Ongoing Lupus, RA, trying to cope with Loss of my Aunt, and all that is so complex when you are fighting a chronic illness/pain issue, dealing with stress, surgeries, and grief

Life can be so awesome one moment, and tragic the next. My Aunt Geri, Moms last living sibling, her younger sister passed away yesterday afternoon after battling a rare form of stomach/intestinal cancer now for a long while. I believe it has been at least 3 years, if I am remembering correctly. She went through lots of chemo therapy, but we knew for one it was not operable, and two the doctors had already said that it was terminal. Yet, for the Grace of God, she lived to see her first Great Grand daughter born, and then some. She lives up in Mesquite, so we don't have any details at the moment. Even though her family, along with my Mom and I knew it was coming, you are never really prepared for something like this. Especially with Mom and her lower back issues, and all we have been through and are still dealing with, plus my own issues with my back, needing surgery, then things getting complicated with me contracting cellulitis, no 3 weeks of antibiotics later and the lump remains on my thigh under the skin. When I saw the doctor Friday, he said if this last round of antibiotics does not show signs of going away this, then I will need to see a surgeon, have the lump removed, and then they can determine exactly what it is. It has now gone from being about the size of a silver dollar, kind of a bit hard, but never feverish, red, and nothing ever burst through the skin, like you would assume cellulitis would. That is kind of the reason why he and myself are baffled as to why it remains. It has now turned into being about the size of a quarter but very hard, sore to the touch, plus I developed another lump on my right leg, that is almost in that same spot, just on top of my right thigh, and almost exactly across from the other one. It is not nearly as large, about the size of a pencil eraser, but sore to the touch, and like the other one pretty hard, and does not move around under the skin. At the very first, before I even knew what it was, it was a bit softer, and it kind of moved around underneath the skin when I would try to check out how large it was. Then of course, I had ran out of Orencia - now I guess it has been about 4 to 5 weeks ago. I had issues getting the insurance to get off their butts.. I needed a new script from the doctor, which they received, so I thought they were going to fill it and send the meds to me as usual. Well, after going another week, no call and no medication, I called them. I found out yes, they had the new script, and even though i had already asked for it to be refilled before they got the new one, they did not fill it. Instead they were waiting on me to call back and ask for it to be shipped. In the meantime the lump formed, all of the other stuff came up with both Mom and myself, so I have not had any Orencia in weeks. I feared my last couple of injections may have been contaminated somehow and caused the cellulitis. I am supposed to be on Xeljanz anyway, did the blood work and labs, then the TB lab test came back indecisive, thus I still have not been able to have the chest X ray ... I was hoping to do that last week, then I came down with the stomach bug, and I am still not completely over something with my stomach. I am still somewhat nauseated, which I contribute to the heat, already being sick, a headache, all of the stress about my Mom, my own things such as the back surgery, and so forth. So, now my fingers on both hands, and in between my fingers are swollen, my knuckles really don't want to work correctly and I am having hell with the RA in both hands and wrists. I have always had some issues with them, but more in both thumbs. I have not been able to get the swelling down, and just trying to open a bottle of coke or anything is so painful, plus my grip is really bad right now... and then my darned keyboard that I love... it is solar, seems to be going out on me, thus this one sucks and does not even allow me to do a hyphen or quotation mark, and It is really irking me to no end...PLEASE continue to keep my Mom, and the family in your thoughts and prayers... as I had posted before, this is Moms last sibling, she has lost both parents, a brother, a sister in law... and most of the family on both my Grandfather and Grandmothers side.. of course we lost Dad in 2005... and am sure that brings up things such as that for Mom anyway... I appreciate each of you... I am thinking about trying to get ready for church. I missed this past two weeks because of being so sick and was going to try and go this morning... but I am still dealing with a bit of stomach issues, and with all going on, I HAVE to go and have my pain pump refilled tomorrow, I have no choice. We waited this time until THE DAY my PTM shows the refill date to be. For some reason it almost falls every time where I have to have it filled too early, for one reason or the other... so it worked out to be on the day this time.... more later...

I appreciate your prayers, and yes mine are with you also... this is just proving to be "another one of those tough years".... I had so hoped that 2015, would bring more Light, Hope and Positive things to our lives. Yet, once again so many of us are trying to cope with all types of chronic illnesses, pain, mental and emotional pain also, the loss of loved ones, and this entire nation in general... I can barely stand to watch or look at the news anymore. It is almost too depressing to see just how horrid people can be. From harming their own family, friends, to those who just do NOT care about humanity... the greed, corruption, the back biting, back stabbing... those that get rich off of our own misfortunes, from lack of care from insurance companies, to the extremely ridiculous prices of medications, even generics now are soaring out of the roof... and people have to almost feel as of they always have to look over their shoulder, whether in a huge city, or a small town... so many as I said above that have no remorse, or regard for human life. Even all of the "election" stuff... it just almost makes me physically sick to my stomach at the thought of just about anyone running for President of our nation next year and anyone of those possibly winning... we are already in a terrible condition, not just nationally, but internationally... countries going bankrupt... people not able to find jobs to support their families... and the amount of ever growing medical issues... our water, air, soil... all polluted with Lord knows what... or whether you will walk out of your local market, or church, or movie theater and be taken down by some "home grown terrorist"... I despise even the sound of that... hard for me to fathom any human especially in this great nation being "home grown to terrorize, and kill others... the insanity grows daily.... we have the weight of our own issues on our shoulders, along with the weight of this entire nation and world, as far as the safety, security, and welfare of all of us.. again thank you all for your continued thoughts and prayers... my Mom and I, along with my kids and family appreciate each of you..

Coping with Loss - Life changed by Autoimmune Illnesses, & all kind of other health ailments, complications, & the thought of a chronic illness taking your very life away...

Over the past several years the subject of having autoimmune illnesses, along with my other health issues.... many of them due to the AIs... a voice sometimes brings up the loss we suffer when the very life we have made is jerked out from under you.

You begin to research, to see specialists, to try medications that can have as bad of side effects as the disease themselves do... you know that once you find out that your total immune system has been hijacked by these horrid diseases, your chances of survival becomes less.

We ALL have times we think about dying... passing away to move from this world into another, whatever you think that may be for you...

Whether you have a brush with death from a bad accident, from another disease, such as cancer, diabetes, or possibly some other issue from Mother Natures storms, to those who choose to walk into a public place and open fire on unsuspecting individuals, or crash planes into buildings, that would just as soon blow themselves up in the name of their religion... there are many ways that some of us may face whether our time is up on Earth, and feel that near death experience is often a wake up call, for us to do something different in our lives.

I have encountered more of these, than I care to admit actually. A 4-wheeler accident at 25 years old, nearly within inches as I centered the front of a car, and I went completely over the top of that car, after my mouth hitting the hood ornament, and for fortunately the momentum threw me completely on the black top behind it and not through the windshield... or I would have never made it...

Then at age 40, I suffered a heart attack, that at first the doctors thought caused severe damage to my heart muscle, and it was not until I was transported to Dallas and had an angiogram, was I told I was extremely lucky, that there was very little damage to my heart... and


in 2010 after a night of being suddenly so extremely ill that I literally could not walk, and throwing up green bile... having a gallbladder removed, which something went terribly wrong and I had to spend 6 weeks in a hospital in Dallas, and at the time again, they were not sure exactly what was wrong.. I was in and out of surgeries several times, and supposedly one issue with a cut in one of my bile ducts. It was allowing toxins to pour into my abdominal cavity, thus again I was just meant to still be here, because I finally did get well, yet before I left that hospital I suffered a 2nd heart attack. Due to all of the stress emotionally and the toll my body had been through, the felt it was more from an artery in spasms, and I have so far not had to have any type of stent etc... all so far is being treated with medications, for which I am grateful.


Till this day, even my own Primary Care Doctor tells me, that I certainly was meant to be here, because he feared for my life when all of that went down. Now, with the Lupus, RA, Sjogrens and so forth, along with medications such as Predisone, Biologics, and my other health factors, if I allowed myself to, I could bury myself under neath my bed, and not face life daily.

So, a couple of days ago, I was listening to the radio while running errands and Tim McGraw and his song, Live like You were Dying ... came on... I have always loved that song and it hit me after the ordeal recently with the cellulitis, so many antibiotics, the stomach and intestinal whoa s I have been through, along with the concern over my own need for lower lumbar/sacral surgery... and of course knowing these AI illnesses, along with my other health issues leaves me many times over of becoming ill with something that could take my life in an instant... my Rheumatologist has reminded me more than once my chances just due to the RA of having a heart attack are like 50% more than a person without RA.

I have a dear friend, and she is suffering after being cancer free for over 30 years (she had cancer while we were still in high school and beat it), it has case back and has truly shook her to the core...  things for her truly have been a great deal like my own, with those people you had come to county on, suddenly just walk out on you... when you need them the very most.... and even with someone there you still feel frightened by the what if this, that or the other...

I also find myself, as well as many others, not wanting to talk about the subject - of course it is human nature to hide those feelings and try to surpress those horrible thoughts, yet they have a way of creeping in and I have found my own best way is when it comes up in thought to myself, I must work it all out and not try and ignore the facts... facing all of the possibilities for me has been a long road, but it has truly helped me to learn to deal with those nights I wake up drenched in sweat, crying out, and jumping up for night terrors.. plus for myself the more I try to keep it under wraps the more I find myself overly stressed and making myself almost ore physically ill.


So, what is the point of this post? For one, due to the complications of myself at the moment, and all that those medical issues cause, along with the concern over my Mom her back problems, and getting her the doctors and proper treatments to relieve the pain is has... I do better putting either pen to paper, or fingers to keyboard I guess you could say and writing about it... it helps to purge those feelings, of course they certainly will pop up again in the future...

Plus I DO WANT others to realize being frightened of dying, or feeling like your life could be taken away - way to QUICKLY when you still have so much more life to live is difficult to deal with.... so by my own posting of this, I hope to help others to get in touch with the reality of one of these and/or other chronic illnesses taking you away for good from your loved ones... and working through those feelings...


Here are the lyrics to Tim McGraws song....

"Live Like You Were Dyin'"

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

[Chorus]

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

[Chorus]
Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.

To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.
To live like you were dyin'.

I am not quote sure exactly what point, if any that I am making as far as my readers. At the moment, a part of this posting is for myself... facing my own mortality issues, facing that my last living Aunt, could pass away at any moment, yet that is with all of us... we could be in a horrible accident, or be struck down by an emergent health problem, a stroke a heart attack, an embolism...

We could walk into a shopping mall, or a movie theater, or into your local Wally World, and someone decide to bomb it, or open fire on us, the innocent ones, even at church, it seems no one is safe anywhere, anymore... Our world is and had been tested, our nation tested and tested again... from strange and new diseases, from MSRA and bacteria that are resistant to all medications we have now... we could be gassed by something dropped into our air, or in our water... we could have a plane fall out of the sky, or a local lethal business, such as a chemical warehouse, or other flammable place catch fire and explode to rock a small town or a huge city... each day we face the fact that something could happen and so many horrible, unspeakable acts have happened over the last several years... and they will continue to happen... those who should NEVER ever own a gun, having them in their hands and putting us at their mercy...

kSo, my point for myself.. is to do the very best I can to live my life, like the next week, the next day, the next hour... the next moments could be my last... to feel prepared for the unknown... for the time, I am called upon... for the moment, I have completed my visit here, and move onto a place perfect, without hatred, without stress, without want or need, without greed, without hunger, where everyone is totally happy, and everyone loves everyone else... so for you.... and me.... think of things you might do to Live this Life as we know it, Like we were dying....

National Pain Awareness Month in September and more from the US Pain Foundation Summit and Paul Gileno - Chronic Pain Takes so Much from Patients, Caretakers, Family & Friends Lives

Opening remarks are underway at the Advocacy y Summit with President & Founder Paul Gileno providing attendees... http://fb.me/4lxnrkEX0 

Chronic Pain can take over your life, the life of family, friends, caretakers, and even cause hardships with relationships. It is truly a "home wrecker" and we have way too many people, especially in places of government that just do not understand the ills of chronic pain.

I am trying to do my part in September to raise Awareness on just how this life altering "disease" can control every move of your life, and how we need to stand up and educate others, including those around us, physicians, the medical profession, government officials, and this nation and world for that matter about the effects of pain when it becomes chronic and out of control.

As a pain patient myself, all too many times, I've been "pointed" at and felt as if I was some kid of criminal because I wanted to stop the pain... it cost me jobs early on in life (I began with chronic migraines at 17 years old)

In fact, even though I had other very severe chronic issues with my health, that finally led me at 43 years old to file for complete disability, the disability judge ruled in my favor for the number one paint of the migraines... I either had to quit a job, or after years on a job, would miss so much work with them, it led to me being dismissed from a job...

I worked from the time I was 16 years old, and yet I suffered year after year with those horrible headaches... 

Ironically, the regular migraines got better about 8 years ago, partially due to my internal pain pump, but then after I was diagnosed with RA and Lupus, I began to have severe "Lupus migraines", that nothing will touch other than strong doses of prednisone... 

Yet, my "chronic pain" as with many others goes far above and beyond migraines. When you deal with autoimmune illnesses, such as Lupus, RA, Sjogren's, and many others, pain is a part of your daily life. Oh, sure, with the right medications, the proper physicians, and all out there available now for pain relief, there are numerous ways to "control" pain. Yet, nothing will take it all away. Nothing will prevent it from sneaking up on you, when it is least expected, and become "intractable" or at the very least put you on the sofa, in the bed, or otherwise blindside you, when you are certainly not ready to deal with it.

When my Lupus and/or RA; along with several other health related issues decide to come calling, sometimes there is not anything that can be a cure... it may curb pain, but at that time, that is what it can do... make it tolerable... and that is very difficult to determine, because pain in itself is a complex illness and is different for everyone. What one person thinks is totally off the charts on the "pain scale" maybe at a 5 or 6 for someone else. 

Each of us have the same chemical makeup when it comes to pain, but depending on the cause, what you are taking, why the pain is coming, whether from some physical ailment, such as a worn out joint, or a migraine, or from several joint problems, muscle spasms, stomach and intestinal pain, "acute" pain from an accident or illness... all have different ways of causing pain, and all have a unique way of developing.... and being treated...

Updates from the Arthritis Foundation - RA, Supplements, JRA and more...

http://blog.arthritis.org/living-with-arthritis/cope-with-arthritis/

Support Groups and the AF

Herbs and Supplements

http://www.arthritis.org/living-with-arthritis/treatments/natural/supplements-herbs/?utm_source=enewsletter&utm_medium=dedicated&utm_campaign=supplements

Other therapies

 

http://www.arthritis.org/living-with-arthritis/treatments/natural/other-therapies/ 

 

News and Updates from the Arthritis Foundation!

 

 

http://www.arthritis.org/about-us/news-and-updates/

RA, Lupus, Chronic Pain - the Complexities of Living With an Autoimmune Illness and/or Chronic Illness - How Do you Live with the all too often feelings of "guilt" of not fulfilling your destinies...

As you can see the very "title" of this post is complicated, to say the least. As I've had to succumb over the past almost 3 weeks of cellulitis, strong antibiotics that totally messed my entire digestive tract up, to the addition of a "stomach bug" that is going around here locally, I find myself full again of guilt, of shame, of feeling as if I am letting my obligations down as an advocate, a "voice" for others, of my own writing, my blog, my Mom, and everything else that I've had to "put on hold" due to once again the "arrows" of dealing being chronically ill.

There is NO EASY part to being ill with some disease that is so often "invisible", that drags you down within a few moments totally catching you off guard. One moment I maybe feeling great and within hours I can be immersed in sickness, more medications, doctors visits, and so forth that drive me to the sofa, rather than here online, or out and about doing all of the other things that are SO crucial to me in life.

I cannot even begin to count the numerous times that I have the sinking feeling of "letting these diseases" rule and ruin my life. Being ill with something such as an autoimmune disease(s), you feel as if those totally reign over and above any and all plans, decisions, and destiny that you have for your life. They control the very essence of daily living. From whether I feel like going to do shopping and errands, take my Mom out, or to a doctor's appointment, washing my car, cleaning my home, taking care of ALL the things like my flowers, my lawn, having the energy to even re-pot a plant, or give the pups a bath... sometimes just giving "me" a shower can be overwhelming.

No one ever gave us 150% PROOF from the moment we take that first breath that life will always be filled and fulfilling... and that we will live and love without illness, with out difficulties in life, and sometimes the "hopes and dreams" we have had turn into a totally different way of being, that we ever expected. I have not done a "real investigation" but I would bet the number of relationships that "withstand" the all too often complicated life of living with someone chronically ill, that remain SIDE BY SIDE together... is quite low. I am most assured, as with cancer patients, sometimes a spouse, or dear friend, even a family member can reach a place they just can't cope with all of the complex nature of constant doctors, meds, surgeries, procedures, sudden illness... is can certainly be like the "elephant" in a 12 by 12 foot square room, quite OVERWHELMING...

I sometimes see the frustration even in my physicians faces, when I come in with something that is so complicated and complex, they themselves may not be sure what step to take next.

I am not one to "gripe", "Whine", complain, or even remotely think the "my medical issues" are "worse" than other people's... Pain and/or Chronic Illnesses mean different levels of frustration than others. I have had so many people tell me first of all that I am the "strongest" person (emotionally and mentally) they have ever seen... yet, honestly I don't feel that way. What I try to do, if at all possible, is to put "my feet" in that other persons shoes... if you can remotely imagine what someone else is going through, all too often, it makes your health issues seem small  - and I am NOT discounting that yes, I am have several very serious health problems, and have been through some extremely difficult and serious surgeries, procedures, medications and at times any and all of us, including my own physicians, maybe puzzled and perplexed about certain things that happen to me as far as on a medical level. "Who woulda thunk it"? that I would come down with "cellulitis".... and in fact, we "think" - my PCP and myself, that I had a case of shingles about 7 weeks ago or so... they had cleared up by the time I saw my doctor, but the small scars were still there, lined up almost in a row after row inside of my right knee, and when I explained what they had been like, he said that it more than likely had to be shingles... nothing else as far as some type of a rash would have came up in that kind of specific "pattern" as they did... and I have this uncanny "act" of I will be on a medication for one thing, and it so happens, I may come down with something totally unrelated, yet the medication I am on, will help that also. The "shingles" were that way... I had asked my PCP to be put on a daily dose of Valtrex. Since I started the journey with Lupus... I constantly am fighting fever blisters... not so much now in my mouth, but the corners of my mouth were almost a constant bright pinkish, with a bit of blistering it in. He would give me a "high dose" for 2 days, it would clear up, and then a few days later come back... well I had not even taken the "daily doses" but possibly a day, and all of a sudden here comes this "rash"... well the Valtrex would be exactly what he would have given me for the shingles... thus there you have it...

I am really down and out though since all of the illness, back stuff, Mom's back, and so forth, have kept me from writing here on my blog as much, have slowed once again my completing of my 3rd book to a snail's pace... and have just "thrown me" for a loop when it comes to ALL of the things I truly NEED to be doing... but as my Mom and I both said earlier this morning... it ALL happens for a REASON... so there must be at least a "billion" reasons that I get thrown off course, and my sails catch a wind into foreign waters, all too often.