Daily Life with Autoimmune Illnesses, RA,Lupus,Sjogren's, family, friends, doctors and all in between

It seems I've been almost "stuck" on this subject of living daily visits and such they come along with them.

I have found that at times I get so "technical" on my blog, I forget to just discuss daily life... my family, Mom, my grown kids, my Grand kids, and all of the medications, symptoms, side effects, and ongoing things that many of us face in our daily walk of life.

But, when you have any type of "chronic illness and/or pain" "nothing" is typical. Waking up in the morning and feeling "okay" aat times in itself a challenge. Then you face LOADS of medications that sometimes become an "evil necessary in order for you to have any type of quality of daily living.

Even though with all of the meds, keeping up with doctors visits,trying to take as good of care of yourself as possible... there are still errands, families, bills to pay, food to buy, and "we" as patients all too often find ourselves "overloaded" with some of the daily tasks that before we were chronically ill, would have been a breeze.

I have a "GREAT DEAL" I shall catch you up with tomorrow, Sunday morning. I HOPE that I feel well enough FINALLY that I can go back to church in the morning. Even something such as going to church can have to be 'put on hold" if you are ill, or are in too much pain... nothing is "ever" good to go, for the most part... almost every aspect of life is a challenge or gets challenged by the horrid evil illnesses.....

Here is a bit, from a post of mine on FB.. and I will continue tomorrow.... 

Lots going on and I honestly kind of just "crashed".... After everything from my own bout with whatever the hell this lump is on my upper left thigh, to not feeling well as far as my stomach, and so on... Mom and her lumbar spine issues, and we still have to go for the injections... I postponed them until next week. With her younger sister passing away with cancer, the funeral and all that we have had to do, and then neither of us feeling our best, I felt we needed a few days of down time. I've got to find a surgeon to remove this lump. It did not go away with the antibiotics, and after 3 rounds, my PCP wants it to come and so we can find out exactly what it is... infection, a cyst, or whatever it is... I also developed a couple of "sore spots" around my waistline. One right at my belly button, and another towards the left of my side at my waistline just a bit towards my back. So much has happened and I've been doing so many things around the house in between, it could be I just hit myself or strained myself and did not even realize it. I found one a couple of days ago, and then the other yesterday. We are still all reeling from my Aunt passing away... I am the kind of person who can be "strong" to get everyone else through things, and then after it is kind of settled, then I fall apart... and that is kind of what has happened to me over the past couple of days... I really did not want to do anything, see anyone, write, talk to anyone... all I've wanted to do it sit, be quiet and still, with my two pups, and watch movies... I just have needed this "down time" to gather my thoughts, and try to get a list of the "what needs ASAP" to be done in the next couple of months... Mom's lumbar stuff, my lump removed and that chest Xray - honestly, I feared taking my Orencia when this cellulitis showed up. Well, I was already having a new swelling and much more pain and stiffness in my hands and fingers... and it is much worse now. I am supposed to get on the Xeljanz, but I need the chest X-ray first, and there has just not been a "good time" for me to run and get it honestly. Besides if this is cellulitis, I don't want to "compromise" my immune system anymore, and we now have a "POSITIVE West Nile Virus in mosquito's here" actually found only about three blocks away from my home!!! So, that is another frightening situation. Anyway, I also have to get well so I can have my back surgery, which really needs to be done before the first of the year... and we will "tentatively" be having a "settlement" on the accident from 2014 hopefully in about 7 to 8 weeks, if things go okay... and then there are "other things" once that is over that must be done also... not giving details but some of you already know the score on that... so LOTS on my mind, heart, emotions, and physical realms also... I will"bounce" back... but I have to jump a few hurdles and hope not to trip and fall over them wink emoticon Hugs, Rhia

Becoming an "Active & Proactive Patient" Educating yourself & How it can surely help when you are managing chronic illnesses and/or pain... Lupus,Heart Disease,Cancer,FM,RA,Sjogrens and so many more...

In Other Words "When Patients Manage Doctors".... or at least try to...


This is something I have practiced actively all of my adult life, and especially after have several different "ongoing chronic illnesses", and now we see a different "specialist" it seems for each and every illness, unlike when you "family doctor" did it all, done your physicals,delivered babies, done surgeries etc. I recall with my 1st son being born, my regular Family MD delivered him. Shortly thereafter, he quit delivering babies, along with many of the other family doctors. Due to the rising cost for them to have insurance being doctors, they allowed those area's to be left up to the specialists. When you have for instance my situation, heart issues, so I need a cardiologist, Lupus, RA & several autoimmune illnesses, my Rheumatologist, and my PCP also works with me on the Lupus, I now have a specialist as far as my vision, due to the double vision, I have different surgeons, from a general surgeon, to more than one orthopedic surgeon, because many of them "specialize" in different joints, surgeries and so forth

Then many of us have a Neurologist, a Pain Management specialist, and ENT, a dermatologist, dentist, sometimes even a specialized dentist, and from time to time we may encounter other specialists, such as immunologists, psychologists, oral surgeons, and so many others, as time goes on. I found if I did not take an "active" approach to let each doctor know who the others are, what role they play in my health care, what meds I am on and from which physician, and I keep a list of all of my physicians and why I see them, along with lab work, any type of radiology reports, or scans etc... I have learned that all too often one doctor, may not even send the others the information such as labs, testing, imaging and so forth. So, being involved in your own health issues, taking charge of making sure everyone is put to speed on your other health issues... all of that is so critical for all of us, especially those who deal with chronic illnesses. Now the one problem with that, is SOME physicians, are not as "accepting" when a patient comes in with information, and so forth.

I have found that a couple of my physicians, even though in the end, what I had originally thought and told them was true about a particular health problem of mine, they much prefer an "uneducated patient"... I know that is hard to believe, most of mine are thrilled that I take an active role, and I "know" my own body, and I research medications, treatments and so forth. But, I have a couple of them, especially one in particular that gets almost "mad" when i come in and tell him what I think could be wrong. He has told me before that "I was not the doctor" etc... then he had to apologize a couple of times, because what I had said in the beginning was exactly right! So, he had had to "swallow his pride" and in his own way, make amends for calling me "stupid" basically. Yet my other doctors love it when I can walk in and possibly tell them what I fell maybe going on. It allow them less time in testing etc for things that may NOT be wrong, and to concentrate on what is so we can get right on to "fix" the problem.... Times have dramatically changed in the medical world even over the past 10 years or so... and you truly need to be an "educated patient" whether your physician likes it or not... YOUR health and well-being should be #1 for you!

 

Here is an article from the Wall Street Journal

 

"When Patients Manage Doctors"

http://www.wsj.com/articles/when-patients-manage-doctors-1439228028

Sjogren's and Just How We Lack Professionals in the Medical Field that truly Understand all of what Sjogren's can do....

Such an important thing - there is certainly NOT enough education, even with the medical professionals when it comes to Sjogren's. I in fact even after trying everything in my power to fight the autoimmune illness, lost ALL of my teeth to Sjogren's. It was a very hard ordeal to go through and even today, it remains something I feel "odd" about,although my dentures are very pretty. But, each and every one of my teeth were "eaten" from the inside out, and no signs of Sjogrens appeared to be causing issues, until suddenly I had 3 or 4 teeth completely break off at the gum line. I went in to see my dentist, who actually sent me to another dentist due to my own having also issues with horrible arthritis that is not allowing him to do nearly as much dental work. He had been a dentist here locally for gosh 30 plus I am sure... anyway, I was given a "full round" scan... and inside just about every tooth, you could see that basically all I had was a "shell" left... thus after over a year of pulling them all, and allowing all of that to heal, along with a couple of dry sockets, then one of the tiny cartilage bones between my maxillary sinus passage was  pulled and thus a tiny hole that they call a "communication" happened. This I had to have that "repaired" two times, then allow it to completely heal over before I had the final teeth removed, and the dentures put in place. After that, I had to wait another almost 3 months for the bone and all to heal. Then I had the "mini implants" put on the bottom dentures to hold them in place... besides all of the time... the COST is ASTRONOMICAL!!! And even though it was caused by a "medical illness" I could never get a dime out of my insurance for any of it... just insanity... and at the very LEAST that type of thing is in the ballpark range of $12,000.00 and usually much more depending on which dentist and what your complications and so forth could be...

Here is an article that gives some answers to questions about Sjogren's...

http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/default.asp?WT.mc_id=social_niamstwitter

Corticosteroids and Severe Asthma.. Clinical Trial by Cure click

http://curec.lk/1MAcSXQ

New Study for People with Severe Asthma and on Oral Corticosteroids

One of the few treatment options for severe asthma patients who are uncontrolled despite standard treatment is the addition of oral corticosteroids. However, regular intake of these oral corticosteroids can decrease the quality of life for such patients. The purpose of this research study is to see whether the investigational drug can reduce the use of oral corticosteroids in patients with severe asthma.
More about the study:

• The study drug is Benralizumab
• There will be 210 participants in this trial

If you are interested, please find the full study details and eligibility criteria listed here.
Eligibility Criteria:
Participants must:

• be between 18 – 75 years old
• have asthma diagnosed by a doctor at least a year ago
• have been treated with inhaled corticosteroids + LABA for minimum 12 months since today + oral corticosteroids for at least 6 months since today
• have had at least 1 exacerbation (worsening of your asthma that requires medical intervention, emergency room visit, an inpatient hospitalization or a change in medications) in the past year

Participants must not:

• have severe lung disease other than asthma
• have HIV, Hepatitis B or C

Please complete the online questionnaire to check if you’re eligible for the trial.
If you’re not familiar with clinical trials, here are some FAQs:

What are clinical trials?

Clinical trials are research studies to determine whether investigational drugs or treatments are safe and effective for humans. All new investigational medications and devices must undergo several clinical trials, often involving thousands of people.

Why participate in a clinical trial?

You will have access to new investigational treatments that would be available to the general public only upon approval. You will also receive study-related medical care and attention from clinical trial staff at research facilities. Clinical trials offer hope for many people and an opportunity to help researchers find better treatments for others in the future.
Learn why I’m talking about Clinical Trials

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..