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/
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