Tuesday, April 14, 2015

Dealing with Chronic Diseases and Chronic Pain that seems to steal your entire life...

Sometimes I feel as if I write the same old song and dance, over and over again. Yet, as I was glancing as some email newsletters I get, once again for the Thousandth time, there it is in my face, talking about not being able to travel "too far away from home", or how these illnesses take you so far down in fatigue that the simplest things you used to be able to do, now are like monumental achievements.

I always try and bring myself back to "Okay, it could be worse"?! Well, what does that mean for any given person... worse as far as I am not in the bed 24/7/365? Worse that right now I am "well enough" to not be on the sofa for many hours of the day? Worse as in, I can still walk without a cane or a walker, I still have my eyesight, I still can talk, and okay all of that "same old stuff". Worse as in, gosh there are so many others out there that have it "worse"? That is dependent on who is viewing it, at any given time. For one person that might mean a "bad" day or two.
For others it may mean they had to cut a vacation down and come home a day early, or cancel dinner plans for an evening, or decide to order take out because they were too fatigued to cook. I've "entered" a couple of different items for this month. One is sponsored by the Sjogren's Foundation, due to April being Sjogren's Awareness Month. Each day we must think of "ONE" word to describe "Sjogren's". The other sponsored by WEGO Health, is April is "Writer's Challenge Month". Each day they give us a "prompt" and we are to write about how that particular thing effects us. Some medical and some just life as it is stuff.

Over the past 8 or so years, once all of the autoimmune issues came to light, I had high hopes that with a more "specific" diagnosis (or more than one) between the doctors, myself, medications, and taking care of "me" would mean finding a much better quality of life in my future. Now, each day, I come to terms with the pure and simple truth. Unless something miraculous happens in the thorns and arrows slung at all of us with these hideous illnesses, I nor anyone will ever find they have a "better quality of life." I think we "fool" ourselves into thinking, "we must remain focused on the good, on the "half full" rather than half empty glass. We must think that against all odds, look how many others have out smarted all types of "basically deadly" diseases, and are here to witness to us that it can and does happen.

Yet, me putting on that happy face, yet inside deep inside both hips it is like a ball of fire inside, churning, aching, burning, and how do I "ignore" that kind of pain? Then I find out last night, and I mean very late evening, that after waiting 2 weeks to see my orthopedic doctor who has done both knee replacements, and much more now does NOT take my insurance? And the woman on the phone was an absolute witch. When I began to ask about me paying for the visit, she snapped back at me, an office visit is "$175.00"! Well, in the first place they should have KNOWN right away, and in fact when I called and made the appointment, she even looked at my file and saw that I had the insurance and never uttered a word that he was no longer taking it! Well, that leaves me in a world of hurt, now over 2 weeks. If they had told me that in the very beginning, I could have either tried to find another orthopedic doctor, OR just paid cash for the visit and the injections.

I was still so totally upset by the entire ordeal, that I called his office again this morning and spoke with HIS nurse/office manager. She told me the "visit" for me since I am an established patient is $75.00, then the injections are $100.00 each. So, the lady from the entire doctors building didn't know the circumstances, and didn't realize I had been seeing him for many years. I can also say that if I had been able to get hold of him, he would have charged me less, and did the injections. Him and I have been through several situations involving my own self, and then a surgery he did on my Mom, so he is well aware that when I ask something or say something, then it is something I am extremely concerned about.

Then you take this new stupid insurance, which means if I see another specialist that I've not seen in a long while, then we have to go back to square 1 and get a "referral" done to satisfy the insurance company. Fortunately my neck and shoulder orthopedic surgeon IS taking the insurance!!! So, even though I have to wait another week, which sucks because today is more than pain, hurt, despair... almost intractable pain in my very lower back and especially my hips, that even higher on my waistline hurts, at least I can see someone I know and trust. He has a "jackass" bedside manner. But, if you overlook that, he is EXCELLENT or more than that, THE VERY, VERY BEST Orthopedic Surgeon in the US, as far as I am concerned.

When I was first sent to him due to needing a complete reverse shoulder replacement, of which not many specialists do them, we kind of got off on the wrong foot. He is one that prefers an "less educated" person, as far as their medical situation. He is not thrilled over someone like myself, that comes in, with all of my own home work done, and knowing just about what the issue is with me, then telling him. He is not very happy about a "patient" that he feels thinks "they know" more than he does. Of course I don't BUT, when it comes to myself, my own surgeries, illnesses, and all I've been through in many ways, I am almost an "expert" in some things with my own stuff.  Well, when I went in and seen him for the shoulder, gave him the "low down" on the entire mess I had been through, where the pain way, how many other "scoped" surgeries I had, and in the last my other orthopedic surgeon told me that there was "nothing else" their to repair. The next step HAD to be a "reverse shoulder replacement". And it took weeks and weeks to find one. Then same with my neck. Right after the shoulder surgery, within 3 months I began to have once again a "similar" issues with my shoulder blade. As I again had done, researched it all, and the pain "seemed" to be coming from my cervical spine. Well, he did a special CT on it, since I can't have MRI's, and that CT was terrible. The tech that did it, was not in the right place to do business, and he really was NOT elated at all. He "went off " on me, stating just because I do research online, does not make me an expert, and he really got pissed about my "input". So, I am not sure what happened, but within a week or so, he decided my "theory" maybe right. Since my other orthopedic problems never do "show" on CT's, MRI's... whatever kind of "scan" they do, it is always MUCH WORSE in that joint, than what it showed. So, that was my continued premise. He decided that I could be right, thus he set up to have me on the operating table, and do a 4 level disectomy, and also fusion to at least two of them.

Well, as sure as I am writing this, for the most part, what I had "said" and drawn in my own conclusions, were almost to the "letter" when he opened up the neck and began to see the issues. That is why I say, he is an excellent physician, one of the very best in orthopedics, yet his bedside manner sucks... and once I could look past that, and HE could ACCEPT that in some ways I COULD BE correct, it worked out fine.

Thus, having to wait yet another over a week to get some relief sucks.On top of everything else, I am not so sure about this "forminal" lumbar injection that is supposed to be done Thursday. Now I found out, it is not the "anesthesia that they concern themselves with, as far as the patient driving home. It is the epidural injections in themselves. In that part of the spine, it may make my legs feel a bit "heavy" or numb a bit after its done. Not everyone has that, but some do. Thus the reason not to go alone. But, when you have no one else to drive you, what the hell do you do? Forget it? I mean Mom and Jim both can go, but when it comes to driving, that will be me. Neither of them cam drive to Dallas and back.

So, now I also know this orthopedic doctor could also do those injections too. So, do I hold off, and then have then done later by him...


These are the very examples of why life deems itself much, much more frustrating and difficult when you are suffering from chronic illnesses and/or pain... ALL of it is a "PAIN" in one way or the other....

#HAWMC - "I feel best when..." WEGO Healths Writers Challenge for April 14th, 2015

"I feel best when.."


I must say, as silly as this may sound, trying to truly tell someone when I feel "my best" is a bit more difficult than you might think. We all have our "moments" where exactly as the "prompt" says, when we feel we could take on the world. Yet, when you are dealing day to day, even moment to moment with chronic illnesses, pain, doctors, medications, insurance, pharmacies, those moments seem to be few and far between.

I hardly mean to sound "depressed". That is not what I meant. But, I often feel disillusioned by the progress I see in my health matters, as far as how my medications and physicians are helping me to "feel better". We all too often see these ads on television, all of those ads we are bombarded with online and via email where this, that or the other is supposed to be the "break of the century". The medication is thought to be the "answered prayer" for all of us with one chronic illness or the other.

Then I read about how this diet, or that exercise may make me feel better. I am not knocking down all of those out there trying to find ways to help us, but even after 8 or more years of medications and doctors, I am not much better physically, and more certain at times not emotionally.

That be said, I will move on to the subject at hand. I feel best when "I can get in my car, pick up my Mom and leave for an overnight girl's trip". At that moment I feel so very "free" from the mundane and often "controlling" life lead when you are chronically ill. When I get an unexpected very nice comment, about something I wrote, that gives me a feeling also of that I AM accomplishing something. Much of my advocacy work has a tendency to make me feel "useful", that I have a purpose in life. I am not just out here "disabled", unable to work a job, and just "flounder" around, with no direct reason to be. So, anytime I do advocacy, activist, or volunteer work, I feel like I am on top of that "mountain" I use to describe in my own writing, and at those moments when whether it be a "blog post, or a Facebook post, or some other action such as going to an event that is about some of my advocacy work, I do get those "endorphins" moving a bit, that makes one feel as if they have truly gone that extra mile.

Both times, (especially the first time), my very first poetry book was actually published, and I pulled one out of the box and was able to hold it in my hand, was one of the very best moments in my life! It had been a dream of mine since I was about 13 years old, to be a "published author/writer". So, when I was able to pull the 2nd one together in about 5 months and it became published, again that moment of holding something "tangible" that you can see your own name on, and know that your words are now around the globe for whomever wishes to read. That times of glory I feel then, are definitely monumental.

At one time I was fortunate enough to have another author publish some of my poetry on his website. He came out with a new addition every month. So, sometimes I would send in a poem, or a piece of writing that I felt was truly something to "inspire" others. Several months down the road, I had an email from a couple who were about to be married. They wanted to know if I minded them having my poem read during their ceremony! Talk about elated! First of all, they had actually "read" my poetry, and it meant enough to them that they wanted to share it with their own family and friends during one of the most important days in your life. I was stunned, but also felt like I had truly "touched" someone. That is an awesome feeling to have for sure.

When my husband bought my set of drums and surprised me several years back with them, I was so thrilled. At that time, my chronic illnesses were not really known about and we did spend a great deal of time practicing together. Him on the guitar and me on the drums. When we would get a song written, have the music that went with it, and could put it all together to be recorded, that was always a time that I and him of course felt so very "accomplished". Of course we knew we were not "rockers", or would ever be "famous". But, the ability to take all of the steps needed and come up with a great piece of music, is like writing an incredible poem, or a prose.

My "foundation" as far as what gives me courage to get out of bed each day, is absolutely the HOPE, that I can touch someone's else life. There is no greater feeling as far as for myself, than when not only have I helped a person or persons, and made a difference in a life. So, feeling on top of the mountain, and wanting to shout out, "Here I am World" I have accomplished it"... comes from those moments that I know I have helped another or others find something to smile about, to make them feel good about, and feel that each day, giving a piece of myself, is what my life is all about.

Rhia Steele  



Monday, April 13, 2015

Perfect comeback #HAWMC Wego Health Writers Challenge April 13th 2016

I have to say for the most part, I don't have many people that are "on my back" about what I do, don't do, should or should not do, when it comes to my chronic health conditions, RA, Lupus, Sjogren's, Raynauds, heart problems and the list continues.

There is one exception to that although. Mothers have a tendency to be "overprotective. It matter not if the kids are 2 years old or 52 years old. For them, a Mother is always the protector. So, my Mom I must say would be the person that I am constantly having to give a "perfect comeback" to when I want or do something, and she feels it is harmful to me, or could make my conditions worsen.

So, when the subject comes up about I should not do something such as do light yard work, or gardening. Or a good one is always how upset she gets when I must drive to Dallas to see some of the physicians there. She feels I should not "drive" that far (35 miles one way), and of course he concern is more about the high amount of traffic in the larger city, than the mileage.

My "perfect comeback" for many of her needless worries is that "if I don't drive there, or I don't do the light law work, or go wherever she feels I should not especially "alone" I ask her who will? She is 80 or going to be in August, and in all honesty, she can't even put gas in her own car. My husband is parpalegic and he is not allowed to drive at all, and would not be able to if he even thought he could. Both of my grown kids are a very long distance away. Especially my daughter. She is about 8 hours away. My son, although closer is still far enough away, that he can't simply drive down here anytime I need something, or need to go somewhere, he has his own life to deal with. We have no "friends" that can do any of these things. So, if I don't clean, cook, take us to doctor's appointments, pick up medications, make sure clothes are clean, the trash is out, and the list of course is endless, then it would not get done at all. Do I like it that way? Of course not. Before my husbands accident a year ago, he was "my caretaker". He did some of the dinner cooking, could run to the market if I was not feeling well, and even though I still did many things, when it came down to it, errands, groceries, some of the cooking, etc. he could do. Which took a huge load off of my own shoulders. Now, it is no longer that way. He can walk, but not far, and not without a cane. He is not able to drive, he can't bend over, his balance is very impaired, and so forth, so "me" is the only "person" I have to depend upon.

So, usually whenever my Mom, or anyone that knows me well enough to ask me "how I manage it", or "should I not be doing a certain thing"; my answer is usually just as I've said. "If I don't take care of all of these things, then how do they get done, and who shall be able to do them?"

For others in general, I let them know, yes, I have several very "silent" but serious illnesses. But, I do listen to my physicians who all know the massive amount of "stress" related things I have to take care of. If it comes to a place that I get too ill, then I am just on the sofa, for however long that is (last time while my husband was still in the hospital I had double pneumonia) and was down for about 8 to 10 days. I've had pneumonia again since that one, and still I was down for about 5 days. Those are the times, that some things just don't get done. So, I let people know that I am fully capable of taking care of things for the most part, and those that either feel I should "not" do what I do, or those that feel since I am doing everything, that maybe "I am not all that ill"... I give them a quick reminder about the "spoon theory" also. That is one of the best ways to also explain to people about how much you do, why you do things in the manner you do, and when that days "spoons" or whatever you may want to use as an example run over, then I may have to "borrow" from the next days. Then I "catch up" when things are smoother.

It is never easy to explain your "invisible illnesses". But, for those that truly know just how ill you are, it is never easy to explain to them, you also can't just sit down on the sofa, and allow yourself to "wallow" in pity and despair. Life moves forward, and that means I must do so also, even on those days that I may feel I just can't take another step.

Sunday, April 12, 2015

#HAWMC - "A Day of Rest" Writers Challenge for Sunday 12, 2015

Good question actually! I say that because I am not sure how I honestly "recharge". In fact sometimes it feels like hours, days, weeks, months, and possibly longer before there comes a "day" or a bit of time to be able to not have either health issues, doctor appointments, medications to be filled, procedures to be done... there are sometimes what seems like weeks of constantly running around about this, that or the other when you have chronic health problems, like Lupus, RA, Sjogren's, Heart Issues an so forth. Then I deal with my husbands issues after the accident a year ago, and same thing. His are mostly related to the accident, but he still has to be seen by doctors, take certain medications, and has issues about health of his own we must battle.

I also must for the most part, take care of my Mom too. She will be 80 years old in August. That totally seems impossible. Yet, I can tell over this past 18 months, that she is much more "feeble", "forgetful", almost "frightened" over everything. For example, then I will move on, she desperately needed a new television. She was still watching an old analog TV, with one of those "converter" boxes from an outside old antenna that had been up there probably at least 50 years or more. So, when that "converter box" bit the dust so to speak two weeks ago, I explained it was a waste of money to put into a converter box, when the television could go at any moment. So, I did the research, found a HDTV that was the size she needed and a new inside digital antenna that should bring in enough channels for her. In fact she has more channels now than with the old one. I get it set up, get everything programmed in. She only now has to deal with ONE remote. And it was simple. The on/off button - red. The up/down channel buttons for stations. And the up down buttons for volume. It could not be any simpler than that. I did notice the TV seemed to be not as loud as it really needed to, so I even went and bought an inexpensive set of speakers, put those on it last week, and 'Voila the sound is great. Well, when I had asked her about the TV and the difference in the colors, and how much brighter and crisper everything was, basically I could tell she rarely turns it on. Now this is a woman that watched TV late at night, and during the day off and on a great deal. So, I could tell by her answer something was amiss. She could not "remember" how to get the channels up and down, or turn up the volume (so honestly she never even heard it at full volume), and basically I could tell she was not watching it much. This is what I am talking about. As "simplified" as I had made it. Even simpler than the other old way, with two remotes etc. She is too "scared" to touch the remote. She is too frightened to try to get the volume up and down, and said she did not "remember" how I told her to do it!? Then why had she sat there (and I had been over several times since putting the new one in). that she was not sure how to operate the remote and ask me to show her again? Those types of things are what truly add so much more "stress" to an already stress filled daily life of dealing with my own house hold, illnesses, etc.

Anyway, back to the subject at hand. I have a couple of things I do to try and "wind down", when things get too much for me. Sometimes it maybe just going in and baking a cake, or something sweet. I had mentioned I did like to bake, so that sometimes takes my mind off of all of the "gunk" in happens to fall upon my shoulders. Other times I may go outside, tend to my flowers coming up, take a walk for awhile around my long driveway. That is how I exercise during all of the pretty months of the year. I walk daily outside circling my driveway "so many times" that equal the amount of miles I want to walk daily. I may listen to my I-Pod and let "Matchbox 20" help to melt the stress away, or even as nuts as this may sound, I  "talk things out to myself", when I walk, or if I am driving around running errands. I know some probably understand and others think I am crazy. But, just being able to "voice" the stress and strain that is truly on my mind, and listen to it my own self, helps to take away that ever spinning bunch of stuff that seems to fill my mind daily. Other times it maybe "sofa" time with the pups. As I had mentioned in the post about them, a movie with each one beside me, can also let me unwind from the stress of a bad day.

Other times, I may "splurge" especially on some Sundays. We allow ourselves to run down to the "no-no" shop as I call it (the donut shop) and pick up of course all of those things we should not eat. But, sometimes once or twice a month, that bit of "extra splurge" kind of also helps to feel like you have "treated yourself."

The very MAIN thing I love to do when ALL of the "rat race" of bills, illness, medications, bills, doctors, cleaning, cooking, laundry, and more just push me to the :overload" button, then I take my Mom, and we go for either the day or usually we spend a "free" night at the Casino in OK. It is the Winstar, and once you step into the noise, the lights, no windows, no clocks, the sea of people to watch, the pick of foods... all of that suddenly takes and melts away all of the "horror" of our usual days in life. I can't think of anything as grand as getting completely away from this small town, away from the house, away from phones, mail, bills, and all the encompass having chronic illnesses and chronic pain;; as going to where none of that matters for a few hours.

It is "freedom" for me. It is "no worries" other than which "penny slot" machine I want to play next. Vacations are awesome, yet with all of the things that you need daily, it is difficult to really go on a true "vacation" without still worrying about medications and so forth. But, going for an overnight trip or just an all day, get up very early and leave on a Sunday morning. Zoom through Dallas when it is a rare occasion of no traffic, stop at our "favorite" stopping off place for a small breakfast, of all places "McDonalds", then heading up the road just another few miles to the Oklahoma State Line, and immediately seeing that huge Casino just another mile or two away. It has, and probably will always be the very best way for me to "leave it all behind" for a day or overnight, and recharge my batteries, so I can come home and feel some of that stress has been melted away. Also, the next best thing is "planning the next trip"! Usually we try and go once every couple of months. But, that depends on the weather, how we are feeling, and so on. It has been a "day off" long overdo right now. I am much MORE than needing that trip away. If our "tornado season" weather could give us a break this month, I hope to be up there "watching those reels spin" my troubles away.


Rhia Steele 04/12/2015



Wego Health Writer's Challenge Month

Saturday, April 11, 2015

#HAWMC Saturday April 11, 2015 - A Letter to my Two "Fur-Kids" Thanking Them for Their Love and Support

Oddly enough, we hear more about this everyday. Someone critically ill, and they get some type of a pet, dog, cat, or so forth, and their condition sometimes either improves, or the pet may help to "point out" a tumor. Our pets are usually very incredible animals. They are a companion until the very end. They love unconditionally. As long as they are fed, kept safe, have good clean water, and like mine are spoiled rotten. (I always use the old saying "My pups are not rotten, they just smell that way!) I know it used to be a saying for those with kids. They can be providers of comfort, they pick up on whether their owner is not feeling well, or if something is wrong, they can sense something is out of the ordinary.

My two pups, and since they have been grown for a long time, Tazzy, who is about 10 years old now, part Pug and part Pomeranian, and my Bubba-Gump, who is about 5 years old, and he is Chi-Weenie. Part Chihuahua and part "Weenie" or Dachshund as the proper name is for them. Oddly enough, Tazzy is much more Pug than Pom. She looks and has all of the actions of being much more Puggy, than Pom. As far as Bubba, he is definitely a mixture of both. That nose is on the floor, always sniffing, looking for something else, even a crumb to eat. I call him my "crumbinator". He is always getting up any and every crumb I drop, no matter whether I am eating, or cooking/baking, he loves to sit right beside me for those crumbs or a lick of whatever I am baking, just like kids do, when I am ready to wash a bowl etc.

They offer so very much comfort to me. When I am ill enough to be on the sofa, then they are there, one on each side of me, as close as they can get, as if they were like two angels watching over me. If I am upset, they both can tell. Especially if I am crying about something, they both want to come up to me, and give me "kisses" and wipe my tears away. Even though at times, they are almost worse that kids, I just don't know how I would get through most days without them right at the door, when I walk in from errands. Or keeping me company, watching movies with me, when I am not feeling well.

When Jim spent over 3 months in the hospital last year after the wreck, they sensed that I was "alone", and it was like they were guarding me. Day and night, always listening, always watching to make sure their "Mom" was safe.
When I go to take a shower, I leave the door open a bit at the top. Usually it is Tazz, but sometimes her and Bubba will sit right there by the door of the bathroom until I am completely out of the shower, dried, dressed, and ready to come out of there.  They keep watch on me, to make sure I am okay.

No one as far as humans go, I think can show as much unconditional love and care for you than a pet. Especially dogs and many cats. They just have a way to either make you laugh when you are sad. Or they can calm you down when you are upset. If I feel something is wrong or out of whack, you can bet they sense it also. Even in the middle of the night, they can be sound asleep, and out of the many noises, from the train that the tracks are nearby, neighbors cars in and out, both of them will begin to growl very low if they hear a "sound" that is not something they usually hear.

I have to admit Bubba is "bless his heart" a bit skiddish when it comes to something loud like my vacuum cleaner. He will run and get into my husbands arms. He does not like any of my items, such as the blow dryer, the vacuum, my carpet shampooer, or anything that makes much noise. Yet, as soon as I turn it off, and are going to put it in the closet, he will run at it, bark and growl, like he was some huge watch dog. It is just too funny to watch him act like the guard of the house, once it is off and on its way to the closet.

Tazzy does silly things like chase after my "swifter mop" or my duster. She will jump, growl, try to snatch it away, anytime she sees me get those out, she is ready to play.

Bubba loves a game I play with him on marshmallows. I fix sugar free Jello often, and I usually put a few in it. He can sense those marshmallows all the way in the living room, under his blanket asleep. And before I even get those out, he knows the sound of the "jello" boxes I guess. Because as soon as I begin to pour the powdered Jello into the bowl, he comes running. He jumps up and catches them when I throw him one. He loves that so much. I don't think he really loves the marshmallows. It is all about the "game" to catch them.

So, both of them, are my rock, my foundation, my friends, my "fur kids" and they keep me going even when I feel life has truly "beaten" me down. I can walk in and see their wagging tails and those smiling faces, and all is right with my world.


 Bubba Gump (when he was about 9 weeks old)
Tazzy at about 3 years old


Jim, Tazz and Bubba Gump in about 2013