Living through a "female's" hell....

Ya know... I have just about decided to change my ENTIRE REALM of thinking when it comes to writing, especially my BLOG!!! I want to start talking and writing about HOW MUCH CRAP WOMEN go through in order to just BE A FEMALE!!! Why is it that WE THROUGH ALL OF THESE CHANGES IN OUR LIVES, from the time we are a teenager and develop "a body" and curves, to child bearing years, birth control, yeast infections, annual "exams", and every kind of extremely "intimate" piece of us gets exposed most of our lives... mammograms, pap smears, dealing with cramps, and all those goes along with that.... then you go through either a "hysterical" ectomy! if you get my drift, to hormones changes that "atrophy" things that hell you never knew you "atrophy".... I am just blown away that men... don't have to worry about anything such as any of this... oh they may "worry" because it does not "fit" their schedule, when they are "in the mood"... I spent my entire morning crying my eyes out over "creams", worrying about another heart attack if I use some of these things that should make my life a little "special" again... WE always are making a "choice"... whatever it is, our bodies go through hell and back .... and then hell and back again... I am so totally torn into shreds about all of this crap, until i can't even write this without crying... it sucks

More News on the Lupus Front...

http://lupusresearchinstitute.org/lupus-news/discoveries/13/10/24/lupus-research-institute-announces-new-global-research-fundamental-c?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+lrinews+%28Latest+News+from+the+Lupus+Research+Institute%29

National "Drug" Take Back Day this Saturday!

This Weekend the "Take-Back" day for all types of medications especially prescriptions that you may have that are outdated, something you no longer take, etc will be on the 26th. Here is the link for more information... by the way, this is totally anonymous. I have done it the last two years with expired prescriptions, or medications like antibiotics or something that I did not use all of, or could not take for some reason. It is a great way to dispose of these. We should never throw medications in the toliet or wash them down the drain. Our water is full enough now because of us doing that. Yet, most of us do not want these lying around our home either, so this makes it easy to get rid of them. I have some samples etc that I will take this weekend. Sometimes the doctors gives you some samples, and then maybe you can't use them... thus they are there in bottles laying around... I know I also have some Humira here that I wished I could give to someone who could use it. After my Rituxan infusion for the RA, I no longer can use the Humira injections. And they are so expensive, but I know there is no way a doctors office would give them to a patient... even though they are completely sealed. I have tried to think of some way of finding someone who could use them. I hate to throw them out. I don't think I can even dispose of those on the 26th though. I believe anything that involves syringes can't be taken... even those like something for diabetes and so forth. I will have to check. Anyway here is the link: http://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html

cont... How Does One get an "Award Winning Blog"?

I've touched on this subject a couple of weeks back, and I am still searching for answers about how I can get my blog "out there", push it so others with Autoimmune Arthritic Illnesses, and other autoimmune diseases can read it. I honestly feel like I have many things to say to those that suffer so badly from the trials and tribulations that come with chronic pain and illness. I don't want to seem like I am just "tooting my own horn", as the saying goes. I truly want to make a difference in others lives. I've always felt being online, where I can reach so many people around the globe was the way to do it. That said, I also still feel that my next book will really be one that many of those out there suffering will find solace in. I feel that when I talk about my own "journey" through the land of the lost as so many of us think we are, will help others strive on to move their own mountains.
Even being a professional web designer, where I optimized many of my husband's clients websites so they got out there and rated high on Google's listings, I still am not sure how to push my own blog. I am already on Facebook, I have my 2 books on Amazon.com, I have my blog here, I am a member of many groups dealing in the illnesses, and still I feel like I am totally stranded in a sea of "sites" so that not many get to see my own blog. Recently I got the pleasure of meeting an incredible woman that also has RA. She founded what is now a non-profit Foundation that has become famous and well known within a few years. She started out with a "bracelet" she made in her apartment, that quickly became a success in the realms of Autoimmune Arthritis Illnesses. From this incredible "Buckle Me Up" Movement that came from that bracelet, she is now the Co-Founder and CEO of the International Foundation of Autoimmune Arthritis. Talk about one incredible lady! She is also a "victim" of Rheumatoid Arthritis, which is one, of several Autoimmune Arthritic diseases that challenge hundreds of thousand's of us all over the globe. I was totally elated when I met her through a mutual FaceBook friend. Even though I have written and published two books, and am working on a third that will be my own personal saga of these forever life altering, still often mysterious illnesses, I feel I am not getting my own story our here.
I have my blog, yet even with it set to be "public" I have not gotten many followers. It is kept up, and I post just about every day, most of which has something to do with either these illnesses themselves, or the way they have altered my life. Then I have a Facebook page, am a member of several groups there, yet I feel I have "dropped the ball" as far as gaining public recognition with any of it.
As I said above, I am not trying to be "rich and famous", or try and say I am some super star of blogging and writing. Yet, I feel so deeply that my "job" on Earth as long as I am here is to reach out to others, and give them the tools, the courage, the information about all of these illnesses, the medications, new research, and the hope for a cure! If I would design my own website, I could push in with SEO. Of course many of you would not know what "SEO" stands for. It means "Seacrch Engine Optimization". I did that for clients, and it helps to push them up to the front pages of search engines such as Google, and so forth where potential readers, clients and the like can find them easily. It means the essence of a "money-making" website, making it or failing. Without your site being "out there" for people to find, even though word of mouth helps also, it is almost impossible to have people be able to get to you now in the oceans of sites on the World Wide Web...
Part of me thinks I should have stuck to web design, and just forgotten what I am trying to accomplish here. I have mulled over the facts, time and again, how one person "makes" it per se', and the other one doesn't. Why is it, one person can put one tiny 30 page "novella" out there, that really does not say a great deal, yet I have two published books, and not one person really gives a darned.
My husband says it is "money" and "status". He also says it also takes "luck". So, in other words, no matter what I put out here, whether it is good, bad or indifferent... when is comes to having lots of people "find you" it is more luck of the draw, and how many "ads" you put on your blog.
Well, I come back to the "award winning blog".... How does one get "an award winning blog?" Do you submit it, is it really because you pay for ads, it is because what I have to say is not anything worth reading... I wished I could find out the real "truth"... As I continue to reach out and find some way, some how, some truth, and some realm of getting to that place, I watch others just dance circles around me, with their blogs and the like. I am genuinely happy for them! But, I feel what I have to say is also worth people's time to read... if anyone has some kind of "magical potion" or answer I would love to hear from you.....

Sharing and Supporting Lupus Awareness!

For all that work so hard to get the word out about Autoimmune Arthritic diseases, as well as those other autoimmune illnesses, many come as a 2nd illness to the main illnesses such as RA, Lupus, or MCTD... getting the word out...

Great news for those who take Methotrexate! This is especially wonderful news for those of us who go into the doctor's office, a clinic etc... to get an infusion or injection of the medication weekly... You can deliver it to yourself at home, like a "diabetic" pen for insulin does. Here is the news report on it! This is awesome!

http://www.medgadget.com/2013/10/otrexup-self-injection-device-receives-fda-approval-to-treat-rheumatoid-arthritis.html

A New Book - and Our Immune System A New Look (and the drama of being a woman in her 50's)

http://www.nytimes.com/2013/10/15/science/the-compatibility-gene-offers-interesting-insights-on-the-immune-system.html?ref=nicholaswade&_r=1

I found this article interesting and thought I would share with you. I am extremely busy this week, although I feel I have gotten nothing done. I  try to get here to post and dammit, there seems to be always something else to do, look up, and it just goes on and on.   With the weather changing I woke up to a "crick" in my neck and my entire left shoulder (OMG NOT THIS ONE!!!) in just a stage of almost hurting enough to make me cry! I feel like we must have a cool front headed this way. I have had such great success so far, so good (cross my fingers and toes if I could) since the 2nf Rituxan infusion, am I so prying I am able to continue to be as least that much free of pain, (never all of it is ever gone), but also some of the daily stiffness had diminished until this a.m. 

Of course the (OMG) above is because even though my left shoulder did have surgery on it,several years ago, I have been extremely fortunate that it has not given me much hell. Even my left elbow, which in MRI's show to be just a freaking mess (I had surgery on it in the late 090's for a severe tear, and it is torn again, but it quit giving me trouble,. So, I have just gone on without being concerned. Hopefully it will continue to behave, but with me you never know. None the less, I am not sure what this left neck/shoulder thing is but my hopes are it is just a "crick" and it will dissipate soon.

Other than that this week has been a conundrum of good and not good at all. I did finally go to the new "female" .... female doctor. I did really like her, so that is great news. Of course not that I want to have to see her again, but I do have a GYN now just in case I need one. I found out, that even though I had a basically complete hysterectomy in about 1995 or so, I was supposed to have an "annual" pap smear anyway. Of course I felt like a fool, because out of all the medical knowledge I try to keep up with, especially anything that involves something that effects me, I had no clue about this. Not one doctor had ever mentioned it to me. They ALL know I had a hysterectomy, and from day one, not one said that even though the cervix is all removed, that if you had any displasia from your previous pap's that you could have some cancerous cells develop where that has been taken away... that there can be a tad bit of tissue that may develop into cancer... NICE TO KNOW 20 years later!!!! And that is the "cut-off"... once it has been 20 years with all "clean" pap's, then no others are required... damned talk about embarrassed... out of all the stuff I TELL my doctors about and it seems they may not know... here I am walking around all these years and could have still gotten "cervical cancer" or even ovarian cancer (as far as I know I still have one ovary)... so guess what?? I got a damned pap smear yesterday... go figure! She said I probably would not need any more. If this one is "okee dokie" then I am probably good to go. 

Then she seemed to think that my bladder repair surgery has nothing to do with my problems now. She seems to think (this word of dread for ALL WOMAN-KIND) - that I am going through .............grrrrrrrr and I never really believed it could cause issues... Menopause.... damned not something any "girl" my age or any age wants to freaking hear!!! So here we go with "hormone" creams etc... as far as I know I cannot freaking take estrogen pills due to my previous heart attacks... but she did talk about a brand new pill out that "acts" like estrogen to help with the symptoms, but it is not supposed to be estrogen related as far as its side effects..... but before I even dare get a script (which a pill is so much better than damned creams---yuck)!!!! I have to talk to my cardiologist... no way will I risk having another MI = since I have had 2... don't need or want any other heart issues for sure... I already run enough risk with RA, Lupus etc.... all of the Autoimmune Arthritic diseases and their "mates" I have... thus adding something else to the fire, is not what I need to do. I am in the midst of looking up this new medication today... and I will post about it also.... more to come... freaking nine billion things to do today... and not enough "spoons" to do 3 of them :)  Rhia

Getting the most Quality Time out of A Doctor's Visit

There are many of us that feel when we see our doctors we are hurried through a visit, don't get to discuss all we wanted to, or get out of the office and remember you have questions that did not get answered and so forth. It seems all of our physicians now are "overbooked" and "under staffed", or they just stretch themselves too "thin", thus we don't get the undivided attention we want and should have when visiting our doctors office. Here is an article about how to make the most out of your doctors visit.

Before I post it, I wanted to give you a few of my tips, even before I read the information. :) I ALWAYS go in with a LIST! I first of all, carry lists of my current medications, my current doctors with phone numbers, addresses, and FAX numbers. I carry a list of EVERYTHING I want to speak to the doctor about, questions, concerns, symptoms, side effects of medications, new things I have read online and so forth. If this is a doctor I don't see very often, I start my list even a week before the appointment. That way I have time to "remember" all of those questions and/or comments I had been thinking about since the last visit. With the age of the internet, if I read an article, see a new medication online, or see anything I think maybe pertinent to my office visit, I print it to take with me. They may not have time to read it then, but it is there to scan over and possibly hold answers for you when they have time to read it. IF the visit is with a brand NEW physician I check to see if they have a website where I can download the new patient information to fill out and take with me. This saves a load of time for you and for the doctor's staff, and the physician. That may lead into giving you more time with the doctor, rather than filling out paperwork in the waiting area. If they don't have a website, and the appointment maybe a month away or more, I ask them if they can mail me the information so I can fill it out ahead of time. If you have had new "procedures", tests and so forth, take copies of those results with you, if possible. I try to get a copy of everything I have done to keep in a file at home. I scan them into my computer, and keep a file on my desktop. Then all I have to do, is print it, update medications and so forth. This saves YOU lots of time hunting for results, or having to wait until the doctor requests the information, thus holding back a possibly diagnosis, or them wanting you to have the test again, and so forth. Now I will post this page about their tips... I will see how closely they are to my way of trying to make quality time with my physicians or what they may also advise...

http://www.lupus.org/blog/entry/getting-the-most-from-your-doctors-appointment?utm_source=Newsletter+10-22-13&utm_campaign=Newsletter+10-22-13&utm_medium=email

Recovery - Life long Process

I know some ill think this has nothing to do with Autoimmune Arthritis or Chronic Pain and Chronic illnesses but I know from speaking to many, that at one time or the other they used the "addiction" to squelch the pain... whether physical, emotional or mental... it "dampened" the hurt... thus this does hit home for many...


 Here is the link to the entire website and its information:

http://blog.stjosephinstitute.com/how-long-to-change/

Due to a very personal friend of mine coming to grips with the realms of an "addict" of pills (I HATE the word ADDICT but I know that really is the term no matter how WE outside the situation feels about it. So, I have also recently found out there are several of my close friends on Facebook  that have dealt with recovery and now sobriety for years. Which I commend them highly! After reading this I felt the need to put it out there, for I feel there are many of us that honestly don't know someone who can be very close to us, and addict or alcoholic, and we not know. I am so proud of this person who has been "clean" now for 6 weeks. I am trying to understand the whole thing, from why the addiction, and why "recovery" honestly is a life long process. And I know where there must be especially spouses, man or wife that would not be able to "walk" that sobriety "walk " no matter how much love you feel. It just like some of us that so "chronically ill"( of which I think of and addiction of any type to be a "chronic illness") just like a diabetic or we are... we have those that their spouse cannot deal with the chronic illnesses and they must go... even if love is there sometimes people are just not that strong.... So,  post this for those who are recovering, those that have a spouse who is trying to recover, even more for the ones that need their spouse of family member to realize their problem and take that first step...  my heart and prayers are with you and my hopes are that even though that "craving" may never truly disappear completely, may you find your life is more life now full and more "normal" than when you used those "wrong tools" to aid you to get through emotions that can be very difficult..  I hope this post may help someone else...

Along the Lines of FM and Chronic Pain More Exciting News also...

This is such a wonderful thing that is happening also. This one about the realms of Fibromyalgia and Chronic Pain.

Here is the first part of the letter I received and you can read the rest at the  URL below:

Dear American Pain Foundation Constituent,

Recently the National Fibromyalgia & Chronic Pain Association (NFMCPA) inherited the good works of the American Pain Foundation. The NFMCPA is a 501c3 charitable and nonprofit organization focused on fibromyalgia and chronic pain conditions...
                          more here:  http://www.fmcpaware.org/