hold of the ONE medication a biologic, that finally "HELPS' with the morning stiffness, the pain in my legs and feet, the stiff and swollen fingers and thumbs, my wrists swollen and joints, the INSURANCE gives me A MAJOR SCREW UP, SO I GO 7 WEEKS WITHOUT MY MEDICATION! Which sent me into 2 MAJOR flares! Along with something that was a bacterial lung infection, which I though I was over, the flares came on, they gave me more antibiotics that caused me to have certain type of "colitis" caused by certain antibiotics, thus it was a nightmare because then my husband gets ill, and it seems we may have also contracted a stomach virus, but we could not find out because it took them A WEEK to get back lab work, rather than go ahead and treat me. Well, they finally "looked" at my lab work and said "nothing was wrong". THIS WAS ON A FRIDAY WHEN I CALLED THEM myself. So, the "FOLLOWING" TUESDAY I get a Call from the same doctors office, and the nurse says " the PA looked at your labs and you DO have a "BACTERIAL YEAST INFECTION IN YOUR COLON" AND they have "called in" medication for it!!!! There is MORE to the story about them, but you can be assured that I am Looking for another PCP!!!
Then of course is the entire matter of my teeth...
All of this is EFFECTING MY invitation to go to Washington DC for the Arthritis Foundation after I was invited to go. Now as I get ready, I am ill again, so I am not sure I will get to go Monday Morning!!!! I am totally devastated over the entire thing... and these are just "pieces" of what is happening... the "book" if I ever get to where I can write it will Tell ALL OF IT for sure!
Thank Goodness I have people praying for me all over the world! Wishing me positive thoughts That I will be "well enough" to go!!!!
What can I Say.. but I am so appreciative of those that are standing beside me holding my hand!!!!
Rhia
But, ALL of that, as HORRIBLE and as bad as it was.... and it was bad... still does NOT compare with what these immune illnesses have done to me.... they have also turned my life inside out, they have caused me to be unable to do SO MANY things, I've so wanted to do... EVEN just EVERYDAY. ordinary things... I am always either dealing with a flare, or a surgery, or getting over an infection, or my mouth full of ulcers and knots, or my throat so sore I cannot stand to drink anything. We make plans and I get ill so we have to cancel them. I am supposed to be taking care of my Mom. And I feel as If sometimes "She" is having to "take care" of me!!! NOW these teeth.... and my vision again being so bad!!! Yet, if I go to the physicians most of them are no further along, so their answers are it is the Lupus, RA, Sjogren's, Raynaud's the medications, like the prednisone, which my own PCP calls it a "necessary evil"... if I have a flare, it is the only thing to help get it kind of under control... THEN when my Rheumatologist FINALLY gets hold of the ONE medication a biologic, that finally "HELPS' with the morning stiffness, the pain in my legs and feet, the stiff and swollen fingers and thumbs, my wrists swollen and joints, the INSURANCE gives me A MAJOR SCREW UP, SO I GO 7 WEEKS WITHOUT MY MEDICATION! Which sent me into 2 MAJOR flares! Along with something that was a bacterial lung infection, which I though I was over, the flares came on, they gave me more antibiotics that caused me to have certain type of "colitis" caused by certain antibiotics, thus it was a nightmare because then my husband gets ill, and it seems we may have also contracted a stomach virus, but we could not find out because it took them A WEEK to get back lab work, rather than go ahead and treat me. Well, they finally "looked" at my lab work and said "nothing was wrong". THIS WAS ON A FRIDAY WHEN I CALLED THEM myself. So, the "FOLLOWING" TUESDAY I get a Call from the same doctors office, and the nurse says " the PA looked at your labs and you DO have a "BACTERIAL YEAST INFECTION IN YOUR COLON" AND they have "called in" medication for it!!!! There is MORE to the story about them, but you can be assured that I am Looking for another PCP!!!
Then of course is the entire matter of my teeth...
All of this is EFFECTING MY invitation to go to Washington DC for the Arthritis Foundation after I was invited to go. Now as I get ready, I am ill again, so I am not sure I will get to go Monday Morning!!!! I am totally devastated over the entire thing... and these are just "pieces" of what is happening... the "book" if I ever get to where I can write it will Tell ALL OF IT for sure!
Thank Goodness I have people praying for me all over the world! Wishing me positive thoughts That I will be "well enough" to go!!!!
What can I Say.. but I am so appreciative of those that are standing beside me holding my hand!!!!
Rhia
Asking for YOUR Thoughts and Prayers for This is SUCH A Critical Week-May I be Well Enough to be in DC to tell my Senators and Representative my Story
This is not just for myself, but it is for ALL OF US WITH THESE AUTOIMMUNE ARTHRITIC ILLNESSES AND OTHER CHRONIC AUTOIMMUNE ILLNESSES AND CHRONIC PAIN, FM, AND SO MY MORE... SO PLEASE KEEP ME AND LIFT ME UP IF YOU WILL!
Well Folks this is my LAST WEEK to be PREPARED to go to Washington DC NEXT MONDAY!!! Please keep me in your thoughts and prayers this week. In one week, I am supposed to be boarding a plane to fly to Washington DC to be in front of my Senators and Representative and tell them "my story" about my illnesses and how they have dramatically effected my life.... I have been so ill, it has been touch and go for me, we don't know if I will be well enough to go, and a few "kinks" worked out of being gone so long (my husband is supposed to fly in on Wed. when I am through and we are supposed to go see his Step-Mom that he had not seen in over 11 years and I have never met her)... so this week is my last week for everything to "fall" into place, and for me to be able to get on that plane... and be well enough, and everything 'worked" out so I can go... this is a critical point for ALL of us! This is sponsored by the Arthritis Foundation! So all I get to say and do effects ALL of us... with chronic illnesses... please say prayers that as I said I am well enough all here at home is worked out where I can get on that plane next Monday morningI appreciate all of the kindness, prayers, love and support I have received from all of you, and everyone in the other groups, that have been there to pray for me about my health, and all that life has sometimes pitched at me! You are all there to CHEER me on, when things go well, and there to support me when things are on the rocky cliffs of all of these autoimmune illnesses and the way that they have "altered" my life in so many ways, keeping me from being and doing all the things I want to do in life... I know this is one bunch of incredible people that are here for me!!!! Again this is SO CRITICAL and a dream of mine to be able to tell those on Capitol Hill how not just myself but ALL of us suffering from the pain, the horrible things we go through, how our quality of life is non-existent, thus me being there is like me standing i front of the White house for ALL of US!!! Please say an extra prayer this week, for I so need all of the extra support I can get.... Hugs to all.. Rhia
This will help you understand why this is so important, please take a moment to go to this link and see what I will be doing there in D.C. at this time next week!
Subscribe to:
Posts (Atom)
-
How can our kids feel safe when WE as adults don't???? I fear Wal-Mart or just walking across the parking lot at HEB in my small lo... -
I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange t...
-
I really have SO MUCH to try & catch up here on, so I am going ton"Post"n some of my ongoing chronic health issues, things abo...