Sunday, September 8, 2013

Invisible Illness and Chronic Pain Awareness... more information... and the dilemma caused by some




I just get fighting mad when I read these kind of articles, as well as know the horrid things we, as chronic true pain patients go through to be able to have a better quality of life. Dammit, yes I must take pain medication that is very strong. Yet, without it, I honestly believe I would die. Why?? Because there would be absolutely no way I could withstand the horrid intractable burning, stabbing, unrelenting type of pain I go through without something to help it not be so bad. Yes, and I did say "not be so bad"... NO amount of any kind of pain medication is going to take away "all of the pain". I "live" with a learned amount. All of us do. I don't care if you take aspirin, Motrin, Aleve, or one of the various narcotic pain medications, it only stops so much of the pain, the rest is what you have to learn to deal with daily. I have SO MANY various chronic illnesses there is NO WAY I can be totally without pain daily. From RA, Lupus, Degenerative Joint and Disc Disease, Migraines, Osteoporosis, Osteo-arthritis, MS, and all of the multiple joints I have either had to have replaced already, or the ones that are getting to that place, like my thumbs, elbows and hips... that are going to be there soon, even "fixing" those still does not rid you of it all. BUT, YOU CAN HAVE A LIFE, and you can WITHSTAND IT, IF you can HAVE RELIEF FROM YOUR PAIN MEDICATIONS!! They along with my other types of medications, those that I am able to take (I have had 2 heart attacks, and other physical issues that do not allow me to take some medications), I am able for the most part to try and live a half way "normal" life. Notice I said "half way" normal. There are days, weeks, .... I live with the pain being bad again. Not that anyone really knows why. Even with every test available to the medical profession at times can tell you or your doctor exactly why something hurts as badly as it does. But, when you have "bone on bone" with things like RA, Osteo-arthritis, DDD, DJD, you are going to be in pain. When "parts" of your body wear out, when blood cells are not right, when your bones are not as they should be, when nerves begin to not be coated with myelin, and again the list is endless you HURT! Hell, if it were at all possible, I would throw ALL of my medications, pain and all in the trash and never look back. For the majority of us we hate having to take the meds we do. They cause their own set of issues, due to side effects we endure. But, we must make a choice, to have surgery and get out of some of the pain, to take medications that may cause side effects, but the control from pain outweighs those side effects, or even though you feel it is a total waste of money, you have expensive, needless tests just so you can give your doctors something they have to go on about your medical conditions. It is AN EXTREMELY SAD DAY when DOCTORS who have spent YEARS IN MEDICAL SCHOOL and take an OATH to HELP PEOPLE, are TOLD BY EVERYONE ELSE WHAT THEY CAN AND CANNOT DO, PRESCRIBE AND SO FORTH. There are TOO many FINGERS IN THE PIE, when that can take place. I cannot fathom a "pharmacist" telling a doctor what he can give a patient. Now, if the patient did not mention an "allergy" to something, then those issues are different. But, just to "make a decision" based on their own judgemental, sizing up of someone by the way the look etc.. is purely wrong!!! That is no different than "profiling", which most of us hate when it happens. But, for someone such as a pharmacist, or someone in a business office at a doctors, etc. to jump to some decision about a patient due to the way they look, act or etc... at the office is ridiculous for the most part. Hell many people are "nervous" at a doctors office. It is usually no place you really want to be, thus that is enough to make you nervous. If you have to sit and wait for an hour or more in a little room by yourself, half naked, yes you are nervous... some people hate having book taken and it upsets them... so this business about the staff "sizing up" patients by the way they act in a waiting room is bull. Now, if someone comes in and is aggressive, rude, apparently "high" and so forth that is different. But, just because they seen "nervous" means nothing. I read a great article a couple of days ago about people that are chronically ill, women for the most part, will not "dress up", put makeup on, etc... if they are going somewhere that they feel they need to "show" that they are sick... what crap is that??? but, you know what? I catch my own self doing it. Again, that "but you do not look ill" stuff. Just because we may "hide" the dark circles, or put on our decent clothing, or say and and half way make conversation with someone does not mean we feel on top of the world!! I try my best and "hide" the pain when I am in public. Yet, I catch myself in fear of "looking" nice also. I sometimes will not go to the store, or a doctors office, or the bank "with makeup" on and dressed nicely in fear someone will think "well she does not appear all that sick"... why should I feel that kind of crap! It's totally unfair, but we do it. I know I am not the only one... I get to where I don't know what to say to those who genuinely know me here in town locally, "how are you feeling"? I hate saying like hell... all the time... it sounds crappy for me to "complain", yet I also fear saying "Hey okay today"... thinking now they think I am not really ill at all. There are times when I may be going for the day and taking my Mom a couple of hours away to the Casino for a Mom/Daughter outing for the day. Something for us to "bond" together doing, that gets us away from everything... bills, stress, worry, illness and so forth. Yet, I almost fear telling anyone "good" like this, and have them thinking, "well she is not that sick, she can go to the Casino"... Hey I can't count on both hands how many mornings at the last moment we have had to cancel the trip because I am not well. It happens all the time, with many things. For instance, I have been in pain and have been dealing with several bad side effects or what think are side effects from the new infusion and two others meds, one new, the other the dosage was upped... so I had not been out of the house for over a week. Due to that I had not been able to even run to the store... or clean the house like I wanted... or bathe the dogs... etc... I feel too bad to even cook, or bake... and even the thing I love being outside early in the morning to water my flowers and watch the "hummy's", I barely had the energy to do. So, I never know when I must cancel something we planned. I wanted to go to one of the churches today and still am hoping to. But my stomach is upset, the humidity is giving my thumbs, hands and feet a fit with pain, and I am not sure until later in the morning whether I will get to go to church or not. I won't go if I feel this badly then. I cannot enjoy it at all, and I fear getting sick there at the church, etc. So, there are times you cancel last moment plans, and disappoint those you love the most due to these illnesses and sometimes the pain of all of them. The guilt is there so much of the time. You often feel responsible for being sick. I am always "apologizing" to my husband or my family because I am ill... which is stupid... it is NOT something I have wished for at all... But, you do feel it is "your" fault, when something happens and because you are ill no one goes to something just because of you... So, having your correct medications, whether they are for diabetes, anxiety, high blood pressure, your heart, or for CHRONIC pain!!!, they are a necessary part of your life. They "help" you life whatever part of normalcy is available for those of us suffering... when we suffer, our loved ones and family suffer with us... I am beyond pissed about the entire thing... and it has hit my family of which I never thought it would... and I never thought my "great" MD, would be one of those who somehow, for some reason, still unknown by me or others I guess, why he has suddenly done some of the things he has done and why he is NOT doing things he was doing,.. I feel that an explanation at the very least is necessary... to all of us...
http://americannewsreport.com/nationalpainreport/living-pain-lies-damned-lies-medical-research-8821457.html


This National Pain Report.com is full of great information ... Their main URL is:

http://americannewsreport.com/nationalpainreport/

Saturday, September 7, 2013

More on Chronic Pain Awareness Month...





There are many things you can do to bring more awareness as to how this illness brings life down to "Zero" at times when the pain is bad. It harms not just the person with it, but their entire lives. family, friends, activities... relationships... everything suffers... jobs, schooling... whatever you are doing in your life is effected by this horrid disease.  The issues remains even many doctors have no clue how to address these types of issues. There are many underlying causes of chronic pain, and chronic illnesses... all of which can be complicated, and can be piled one on the other. If you have Lupus, then more than likely, you can have RA, Raynaud's, Mixed Connective Tissue Disease, Chronic Fatigue Syndrome, FM, and the list goes on.. all of which have their own set of side effects and symptoms from rotting your teeth, to severe unyielding pain at times. You can be severely fatigued for weeks, days, or months. You can gain weight or lose weight. You can have such brain fog you are unable to even think, much less do a job right... all in the name of Chronic illness and pain... so we MUST get the word out... more and more of everyone need to know and UNDERSTAND the workings of these... without that research, hope, and a cure will never exist... so take a moment to tell someone, put signs in your car windows, I did. I printed these we have online and taped them in my back car window last night, along with on my front door at home... make flyers if you can put them out... hand out a card you make, take a flyer to doctors offices for them to hand out... do something, sign a petition, make a petition, write your own letters, or emails... make a call... do something... there is lots you can do, right at your own desk, that can make a difference... share the pics on FB with your friends.... but just do something!

Wednesday, September 4, 2013

When you run out of Words... When What you "say" does not makes sense... When Life seems So "Blown to the Four Corners of the Earth"

I am not sure why I am even trying to "write" today. I have not admitted it to myself yet, and most assuredly not admitted it to anyone else, but I feel I have "nothing" to put down in words that anyone, even myself cares to read, much less understand. I have lost all ability to truly share of my feelings. I fear sharing all of them, because I would never want anyone to deal with the frightful pain this place inside comes from. It is a wound that continues to grow... like a hole in a sweater, you pick on, and it becomes larger, and rips more every time you touch it. My thoughts are so jumbled, my spelling so "off", from the tips of my toes, to the very "synapses" in my brain, nothing is working properly. I can't even look past the emotions that bind me, and try to see anywhere I will recover. All I can do, is barely keep my own self "watered". Much less try to water my outside plants in the early morning light. The very things I used to love, all seem futile. Anything I have ever enjoyed doing, seems hopeless and useless. Where do you go, what do you do, how do you get over... feelings of absolute despair? I thought I knew... and maybe I do for others, but not myself.

My son made a comment to me on the phone yesterday that really hit me hard. He said he wished sometimes I would just say to him, "Things are going to be okay"... they will work out... and I always thought I did say that... to him and his sister, but I guess I was wrong... and for that I am even more saddened. I thought I had "supported" them, and given them legs to stand on, and a foundation to build upon. Yet, now I find out, that I may have not given them half of what they needed from me at all. I thought I have told them "it will be okay"... throughout their lives, when things just go awry. But, after the long conversation I had with him yesterday, I came to realize that sometimes I treat them too much like "adults" in many ways... rather than treating them like they are my kids, even though they are grown. I have always felt like I did not want to "tell them what to do" when it came to them being grown, and having lives. I never wanted to be one of these Meddling Mom's" that was always right up in their business. I had a parent like that, and boy did I ever run the opposite way... with my own. I won't even give them my advice, even when I feel maybe I should. I fear they will not appreciate my view on things, thus rather than "run them off", I have kept quiet and only offer what they ask of me. Now I see I probably have stood off too far, and been more distant than I have wanted to.
I can't go back and change what is the past... but I can change what happens in the future... and I hope they know I always feel like I told them, that things will be "okay"... I just say it in a different way than I guess I should... so I shall try and make that different for them... they both have lots of stuff in their lives that also cause ups and downs... one raising three kids... and the other recently out of a very long term relationship, now with a new job, in a new part of the state... and that is a very, very, difficult place to be. I know... I was there... with a new place, not knowing anyone, new job, out of a home, and a relationship, that even though sucked, I was not alone... and that loneliness sucks... it takes time to meet others, to get used to a new part of the country, to get used to a new job, to find somewhere you can call home... I did it, and I know they can also... and it will one way and one day soon, be just fine... and it will be totally okay... but when you are first there in it, and out of the old... it is just not a pleasant place to be. I can say it was one of the best conversations we had in a very long time... and for that I am blessed...
I am still reeling from my own crap... I am very concerned about the physical issues that face me, and feel all of the doctors have just "missed the boat", on part of what my health issues are... but we know our bodies better than anyone else... and I think they possibly due to it being so difficult to diagnose, have missed out on the fact that many of my symptoms lead to MS. Even my Rheumatologist was in agreement with me two weeks ago. Fortunately, the Rituxan is not being used on a trial basis for MS, thus as he said, possibly we may "kill" two birds with one stone...
My son made another very good point, when it comes to be "lack luster" thought about my writing... it is time for me to "re-invent" myself... my writing... I need to find a new way to express my thoughts, a new reason to write... some other way to bring out what I want to say... and he is right... I think I am bored with my "old ways"... I am sick of my illness, yet I want to help others... I am sick of speaking the same old thing, day after day, and it seems no one gives a damned... yet I write for me... and he is right there... I always began writing for my own self... and then later it became a place that I wanted to share with others... I had written thousands of things well before I shared many with anyone...

So, for all out there... I want to try and give this month over to "National Chronic Illness" Month and Invisible Awareness Week... I am not sure how much I will feel like doing on either, but I began yesterday, by "sharing" the information on FB, and here on my blog...

I will try and get more involved... for 3 years past, I did get a proclamation signed by our Governor of TX. But, somehow I missed doing that this year. I have done it for Lupus also. Of course this year they have a place to post those on their websites for these occasions... and of course this is the first year I did not get one done. I guess with all of the things happening health wise I missed it. I am looking to see if I can still get one signed by our Governor... it is a way of getting our information out there in the public eye for sure....

I hope you also find some small way, or some huge way to also give a moment of yourself to these two special issues... for they are both so critical... and for all of us with illnesses ... we totally "get" both... why do people say "you look good"??? when they do not know... and just the chronic daily grind of being chronically ill...

I hope you also find your niche... your place... your own way... into the light... and out of the dark... I am still feeling around in the dusk... not seeing light just yet... and I pray the words finally come again... my greatest fear is I will lose... my voice... forever... and that frankly scares the hell out of me... for where do I go... what do I do... without it???


Tuesday, September 3, 2013

September 9th through 15th also National Invisible Illness Awareness Month

Another subject we are all too familiar with and that is "invisible illness". It happens to be National Invisible Illness Awareness Week next week, and falls into National Pain Awareness Month. Here is a good website out there, and I am sure one of many about how YOU CAN make a DIFFERENCE! We sit around thinking we are just "one" person, so how can we make a difference? Yet with one voice, becomes, another, and then 10, and 50, and before you know it, we can have thousands out there telling the stories that need to be heard!!! Please post your own story, your own special sites you like, someone else's story you know about... all of it does matter....

http://invisibleillnessweek.com/

National Pain Awareness Month and What you Can do...

All of the links below are about September being National Pain Awareness Month! It is a very special time we can all cry out in ONE VOICE, and be heard through out the nation and the world! I hope you join in, even in your own small way, or huge way to help us get the word out there. We are not some "idiots", or "junkies" looking for medications. We are not "lunatics", "depressed", "hypochondriac's" wanting attention, we are not "doctor seekers" just needing a doctors attention, we are not trying to ruin anyone's lives, or make yours worse... we are true chronic pain patients, no different from diabetics, those with high blood pressure, or any other type of "chronic" life long, life altering illness. The ONLY issue with us is that there is NOT ENOUGH KNOWLEDGE OUT THERE! There are not enough researchers, because pain is a huge challenge. A challenge for those in it, and a challenge for those trying to help cure it. It is far worse than many cancers, because with pain, chronic pain, you never "see" an end in sight. You know each day there is no "cure" right now, and you must wake up and face the day again, and again, and learn to "cope" the best way possible. We are your everyday faces, your bankers, nurses, lawyers, hard ware store workers, those that wait on you in the restaurants, or in your local retail store.... PAIN does not discriminate other than it seems to strike more WOMEN than men for reasons we still only guess at. So, it is OUR month to once again SPEAK, TELL, SHOW & try to find RESOLVE WITH THIS life altering, life stealing illness!


http://www.apmhealth.com/blog/bid/278353/September-Pain-Awareness-Month-Recap

http://www.healthcentral.com/chronic-pain/c/5949/119382/september/


http://uspainfoundation.org/september-pain-awareness-month.html

http://www.inthefaceofpain.com/take-action/pain-awareness-month/?gclid=CJKMgcmKr7kCFSgS7AodBmUAiQ

http://www.theacpa.org/news/National-Pain-Awareness-Month

http://www.national-awareness-days.com/pain-awareness-month.html