Happy 30th Anniversary????

Happy(???) 30^th Anniversary!

On 21 September 1984, after spending a  week in the hospital at Riley Hospital for Children in Indianapolis, IN,  we heard the words that would forever change my life. I had been in the hospital all week. But unlike the rooms where most hospital stays occur, this room was more like an efficiency room in a hotel, a private room with a small refrigerator (I think), of course a private restroom. There was less a feeling of being hospitalized and more a feeling of just staying there for tests because it was more convenient. I vaguely remember being seen by quite a few doctors and nurses as well as having lab-work, X-rays, eye tests, and other exams. We had went into the situation with a fairly good idea of the outcome. The problems I'd been having for awhile were getting less scary and more of a hassle than a major worry. i don't know if I got more used to the pain and so woke up less in enough pain to scream as had happened at first. Or if I just got used to it enough that it no longer took me by such surprise and was a shock to me. In the beginning, Mom, like most parents would have, assumed I was having nightmares. And in a way, she was right, I was having a major nightmare, but not in the way most parents consider the use of the word nightmare. I was so wracked with leg pain that i was unable to move my legs. The stiffness and pain was unexplainable really beyond the tears and saying I hurt. So, like most parents, she took me to the doctor. He was one of those old country docs who practiced in a tiny rural town in the early 1980s. I later heard that he did not have a good reputation amongst older family members, which I don't believe Mom was aware of. We left there with no clues as to what was going on. All that doctor would tell her was that I had "growing pains". But something about that just didn't sit right with Mom. I wonder if her own pain led her to see that my pain was very real and went beyond what is typically described as "growing pains". In addition to waking up at night, screaming and complaining about leg pain as well as being unable to move them, I also had a problem with my right ring finger that we later found out was called a "trigger finger" as well as a ganglion cyst on my left hand.  Over the last 30 years my hands have changed to what is now noticeable damage and misshapen fingers but not to the extent in the drawing below. I do have each of the items mentioned: boutonnière deformity in my thumbs, ulnar deviation of my hands as well as swan-necking of the first joint of some of my fingers and hypertension of the middle joints on some fingers. The  drawing is much worse than my hands are thankfully.

Needless to say, she took me to a different doctor in Danville, IN. This doctor, after examining me, declared that he was not about to treat me and that I needed to be seen by a specialist at Riley Hosp. for Children in Indianapolis. His concern was that I had either a muscular dystrophy or a form of juvenile arthritis. The next I remember was the week-long stay at Riley, which culminated in the official diagnosis: seronegative poly-articular juvenile rheumatoid arthritis, quite a mouthful for a 7 yr old! The seronegative part simply meant that there were none of the markers of JRA in my lab work, a not uncommon occurrence. In adults, at the time, at least 20%

of patients with RA were seronegative. My erythrocyte sedimentation rate, or SED rate for short (aka ESR) was elevated but it can be elevated with any kind of inflammation in the body, including infections. I had a lot of problems with upper respiratory and ear infections so having an elevated ESR was not too out of the ordinary. But I was never positive for Rheumatoid Factor (RF) at any point in my life. According to Lab Tests Online, RF is: "Rheumatoid factor (RF) is an autoantibody, an immunoglobulin M (IgM) protein that is produced by the body's immune system. Autoantibodies attack a person's own tissues, mistakenly identifying the tissue as "foreign." While the biologic role of RF is not well understood, its presence is useful as an indicator of inflammatory and autoimmune activity." I have NEVER tested positive for ESR in the past 30 years. There are more tests now that they can use to lead to diagnosing RA or distinguishing between the various types of arthritis but the last I recalled, i am either completely negative for those tests that the results are either negative or positive, or for those that have a cut off of the normal levels of what is being tested for in the blood, I am under that normal level. I have been tested for the Sjogren's antibodies, anti-CCP, CRP etc. and even now everything is either in normal ranges for that particular test or is negative. My labs still show that I am sero-negative 30 years later. Again, my SED rate is often elevated but that could be infection related as much as anything else. 

I recall the doctor thinking when we first got there that I had some form of juvenile arthritis most likely.  As the week wore on and tests were done and results were in,  I think he was more and more sure of his original thought. I remember that Mom was certain that since it was my body and my life affected by the diagnosis, that she wanted me to be told everything. I had to know what I was dealing. I don't know if my doctor, who at the time was Dr. Murray Passo, agreed with her that it was the best choice or not, but, he went along with it.  And for me, it worked. By the time I was 10, I would go to the reference section of the library and read medical books for fun. Not that I understood the greater portion of it but I understood enough. I was used as a teaching student. I was at the clinic enough that it made sense to have me as one of the patients that student doctors visited on their trips through the clinic. After awhile, because I tended to pay attention to what the doctor said, I began to be able to answer his questions if the students would or could not. It was not any great feat of intelligence I can be sure of. It was quite simply repetition. No matter a child's age, if they hear something repeated over and over, especially about themselves, they are likely to remember it. I was 10 when I asked about how RA shortened people's lives, which I think was surprising to many people. I know at one point, Dr Passo had told me the worst case scenario —that by the time I was 16, I'd not walk again, I'd be on medications for the rest of my life, I'd not work part time even let alone full-time and I'd not marry and have a family. I was determined to prove them wrong. At 10, was my hand surgery. Because of the concern of giving a child pain medications for more than a few days post-op, I did not have adequate pain control when it came time to begin PT. It was then I began considering PT to be patient torture vs physical therapy. But, I also had a hard time explaining how I hurt beyond say "I hurt," which admittedly makes it hard on a doctor to know if the child truly is experiencing pain and is used to it enough that the typical reactions to pain are not there (I can be in a lot of pain now and no one but those who know me well can tell IF I am not wanting it to show; after this long of my being filled with some amount of pain everyday for as long as I can remember, you tend to learn to mask it) OR if there is something else bothering them.  I know many of my doctors in the past had a hard time believing I was really in the pain I said I was in. Another reason I think I have such difficulty in explaining how I hurt id the fact that I truly do not remember what it is like to be pain free. I know at some point in my childhood I was pain free but it was so long ago that I do no remember it. It's as if between the time that has passed and all that my body has experienced, that those pain-free days have been pushed out of my memory.

 I do know that Dr Passo was a great doctor. Looking back, it might be wondered why I was never put on any of the disease modifying anti-rheumatic drugs available at the time. Or why I'd never been given ______. The biggest reason is simply that I was not considered to be a severe case of JRA.  This was during a time when ibuprofen and naproxen were beginning to be studied as treatments for kids with JRA. There was hope that they would work well enough that the stronger drugs with the worst side effects could be avoided. This was before the practice of "early aggressive treatment" was given the emphasis that it is given today. We know now how important it is to slow the progress of JRA in children and RA in adults as early as possible. We know now that it is in the first 10 years that the most damage occurs in those patients who are disabled by RA or JRA. As Dr Passo explained it to me, the difference between the three forms of JRA, pauci-articular, poly-articular and systemic are: those with pauci-articular JRA tend to have five joints or less affected; those with more than five joints affected have poly-articular JRA and those with salmon colored rashes, daily fevers, etc in addition to the five or more joints being affected are those with systemic JRA. As it was explained to me, polyarticular JRA is much like adult RA while systemic JRA is also known as Still's disease, which generally occurs in children but can wait until adulthood to begin, in which case it is known as "adult onset Still's disease" (AOSD). That said, poly-articular JRA, (which I will hereafter refer to simply as JRA and the other forms by their longer names) as well as adult RA both have components of the disease that are systemic. The low grade fevers common to many patients with both JRA and RA, especially during periods of active inflammation is common as is fatigue, feeling flu-like, etc. For many patients of either, slow healing cut and sores are common as is increased bruising. The bruising can be related to certain medications, primarily prednisone or other glucocorticosteroids but in some people can be part of RA/JRA. I was not on any glucocorticosteroids of ANY kind until after I was 2 and had my son, yet I bruised VERY easy as a pre-teen and teen. Even into adulthood, I bruised fairly easy. At one point in my life, I was seeing a physical therapist who, during the course of the treatment ordered by my doctor was leaving rather large bruises on me. They were not overly painful, but the PT was concerned at first as to what my husband would say when he saw them. I assured him that my hubby would know about them before seeing them so that he was not upset over them. He knows my easy bruising nature anyway and so is unlikely to become angry before giving me a chance to explain. I can understand the PT's concern  as well since I was bruised from neck to the back of my thighs, because he was doing myofascial release massage therapy, which released the knots formed by muscular waste chemicals that would build up in the muscles. It was hard work in a way to have that type of massage therapy. The waste that was broken up and released into the system caused nausea and sleepiness on the days I had therapy. So while it felt good in a

way to have those knots broken up, the sleepiness, fatigue and nausea were too much. 



After my first pediatric rheumatologist transferred to a hospital in Cincinnati, OH, I got a new

doctor that I don't recall much about. I don't recall caring much for her but then again, I am not sure if that is the case, or if she just doesn't compare one bit to Dr Passo.  I do remember him a being a great doctor. And he is the one who started to encourage me to learn all that I could about my JRA. He taught me quite a bit as well. And of all the doctors I've met over the last 30 years, and there have been quite a few, he's been one of those I have had the best memories of. I still to this day, even though it's been probably 20 years since I've seen him, would trust him implicitly. Although, in many ways, he made it hard for me to find other doctors to live up to the standards he set. I have been blessed to have a few who do.  And for those I am thankful. One of my biggest ways of knowing if a doctor will work out is how much they value a patient's knowledge. If they have a problem with patients who are well-informed about their diagnosis, then they will not work for me. I will not be treated as if I don't know my own body just to make a doctor like me better. And the doctors, as well as other health-care providers that I see currently all seem to value that in a patient. i am blessed with a great health-care team right now. I am thankful for that to be honest.  Because while I know my own body, and what is and is not normal for me, that's where my knowledge stops. Yes, I know quite a bit about rheumatic diseases but not as much as a doctor who specializes in them. But the best thing is that I do know what is and isn't normal for me and after 30yrs can usually recognize the abnormal. I say usually because as was proven in 2008, there are times a med can mask what would be normal symptoms of a problem that I was well-aware of what the symptoms felt like. Yet, when you have no symptoms of a problem, you can't exactly know it is there!  Thankfully, the medications that caused that issue are no longer ones I take or are ones I still take but at a MUCH lower dose.

Will I ever live a "normal" life again? Of course not. I have way too much joint damage as well as too much deformity etc to have what would be close to a "normal" life. But, while I know that JRA may have taken its toll on me, and it may have won some of the battles, it has NOT won the war. It can only do that if I let it knock me down mentally as well as physically.  And I will NOT let that happen if I can help it. I may not be able to do as much as I was able to do physically before the "long vacation" but it hasn't totally won yet. For that I owe quite a lot to the influence of many people over the last 30 years. But I would not have had as many tools to fight with had it  not been for Dr Passo as my diagnosing doctor. Don't get me wrong, Mom insisting i be told the truth had a big influence on me as did the influence of a number of family members.

The Zanes & Lewis Wetzel: The Second Siege of Fort Henry (WV), Zane Grey's Border Trilogy

You know how when you read a good book and find that you put yourself in the role of one of the main characters? Well on occasion that can be dangerous!!!

Helen Sheppard & Jonathan Zane Frontispiece of The Last Trail

"He was clad from head to foot in smooth, soft buckskin which fitted well his powerful frame. Beaded moccasins, leggings bound high above the knees, hunting coat laced and fringed, all had the neat tidy appearance due to good care. He wore no weapons. His hair fell in a raven mass over his shoulders. His profile was regular, with a long, straight nose, strong chin, and eyes black as night. They were now fixed intently on the valley. The whole face gave an impression of serenity, of calmness."

"Helen was wondering if the sad, almost stern, tranquility of that face ever changed, when the baby cooed and held out its chubby little hands. Jonathan's smile, which came quickly, accompanied by a warm light in the eyes, relieved Helen of an unaccountable repugnance she had begun to feel toward the borderman. That smile, brief as a flash, showed his gentle kindness and told that he was not a creature who had set himself apart from human life and love."  (The Last Trail, Zane Grey, pg. 31)

Jonathan Zane & Lewis Wetzel illustration from The Last Trail

Sounds like a good looking man, well-respected and valued from other descriptions. Not one to be messed with as he could be a tough enemy to have. Saved many a family from trouble on the border between WV and OH. He also had his bad side (depending on which side you view it from.) He was judge, jury and executioner many times when one caused trouble for the towns. Unlike some (Lew Wetzel for one) he was not wholly of the opinion that "the only good Indian was a dead one", but those who had fallen under the spell of those "white redskins" like Girty, Eliot, McKee, etc. he had no use for. Why? Because unlike the groups who had become peaceful to the settlers who treated them fairly, these men were vindictive, stole for the sake of it, were brutal to the women they abducted, etc. I do not feel Native Americans were treated fairly by whites. That's a given. But, just as not all whites treated the Native Americans unfairly, not all Native Americans were horrible. The greater numbers were only reacting to the wrongs they had suffered. So many times we see history as black and white and yet there are all kinds of grey areas. For the settlers who had paid for their lands and treated the Native Americans fairly, they still had to endure the attacks of those who were not treated fairly by other settlers. But they relied on men like Wetzel and the man I described above. 

The weird part comes in reading a book where you do find yourself imagining you taking the place of a main character. Harmless enjoyment of the story right? Except when you realize the book is about a person that if not for them, you might not exist! As in the case of my reading of Zane Grey's fictional, yet based on history, stories set on the border of WV/OH, the Border Trilogy. Betty Zane, The Spirit of the Border and The Last Trail.  (All of the links are to free versions of the books on Google Play. Project Gutenberg also has all three books for free.) All three have as main characters men like Col. Ebenezer Zane (aka Eb) and his wife Bess (a sister of the famous Maj. Samuel McColloch of McColloch's Leap renown), a stronger woman than I could ever be; his brothers: Isaac, kidnapped at age 9 by members of the Delaware tribe along with brothers Andrew, Silas (killed by Indians along the Scioto River), and Jonathan; as well as people such as their only sister Betty, and borderman Lewis Wetzel. Andrew was killed trying to escape, Silas and Jonathan were ransomed. But not Isaac. No, he was adopted into the tribe and called "White Eagle" and was the son-in-law of Chief Tarhé (also known as "The Crane" or "Standing Crane"), after marrying Tarhé's daughter, Myeerah, or "White Crane". Isaac was a translator, and helped with many treaties between the US government and the Delawares. Jonathan became a borderman and Silas was in charge of the garrison at Ft. Henry, which was located in present-day Wheeling, WV. Betty Zane, youngest sibling and only sister of the Zane brothers is considered the "Heroine of Ft. Henry" during the attack of the fort because on Sept. 11, 1782 Betty made a run from the fort to her brother's home to get powder. Why send a woman and especially a young one such as Betty? Well, first, few in the area were faster at running than she was. She was typically only bested by her brothers and Lew Wetzel. Second, they were out of powder, depending on the source you believe, her brothers had "carelessly" according to the Wiki article left the powder at the home of Ebenezer. Now, he had stayed in his home in order to protect it along with his slave Old Sam, Jonathan Zane and Martin Wetzel, (according to Martin Wetzel's Find A Grave, their father, John Wetzel/Whetzel was also present at the second siege) Lewis Wetzel's brother, as Silas was commander of the fort at the time. (Although many sources state Ebenezer was the fort's commander, see "Story of Fort Henry" source 12 for comment re:Silas being in charge of fort .)

According to "The Story Fort Henry"¹, "In September, 1782, occurred the last siege of Fort Henry, regarded by some as the last battle of the Revolution. A force of forty irregular British soldiers and 238 Indians, under Captain Bradt [possibly Brady?] , made the attack."  The total number of the fort's defenders was around 40 and that included the garrison, the local men and young boys who could handle a rifle as well as women who could load the rifles, cool the overheated rifle barrels, etc for the men. The Zane men had just days before seen barrels of powder in the store room of the fort. Yet when defenders went to retrieve them during the siege, they were gone. So, the logical thing was to send someone to Eb's cabin just outside the fort, which they knew had a quantity of powder. But sending even a young boy would have been sending that boy to his death. He'd be mowed down by the bullets of the British and their Native American allies. So Betty volunteered. The women had been helping defend the fort by making bullets, reloading guns, nursing injuries, cooling the gun barrels and she heard her brother Silas, Lew, and some of the other men discussing the need for powder. Legend has it that she volunteered knowing she might not make it or might get shot. Her brother Silas was not wanting to send his only sister to what he feared would be her death. But, she prevailed & Lewis Wetzel had faith in her ability as well. The story goes that once they saw her, the Indians jeered "Squaw!" and let her alone as she made her dash to the cabin. But on the return trip, realizing that she was taking supplies to the fort, they began to shoot at her. She made it back to the fort, with her skirts having been shot through at least once and having been grazed by a bullet. 

Illustration of Betty Zane's heroic run for gunpowder
during the attack on Ft. Henry on 11 Sept. 1782

Heroism of Miss Betty Zane at Ft. Henry 11 Sept. 1782

Why is it odd though that I am imagining the man I described as being one darn fascinating,  good-looking, appealing, downright sexy man? And why do I find the history of him, his family and friends like Wetzel so fascinating?  Because he is one whom, without him, I'd not be here. He was my 4th great-grandfather, Jonathan Zane. So, that is why it can be dangerous to imagine yourself in the story!!! It's a bit disconcerting to find yourself imagining that you are the heroine who finds herself growing to love Jonathan when he's an ancestor of yours. With the reputation both Jack and Wetzel had, you'd think I'd find them repulsive or to have hands too stained by blood to find them fascinating. But, it is precisely their reputations that draw my fascination.

Jonathan Zane

From HISTORY OF THE PAN-HANDLE, West Virginia, 1879, by J. H. Newton, G. G. Nichols, and A. G. Sprankle. Pages 131-134. 

 JONATHAN ZANE was, also, born in Berkeley county, Virginia. He accompanied his brother, Ebenezer Zane, to the West in 1769, when they explored the surrounding country, and located the town of Wheeling. He also made explorations in the summer and fall of 1771, in company with Silas Zane, up and down the Ohio - soon becoming familiar not only with the regions east of that river, but also the wilderness beyond. He was perhaps, the most experienced hunter of his day, in the frontier country.

It would have been difficult to find a man of greater energy of character - of more determined resolution, or restless activity. He rendered efficient service to the settlers about Wheeling, in the capacity of a spy, and a guide to direct the forces through the wilderness in several of the important campaigns from the commencement of the Dunmore war until the close of the Revolution. He was a guide in the Wakatomica campaign of 1774. He also accompanied General Brodhead in the same capacity, in the expedition up the Allegheny against the Munsies and Senecas in 1779, in which he was wounded.* (Anthony Dunlevy's Declaration for a Pension, October 3d, 1832.) In the memorable campaign of Crawford against Sandusky, Zane was again one of the guides to direct the army through the wilderness, and was a confidential advisor of the commander, with whom his opinions had great weight. It is plain, too, that if his advice had been promptly acted upon, the terrible calamity that befell the unfortunate expedition would have been averted. When the army had reached the Sandusky plains and found a deserted town, Zane advised an immediate return, and Col. Crawford knowing him to be exceedingly well versed in Indian strategy was strongly impressed with his views and felt personally inclined to adopt them. Zane urged that the absence of any sign of the Indians on the plains was a certain indication that they were concentrating at some point not far distant for determined resistance. He also reasoned that a further march into their country was only giving the savages time to gather reinforcements at their place of rendezvous, and that they would be able to concentrate against the Americans an overwhelming force. But when the council of officers was held Zane's warning was not duly heeded-the officers and men did not want to return without firing a gun - the army continued its march until the Indians were met - and the lamentable disaster followed.

Jonathan Zane was remarkable for earnestness of purpose, an energy and inflexibility of will which often manifested itself in a way truly astonishing. Few men shared more of the confidence or respect of his fellow men than Jonathan.

He was one of the best marksmen upon the border. He prided himself particularly upon his skill in shooting. He was once returning home from hunting his horses, when, passing through some high weeds near the bank of the river at a spot within the present limits of the City of Wheeling, not far from his house, he saw five Indians jump into the stream and swim for the island in the Ohio, opposite the place. Having his rifle with him, he rapidly took aim at one of the savages -fired, and the Indian sunk. Loading and firing in quick succession, three more were killed before reaching the opposite bank. The fifth and last one, seeing the fate of his companions, concealed himself behind a "sawyer," near the shore of the island, hoping thus to escape the deadly aim of the white man. After several ineffectual attempts to dislodge him, the effort was about to be abandoned, when Zane noticed a small portion of his body protruding below the log. Drawing a fine sight on his rifle, it was discharged, and the fifth savage floated down the river. He piloted expeditions against the Indians; in the one under Colonel Brodhead, up the Allegheny, in 1779, he was severely wounded. He was one the pilots in Crawford's expedition, and, it is said, strongly admonished the unfortunate commander against proceeding; as the enemy were very numerous, and would certainly defeat him. He died in Wheeling, at his own residence a short distance above the present site of the First Ward Public School. He left large landed possessions, most of which were shared by his children.

The children were Catharine, Eliza, Cynthia, Sally, Hannah, Nancy, Isaac, Asa and Benjamin.

 

Jonathan "Jack" Zane

My great-grandparents were Amos and Cynthia Charlotte (Zane) Nichols. She was the daughter of Isaac (not the one previously mentioned, but his nephew) Zane and wife Mary French Zane. They died of what appears to be cholera when she was about 10 years old. Her grandfather Jonathan and uncle Asa were given custody of the children of Isaac and Mary. Cynthia was raised by Jonathan. She married in 1823, the same year her grandfather died and they moved from southeastern Ohio to central Illinois in the late 1820s or early 1830s. She and Amos as well as their son John, a Civil War veteran, are buried less than 4 miles as the crow flies from my Dad's house where we lived when I was born and where I spent a number of weeks during the summer. Never once did I hear family stories such as this. Or of my great-grandfather Benjamin Nichols, a Civil War veteran and one who thankfully missed being part of Custer's Last Stand thanks to drawing guard duty over some of the equipment Custer left behind. After that near miss, he left the army. The family story, which I learned from my Aunt Betty the week I spent with my family in April 2001 when my Dad died, was that Benjamin, partially deaf from having been too near cannons during the Civil War, also had a fondness for drink. He walked from his farm outside of Waynesville (in northern DeWitt Co.) to Heyworth (in southern McLean Co.) to the bar in Feb. 1917. The desire for drink and the companionship of friends must have been strong to induce him to walk over 4 miles from his farm into town in the middle of February!  The family story goes on that at some point he decided to return home. At some point, his diminished hearing and the amount of alcohol consumed caused him to pass out (or possibly fatigue caused him to decide to go to sleep). He would likely have been alright except for the fact that he passed out on the railroad tracks. In due time, a train came along. His diminished hearing in combination with the alcohol, caused him to be unable to hear the warning whistle of the train and so he was killed by the train. Whether a true story or not, I do not know. What I do know is that he died on 14 Feb. 1917, and was buried in Rock Creek Cemetery. I have been unable to find any record of such an accident around that time. I would think an accident such as that would make local newspapers. I hope to find out the truth at some point.

Now, Wetzel, with all that can be said against him, which is plenty, was also fascinating. Long black hair that when combed out came down to below his knees. Hands too blood-stained to allow him to give reign to falling in love with a woman, although, reportedly there was one he possibly loved but knew he couldn't be worthy of. This was a man who could reload his gun at a dead run. Fleet of foot, sharp eyed, keen eared, quiet. Another person cast as the hero yet one with plenty of faults. And possibly distantly related to another of my 4th great-grandfathers.

Lewis "Deathwind" 'Le Vent de la Mort" "Atelang" "The Wind of Death" Wetzel

Even knowing there are many fictionalized stories, the ones that are known to be true of the Zane brothers and Lew Wetzel are fascinating. And the fictionalized stories are wonderful, yet they have their faults as well. But, as the author says in his introduction to Betty Zane, "Few of us are so unfortunate that we cannot look backward on kith or kin and thrill with love and reverence as we dream of an act of heroism or martyrdom which rings down the annals of time like the melody of the huntsman's horn....". In the introduction to The Spirit of the Border he writes, "The author does not intend to apologize for what many readers may call the "brutality" of the story ; but rather to explain that its wild spirit is true to the life of the Western border as it was known only a little more than one hundred years ago." and  "It is to a better understanding of those days that the author has labored to draw from his ancestor's notes a new and striking portrayal of the frontier; one which shall paint the pioneer's fever of freedom, that powerful impulse which lured so many to unmarked graves; one which shall show his work, his love, the effect of the causes which rendered his life so hard, and surely one which does not forget the wronged Indian."

Last but not least, I cannot wait to read the Spirit of the Border in comic format! I found a number of Zane Grey books that were released in comic form on the Internet Archive. But of the Ohio trilogy, only Spirit was done in comic form.

Zane Grey's Spirit of the Border comic book

Last but not least, a description of each book in the Border Trilogy:

 Betty Zane (1903)

From Fantastic Fiction: "With an Indian attack looming on the horizon, the men, women, and children at Fort Henry wait for the conflagration and rely on the courage of Betty Zane."

From Google Books:(free to read/download) "During the American Revolution, Betty Zane helps her brothers save their frontier settlement from British troops and Indians."

Betty Zane can be read/downloaded for free from Internet Archive, & Project Gutenberg)

The Spirit of the Border(1905)

From Fantastic Fiction: "Wetzel, the Avenger, devotes his life to the defense of the settlers against the renegades who terrorize the frontier."

From Internet Archive (audio recording of book): "This is an early novel by the phenomenally successful author of frontier, western and sports stories. It deals with historical characters and incidents in the Ohio Valley in the late 18th century, especially with the foundation of Gnaddenhutten, a missionary village intended to bring Christianity to the Indians of Ohio, despite the violent opposition of both Indians and white renegades. This turbulent adventure romance features the heroics of a semi-legendary frontiersman, Lewis Wetzel, who attempts to protect the settlers from hostile Native Americans and the vicious white outlaws the Girty brothers."

The Spirit of the Border can be read/downloaded for free from Google Books as well as Internet Archive, & Project Gutenberg.

The Last Trail (1900)

From Fantastic Fiction: "Born to the lonely wilderness trail, famed borderman Jonathan Zane roams the rugged Ohio frontier, fighting to protect his homestead from attack. Braving certain death against a gang of outlaws and savage Shawnees, Zane struggles to save the life of the woman he loves."

From the Internet Archive (audio recording of book): "Return with us to those thrilling days of yesteryear as Mike Vendetti narrates this early Zane Grey novel of hardy pioneers taming the wild west. Yes, despite the difficult times, romance flourishes and the bad guys are eliminated almost single handedly as our heroes Jonathan Zane and his sidekick Lew “Deathwind” Wetzel fight their way through mud, blood, gore, savage Indians, and despicable outlaws, to make the land safe for pioneer families as they settle the wild west."

The Last Trail can be read/downloaded for free from Google Books as well as Internet Archive, & Project Gutenberg.
_________________

1. Brooks, A.B. "The Story of Fort Henry". West Virginia History, A  publication of: West Virginia Archives and History. Volume I, Number 2 (January 1940), pp. 110-118

Wordless Wednesday

Wordless Wednesday

It’s often hard to like pictures of ourselves – post your favorite picture of yourself. Today’s post was recommended by Christina of www.stickwithitsugar.com

Left to Right: my husband, Garrin Porter; my "adopted" nephews, Ramsay Sadler  & John Sadler (on Ramsay's lap); my Mom, Norma Nichols; my son, Sebastian Porter; my bestest friend & "adopted" sister, Mary Sadler (standing); my "adopted" niece, Tai Sadler (standing behind wheelchair); me   — Taken March 2011 Conway Manor, Conway, SC

First Steps in 3 years. With my PT, Jim. At Conway Manor

Joey Dogg's Burgers

Location: 1818C Highway 17 N Surfside Beach, SC 29575

Phone: (843) 238-5639

Date & time of visit: 06/11/20012 approx. 5pm

 

Joey Dogg's Cheeseburger

Joey Dogg's Burgers' Cheeseburger is 2 patties that are ¼ lb each. This one has bacon, grilled onion, ketchup, and mayo. Their Jr burgers are a single ¼ lb patty so if you're not hungry order a Jr burger. This tasted GREAT!!! Dripping with grease is not good, but neither so so dry there's no juices or grease left. This burger was nice and juicy. Some grease is ok, it adds an extra flavor. So it wasn't too greasy. It had a little. If there's too much I blot it off with a napkin and didn't need to here. The grilled flavor was good. A bit of smokiness gave it that freshly grilled taste. The burger was cooked so that it was not well done. I'd probably call it more medium-well. The bacon was nice and crisp, not fatty, limp and tough to eat. The buns were so soft. There were generous amounts of ketchup and mayo, but not so much it dripped off the burger. The grilled onions were grilled to a nice sweet softness, not at all mushy as onions sometimes can be when grilled too long. The fries were very good despite my initial thought that they were browned too much to be tasty. The onion rings were very tasty. The batter didn't fall apart as some onion rings do. The onions were sweet yet still had a bit of a bit to them.  Mini said the hot dogs were great. He even liked the onion rings! He's not that fond of cooked onions but will eat onion rings at times and he liked these. I think the batter was something he said was REALLY good and he'd like to have the batter without the onion even. We told him batter needed to cling to something so it can be fried.

Joey Dogg's Adult Dog Food Bowl

Yup that IS a dog food bowl containing a cheeseburger (see prev pic), onion rings and french fries. Their prices are not bad at all. We got 2 adult dog food bowls, both containing a cheeseburger w/2 patties that are ¼lb each with onion rings and french fries; 4 hot dogs; 2 sweet teas and a glass of water for somewhere between $20-25. We had a coupon for BOGO hot dogs. Mini was gonna order their "ding-a-ling" which is a foot long hot dog, but the waitress asked if he thought he could eat 4 hot dogs. He said yeah and she was shocked, then he added to her shock by saying he's eaten more than that a number of times and that she should see him eat pizza! So she said that it would be better to order that way. She was VERY friendly, provided great service, was there when we needed her but wasn't suffocating. There was a gentleman who came over to ask where we are from and we mentioned being locals and he said he is too. IDK if that was an employee, the owner or a customer. 

I couldn't eat ALL of my meal. I took half of my burger home with me. Mini helped with some of my fries and onion rings. And between BC and I we had enough rings left over for a snack for him later. My burger was great when we got home. I thought of heating it up but decided to just eat it and it tasted great still. I have a feeling we will be going back! 

I am also proud of Mini for something that happened. There was a little boy there, probably 5 at most. His mother worked there I guess. But he was hanging around and when Mini went to check out the video games and the claw machine, he started talking to Mini. I gave Mini some money to get quarters so he could play between hot dogs. Kept him from eating too fast. And of course that drew the little boy over. Mini was nice to him, patient and then when he came back to eat, the little boy was talking to him. Mini apparently wanted to be nice but he also wanted to eat uninterrupted. So he took a quarter and asked the little boy if he'd like to play a game while he waited on Mini to finish eating. That made the little boy so happy. I know a lot of adults would have brushed the little boy off. And even a lot of kids Mini's age might have brushed the boy off. But, Mini came up with a way of getting to eat without having to answer a bunch of questions while also making the little boy happy. I was definitely proud of him for that. After he finished eating, Mini went back over and they played until we were done. 


Joey Dogg's also has a number of other sandwiches, breakfast sandwiches, and after 5 on certain nights they have an Italian menu available. They also have seafood meals I believe, salads and some desserts. Definitely give them a try if you're in the Myrtle Beach, SC area! 


Here are some places that have reviews of Joey Dogg's Burgers: 
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Urban Spoon Review of Joey Dogg's

Family Road Trippin'!

It's been a LONG day. But fun! I will start with something Gar was telling us Fri night. He had a run (or two) to Charleston Fri. Well of course on those, he takes the client to their appt and then has to wait on them, even if they'll be most of the day. So he usually finds a place to hang out in the van since he has a DVD player in the van, internet on his phone. He was hungry Fri so he was gonna run to Walmart I guess. But his GPS lied to him and told him to turn left and that's where Walmart was. UNH HUH! Nopers, there was a Marshall's, something else and a few little small stores. A couple restaurants. A Chinese place, a sushi place, there was a Chik-Fil-A right there (I had a bad incident at that Chik-Fil-A but not b/c of their food-had a dr appt and since I'd not seen them thought my slightly queasy stomach was nerves-nope it was stomach flu and I was having to make Gar pull over every 10 min for me to be ill) and a pizza place called Baroni's. He had a sandwich called the S.P.O. for lunch yesterday. The description of it is:

Whole Link Italian Sausage with Grilled Onions and Green Peppers. Straight from the Streets of New York

He RAVED about it, posted a pic on his FB, liked their page on FB and even commented and got a reply from the owner. Well I'd had a fleeting thought yesterday that maybe today we could take a road trip but I never said anything. We all slept late today. Or at least I know Bastian and I did. I assume Gar did. It was noonish when I woke up. I could NOT get in my bed last night because someone didn't fall asleep in a way that allowed me to get in bed or even have my pillow. Or rather the pillow I stole from him, no he brought it to me when they set my bed up and said I could use it. I am not a pillow thief I guess. Bastian was SO cute, he fell asleep READING. Albeit a book on Assassin's Creed but hey he's reading himself to sleep so I don't mind it being about a video game. He went to play a game with Gar this morning before I woke a bit after noon. I'd woke up at 6am to two things. One my med alarm going off and two, my right foot feeling as if it were being squeezed to death! I'd fallen asleep in my w/c, wearing my braces, which except for the foot that was being squeezed like a boa constrictor was on it, was good since I then didn't have to worry that I'd not be able to fasten the straps on my braces because of the swelling when I sleep in my w/c. I also woke around 9am very thirsty. Then around 10. And then finally for good around noon. 


Bas came in here and was watching TV for awhile. He decided he was hungry but came back and said he decided not to eat because Dad said we were gonna go get pizza. I asked him where but Dad never said. At some point, Gar came to let me know we were going on a road trip. I asked how soon we needed to be ready. I had a bit thankfully b/c Barb was napping for a bit after work, as I was still really stiff around 1pm, which was med time thankfully. I am now pretty much on a med schedule unless I don't hear my 6am alarms. And since two meds are taken every 6 hrs and one is every 8 hrs. I figured out a compromise for ONE dose of the meds. My am dose they can all be taken together, as can my bedtime dose. It's the middle 2 doses that are an issue. I'd have to take the 2 meds at say 12pm and then at 2pm take the other. Then at 6 take the 2 again and at 10pm take the one. Then 12am the 2. WAY too much hassle, it'd have me taking meds every 2 hrs which is crazy. Actually every 3 hrs really because I tend to take my PRN meds at the halfway point of the ones I take on the 6s and 12s. So I'd take meds at 6am, 9am, 12pm, 2pm, 6pm, 9pm, 10pm 12am and 3am (if I were awake). WAY TOO CRAZY! So I use the nursing home rule of 1hr before-1hr after dose is due and rather than doing 12pm and 2pm, I do 1pm. So then I can get away with 6am, 9am, 1pm, 6pm, 9pm, 12am, and if awake 3am. Sometimes I slip a PRN in at 4pm rather than those 3am ones. I'm rarely awake needing meds at 3am, awake yes, meds not usually. While he was in here, Gar told Bas he needed to get dressed. Bas, being his father's son, said "You're not dressed yet so why do I have to get dressed now?" Gar came back with the answer every parent has to resort to at some point, "Because I am your father and said so." Bas basically let him know what he thought of that...which was no way was he gonna get dressed until we ALL were getting ready! I said to Gar that that's what he got for having a son who thinks for himself and is self-confident, a smart-aleck like his father, and is so funny, basically him as a kid in a way. Needless to say, Gar left, came back about 10 min later, dressed and said "HA I am dressed now so GO GET DRESSED!" They were both laughing the whole time. While Bas can sound like he is a child who doesn't do as he is told or like he back-talks, he was just playing around and when it's serious. he rarely ever back-talks. 


I asked where we were going and got no real answer. I said are we going south, and got "I'd planned on it." I guess Gar never even told Barb where we were going. Although about an hour, hour and a half into our drive, I did figure it out. I don't know why it suddenly hit me, but we were on this back road, gravel, but had grass growing in the center of the road, trees on both sides really close to the road, no homes or any other signs of civilization in sight...no power lines even!!!. It suddenly popped into my mind what we were doing. And since we were all hungry, before we left the MB area, when Gar gassed up, we all got a snack. Bas had his Lil Chub brand sausage, Gar had jerky, I had chips. Barb didn't have a snack I guess. I have to say, it was a beautiful drive. A good bit of it was through Francis Marion National Forest.

Map of Francis Marion National Forest & our routes taken

Of course what would a family outing with our family be if we did not stop at a Goodwill? It just would not be right! So we stopped. I found an outfit, a light purple long sleeve shirt and striped pants that have black, white, darker purple, light purple and a really thin blue stripe. Sounds odd but they're cute. A lounge/pj outfit of course. I almost never wear anything that I can't also sleep in! I dress for comfort MOST of the time. Esp. for doc appts and most esp for when I have my RFAs. I gotta be as comfy as possible on the table. And then too, they have to be something that doc has easy access to my lower back, upper part of my backside. So it HAS to be comfy, soft, and loose. I made the mistake of wearing jeans once. NOT a good idea. I'd gotten a bunch of pants the other day when I went to the doc as well. I have gained a little bit of weight, just enough that since I like my clothes loose, I needed more pj pants. Plus, I can't have too many pairs of pj pants now can I? 


We finally got to the restaurant between 6 and 7! We didn't rush too much although Barb did need to get some sleep tonight since she has to work. But we had these garlic knots as an appetizer. They were so wonderful. Balls of dough, about the size of a dinner roll, baked and topped with their roasted garlic and olive oil glaze and sprinkled with Parmesan cheese. Then there was marinara sauce to dip them in. Barb and I kept ripping our knots apart and kinda mopping up the glaze that had pooled on the plate. I just now found out we could have ordered a side of the roasted garlic and olive oil glaze, so I ever go back, I am gonna do that. To me, there couldn't have been too much of the glaze on the knots, but y'all know how I am about my garlic, and esp. roasted garlic. I just love me some garlic. And it's not a problem with the breath and kissing my hubby cuz he's as bad as I am about it. We're the same with onion too although for me to have raw onions they gotta be VERY small. But, cook em and I'll go nuts on em. We cleaned out a dozen of those knots in maybe 10 min. Bas saw on the menu how many were in the order and said "We get 3 each right?" We all kinda laughed and said yes. He said he just wanted to be fair. And he made sure we all got our three. Gar and Barb ended up with the same thing, the Sausage Parmigiana sandwich, w/fries and a pickle spear.

Whole Link Italian Sausage with Grilled Onions and Green Peppers. Oven-Baked with Marinara Sauce, Provolone Cheese and Oregano

I got The Olympian, minus tomatoes with ranch and bacon pasta salad.It was odd. They used rotini pasta and it had something on it that wasn't ranch dressing, then it was topped with a ton of bacon and a good amount of ranch dressing. The flavor of the pasta w/o the dressing was almost a citrusy flavor. I meant to ask and forgot. It was WAY too big for me to eat even half of the pasta salad. I didn't wanna box it up because I wasn't sure it'd still be good when I got home. But I only ate about a quarter of my pita, so I have lunch and maybe dinner for tomorrow!

Pita with Grilled Gyro Meat, Marinated Grilled Chicken, Grilled Onions, Feta Cheese, Plum Tomatoes, and Tzatziki Sauce.

And Bas got a Pepperoni and Mozzarella Pizza Roll

Open-ended Pizza Roll made with Homemade Pizza Dough. Stone-Baked and Basted with our Garlic glaze & Parmesan cheese. Served with Marinara Dipping Sauce.

Right now Bas and I are finishing off a loaf (8oz) of steakhouse bread in a honey brown bread flavor. And Shed's Spread Country Crock has a whipped spread with honey in it. Oh my...the PERFECT 3am snack. I think we ate about half of the loaf last night and now there's 2 slices left and they won't last long at all! 


Why he is up at 3am I am not sure. I know I said he should be asleep awhile ago. But I guess it IS summer break so I should cut him some slack. And we have NO plans for tomorrow that I am aware of. What he doesn't know is that soon, he's gonna hafta move some cuz I want part of my own bed! I'll end up sleeping in my usual sitting up position but with my back to the wall along the side of the bed and my legs laying to width of the bed rather than the length of it. That way I get a bit of my bed but he can still sleep in it as well. He has most of the bed this way! I have to keep a pillow on the bed along my left side or I end up being kicked and bruised. In fact, I am headed there now as soon as I post this, and finish one other thing. And then find my book so I can read myself to sleep hopefully, or read until time to get up. Either way, I'd better get in bed before I lose my spot to sleep in! I told Bas no more Netflix on the Ipod. But since I don't sleep without the TV on, he's decided it needs to be Disney and not infomercials. Gee IDK why he doesn't like those. Oh well. I hope you all have a great night, sleeping well, having peaceful dreams. I am off to read my, or drool over my, Taste of Home magazine and then maybe read some more of my book from the Sisters of Holmes County series titled A Sister's Secret.

What Rheumatoid Arthritis Is Like: A Letter for Family & Friends

What Rheumatoid Arthritis Is Like: A Letter for Family & Friends

Stress is a serious issue for many of us with RA in that stress tends to worsen how we feel. This is true even with those things that are good experiences but are still stressful. For me, parties, while fun, mean stress. That tends to make me tense which tends to cause me to get stiffer leading to increased pain. Being busy alone leads to pain even when being busy at fun activities. There are days that I know better than to even attempt doing certain things because they are more than my body can handle. Respect that I know how I am feeling and don't add to my stress. Don't try to guilt me into pushing myself harder than I ought to because it is what you think I should do. You do not live in my body, do not feel what I feel, do not have the limits I have. So do not presume to tell me what I should or should not do. Yes, my health affects everyone close to me. No, it's not fair. But in the end, if you can't deal with it, that is your problem, not mine. I know how to best care for myself. Avoiding stress when possible is one of those things I need to do to care for myself.

Do not make me feel guiltier than I already do over the limits my health has placed on me. You think I enjoy having these limits? Nope. I'd like to be healthy. But, it is just not something that everyone can have. I don't like needing to rest, needing to cancel plans at the last minute, needing helping with basic tasks that I've done for myself most of my life, etc. Chronic illness has a way of destroying a person's feelings of self-worth. That brings on plenty of guilt by itself. Many people with RA are type A personalities where before their diagnosis, they were the type to thrive on being busy all the time. When that changes, there is enough guilt I place on myself that I don't need others adding to it. Some of the best advice I've been given is to do all I can to stop the guilt I tend to place on myself as soon as I recognize those feelings. What did I to that requires me to feel guilty? Did I ask for health problems? Do I really want to be unable to do things I used to do? Not likely. So, why should I be made to feel guilt over my health? Have enough respect for me that you don't add to the guilt that I already need to fight.

It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough. This can be said of virtually any activity, no matter how “easy” it is. Some days, just moving is an accomplishment.

Some days I need splints, a cane, ACE wraps, a walker, crutches or even a wheelchair. Other days I don’t. Just because I don’t always need those helps, doesn’t mean I’m faking it. Those are simply tools that make my life easier to handle. They might allow me to do something I'd be unable to do without using those tools. They may make it easier to do a difficult task. Needing these items does not make me weak, is not giving in to my disease, is not letting the disease win, or any of the other negatives I've been told about myself for using a tool I need to make my life easier. Is it something I like? Not really. But which is better? Not using a tool I need to make life easier simply because I “shouldn't” need it? Or using any tool available to me in order to have a better life? To me, it makes more sense to use any tool available to make life easier or better. If using a wheelchair means I can go out more often with less pain, then why should I be ashamed of that? I might not like needing it, but I am definitely not ashamed. In all honesty, the people who have learned to use whatever tools at their disposal to have a better quality of life are a lot stronger than those who avoid those tools for whatever reason they come up with to justify it. Knowing when to accept help takes quite a lot of emotional strength.

My pain can travel from joint to joint from day to day or in fact, hour to hour. Just because this happens does not mean it is any less real.

I sometimes need a handicapped spot. I don’t like it. But, I need it. I may look healthy enough that I don’t need it but walking out of the store, I will likely be having problems walking. Most people who do need a wheelchair at times do not like to need one, especially those who are younger and those who look perfectly healthy. Yelling at me, accusing me of being lazy, assaulting me, taking your anger out on me or telling me I don't “deserve” to use a handicapped spot is not something a stranger needs to be doing. I wouldn't allow someone I love to treat me that way, I am even less willing to put up with a stranger doing so. If you don't like where I've parked, report me to the police. In fact, I will be more than happy to get in my car and wait for them to arrive. But, know that you're the one who will, at best look like a petty idiot and possibly be considered to be filing a false report. If you've simply yelled at me, I am likely to just laugh at how dumb and intolerant you look. But if you dare lay a finger on me or threaten me, I will be making a complaint and making sure there is a record of it. In fact, if you act like an idiot and threaten me, I will more than likely be using the video feature on my cell phone for proof. And it will become public! Why? I have nothing to hide about my illness. I try to avoid taking my illness out on others. But when someone attacks me, I've learned the best way to handle it is to not give in to the anger. For one, it keeps me from looking like an intolerant jerk. Two, I have better control than to allow a stranger to get to me.

The medicines I take may have nasty side effects. I know this. I don’t need reminders of this from someone who doesn’t live in my body and feel my pain. I don’t enjoy taking the medications but I have a disease that needs to be medicated. It is not easy but it is my life. If you can't handle it, then that is on you, not me.

Don’t lecture me about the addictive nature of pain medications. I know the risks. And don’t judge me for using pain medications. It doesn’t mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life. Would you tell someone who is on meds for high blood pressure or on insulin for diabetes that their meds are addictive? No. You would realize that there is a medical issue that needs treated and give them your support. Well, guess what? Pain is a medical issue that needs treated just as much as any other medical issue does. It is not right to allow those who have abused a medication to color your perception of someone who takes it exactly as prescribed. Yes, addiction is an issue for some people who are on pain meds. But, just because I take pain meds to treat pain does not make me an addict. What it makes me is physically dependent on my medications. Addiction is a mental compulsion to take an unnecessary medication or to take a medication in inappropriate ways in spite of the fact that it is dangerous and not needed. Another difference between addiction and physical dependence is that addicts tend to take pain meds to escape some part of their life; people with pain tend to take pain meds to have a better life. For someone with pain, treating it is only humane. Yes, someone in pain does typically become physically dependent on taking their pain medications. That is not anything different than someone who has high blood pressure taking meds to treat it or any number of other diseases that no one questions the treatment of. But simply because there are people who abuse pain medication, most of which do not even have physical pain, society deems anyone on those meds to be an addict. That is rude and offensive. If I am taking my meds properly (and to be honest, many of those who take pain meds tend to take less than we are allowed for a variety of reasons) for a valid medical issue, what business is it of anyone but myself and my doctor (and those I trust enough to make it their business)? Quite honestly, I do not care what strangers think of me. The hard part is when those who profess to be my friends or love me are less than understanding. But for me, I refuse to allow the negative opinions of others about the meds my doctor(s) and I choose add to my stress. Stress leads to more pain which leads to needing more treatment. If you don't like my med use, you are free to avoid me. Don't be surprised if I am not willing to listen to your negative opinions though or if I refuse to discuss aspects of my medical care with you. It really is not your business!

Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don’t move right and other symptoms. Sometimes, I’m grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don’t look “normal”. This is all due to RA. I may have digestive issues thanks to RA. Lung and heart issues are also possible with RA. RA does not affect just the joints, it is a systematic problem. And when combined with the various secondary conditions that can be associated with RA, there isn't much that can't be affected by it.

Please don’t suggest “cures”. RA has no cure (at least now). So, I have it, it is incurable. Live with it…I do. I trust my doctor and the treatment plan we’ve worked out between us, so please don’t try to convince me you know a person who “cured” themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they’ve been “cured”.

If you’ve ever broken a bone, think of that pain and magnify it. Then imagine that all over your body. That’s how I feel at times.

When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I’m not doing it to slow our trip down. I don’t take joy in having a hard time getting moving after sitting for awhile. Don’t hassle me over it.

Don’t assume when you hear the word “arthritis” that I mean osteoarthritis (OA), which is what most people think of when hearing arthritis. There are actually over 100 diseases that fall under the umbrella of “arthritis” and some affect more than just the joints as RA does. Most people associate the word “arthritis” with the wear and tear arthritis of aging, which is osteoarthritis. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I’m not too young for either RA or OA or any number of other diseases that are thought to be older people's problems. Infants get RA as well as adults. When diagnosed as a child, it is termed juvenile rheumatoid arthritis, juvenile arthritis or juvenile idiopathic arthritis (JRA, JA and JIA respectively) Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I’m not too young for arthritis, please don’t tell me I am. And if you still think I am, well, my body and doctors say different so I’m going to listen to them, not you.

I may need to rest more often than most people. It’s not that I’m lazy. It’s that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time. In fact, the fatigue can be one of the harder parts of RA to deal with for many of us. I've had JRA since I was 7. I became accustomed to the pain long ago. But the fatigue is not something that has even been normal and easily acceptable to me. I'd rather hurt in all honesty because it can be treated in a variety of ways. There's not much I've found that helps the fatigue.

I may not have “just” RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems. They also tend to exacerbate each other. When one disease flares, it tends to have a ripple effect and sets the others off.

I don’t enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don’t assume I’ll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don’t try to make me feel guilty. And if I say yes, but have to change my mind later, please don’t be angry. I don’t like doing that but sometimes despite my best planning; I just can’t make my body cooperate.

There are things I can do that I also enjoy doing that may look like a struggle to you. Please don’t try to “protect” me by taking things from me or stopping me from doing something. If I’m doing something and not asking for help, it is because I am ok doing that. I’ll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don’t just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don’t be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn’t apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

Just because I look healthy, doesn’t mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.

Please do not think it is funny to force me to shake hands and then use a crushing grip. It’s not funny and it’s quite painful to be honest. Also please don’t assume because I don’t shake hands that I’m a snob or anything other assumption. It’s just quite painful, even if my hands look normal.

Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me; whether it is activities I enjoy, my job, or my ability to do some of the things I found simple before. To me, it may seem like I’ve lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief: anger, denial, bargaining, depression, and finally acceptance. It is called a cycle of grief for a reason. It is not a linear process. Not everyone has all five stages in the order they are commonly listed. I've never had much issue with the bargaining stage and only rarely does the depression hit, usually when there are other stressors beyond my health that would cause depression on their own. And once we accept our RA, that's not the end of it. It's not like acceptance is a magical land we never leave once we arrive there. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA. There are many things that can throw a person into one of the other stages after they've accepted their RA. Stress, even good stress, can send us into one of the earlier stages. Flares can do so as well. Adding a new diagnosis of another secondary condition will cause us to experience the stages as well.

Do not assume I’m “just depressed”. Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don’t need to “get out more” and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can’t do as much when I go out.

Also please don’t try to convince me that changing my diet will “cure” me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn’t help everyone. Personally, I did the whole avoidance of certain foods thing when I was a kid. It made no difference at all in how I felt.

Also, I don’t need to be told I need more exercise. I’d like to be able to exercise more but may not be able to. That is frustrating enough. I don’t need to hear from others that I’m not doing enough. I may be incapable of exercising certain ways. I may have been told to avoid exercises at a particular time to prevent exacerbating an issue. Unless you are intimately involved in my care, you have no right to tell me what my body needs.

Please do not tell me that my choice of treatment is invalid because it is not conventional.

Stop springing surprises on me. I cannot always handle them. I need to live life one day at a time most of the time. It is unfair to either me or you to make plans that are a surprise to me and spring them on me. Spontaneity is not really a good thing when you have daily pain. I need to plan my activities based on my pain levels. Some days, having people around is a distraction that's needed. Other days, trying to concentrate on fighting the pain while also visiting with others only adds to the pain. It's not fair to either you or me if I am in pain and unable to be good company. Respect me enough to not spring surprises on me. Some days, all you can do is breathe through it. It is on days like that that I not only prefer to be alone but I need left alone. I can be rather short-tempered when dealing with pain and it truly is not a reflection on the person who experiences my temper. In fact, I hate when my mood is bad and I can't easily control my grumpiness. It tends to cause both me and the person dealing with me to get hurt, frustrated or angry. I'd rather not hurt others. And when I am in a flare, it is that much worse. I have a reason for being a solitary person. It's best for everyone concerned. It is bad enough when I am in a foul mood thanks to my health, it does not need to be inflicted on others, and is one of those limits where I hate having to set it but I will do it each and every time I need to. Part of that could be just not wanting others to deal with how I feel. Part of it is a coping issue for me. I can handle my pain much better at times if I am not trying to worry about being “up” or “on” or sociable. There are other times that the pain is not so bad and being sociable isn't as hard and is in fact a good distraction from the pain. But, if you surprise me, it takes away my choices in dealing with my pain the best way I can.

If I shy away from your touch, it is likely nothing to do with you and everything to do with pain. Some days certain things hurt, like the gentlest of hugs while other days not much hurts because things are numb. [On a specific and personal note rather than the generalities I tend to think of as experiences most of us with RA have felt at one time or another, scarily, for me, the numbness is part of that is worse than the pain. Most of the time, I would rather feel the pain than be numb. At least I am still feeling. I say that after all the months in the hospital in 2009 when I truly couldn't feel much in my arms and legs. In my arms, it was as if I were wearing long gloves that were tight enough to restrict sensation, and movement. It affected me from the tips of my fingers all the way up my arm to mid-way between my elbows and shoulders. Getting that feeling back was painful in so many ways and I am somewhat glad I don't remember much of the time in the hospital to be honest. But as painful as it was, at least I was feeling. My legs were numb from toes to mid-thigh. The feeling wasn't quite like in my arms where something was tight and restrictive but there was less sensation from what I recall. Less movement too. Even now, six years later, my hands and feet are still affected. But I had issues with peripheral neuropathy before the "long vacation" as we call it. And yes, that's just typical of the slightly twisted sense of humor that I've grown into. While it was not exactly fun and games for me; well most of the time, although to be fair, in the nursing home, there were quite a few incidents of fun and games; and it was rough on my loved ones, it came about because of the habit of picking on each other that we have. At first, I was going to call it my incarceration but that could be seen as bitter and in all honesty, there's nothing to be bitter about. It sucked but it is what it is. And I don't do bitterness too well. Then I jokingly accused Garrin of secretly loving that I was in the hospital as it meant a vacation from having to do all the things he does for me. And of course that meant he then said no it was a vacation for me from putting up with him or something to that effect. Gotta love when you can laugh together over the crap thrown your way!]

Don't take your fears about my health out on me. Talk to me before getting so upset that it is a problem. Sharing burdens tends to make them lighter. RA is a scary disease. Most people do not like hearing that it can kill a person, whether due to the effect the inflammation has on the heart, by causing a stroke thanks to inflammation (cardiovascular disease is a fairly common cause of death in those with RA and in the past, RA shortened a person's life expectancy by about 10 yrs or so when all other variables were considered. Now, I've read averages that range from 2-5 yrs for the most part. But most docs do not address it and most patients don't want to hear about it. To me, I'd rather hear about it but I won't force you to talk to me. But if you're not going to share the issue, don't take it out on me either. Just tell me you're working through a problem that you're not ready to discuss. I can't make sure to address problems as early as possible if I am unaware of them. Is it easy hearing that RA is disabling, requires a lot of treatment that can be scary and in fact, can kill a person? Nope. But, I'd much rather know and be able to keep an eye on potential issues than be left in the dark. If I can handle fears about my own health, then you need to do that as well without taking it out on me, without denying that there is a problem. Acting as if there is nothing wrong is denial. As I mentioned earlier, that's part of the grief cycle common to people who have experienced loss or who are facing loss. Denying that I have a problem might make you feel better, but it does me no good. It is unrealistic. Learn to share those fears without yelling at me and making it seem like it is my fault. No one is to blame. If you cannot manage to avoid taking that fear out on me, then you need to find someone who can help you deal with it. On the other hand, just as I would rather you not take your fears on me, allow me to work through my worries an concerns myself if need be. Yes, sharing a burden makes it easier to deal with. But there are times that I might not be able to pinpoint the issue. I need time to work through it to figure out exactly what is bothering me before it can be shared. Respect that I will share when I am able to actually communicate what is wrong. If I say I don't know, it means I don't know. If I say I am not ready to talk, then there is a reason for that.

Know that when I do things that might seem selfish to you, it is likely because I know what needs to be done to take care of me.  Society tells us to put others before ourselves. But when those of us with chronic health issues do that all the time, and we ignore caring for ourselves, we end up in worse trouble than we would have if we'd taken the time to get the rest and care we need.  I deal with feeling selfish for caring for my own needs and needing the help of others on my own, I do not need you to add to it.  In fact, I've learned the hard way that pushing myself to care for those around me while ignoring my own needs will backfire on me and likely end up with me in a crash and burn situation.  At best, I will end up flaring and need more help doing simple tasks that had I not pushed myself so hard to be and do everything for those I care about I wouldn't need. At worst, I might end up doing more permanent damage and being unable to do certain tasks for myself again.

Author's note: This would not have been possible without those of you who suggested ideas. For that, I thank you. If you wish to share this work with others please provide source link and © information.

© 2006-2015 Waynette Porter