Wednesday, May 13, 2015
The Arthritis Foundation Being an Ambassador & Just how incredible of a Foundation it is.
I've talked a great deal here on my blog, as well as on Facebook, in emails to friends and family, along with spreading the word here in my hometown, and even in our local newspaper, I've had a couple of articles published.
I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.
Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.
They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.
They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.
Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.
They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.
The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".
Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.
So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.
and be a "Champion of YES!"
I know at times when we think "non-profit", charity organization, or other ways they are often referred to, it gives the idea that they "collect money through donations" and use those to help others, possibly for some research, and so forth.
Actually, that is not all that the Arthritis Foundation does at all. They are an incredible Foundation, created by some fantastic people, that have changed the face of arthritis throughout the world. They bring "patients" and "caretakers", even our youngest of patients the kids with Juvenile Rheumatoid Arthritis, and have them involved in the annual "Summit on the Hill" each March on Capitol Hill in D.C. in order to have more funds, more awareness, and more support through Caucus' and those Representatives that can help to make research, awareness, and also others types of assistance available for patients, families and caretakers.
They are a true leader when it comes to "arthritis". Whether it be Rheumatoid Arthritis, Osteoarthritis, and Juvenile RA, and/or the complications of those to a standstill. They feel that anyone that has to suffer from these horrid diseases, that can't get the medications and care they need in order to have a normal life, as being totally not acceptable in any shape or form.
They are warriors in the battle of these horrid illnesses and diseases. They have made an impact through not only the Federal Levels of government, but also in our States legislation to chance things so that "we" as patients can have affordable medications, access to the proper care, making sure that "generic" medications are virtually the same as the original name brands.
Not only do they hold the annual Summit each year and see each and every Senator/staff and/or Representatives, they have also changed things that were very wrong with insurance coverage for people with these illnesses, and helped to stop the "insurance" companies from telling the doctors what or what they cannot give to their own patients.
They have also along with the Department of Defense started a program years back, where our women and men that come out of duty home, all too often to suffer from some type of arthritis and/or autoimmune illness, have a "face and name" in that respect. There are studies about why so often a "well" soldier comes in from a stent of duty, only to realize they have been "taken down" by some type of arthritic ailment. The chances of that grows higher each year, with troops coming home to be in much more pain and suffering than to be in the wars.
The "AF" Arthritis Foundation provides dozens of opportunities for those who wish to become a "voice" by being able to become an Ambassador, help with other volunteer efforts, write letters and emails to your representatives, attend different events, such as the "Jingle Bell Run" and the latest which is the annual "Walk for Arthritis".
Over and above all of those, they also have events for those kids with Juvenile RA. They have week long camps, are also there at times to speak to the Congress, and help in some many ways when it comes to fighting for a cure for these diseases.
So, whether you are able to give a few hours of your time to help out, send out emails, hand out information to others in your community, do a local fundraiser, get the word out like this through blog postings, social media, your local government, newspapers,attend a "Town Hall Meeting", or however you can give of your time, all of those things and so much more are crucial to "solve the mysteries" of these life altering diseases.
Please go to:
I will post more about my own "Ambassador" role, and in fact I was made a "Platinum Ambassador for 2014! Which is another one of those incredible honors bestowed on those that give of themselves and of their time to make a difference for "every one"!
Below explains more in detail of just how crucial it is to be a "Champion of Yes!
Champion
of Yes.
Our Voice Resonates Loud and Clear
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
All-In
We are all driven by a passion and commitment to work that goes beyond the call of duty.
Expert
We continually strengthen our longstanding track record of leadership, and apply our authority to initiatives that are escalating technological, medical and scientific advancements every day.
Bold
We are tenaciously and aggressively attacking arthritis and its effects, with a loud voice and loyal persistence that will never back down.
Ever Present
We are here for the long haul —when, where and how people need us — maintaining relevance in every field and facet that affects arthritis.
Brave
Together, in the face of darkness, we possess an optimistic outlook and winning spirit that courageously leads us.
arthritis.org
Arthritis is a thief. People with arthritis know
this full well. It steals everyday joys and long-
term dreams. It isolates and ostracizes.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.
It is painful. It induces a spirit of No.
As people close to the Arthritis Foundation, we know that it doesn’t have to be this way. We are in a unique place of authority and action, with the purpose of finding a cure, but also fighting for the everyday victories.
We Exist to Conquer Arthritis
The Arthritis Foundation is focused on finding a cure and championing the fight against arthritis with life-changing information, advocacy, science and community.
Plan for Yes
We chart the course for the arthritis community, helping families develop personalized plans for saying Yes — day after day.
Tuesday, May 12, 2015
Sjogrens' Syndrome Foundation - Walk A Bouts for May the Annual Awareness Month
I was
trying to put a message on Twitter but of course stupid me, was not
thinking, so This horrid disease like a thief in the middle of the night
stole ALL of my TEETH within a year!!~ Not only has it taken my teeth
and created a HUGE expense for "special
dentures" but it truly messed with my own self-esteem! Even though I
have the dentures, I must take them out completely at night every night,
and sometimes at home, I don't put them in for several hours. When I
look in the mirror at myself with them not in, I appear to be a 90 year
old woman with all the wrinkles, no lips, and the "sunk in" way my face
looks. that are not there unless the dentures are in. So, I attest to
this disease needing MORE research, Actually, there is not ONE
medication for "Sjogren's". There are a couple of meds that may help
"somewhat" but neither of them really work very well. I take on of them
daily "pilocarpine" and I truly don't see much of a difference. ...
Like ALL autoimmune illnesses, they cause so very much more "damage" to
the body, that often we may not realize until, like myself, my teeth
began to fall out, from the gum line... even taking medication using
everything I could for cry mouth, chewing sugar free gum and always
sipping on something - so there is not a thing I could have done or not
done to keep this from happening.
When Life changes upon a "dime"... how do you cope? "It is not easy to be... me"...
Further information on our friend and client in Seattle. He may have that portion of his skull that they removed off for even a year. He will have to wear a helmet to protect his brain during that time (which I had also read). They will "freeze" that part of his skull in a special way and then can put it back later after things are settled. They say that even though he is responding and seems to know everyone and so forth, he seems to have no movement in his left side of the body at all right now. What really makes this difficult on Jim, my husband, is that after the accident a year ago, he is also basically left with his left side also the one with the most damage. Of course Jim's is from the nerve damage of the spine being basically "broken" from C-7 through T-7. But he continues to "regain" more use all the time in little ways. The nerves can somewhat regenerate, even though just a few years back, they thought they could not. Researchers now know that some nerves can definitely "heal" themselves, it just sometimes takes months or even years for that to happen. Fortunately it seems that his "autonomic" nerve system is intact. Even though they have him on a vent, he is breathing over and above it on his own. So, it will be a moment by moment watch for him. We never really have gotten exactly what happened, but it appears the brain bleed was probably stroke related. So, only time will tell. I am sure the biggest concern now, is of course the swelling on the brain, and fluid, he is extremely "puffy", his face and all are so swollen that he cannot hardly open his eyes. But, also I am sure they are watching and treating him for another bleed of the brain, or a blood clot would be my guess they would be concerned about now... so please continue to say prayers for them. As I said he and his wife have been "clients" now for over 10 years. Yet, before that Jim and he were friends at least 7 or more years before that. They own an online retail store, and he also has a business set up on E-bay. So that makes this even much more difficult. They were kind of "a family" business and needed to ship out parts daily all over the world. So, his wife is probably just in a terrible state trying to keep up with business and feeling badly she can't be with him all the time also. AGain, much like Jim and I a year ago. I needed to be home taking care of things here, and there was so much to make sure was taken care of after the accident, and then split my time being with his in Dallas at the hospital also. It certainly was not a great time in our lives, and in all honesty, things will never be the same for us. It has really taken its toll on the both of us in so many ways... more than you can know... and more than what we even thought it would. As I had said we would have to find a "new normal"... well that new normal changes from moment to moment. Between my own health issues, and all I have to take care of daily, and then Jim's lack of being able to do so many things, and his disability also, we both are truly at times on overload... I find us sometimes going for days and not really saying much to one another. We seem to get to a place that we are lost in our own thoughts, and tend to keep them to ourselves. I know I feel as if I am walking on egg shells all the time, and I am sure he feels the same. There seems to be "drama" about something every day... and now here I face this very invasive discograph, later in the month, again I cannot drive myself from, and then what if I have to have back surgery?? That is just another issue we face, and how we will get through that? I probably may not be able to drive for a few weeks... and who will take care of the dogs, and feeding us, and doing all of the errands and so on... so you can see, and all of you that have been through or are going through similar issues can relate....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
When I think of the song by "David Grey".... that is how I feel these days... "It's not easy to me... me"....
Monday, May 11, 2015
A VERY "BLAH" Monday!
Well for many of us we got to celebrate a wonderful Mother's Day!!! Then for all of us, like myself, that got tremendously hindered by severe weather, we shall have to have a later celebration.
Well, I hope to be able to. I changed my reservations AGAIN for the 4th time for Winstar in OK. Yet, even this next weekend shows that we could be right in the same shape again, bad, bad and more bad weather. So, we shall see how the week goes.
Plus I am not feeling well at all today. I really felt lousy all weekend. Between allergy mess, my hips and legs, my right shoulder blade for some reason, and just a general upset stomach, and feeling like the fatigue has kidnapped my body and take it over, I just feel like HELL honestly!
Of course for now the "severe weather" has moved on, but I am sure it will come again soon, from what my joints say, and my body, plus of course the "forecast".
So, I am not going to be online much today. I got involved in baking, and all of that yesterday, so I really didn't spend much "down time" for Mother's Day. So, today I am headed for the sofa with my pups to hopefully get some relaxation, rest, and get this awful fatigue under control once again.
I am never "far away" so send me a message, email etc... I will be checking my computer off and on during the day....
By the way, our friend and client, did go through about 4 hours of surgery on his brain last night due to the hemorrhage. The removed a piece of his skull in order to create room for the swelling and to relieve the pressure from his brain. It seems he is "stable", but they are still not quite sure what caused the brain hemorage yet. He is somewhat alert, and responding. Plus they said his "breathing" is over and beyond the ventilator, so that is a very good thing. But, he has NO movement at all right now on the left side of his body. The bleed seemed to be on the right, so that would make sense.... I shall post more later when I get updated! Thanks for all of the thoughts and prayers.
Well, I hope to be able to. I changed my reservations AGAIN for the 4th time for Winstar in OK. Yet, even this next weekend shows that we could be right in the same shape again, bad, bad and more bad weather. So, we shall see how the week goes.
Plus I am not feeling well at all today. I really felt lousy all weekend. Between allergy mess, my hips and legs, my right shoulder blade for some reason, and just a general upset stomach, and feeling like the fatigue has kidnapped my body and take it over, I just feel like HELL honestly!
Of course for now the "severe weather" has moved on, but I am sure it will come again soon, from what my joints say, and my body, plus of course the "forecast".
So, I am not going to be online much today. I got involved in baking, and all of that yesterday, so I really didn't spend much "down time" for Mother's Day. So, today I am headed for the sofa with my pups to hopefully get some relaxation, rest, and get this awful fatigue under control once again.
I am never "far away" so send me a message, email etc... I will be checking my computer off and on during the day....
By the way, our friend and client, did go through about 4 hours of surgery on his brain last night due to the hemorrhage. The removed a piece of his skull in order to create room for the swelling and to relieve the pressure from his brain. It seems he is "stable", but they are still not quite sure what caused the brain hemorage yet. He is somewhat alert, and responding. Plus they said his "breathing" is over and beyond the ventilator, so that is a very good thing. But, he has NO movement at all right now on the left side of his body. The bleed seemed to be on the right, so that would make sense.... I shall post more later when I get updated! Thanks for all of the thoughts and prayers.
"WAAD 15" World Autoimmune Arthritis Day beginning Friday! Pick your team and Join in on the Fun!
World
Autoimmune Arthritis Day's 6 day virtual, online car race to collect
resources anraise MAJOR awareness for autoimmune arthritis diseases is
just 3 1/2 weeks away- please share
this poster, print it and give to your rheumy, use it to personally
invite friends, supporters, those in your community groups. The event
will happen HERE on Facebook and Twitter, along with some internet
navigation and sharing of awareness submissions on your own pages, so
plan to tune in!
More about how it works:
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???
1. The Race Cars will represent each nonprofit from around the world that has officially signed up to participate. They will be the Nonprofit Race Teams and will compete against each other to "win WAAD15". Winning is based on who gets the most mileage points, but they need YOU to earn those for them.
2. On May 1st registration will open at www.worldautoimmunearthritisday.org. It's FREE to register, and while you of course can play along without registering, if you do register you can help your favorite nonprofits earn mileage points AND you can earn your own mileage points too. The top 5 registered participants will qualify to win prizes of their own! Register solo or get a group together and play as a team (more details will be posted on this soon). During registration, you can pick up to THREE of your favorite participating nonprofits to support and 'race for'; each of those nonprofits will earn 25 mileage points for your support.
3. On May 15th, at 12pm ET/USA, the race will begin RIGHT HERE on this page and our Twitter page @WAutoimmuneAD. All participating nonprofits with Facebook and Twitter will also post that the race has begun and provide instructions for those just tuning in.
4. Also on May 15th, time TBD, there will be a special post for memoriam laps, where we as a community remember those we have lost to these diseases. We will ask all people to share and add names of those you are remembering to the post.
5. Those registered to race in honor of nonprofits will receive, via email the day prior to the event, the official Global Race Map, which gives times of posts, where to go learn more about specific subjects, details about all the Detours (live webinar chats) and how to register to attend those, and detailed information about the live awareness activities-including when they will post and what they will be. All others can receive this information at the WAAD website after the event has begun.
6. Nonprofit Race Teams will also earn mileage points when you "like" or "share" the posts or tweets from their account or when you do awareness action items in their honor. Registered participants will also earn mileage points for posting/turning in awareness call to action items.
7. In addition to the live social media action, including sharing up to 6 resources from EACH of the over 30 nonprofits participating and several live Detours (webinars-subjects and hosts announced soon), there will also be a page where you can submit information about good practitioners (any specialty) in your area so that we can create a map that will be available year around on our website.
8. The race will end on May 21st at 12pm ET/USA when the checkered flag waves. The top 5 Nonprofit Race Teams and the top 5 Registered Participants (individual players) and top 3 Registered Participant Teams (signed up to play together) will be announced. Trophies/plaques will be sent to the winners, along with select prizes.
Nothing like this has ever been done but we can use this to push autoimmune arthritis into the forefront for 6 days. Are you with us???
Saturday, May 9, 2015
Second Guessing Your Autoimmune Disease(s), Is there a "real remission" to some of AI's - Sjogren's, Lupus, RA, and more...
As I have waded MANY times through the entire "list" of autoimmune illnesses, diseases, syndromes and disorders, again I go back to the spot where I have to wonder: #1. Is my diagnosis correct? #2. Is there another 1, 2, 3 and so forth of AI's that I have, and if so are they being "managed" by the other medications I am on? #3. Are my entire entourage of physicians correct and have they done the proper testing, given me the right medications to help me gain me "control" over further degeneration, more pain, and one day truly feel like I have possible remission? Is there even anything such as "true remission" on some and/or all of the AI's? Is "this" (whatever stand in time I feel I am "at my best as far as being symptomatic) and I will just go onto endure all that is not alleviated as far as pain, future health issues, more pain, and less of a way to fight these illnesses? Does the medications that I am on now, or the ones I had been on, and other types of treatments, therapy, surgeries, and so forth truly mean my "health future" maybe "brighter"? Or I am, along with my physicians and so on, really making a true difference in how I am effected in the long haul of the future?
I KNOW for myself, and I will say probably the majority of patients, caretakers, spouses, families and friends ALL have these thoughts go through their minds. If like myself, this happens quite frequently; especially if you feel you have not made much progress in getting symptoms, fatigue, inflammation, pain, and others where you feel you have reached a comfortable level of relief. As any pain specialist, or probably any type of physician will tell you, there is ONLY so MUCH that can be done. For some, like those with Multiple Sclerosis (MS), it appears there are many more available treatments, more doctors that are familiar with the disease, and you hear fairly frequently of MS patients going into remission, and some for years.
Yet, as far as RA, Lupus, Sjogren's, Raynauds, Diabetes 1, Pernicious Anemia, Addison's Disease, Still's Disease, and the others, not so much. Usually those of us especially with "multiple" AI's never seem to feel as if the diseases are under control. We may feel that way for a week, or even a month or two, yet for me, each and every morning I put a foot to the floor, the RA pain is there. Now some days are better than others. We also know for a fact, weather, stress, jobs, family, and what we do, all have an effect on just how much "relief" we have from one day to the next. Brain Fog is one of those that rather than feel as if I maybe moving forward, I seem to be regressing further into the fog. Month after month I can tell by the way I do things on a daily basis, that the "fogginess" of Lupus, RA, Sjogren's, and such tends to get worse, not better. I am making many more lists, I must go through and reread paperwork over and over again. At times, even seeing something online, I can't recall it, or I walk into a room, and can't remember why I am there in the first place! I tend to leave things "half done", only later to come back and see, "Oh, I didn't finish making the bed", or I never watered all of my plants... possibly Mom asks me to look something up, and if I do NOT write it down, it's as good as gone by the time I leave her house and drive a whole 6 or so blocks to my home. Of course, there are many more little "things" that either I do, or don't do.. and I realize it is due to the Lupus Fog...
As far as the 2nd guessing, I am quite sure I have probably took my symptoms, as they come up, and now several new ones are popping up, and go all the way back to "square one" to research the entire ordeal. Do I really have Lupus, RA, Sjogrens' Raynauds.... and so forth... OR do I have Myasthenia Gravis, some type of "regional pain disorder, compression fractures in my lower back causing severe pain in my hips and legs. Maybe I have a hip that is totally worn out or getting that way. Much like my knees, I've had one hip give me "the blues" on several occasions. Enough that it sent me to my Orthopedic Surgeon so he could put a huge needle full of corticosteroid in it. Usually, that would work. My knees, shoulders and elbows were much the same way. I would have a huge bout with my shoulder or elbow, or knee and I would go in, get an injection into the joint, and I may do well for a day, week, month or years! OR like my knees and shoulder did, after so many injections over the years, and several arthroscopic surgeries on them, I had to have both knees totally replaced, as well as my right shoulder. My elbow has had surgery and has screws in it, and I know it has torn loose and really needs a "scope". I fear though it would be just like my knees and shoulder, the doctors does a scope, and he sees it is totally worn out, totally degenerated.. so "fixing" it is impossible. So, like my knees and shoulder, I went for years, as long as I could stand it, and the injections helped, then I had them completely replaced. You reach a place that you know there is no way you can put up with the severe pain, the loss of range of motion, the weakness, the inflammation... so you make your choice.
I've never regretted ANY of my joint surgeries. Each and every one, from the scopes, until the total replacements, gave me the relief, more strength, better use, no inflammation, and was a great deal better, than not having them replaced.
But, any type of joint surgery, even with the arthroscopic ones, there is never a guarantee you will be "better".... it could mean it may not help at all, OR you have complications, or possibly it feels worse. Now, once you have a TKR (total knee (joint) replacement) that does provide relief, stability, range of motion etc.
But, with the scopic types of surgery, as incredible as they are... and also as incredible as our CT scans, and MRI's are.... NEVER did ANY of them give my doctors the "real story" in my joints. Once they "opened" the joint up, then is when they discovered my joints were totally gone, in no way able to be repaired or "patched" up. I've had my Orthopedic surgeon tell me that over and over again. As good as our tests are, sometimes they do not give the big picture.
My neck was a prime example. I went for YEARS with severe neck pain. I was not able to turn my head very much, or bend it forward or backward. I constantly had severe pain in my shoulders, especially my right shoulder and shoulder blade. I went through numerous tests, from the MRI's, the CT Scans with the dye, regular X-rays, and even a couple more tests to check for nerve damage... EMG's and so forth. They found some nerve issues, both in my legs, and down my arms, yet I jumped from one specialist to the other, with every test, every scan, all of the tests they done as far my nerves.... yet it took me forever and a day to finally CONVINCE a very astute, very stubborn and head headed, yet the very BEST SPECIALIST in the area of not only joints, joint surgery and replacements, BUT he also knew spinal surgery, better than any other doctor I can remember.
After FINALLY getting him to do the "reverse shoulder replacement" on my right shoulder, the first 8 weeks I was truly amazed......
It was not long after that, my shoulder blade on that side, began to feel as if it were burning. Of course I had the shoulder totally replaced, so the "searing" pain (unless something happened like an infection) should not be giving me problems.
Again, back to the same Orthopedic Surgeon, who just DESPISES "educated patients". He just think HE is the "master" over all things "ortho" and we as "layman" don't know "crap"...
I've told my own story over and over about his horrid "bedside NO manner"... as before when I went in to tell him what was happening, he swore that the pain should not be coming from my neck. Well, I totally knew unless like I said there was an infection in the joint replacement, OR the huge bundle of nerves that run right along in that area, and out to the shoulders, shoulder blades, arms, and so on had something wrong. Which "could be" but was not likely.
Again, we go through a special "scan" of my neck. It comes back with C-3 through C-4, C-5 and C-6 having issues. Exactly how much, well from the pain I was having and looking at the CT scan with contrast, showing "bulging, and a few other issues, the 4 level "replace 2 discs" and fuse the other 2, is what was decided. He was set even with my shoulder, that if he got actually into the "joint" (right shoulder) and he didn't see nearly enough damage then he would "repair" it and not replace. But, all cards on the table, said "reverse replacement". So, the "new shoulder" was waiting for me before the surgery. Sure enough, after being able to "see" the severe damage, there was no question a reserve total shoulder replaced.
Albeit the same with my cervical spine. There was a great deal more damage "inside" that the scan didn't pick up, which meant he (and I) were right on with the "replacement/fusion) discectomy. By the time I came out of the anesthesia, I already knew I was 100% BETTER! Even though it was the quickest surgeries for me, as far as very little pain, etc after surgery, it was 6-8 weeks before I could do much of anything but walk. Which kind of was "bad". Because it "felt" so much better, I had to be careful and watch myself. It was a miracle.
Later he came in to tell me what he found etc, and that I actually was pretty "right on" with my own "diagnosis"... thus that kind of helped for the both of us as far as NOT feeling like he needed to make me feel crappy just because I do my "homework".
Now of course is a totally different type of problem. Not one that is easy to face, nor easy to diagnose, and also one that many, MANY times said "I WOULD NEVER" have my lower spine operated on. Due to ALL of the bad things, from online, from people you see and know... it was something I never wanted to even have to give thought to. Well, here I am once again wondering what will have to be done in this case.
So, that is why I am questioning EVERY diagnosis, every thing I have read, researched, been told, by both other patients and doctors also... whether remotely that I even want to have the "discograph" or whatever they call it. Yet, even sitting here now, I feel that "pain" that is so very familiar. If I sit for a while, it begins that burning in my lower back, butt, and down my legs. I still feel like my hips are a part of the puzzle, but he insists my hips aren't causing this kind of pain. Of course he takes an X-ray, that basically says the same thing that the CT Scan I had about 6 weeks ago says, thus this stupid invasive "discogram" will probably also show the same... The TESI (Transforminal Epidural Steroid Injections) worked for a few days, thus that "tells them" that are hitting the mark. That is "a part" of this. Yet, I am still convinced my hips are also a part of it also.
So, the "gram" is set up at the end of May around the 27th. Everything else going on left me with no choice but to make it a couple of weeks off. First of all, again I will have to have my son drive me. I can't drive after having it done. And Jim can't drive and no way my Mom could drive in Dallas. She does well to drive to the market and back in Ennis!
So, I am now kind of "fed up" with all of it. My hopes are the pain will cease and desist, so I can go on and enjoy my summer, and not be down with a freaking major surgery.
Plus who the hell is going to take care of me, and the house, etc??? Jim can't do a lot of things as it is, and no way would I have some stranger coming in to help us, while I recover.
So, there are lots and lots of things to consider, before jumping head first into this quagmire of tests and surgery!
I KNOW for myself, and I will say probably the majority of patients, caretakers, spouses, families and friends ALL have these thoughts go through their minds. If like myself, this happens quite frequently; especially if you feel you have not made much progress in getting symptoms, fatigue, inflammation, pain, and others where you feel you have reached a comfortable level of relief. As any pain specialist, or probably any type of physician will tell you, there is ONLY so MUCH that can be done. For some, like those with Multiple Sclerosis (MS), it appears there are many more available treatments, more doctors that are familiar with the disease, and you hear fairly frequently of MS patients going into remission, and some for years.
Yet, as far as RA, Lupus, Sjogren's, Raynauds, Diabetes 1, Pernicious Anemia, Addison's Disease, Still's Disease, and the others, not so much. Usually those of us especially with "multiple" AI's never seem to feel as if the diseases are under control. We may feel that way for a week, or even a month or two, yet for me, each and every morning I put a foot to the floor, the RA pain is there. Now some days are better than others. We also know for a fact, weather, stress, jobs, family, and what we do, all have an effect on just how much "relief" we have from one day to the next. Brain Fog is one of those that rather than feel as if I maybe moving forward, I seem to be regressing further into the fog. Month after month I can tell by the way I do things on a daily basis, that the "fogginess" of Lupus, RA, Sjogren's, and such tends to get worse, not better. I am making many more lists, I must go through and reread paperwork over and over again. At times, even seeing something online, I can't recall it, or I walk into a room, and can't remember why I am there in the first place! I tend to leave things "half done", only later to come back and see, "Oh, I didn't finish making the bed", or I never watered all of my plants... possibly Mom asks me to look something up, and if I do NOT write it down, it's as good as gone by the time I leave her house and drive a whole 6 or so blocks to my home. Of course, there are many more little "things" that either I do, or don't do.. and I realize it is due to the Lupus Fog...
As far as the 2nd guessing, I am quite sure I have probably took my symptoms, as they come up, and now several new ones are popping up, and go all the way back to "square one" to research the entire ordeal. Do I really have Lupus, RA, Sjogrens' Raynauds.... and so forth... OR do I have Myasthenia Gravis, some type of "regional pain disorder, compression fractures in my lower back causing severe pain in my hips and legs. Maybe I have a hip that is totally worn out or getting that way. Much like my knees, I've had one hip give me "the blues" on several occasions. Enough that it sent me to my Orthopedic Surgeon so he could put a huge needle full of corticosteroid in it. Usually, that would work. My knees, shoulders and elbows were much the same way. I would have a huge bout with my shoulder or elbow, or knee and I would go in, get an injection into the joint, and I may do well for a day, week, month or years! OR like my knees and shoulder did, after so many injections over the years, and several arthroscopic surgeries on them, I had to have both knees totally replaced, as well as my right shoulder. My elbow has had surgery and has screws in it, and I know it has torn loose and really needs a "scope". I fear though it would be just like my knees and shoulder, the doctors does a scope, and he sees it is totally worn out, totally degenerated.. so "fixing" it is impossible. So, like my knees and shoulder, I went for years, as long as I could stand it, and the injections helped, then I had them completely replaced. You reach a place that you know there is no way you can put up with the severe pain, the loss of range of motion, the weakness, the inflammation... so you make your choice.
I've never regretted ANY of my joint surgeries. Each and every one, from the scopes, until the total replacements, gave me the relief, more strength, better use, no inflammation, and was a great deal better, than not having them replaced.
But, any type of joint surgery, even with the arthroscopic ones, there is never a guarantee you will be "better".... it could mean it may not help at all, OR you have complications, or possibly it feels worse. Now, once you have a TKR (total knee (joint) replacement) that does provide relief, stability, range of motion etc.
But, with the scopic types of surgery, as incredible as they are... and also as incredible as our CT scans, and MRI's are.... NEVER did ANY of them give my doctors the "real story" in my joints. Once they "opened" the joint up, then is when they discovered my joints were totally gone, in no way able to be repaired or "patched" up. I've had my Orthopedic surgeon tell me that over and over again. As good as our tests are, sometimes they do not give the big picture.
My neck was a prime example. I went for YEARS with severe neck pain. I was not able to turn my head very much, or bend it forward or backward. I constantly had severe pain in my shoulders, especially my right shoulder and shoulder blade. I went through numerous tests, from the MRI's, the CT Scans with the dye, regular X-rays, and even a couple more tests to check for nerve damage... EMG's and so forth. They found some nerve issues, both in my legs, and down my arms, yet I jumped from one specialist to the other, with every test, every scan, all of the tests they done as far my nerves.... yet it took me forever and a day to finally CONVINCE a very astute, very stubborn and head headed, yet the very BEST SPECIALIST in the area of not only joints, joint surgery and replacements, BUT he also knew spinal surgery, better than any other doctor I can remember.
After FINALLY getting him to do the "reverse shoulder replacement" on my right shoulder, the first 8 weeks I was truly amazed......
It was not long after that, my shoulder blade on that side, began to feel as if it were burning. Of course I had the shoulder totally replaced, so the "searing" pain (unless something happened like an infection) should not be giving me problems.
Again, back to the same Orthopedic Surgeon, who just DESPISES "educated patients". He just think HE is the "master" over all things "ortho" and we as "layman" don't know "crap"...
I've told my own story over and over about his horrid "bedside NO manner"... as before when I went in to tell him what was happening, he swore that the pain should not be coming from my neck. Well, I totally knew unless like I said there was an infection in the joint replacement, OR the huge bundle of nerves that run right along in that area, and out to the shoulders, shoulder blades, arms, and so on had something wrong. Which "could be" but was not likely.
Again, we go through a special "scan" of my neck. It comes back with C-3 through C-4, C-5 and C-6 having issues. Exactly how much, well from the pain I was having and looking at the CT scan with contrast, showing "bulging, and a few other issues, the 4 level "replace 2 discs" and fuse the other 2, is what was decided. He was set even with my shoulder, that if he got actually into the "joint" (right shoulder) and he didn't see nearly enough damage then he would "repair" it and not replace. But, all cards on the table, said "reverse replacement". So, the "new shoulder" was waiting for me before the surgery. Sure enough, after being able to "see" the severe damage, there was no question a reserve total shoulder replaced.
Albeit the same with my cervical spine. There was a great deal more damage "inside" that the scan didn't pick up, which meant he (and I) were right on with the "replacement/fusion) discectomy. By the time I came out of the anesthesia, I already knew I was 100% BETTER! Even though it was the quickest surgeries for me, as far as very little pain, etc after surgery, it was 6-8 weeks before I could do much of anything but walk. Which kind of was "bad". Because it "felt" so much better, I had to be careful and watch myself. It was a miracle.
Later he came in to tell me what he found etc, and that I actually was pretty "right on" with my own "diagnosis"... thus that kind of helped for the both of us as far as NOT feeling like he needed to make me feel crappy just because I do my "homework".
Now of course is a totally different type of problem. Not one that is easy to face, nor easy to diagnose, and also one that many, MANY times said "I WOULD NEVER" have my lower spine operated on. Due to ALL of the bad things, from online, from people you see and know... it was something I never wanted to even have to give thought to. Well, here I am once again wondering what will have to be done in this case.
So, that is why I am questioning EVERY diagnosis, every thing I have read, researched, been told, by both other patients and doctors also... whether remotely that I even want to have the "discograph" or whatever they call it. Yet, even sitting here now, I feel that "pain" that is so very familiar. If I sit for a while, it begins that burning in my lower back, butt, and down my legs. I still feel like my hips are a part of the puzzle, but he insists my hips aren't causing this kind of pain. Of course he takes an X-ray, that basically says the same thing that the CT Scan I had about 6 weeks ago says, thus this stupid invasive "discogram" will probably also show the same... The TESI (Transforminal Epidural Steroid Injections) worked for a few days, thus that "tells them" that are hitting the mark. That is "a part" of this. Yet, I am still convinced my hips are also a part of it also.
So, the "gram" is set up at the end of May around the 27th. Everything else going on left me with no choice but to make it a couple of weeks off. First of all, again I will have to have my son drive me. I can't drive after having it done. And Jim can't drive and no way my Mom could drive in Dallas. She does well to drive to the market and back in Ennis!
So, I am now kind of "fed up" with all of it. My hopes are the pain will cease and desist, so I can go on and enjoy my summer, and not be down with a freaking major surgery.
Plus who the hell is going to take care of me, and the house, etc??? Jim can't do a lot of things as it is, and no way would I have some stranger coming in to help us, while I recover.
So, there are lots and lots of things to consider, before jumping head first into this quagmire of tests and surgery!
Friday, May 8, 2015
I continue this ongoing saga of Lumbar spine issues, bad weather that I am SICK OF, am Happy to see more people coming to my blog, and things about Autoimmune and Arthritic Illnesses
Well, here I am again... another weekend that "appears" to look like all hell is going to break loose. Which again is really irking the crap out of me, because I do not want to have to POSTPONE yet another trip to the Casino!!!
I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.
Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.
Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!
Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!
I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on.
When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.
I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.
I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.
Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.
To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.
So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.
I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.
More to come.....
I've already been through this a couple of times, last weekend, it was supposed to be "earth shattering" weather and it did NOTHING.
Now here it is Mother's Day, and again the forecast (extended) is showing rain, rain, rain, storms, floods, and more crappy weather.
Actually, I went, got out my brand new white jeans that I've been wanting to wear, and they still have the tags on them. I also have a beautiful top that just looks awesome with them, plus add in my rhinestone studded sandals, a bit of makeup, a necklace and earrings, and I am set to go to Winstar!!!
Well, I call my Mom, and she has not even "given it much thought" of us going. Yada, yada, yada... about how bad the weather is supposed to be Sunday, and thinking we should postpone... well now we are looking at much later in the month, when I had doctors appointments in Dallas - two of them back to back on the 20th and 21t! Neither of which I can miss at all. One is to have my pain pump refilled, the other is my very LONG AWAITED getting to see my Rheumatologist again. It has been months and month, and months since I saw him. In fact due to something, in fact, I believe I had double pneumonia and was supposed to see him. I had to reschedule and the other appointment was like in December of 2014!!! So, it has taken me patiently waiting now for 6 MONTHS just to get into see him. I can see his PA of course much sooner, but seeing him, especially since we are possibly thinking of a medication change... I MUST NOT miss this appt!
I am NOT happy about this "discograph" business. From all I've read it is NOT a "comfortable" type of test. It is also much more invasive than having epidural steroid injections. So, that raises the risk of a spine fluid leak, or infection more than the injections. I see that depending on the scan and how far it needs to go, it can be anywhere from an hour to 2 or 3 hours, depending on what all the doctor orders. I know Medical City Hospital in an Excellent place. So, that in itself does not bother me. But, anytime now when you have a "compromised" immune system, whether autoimmune related, or whatever the case may be, you really are trying to "avoid" anything that could have the potential of causing infection, especially into the spinal fluid, blood and so on.
When you are sick, the hospital is the very place you want to avoid usually. Because the others around you maybe having many more types of illnesses that could potentially cause a worse infection.
I've not really had many issues, as far as surgery goes. I usually do well under anesthetic. As far as a surgery, I have not had any massive complications. Yet, when you combine the AAI, the prednisone, the Orencia, and other meds I must take, then there is the rise in whether an infection could happen, rather than someone who does not have immune issues, or is not on medications that could cause you problems later.
I also know this is going to be one of those types of tests that no matter what I already have had done in the past 6 weeks, which was the CT Scan and then the epidural steroid injections into the Transforminal space around those vertebra, that shows that is the place of issue, this doctor STILL is going to insist that I have this other stupid test done.
Of course yes, I could "find" another surgeon. Well, that could lead to the exact same situation, and also could lead into me not having the "best of the best" as far as my Orthopedic surgeon go. He is the one that truly remedied my shoulder pain and my neck pain. Without him, I honestly don't think I would have made it.
To me, he is the "gold standard" in surgeons for these types of problems. Although once again his bedside manner is about like a jackass, and he is an argumenative, and thinks he knows absolutely everything, and patients as far as he is considered need to "follow his rules" and NOT try and tell him anything you may know.
So, it is trying to decide what is worse to deal with when it comes to having him as an Orthopedic Surgeon.
I've got to go to get dressed and run to "Wally world". I need a belt to go with some white jeans I would like to wear, thus there is about the only place here to look. Then I have to run Jim over to the Clinic in Waxahachie about some of his meds.
More to come.....
Thursday, May 7, 2015
What do you do when you just don't know what to do? Discograph, CT Scan, and just FED UP!
I've just about had my fill of physicians, medications, tests, evaluations, scans, and everything else that falls within and in between the realms of "chronic illness and chronic pain"....
It is like no matter how hard you try to do ALL you can to make things run smoothly, you can bet someone will be either rude, hateful, or other words I guess I won't say here in this post, but it rhymes with "witch"...
I've been on the phone with the different doctors offices this morning, TRYING to make their job a bit easier. Both times, and it was both the doctors main nurses, that decided rather than be "nice" they were going to be jackasses.
The first one, has always been a jerk. I don't even know why she continues to be a "nurse". Her personality along with this particular doctor's as about as kind as a brick. You feel like you are little kid being punished over something you didn't even do. I tried to ask her question, as she began rattling off to me what "the doctor said"... and rather than her give me a moment to ask if he "has all of the records" from my pain doctor that did the injections, and did a follow up, she told me, it matters not, and I don't have "time" to dig through your chart to look! What an ass! Well, if those records are NOT there, then it could be that the doctor does NOT have the whole picture. In the first place, my pain specialist, who has known me now since about 2008-09, I TRUST! When he told me last week a "discogram" was redundant and not really necessary since the injections helped for a few days... that if surgery is needed, then get it done, and don't wait. He is usually "conservative" but his main issue is that he fear with the insurance I have, if I put it off and it gets worse, my insurance may "buck up" and give me hell having it. Thus he said before I have worse problems, worse pain, that he recommended to go ahead and have it. It is just one "level" for now, which should not be nearly as "less likely" to do well, than if I were either older, or something else happens like I get a compression fracture from the osteoporosis. In fact, he said that I could already have one or more but, things could get worse. As usual, each time I've had a joint surgery, when they actually get into the joint to see, it is a freaking mess. I've been told that with EVERY joint replacement I've had. Every time it seems it is much worse than what any scan, MRI. X-ray etc every shows. Last time all of the "damage" was deeper into the joints, thus no scan would have ever shown it. They had to go by symptoms, amount of pain, and kind of figure from everything I could tell them what was going on. And each time I've been right. It is always worse than it was on a scan.
So, to now want to put me through yet another, much more invasive "scan" or discogram, he should be aware of me also... that I am not the "usual" patient. There always has to be something "different" with me... I am always the complicated, never know until you know what is going on.
So, now today (May 7th, 2015, I get a call to "schedule" the discograph, gram - whatever they call it, which is by more than one name... and they tell me I can have it done anytime, just tell them when. Well, this week is totally out of the question. I will again have to see if my son can take me. This will be done at Medical City in Dallas, at one of the "specialty" radiology places there. So, as I look at the calendar, and of course I am hurting today bad enough to scream, but this weekend is Mother's Day and if the WEATHER will act right, Mom and I are going to the Casino... but of course the weather is showing to be not so great Sunday and Monday, so once again, I maybe cancelling the trip. Plus here it is Thursday and I have not even began to get ready. I don't have anything thought out to wear, both my nails and toe nails need to be painted, and I need to decide what to pack and so on, and so forth. The weeks tend to go by much too quickly. It is Monday, and before I blink it's Thursday!!!
So, next week it out. Plus that is really not enough time to give my son a chance to work it into his schedule. So, the followng week I already have 2 doctrs appointments in Dallas. My Rheumatologist on Wednesday and then my pain pump refilled on the Thursday of that week... so they already have me plenty booked for that week. Thus that leaves the last weekend of the month. Which again seems like forever when you are hurting, and after I hung up I said Damned maybe I should have scheduled it for next week... but again I have to have someone to drive me home... so I have to give him time to schedule that in also.
It sucks now, because there is no way, no how, Jim nor Mom can drive... and Mom not at all in Dallas, hell it is already bad enough in Ennis....
So, now I have this thing scheduled for May 27th at 7:00 AM and they will do this at 8:00 AM. I've got to look some things up. No one mentioned insurance and so forth. So my though is she was the "nurse" who schedules everything, and someone else from the business office will be hitting me up for insurance and money.
I hope to Christ it is about what the injections were, which still is NOT cheap.
Yet after the article I read about Spondyliti, now I am wondering if this should be an issue I take up with my Rheumatologist anyway before I start having an invasive test. It could be that there is damage there and the tests don't see it, as usual on me, OR if I do have this, then it maybe 7 to 10 years before the evidence shows on any type of scan... here is the URL to the article:
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
Which if that is the case, then this could be something that a medication change or something may help rather than going on with a test that could lead to very lower lumbar/sacra; (L-5/S-1) surgery. As I say, say and say again I REALLY DO NOT WANT TO FACE LOWER BACK SURGERY!!! It totally frightens the hell out of me. I've heard TOO MANY "failed" back lower surgeries, that either put people in worse pain, in wheelchairs, or lead to other back surgeries to fix the first one.
Of course I did also say that about "cervical neck surgery" also. Yet, when it came to knowing I would have "RELIEF" from the horrid shoulder blade pain I was in, I was ready for anything to take it away... thus as soon as I came out of the surgery, the pain was basically gone... so there are times that any kind of "back surgery" that can give a pretty good rating of helping to reduce pain and give back motion is something to consider, but also consider very seriously about all things involved... so I cannot say NO, I WON'T .... because if that is what it takes to rid me of this pain, where I can move forward with my life, and writing my book, then I may not have any other choice but to go along with it.
I will post some information about the procedure in a bit. Again, I am hurting having to sit and type... so it's time to get up and move around for awhile....
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
It is like no matter how hard you try to do ALL you can to make things run smoothly, you can bet someone will be either rude, hateful, or other words I guess I won't say here in this post, but it rhymes with "witch"...
I've been on the phone with the different doctors offices this morning, TRYING to make their job a bit easier. Both times, and it was both the doctors main nurses, that decided rather than be "nice" they were going to be jackasses.
The first one, has always been a jerk. I don't even know why she continues to be a "nurse". Her personality along with this particular doctor's as about as kind as a brick. You feel like you are little kid being punished over something you didn't even do. I tried to ask her question, as she began rattling off to me what "the doctor said"... and rather than her give me a moment to ask if he "has all of the records" from my pain doctor that did the injections, and did a follow up, she told me, it matters not, and I don't have "time" to dig through your chart to look! What an ass! Well, if those records are NOT there, then it could be that the doctor does NOT have the whole picture. In the first place, my pain specialist, who has known me now since about 2008-09, I TRUST! When he told me last week a "discogram" was redundant and not really necessary since the injections helped for a few days... that if surgery is needed, then get it done, and don't wait. He is usually "conservative" but his main issue is that he fear with the insurance I have, if I put it off and it gets worse, my insurance may "buck up" and give me hell having it. Thus he said before I have worse problems, worse pain, that he recommended to go ahead and have it. It is just one "level" for now, which should not be nearly as "less likely" to do well, than if I were either older, or something else happens like I get a compression fracture from the osteoporosis. In fact, he said that I could already have one or more but, things could get worse. As usual, each time I've had a joint surgery, when they actually get into the joint to see, it is a freaking mess. I've been told that with EVERY joint replacement I've had. Every time it seems it is much worse than what any scan, MRI. X-ray etc every shows. Last time all of the "damage" was deeper into the joints, thus no scan would have ever shown it. They had to go by symptoms, amount of pain, and kind of figure from everything I could tell them what was going on. And each time I've been right. It is always worse than it was on a scan.
So, to now want to put me through yet another, much more invasive "scan" or discogram, he should be aware of me also... that I am not the "usual" patient. There always has to be something "different" with me... I am always the complicated, never know until you know what is going on.
So, now today (May 7th, 2015, I get a call to "schedule" the discograph, gram - whatever they call it, which is by more than one name... and they tell me I can have it done anytime, just tell them when. Well, this week is totally out of the question. I will again have to see if my son can take me. This will be done at Medical City in Dallas, at one of the "specialty" radiology places there. So, as I look at the calendar, and of course I am hurting today bad enough to scream, but this weekend is Mother's Day and if the WEATHER will act right, Mom and I are going to the Casino... but of course the weather is showing to be not so great Sunday and Monday, so once again, I maybe cancelling the trip. Plus here it is Thursday and I have not even began to get ready. I don't have anything thought out to wear, both my nails and toe nails need to be painted, and I need to decide what to pack and so on, and so forth. The weeks tend to go by much too quickly. It is Monday, and before I blink it's Thursday!!!
So, next week it out. Plus that is really not enough time to give my son a chance to work it into his schedule. So, the followng week I already have 2 doctrs appointments in Dallas. My Rheumatologist on Wednesday and then my pain pump refilled on the Thursday of that week... so they already have me plenty booked for that week. Thus that leaves the last weekend of the month. Which again seems like forever when you are hurting, and after I hung up I said Damned maybe I should have scheduled it for next week... but again I have to have someone to drive me home... so I have to give him time to schedule that in also.
It sucks now, because there is no way, no how, Jim nor Mom can drive... and Mom not at all in Dallas, hell it is already bad enough in Ennis....
So, now I have this thing scheduled for May 27th at 7:00 AM and they will do this at 8:00 AM. I've got to look some things up. No one mentioned insurance and so forth. So my though is she was the "nurse" who schedules everything, and someone else from the business office will be hitting me up for insurance and money.
I hope to Christ it is about what the injections were, which still is NOT cheap.
Yet after the article I read about Spondyliti, now I am wondering if this should be an issue I take up with my Rheumatologist anyway before I start having an invasive test. It could be that there is damage there and the tests don't see it, as usual on me, OR if I do have this, then it maybe 7 to 10 years before the evidence shows on any type of scan... here is the URL to the article:
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
Which if that is the case, then this could be something that a medication change or something may help rather than going on with a test that could lead to very lower lumbar/sacra; (L-5/S-1) surgery. As I say, say and say again I REALLY DO NOT WANT TO FACE LOWER BACK SURGERY!!! It totally frightens the hell out of me. I've heard TOO MANY "failed" back lower surgeries, that either put people in worse pain, in wheelchairs, or lead to other back surgeries to fix the first one.
Of course I did also say that about "cervical neck surgery" also. Yet, when it came to knowing I would have "RELIEF" from the horrid shoulder blade pain I was in, I was ready for anything to take it away... thus as soon as I came out of the surgery, the pain was basically gone... so there are times that any kind of "back surgery" that can give a pretty good rating of helping to reduce pain and give back motion is something to consider, but also consider very seriously about all things involved... so I cannot say NO, I WON'T .... because if that is what it takes to rid me of this pain, where I can move forward with my life, and writing my book, then I may not have any other choice but to go along with it.
I will post some information about the procedure in a bit. Again, I am hurting having to sit and type... so it's time to get up and move around for awhile....
http://www.rheumatologynetwork.com/acr-2014/long-awaited-spondylitis-guidelines-previewed-acr-meeting
RA and The Chance of Heart Attack Doubles with the Disease
Study: Rheumatoid arthritis nearly doubles risk of surprise heart attack - Since I've has 2!!!! Already One at 40 and another one at 50- I don't want a repeat for sure. My first one at 40 years old, my doctor told me then my chances of surviving a 2nd on were not good at all. So happened I was in the hospital in Dallas when I actually had the 2nd one. Or I may not be writing this today... my Rheumatologist always reminds me of just how high my chances are since I've had 2 already and now to have RA, Lupus and so on, that makes my risk extremely high... I do all I can to "help" avoid one. But, that was how I was BEFORE the first one! I was only 40 years old, I was in great shape, walked 5 miles daily, along with other types of exercise, I ate as healthy as anyone could, my cholestral was not high at all, my blood pressure was under control with medications... so you would have thought I would have been the "poster" person for NOT having a Myocardial Infarction. Yet, I did. My doctors back then had not discovered my Autoimmune issues. Had they known, they may have blamed it on that. But it was another 8 years before I was diagnosed with RA, Lupus etc. My 2nd one, at 50, I had been extremely ill. In fact, we just talked about that a day or so again. The doctors here and in Methodist hospital in Dallas, never really KNEW What was "wrong" with me. They blamed it partially on a nick in my liver from a gallbladder surgery I had in Ennis. But, then they kept telling us that I had a "collapsed bile duct"... whatever was going on "poisons" from my system were literally pouring into my abdominal cavity all around my internal organs and so forth. I continued to get more ill by the day, and after SEVERAL surgeries, they had hoped I was out of the woods, and improving. I went for over 6 WEEKS that I could not eat one bite or take a drink of anything. They had me on a liquid "nutritional" bag of "white liquid" and that was my "food" for weeks and weeks. About the time I began to be a bit better, and more able to be "coherent" - they were trying to send me home with all of these tubes running out of my side and I was not even able to really eat yet... so I got what they thought so totally "heart broken" over being so ill and feared coming home at the time, it caused a 2nd heart attack. Fortunately, I've avoided any type of surgery and I don't have any stents at the time, so far. Medications continue to control it, but believe me there is not a day that goes by that I don't think about "what if".... so never take any symptom pf an MI lightly. Even if your "young" 30's or younger, it can happen.....
http://www.news-medical.net/news/20150505/Study-Rheumatoid-arthritis-nearly-doubles-risk-of-surprise-heart-attack.aspx
http://www.news-medical.net/news/20150505/Study-Rheumatoid-arthritis-nearly-doubles-risk-of-surprise-heart-attack.aspx
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