Thursday, September 24, 2015

#RA Blog Week WEGO Day 4 - 5 things I have learned About Myself since Diagnosed with RA

Another great subject to ponder! What 5 things I have learned having Rheumatoid Arthritis?


I am sure MANY and/OR ALL of us, could state many, many more than 5 things we have learned over the course of days after you are diagnosed with RA.

I've learned that even through all of the fatigue, all of the complications, medications, turmoil, the "loss" of what a normal life had been before RA was for me, that I am MUCH STRONGER, and I can DEAL mentally and emotionally with ALL things than I used to think I could.

I can "handle" helping my Mom, running errands at times, shopping, and all of the usual things we all need or must do in a day, week, month or as the years go by.

I also have had to "deal" with a new normal. I've not been sure if I could truly deal with all that having any chronic illness and/or chronic pain when I was diagnosed. I cannot DO all as I used to be able to. I've had to give up many things I loved so much. Going on an all day shopping spree, and maybe just window shopping, but I was able to go, and then come home to get ready and go dancing, or out to eat with friends.

I no longer CAN do those things, but I have found out that I can live with NOT doing some things, yet I've learned new things that now can occupy me, like advocacy, activism, and being an Ambassador. I learned how good I am at being in the realms of helping others go through what I may have or are going through too.

I've learned that there are BILLIONS of places online to get information, do research, and find out any and everything you want to learn about your health issues. But, I have learned to "watch" carefully some of what I see. NOT ALL of the information out there in Cyber Space is true.

I have to learn how to give myself injections. I also have had to learn "where" and "where not" the lab people can "stick" me to draw blood. My veins are tiny, and have lots of "valves" in them (something else I learned) thus I have about 3 places that they need to use (if they will listen) or I have to be stuck several times before they can "hit" the spot.

I've learned how to improvise, and find different ways to open a jar lid, or a can. I've had to make sure I take enough reusable bags into the market, so they are not too heavy for me to carry. I've learned to "ask" for help, which is so difficult for me to do. I just dislike having to ask anyone to "help" me, yet I have learned at times someone else has to do it, because for one reason or the other I can't.

I could go on and on about what I have learned, think about, and also cherishing each and every moment of those that I love and hold dearly. Time is truly precious. This week for me has proved that 50 times over for sure.

http://www.radiabetes.com/leading-prompts-for-rablog-week-as-of-august-18-2015/

#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. 
















Wednesday, September 23, 2015

#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


Tuesday, September 22, 2015

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......

Monday, September 21, 2015

#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