#RABLOG WEGO 3rd Day of & day Blog Week - Telling Someone about Your RA

You may have heard someone talk about having moments where they feel as if they are "looking down" on themselves, as if they were watching their life, yet did not feel they were really living in it?

Or have a feeling of being "detached" from the world and everyone around, as an observer, rather than participating in the goings on in daily life...

This can be known as a mental disorder, if it is always going on. If a person feels always detached from living, like it is a "cartoon" or perhaps you feel not seen nor heard but you can watch from above and watch life take place.

In The Psychological World it would be known as "Detachment Disorder", one of the Personality Disorders people can have.

Well, in a way, this is almost what it feels like to have a chronic illness such as Rheumatoid Arthritis. Especially in someone that may be just diagnosed with the disease, or has not had a great deal about RA explained to them, or have not had the time to research and find out more how RA effects the body, plus the mental and emotional realms of daily life. Often I've felt as if no one else could ever "get it". They could not possibly have an inkling of what I felt. I felt all alone, and almost like I had something "mentally" wrong, as in having some type of personality disorder such as this.

At first, I could barely understand all of the ins and outs of what RA can do to the body, plus it can have dramatic effects on just how you feel about living with it. You can often feel physically so lousy, thus you do not want to see others, or try to explain to them what RA is all about. FEAR, ISOLATION, feeling that you are ABANDONED, that your loved ones may think you are lying, or that you are just making all of this u[p to get attention.

Embarrassed is yet another part at times of having RA, and/or other chronic illnesses. You do not want people to look at you like you are sick for if they see you as "RA" the disease, it maybe they "feel sorry" for you, or think you can't do things with them again.

Each and every emotion that you feel in "grieving" you can also feel in RA. Angry, frightened,depressed, thinking it is wrong, you cannot possibly have such a horrible illness, resentment, trying to even "bargain" with Your Higher Power asking Him to take this away from you, or asking WHY ME?
WHY do I have to be SICK?

Those and more are all of the "feelings" of RA for myself. At one time or the other, I've felt each of them, and at times several of them at a time.

I even sometimes feel like a "lab rat"... I guess you could medication might" stick and make you feel better. But, you may feel better in one way, then suffer from side effects that are worse than the RA itself.

You often wake up aching, throbbing, in several joints, and some days all over. I find it difficult some days to even think about needing to do some things I used to not even think about... cleaning, dusting, running errands, going out on a weekend. Yet, with RA, you have these feelings of what do I HAVE TO DO today, and what can I postpone until the next day? So, you slowly wake up, try to begin to move around and for me, then I go straight to the morning medications, taking them hoping that some of the fatigue, the pain and stiffness, the brain fog, and other symptoms will at least lessen enough for me to get through the day and do what I need to get done.

To have RA, is like having your life turned upside down, and then having to learn how to have a totally "new life normal", for all that you did have that was normal before RA, for the most part has totally changed. 

#RABLOG WEGO's Week long RA Blog - Day 2 - How to "fight" RA Fatigue

This is one tough "cookie" so to speak. Some of us battle more often than others I am sure.

Those days when I get up and feel like an "18 wheel tractor trailer" ran over me and then backed up and did it again. There are times, that I try to just push through the temptation to get back on the sofa, and watch movies all day long.

Yet, life some days, even with chronic pain and chronic illness may not allow a day to "hide out". So, those times that I KNOW I am going to have to be up and about, I try to "plan" for it ahead of time. You can't "plan" the fatigue, but you can plan a time before you may suspect a very busy day, and that fatigue can come with those days. So, I tend to try and get to bed or at least relax a bit earlier that afternoon and evening before.

I try my best to find ways to doing some things either  during the time of day that I feel "less fatigued". O if I know that I have something that will take more energy than "usual" I try to rest the day before, or sleep by going to bed a bit earlier.

I also have found to make doctor appointments, or anything type of appointment where I need to go here or especially in Dallas, to make them between about 11:00AM and 3:30 PM. That way I can avoid that "fatigue" in the morning, and yet not have to deal with the more fatigue that comes on after a busy day... around 4:00PM.

I also try my best to "combine" things. If I need to stop at several places running errands, I plan my route where I can do the one that is further away, then work my way in to the closer things, so I am close to home as possible after I finish. I also at times have to do part of errands, shopping, house work and so forth and then finish it up the next day. If I have a large amount of groceries to buy, then I do that one day, and save the other errands till the next day. Plus if I can possibly get medications by "driving" through a drive through window, or even at the bank, I try to use the drive thru anytime I can where it is possible.

When the days are very hot, or I am just not feeling well, or fatigue has got me badly, then I use my Handicapped parking sign. That is a huge help especially at a very large store, and especially if I am having to buy things that are heavy.

I find also, if I stay "moving" once I am up and around, I am better off "finishing" up all I can before i sit down. If I sit down before some things that need to be done and rest, then it seems I am more tired and fatigued than I would be had I just finished everything up and then sat down to rest.

I keep myself on a set schedule as much as possible, as far as eating, sleeping, getting up and all. If I stay on a schedule, then it seems that also helps to fight the fatigue...

Of course there are times when it is just TOO much, and the fatigue just puts me down for the day... and if that happens, then I listen to my body, and I "take that day" or a portion of that day to give myself the "relaxation" it needs....


I can say also, that "mental and emotional" stress brings the fatigue on worse than ever for the most part... so trying to keep an even keel emotionally helps, but of course we are humans, and we have stresses to deal with... 



#RA BLOG

Am Torn to Shreds mentally and emotionally..... the Loss of a Dear Dear Bestest Friend my Puggy - Tazz!!!!

I can't begin to tell you that my bestest friend in my life my Puggy, my Tazzers, my Mo Mo she has several nicknames passed away this morning...I can't even bare the thought of losing something once again, I love more than life itself.... God promised me last night she would be okay... she seemed very weak yesterday and was acting like she was not feeling well at all, or even breathing late last night as she should.... I took her to the Vet and her blood work was "off"... so I am supposed to take her today for more labs.... last night, I held her in my arms and rocked her and sang the songs I always have sang to her and her brother Bubba.... and I did not sleep all night... I kept telling her that she would be okay today.... that God would heal her.... I cannot do this anymore.....I can't stand another broken heart.... why, why WHY was she taken away from me? Her, Bubs, and me were all together here and happy.... I can't understand why something like this happens, she never hurt anyone, and from the moment I saw her at 6 weeks old... and had to wait a week to get her... she needed her other shots.... and that was in Everett WA - she was the best Christmas present I could ever hope for or dream of.....life is just too cruel.... I don't want to live without her.... I love Bub's so much too, and he is also a light in my life.... but she was and is and always will be my baby girl... I can't even stand to move her... she is on my sofa in her favorite spot, wrapped in the blanket I bought for her the night I picked her up from the lady that sold her to me... I feel like pieces of me are dying also....

I just cannot even find the words to say how upset I am... and now my Mom's not feeling well, and has stomach issues and so on, that have been going on now for weeks... at first we thought we had a stomach bug, that had been going around... but that was at least 6 or 7 weeks ago... I am not all the way better, either... but my stomach is "weird" often just due to medications and so on.....

I did not get to post my RA Blog Wego post today,...I began writing it, went to check on my dear sweet Tazzers... I knew she was not well, and I was supposed to take her back today for more blood work.... and I prayed and prayed God would help her to hold on, or help her heal before it was too late..... I am worse than heartbroken and shattered at this moment......

#RABlog WEGO RA Blog Week - 1st Post September 21st,2015 - A Morning or Day in the Life of Ra and Me, Rhia

 Just as anyone on a "normal" Sunday morning, that goes to a worship service, or attends some type of Church, Sunday School Class, and Fellowships with those there, I begin at the moment my eyes pop open.

At times, even just before really being wide awake, the pain begins; along with the stiffness in my fingers, wrists, hands, ankles, toes, and now my lower lumbar/sacral spine. My first "event" is to get my green tea that is in the refrigerator out, and take my pain medications, along with a muscle relaxer, Meclazine to settle my stomach from some of the "dizziness" I often have, due to double vision, (doctors think from the RA/Lupus), and the feelings as if "I" am moving. Some may call it a form of dystonia. It gives me vertigo, and without my daily medication, I would look and feel as if I had not "control" over my body moving, swaying, and sometimes if I am sitting, I almost "gyrate" from the waist up.

I have a couple of other medications I also take with those, and those are just a few of the many prescriptions and over the counter medications I take daily. My mouth is just as dry as the "Sahara Desert" as the saying goes, from the Sjogren's, which usually can come in tandem with RA, Lupus and so forth. So, I try to drink some iced green tea, and get myself awake enough to decide what to wear and so on.

I used to be able to get dressed to go just about anywhere in an hour or less. Unless it was something extremely dressy and formal, an hour was more than plenty of time to get ready.

Now I must plan to take at the very least over an hour and that is not counting the shower I had the night before. I used to take a shower the morning of what I was doing. Now, I usually have to shower that night before, or by the time I take a shower, dry my hair, do my makeup, get my clothes on, jewelry on, and have everything done, I would be too exhausted to go! Kind of like the "spoon theory". I have so many I use for a day, and just showering, dressing, doing makeup. hair, and jewelry/accessories, would use up over half the spoons for the day. I have had to learn to get as much ready the evening before as possible, so I am not completely worn out by the time I am prepared to go.

I usually take a short walk outside and around my home after I get up. It is usually quiet time, and I just take in the sounds of "nature" all around. Then it is in to take ALL of the medications (not counting the ones I take almost before my feet hit the floor). Then I have my two pups, and I give them their medication at the same time. From there, depending on the day of the week, it may mean collecting all of the trash cans, getting them emptied and out to the curb for the trash truck to pick up. Or laundry to do, depending on how much I have, may need to be done. There maybe errands to run for myself or my Mom, picking up medications, going to the market, or any number of things that may come up in a day that I need to take care of.

I feel like I spend more time either making doctor appointments, going to doctor appointments, getting prescriptions refilled, picking up medications... and life some days seems to evolve around something "medical" in nature.

Even down to what I may decide to have for my meals that day. Cereal usually follows my morning medications, especially during the hot months of the year, and usually warm cereals, oatmeal, or cream of wheat are my breakfast picks in the winter. I on occasion on the weekends will prepare a "big breakfast"... like eggs, biscuits, turkey sausage or bacon, and even grits, hash brown potatoes, or cream gravy and at times I make pancakes. But, since for the most part my stomach does not "hold" very much food at a time, I stick with breakfast less filling.

When I stop to truly think about a moment of time in my life, whether a few hours, a day, week, month and so forth, honestly something about an illness or disease is never left out of the equation. I have to always consider how I "may feel" physically before making any definite plans. Even then, it could be I wake up on that day, and must either postpone or cancel something, because I am not feeling well. I feel as if my "body" dictates what I can or can't do any moment of my life. Everything seems to evolve around how I am "feeling".

Chronic pain and/or chronic Illnesses, all too often "rule over" and "take over" your life. They challenge you, they can come on and knock you to your knees when you least expect it. 

Each day, each moment, each breath that passes can mean a fine line between feeling "well" and being very critically ill.

#RABlog

#RABlog

Pain Awareness Month and Suicide Prevention Month - Do We think about just how badly chronic pain can be and for some, almost to the place of not being able to live with it....

This is so well put! WE, many of us, with chronic daily pain, the kind that without any treatment would leave you in bed, on the sofa, and without ANY quality of LIFE!!!!! Yet, those FEW who choose to "abuse" medications, cause a ridiculous amount of questioning, hoop jumping, "looks at us like we are "addicts" " and even many that all of a sudden can no longer GET their meds... as she put it... to HAVE A LIFE  ... we do not use meds to "escape" from living... that in itself was one of the best ways I've heard to speak about the people that abuse medications. But those that do cause harm by their own abuse, and making life almost unbearable for those that do everything correctly.... just to as I say, and the article says to have "life"... NO PAIN medication EVER completely takes pain away.... it makes us "able to deal" with the pain better, when it is "less" than unbearable. I have an implanted pain pump that my Pain Doctor implanted in 2010... and we have "tweaked" the medication in it over the years, if need be. But, I still have a script for "back up" pain... maybe I am having more pain than usual from a weather change, or from doing something in my daily life that may exaserbate the pain at times. Yet, nothing takes it away... it helps me deal with what is pain remains... it allows me energy to DO my errands chores, go out for a day to have a bit of "off time" and so on.... if it were NOT for my pain medications, I would almost be to a place that it would be "intractable"... more often than not... and in fact, due to a lower back lumbar/sacral problem, there have been at least two times in the last 3 years that it was like I have NO PAIN medication at all.... In fact I even went through and had a talk with my pain doctor. All I wanted to do it sit in the floor and cry, the pain was so horrid.... I went that way for weeks... and we found the problem... and now due to this abscess I am still not able t0 have surgery... but at times even with what I have, it can be to the point you wonder if you are not just going to go insane from the pain.  So, each time I see or hear about how many "abuse" medications and all they want to do to make it almost impossible for us to get our medications, it just infuriates me... for ONE DAY I would like to "hand over" my pain to some of those that think it is all "bull" and let them walk in my shoes for 24 hours... I wonder how they would feel, when they awake to stiff, swollen, throbbing hands, knuckles, feet, ankles, hips, pain down my leg, severe headache from Lupus... and see how long they could "tackle" the pain without any help from medications... If you gave them a week, I bet 95% or more of them would be begging for relief..... And I have had several people over the years ask me how I "cope"?  How do I get up and around with the pain and chronic illnesses, the fatigue, the swelling in my joints the stiffness, the pain that does not matter if you sit, stand, lay down... it is just there,... and by "faith" and "hope" and taking ALL of my medications as I am instructed, and trying to stay as active as possible... helps me to cope... my writing, my blog, being here on FB, my activism, advocacy, and my Ambassador roles... the AF, WEGO, Lupus Foundation, IFAA.... all of those and more, that give me the will to know I must FIGHT not just for myself, but for others out there just like myself or even worse.... Rhia Steele​

http://nationalpainreport.com/pain-awareness-and-suicide-prevention-8827504.html

http://nationalpainreport.com/

 

 

After reading this article I felt compelled to share it. This is one of the MANY complicated emotions when you are dealing with Chronic Daily Unrelenting Pain....

IFAA and the Walk for fundraising sponored by AARDA! To Help get a handle on Autoimmune Arthritic Illnesses!

I am not near any of the "walks". But, I wanted to show my support so I joined "virtually" the IFAA Team!

There are dozens of reasons why WE need as much support as possible when it comes to Autoimmune Arthritic Illnesses!

We need more research, more Rheumatologists, and Pediatric Rheumatologists also. We need better medications, hopefully someday with less side effects, and of course we desperately need to find a CURE! and/or STOP these horrid life altering, life stealing illnesses, diseases and syndromes well before they take over!

So, I invite you to walk, or walk virtually. Or give a donation, and you can "give" what you feel you can. Any amount is one more step for hope, help, research, medications, reasons why our immune systems go "haywire" and A cure.

I did not realize until this morning that the actress "Kelly Martin" whom I just happen to LOVE, is the National Autoimmune Walk Ambassador this year! Her sister who suffered symptoms for a long while and then was diagnosed with Lupus, that later took her at a young age gave Kelly a longing to try and stop these horrid illnesses.

I am an avid fan of Kelly's. In fact I record all of her movies on the "Hallmark Channels" and sometimes watch them more than once. I think she is a tremendous actress and an amazing woman.

Here is a link to the page where she has an open letter about her personal situation due to her sister's illness and why she supports AARDA and this walk:

http://www.autoimmunewalk.org/aawalk/ambassador.asp


Here is also a link to the IFAA walk Team Page!

IFAA Buttahflies

Here is my "personal page for the walk



http://www.autoimmunewalk.org/aawalk/participantpage.asp?fundid=1150&uid=5837&role=1

When You are Unable to be somewhere, participate in events, whether family, friends and your activist, advocacy things... the challenge is to NOT feel guilty or as if you are letting others down....

 

 

https://creakyjoints.org/blog/rsvp-blues-when-autoimmune-disease-keeps-you-home-saying-no-to-invites/#.Vfg6WntAzIU

 

A great article about just how we all too often feel - when we deal daily with Chronic Illnesses and/or Pain. The challenges of being able to be at events, be with family and friends... how we feel "guilty" for thinking we are letting others down... it is NOT our fault, yet, I know for myself, I feel guilty, frustrated and like everyone around me thinks I am just making this up and I am not all that sick... People in general see us outside the home, when we are "okay"... many do not witness those days, weeks, or even months that we are NOT okay....

 

Medtronic's Pain Pump Medtronic "2" has issues and needs to be "fixed" - Bothering me immensely this Pump has been a total Life Saver for Me!

 I've had the exact same pump in since 2010! In fact it will be 5 years next month, in October since I had it put in. I've never had any problems with the pump. I get it refilled about every 3 months, and it can always be adjusted, and has been a couple of times over the years. But, I can also "give myself an extra bolus" every 12 hours with the 1st "PTM" that came with this one. I was one of the 1st patients to get this particular one. I have a handheld device that after 12 hours, allows me to give myself an "extra" bolus of medication. I can hold the "Patient Treatment Manager" (I think that is what the PTM means) up to the top of the device and it sends a signal to it and if 12 hours have gone by, then it gives me a tiny extra dose, each time I do that, spread again over a 12 hour time frame!


I knew when the pump was put in, that after about 7 years or more, I will probably face having to have it replaced. The batteries can run out, but it can also be longer than 7 years also. Yet, when that time arrives I want to know I can get the same one implanted!


It has been one of the most positive changes in my life. I just don't know what I would do without it!










http://www.painnewsnetwork.org/stories/2015/4/27/fda-order-stops-production-of-medtronic-pain-pump#at_pco=smlrebh-1.0&at_si=55f813c00f886161&at_ab=per-3&at_pos=1&at_tot=4

Discovery Could Lead to Earlier RA Treatment — Pain News Network

Discovery Could Lead to Earlier RA Treatment — Pain News Network 

Sharing more great news in regard to hopefyully finding a way to detect RA and Osteoarthritis much sooner by other lab work!

IFAA Post and an article about the "Cost of Chronic Pain"

http://www.motherearthliving.com/health-and-wellness/mind-and-body/cost-of-chronic-pain-ze0z1404zhou.aspx?PageId=1


Gosh WE should ALL know about this one!!! BBetween astronomical prices of medications, physicians, (even WITH insurance), supplements, try having a "surgery"... I know that my "body" has parts in it, and has been "Overhauled" and probably have a "net worth" of $500,000.00 OR MORE!!!

 My 6 week stay in 2010 in two hospitals was over 100,000.000!!!!

And for each "replacement" surgery, you can bet on 25000.00 to 75,000.00 by the time ALL get their part...

Just the costs of labs, CT's, MRI's, any type of radiology procedure... I have a bill here for the Discogram... it was almost $20,000.00!!!!!!

And because I did NOT realize it was NOT filed as an "outpatient procedure" that would have already been 250.00 out of pocket, I owe almost 700.00 because it filed as a "radiology" procedure, so my part is 20%!!!!!!

And I am supposed to pay that off in two months???? ON a "salary" that is BARELY over 1,000.00 A MONTH!!!!!!

Hell, my TEETH, cost almost 15,000.00 when it was said and done....