Showing posts with label Fatigue. Show all posts
Showing posts with label Fatigue. Show all posts

Saturday, November 23, 2013

Living Life In An AutoImmune Illness "Zone"....

Life as we have lived it... and now Life as WE that deal with AutoImmune illnesses Live it Differently  - Yet Happily!



As some of you know, I live in TX, just below the Dallas area. WE are having our first blast of very COLD weather today and over the next few days. We are now under a Winter Storm Advisory, with possibly sleet, ice, and some snow. Usually we get more ice than the fun stuff, snow. As I was talking about on FB, how I can "predict" the weather almost better than the forecasters can, the memories came pouring back to me of when I was able to go snow skiing. For years, before I had all of the illnesses happen, we went snow skiing, every year the week of my birthday. It was our annual vacation, that I saved up for as soon as I got home from the one we were on. I put money back in a "Christmas savings" fund every week for the entire year. Part we used for Santa and Christmas and the other was for our trip. Those are still some incredible memories for me. That was a time when I was on those skis, I felt completely "FREE". All of the snow and the forests, and just a quiet feeling of peace always came over me as I started down the mountain. Don't get me wrong... I took some hellacious spills. We always made videos so we could laugh about each other and our "Oh Crap" falls. You knew when one of us was going to take a very funny fall, because "Oh Crap" was all you heard! ;) Anyway, below is the post from Face Book that I wanted to share with everyone here. 


This may not sound like a "post" about autoimmune arthritic illnesses, yet it has all to do with then for me. Now I can no longer snow ski. In fact there are many things that have been crossed off my list, because I no longer do them. Mowing my lawn, and tilling the garden. Going to the lake and being in the sun. Making plans like a trip for something to do months away. I never know even a week before something is planned if I am going to be able to go or not. There are times I feel so bad that I cancel doctors appointments. I am just too fatigued to go, especially if the appointment are in Dallas. 


This comes to the place of why I can't do things any longer. It is certainly not age. There are MANY people I saw on those slopes as Wolf Creek Pass that were in their 70's. I am sure some of them lived close, so they have much more practice. But it is just the point "age" does not necessarily cause someone to stop doing things they enjoy doing. As you are reading this, I am sure you are thinking back to the times that are special to you also. Vacations, visiting family or friends, gardening, riding a bike, just a number of things that so many love to do, and do it. Age is not the factor at all. 


But, having an illness that can even strike when you are very young, in your teens, can stop you from doing many things that you loved to do, or would love to do. Is it a difficult thing to handle? You bet it is. I know I speak for not just myself but ALL of us with an Autoimmune Arthritic Illness, or any type of Autoimmune illness and/or Chronic Pain/Chronic Illnesses such as FM and CFS that also take away so many things in life that either we once took for granted; or at least never gave a thought that we would not be able to do them "the next time". Yet, it can strike anyone. Even though "women" are probably 80 more times or more to come down with one of these illnesses, men are also victims of these diseases. So, they do not discriminate when it comes to gender, age, or race. I have read articles and I am sure to do those studies that African-American people are more prone to these illnesses such as Lupus than other genders. I am sure researchers have been studying that one a great deal to find out why a nationality would make a difference. Also, why so many more women are much more likely to get the disease than men. 


My point to this is one, I did have some great memories flow through my mind when it comes to snowy weather. I also have these "blasting" memories of how much these horrid diseases take away from our lives. From changing relationships, families, jobs, and everything about your life basically, all of us can't help but be angry at times about it. Even though like myself, we come to accept it for the most part, I still feel at times like a piece of me has died... has left me... and changed me forevermore.


WE do learn to deal with it. I have in most ways. You find ways to compensate for what an autoimmune illness takes away. You learn new hobbies, or a different way to do them. You discover another way in a relationship to be close, and educate your spouse, and your family so they will truly understand the "why" of the things you can't do. 


As I often talk about my life, a flowing river, where there are bends, turns, white rushing waters, and then the bridges I flow under. The climb to the top of life's mountain. I scratch, crawl, and inch my way up, and sometimes I slide back down, as the rocks and stones may scar me, I still look up and know that is where I am supposed to be. 


For the rest of the year, and into the next year, I hope each of you who suffer and are inflicted with these still misunderstood life altering illnesses, such as RA, :Lupus, Sjogren's, MS, Still's disease, MCTD, UCTD, JA, pernicious anemia and the 100 other AI diseases out there, can look UP and reach up to see that you also can stand atop your own "life"s mountain".... and reach up to the stars... and feel whole again... even if that means you must "change" how you enjoy life in a new way!!!!



This below is a Face Book post from this morning... I wanted to say it also along with the above writing.... 


 I imagine you are probably getting it up there worse than we are. they have changed the forecast so many times the past week, I was not sure what it was going to do.  But my "bones" always let me know... My thumbs and fingers have been extremely bad this past week or so. Not just pain... now it is more of them not wanting to bend, I have like almost "zero" flexibility. I can't hold onto things That has been going on for a while now. That is partially why I suspected MS along with all of the other ailments. I have just lost so much grip and strength in my hands, arms, fingers, and I notice it lately even in my legs. IF I am up for a long while at the house doing things, or I go to "Wally World" and walk for a long while in there, my legs feel like "rubber bands" of jello ... I feel as if I am going to just collapse. I guess partially illnesses, partially all of the surgeries, and then I guess I have to account for getter older!!! Even though that is NT one I really want to ADMIT!  Kind of like my memory... if I forget, or can't remember, I blame it on the brain fog...  better than saying maybe I have dementia... You stay warm up there and out of this weather... and of course avoid all of the "no driving fools" that try to drive in ice. No way most Texans from in this part can drive on ice. HAHAH Many of them can't drive on dry pavement, much less wet or icy!!! Speaking about "black ice" on the roads. One year we were coming home from snow skiing in Pagosa Springs, CO... at Wolf Creek Pass (some great memories of snow skiing for me)... we left Santa Fe... and already knew it was a possibility the roads could be bad. We got to the main highway from Santa Fe (I-40) to head to Amarillo state and all of a sudden we felt the van just slip a little... it was a solid sheet of thin ice on the roads and of course you can't see it. Anyway, we slowed down to a crawl. In fact we happened to have borrowed a friends van so we sure as heck did not want to be in a wreck, much less a friend's vehicle.. suddenly here comes an 18 wheeler SIDEWAYS beside us just flying past. He jackknifed it into the medium and then here comes several cars, and they were not expecting it. Each one that went around us were in the ditch when we got up ahead. In fact, we drove on to Amarillo, but it took us something like 12 HOURS to get there. We called 911 and reported the accidents, but the entire way there were cars and 18-wheeler in the ditches. It was nuts. Believe me I felt that the Lord was helping to drive that van for sure.

Tuesday, November 12, 2013

A "New" place called "Off the Cuff" on my Blog and the First Official Post on It!


I hope all of you have a had good past few days. If you have "missed" me, as I said on Facebook, then I am happy to know you did! LOL! If you didn't then that hurts my feelings a bit. ;)
                                                 

"Off The Cuff" 


As I wrote on FB, Mom and I were gone overnight to the Winstar in OK! By the way, if you have not been there, or have no idea about the place, well, it makes some of the casino's even in Vegas look tiny!!! It is supposed to be the Biggest Casino in the WORLD!!! And if it isn't they are trying their damn hard get there. It is well over 2 MILES to walk through it from one end to the other! You ca n imagine when you walk through the slots for hours and hours how much exercise you get! AND IF IT IS NOT big enough, they are adding yet ANOTHER hotel (They have 2 and a smaller motel), plus adding about another 100 or more slots. I just cannot fathom to tell you how large it is. I've been to Vegas and as far as the "casino" itself, I don't think any of them are as large.

Now, for one. I had an idea this morning (through all of the fog that is in my brain) that I would do something called "Off the Cuff" in my blog. Mainly I write about Autoimmune Arthritis, Sjogren's, Lupus, Chronic pain, illnesses and other AI diseases. I post all kinds of things from the latest information about treatments, articles from some of the foundations, and so forth. But, I also like to throw in some of the more "personal" pieces of me. I talk about my own illnesses, and treatments, plus all of the things that go along with them in life. I have always wanted to "help" others "see" that through my own experiences, they also can have a "good life", but NOT FEEL GUILTY about being "chronically ill". It is very difficult to go through life, with a daily illness and not have it "consume" you. I know, because I have to work everyday NOT to allow it to do so!

So, I wanted to say first of all, I am thrilled for everyone that makes an effort to come here. I hope that since I have given the blog a whole new look, and the way you can see it, that it will be much easier to read, and use. So, that is my first step. Bear with me, because I know I will be making more changes as I go. For one, I will be adding more URL's that pertain to the Autoimmune Arthritic Illnesses. Along with treatments, non-profits, places for you to get information on them and so forth. I am also adding other "blogs" that I enjoy. They are also about these illnesses, how they effect their lives, and they can help you understand some of the things in your own life that happens.

Okay, on this first "Off the Cuff" post….

Mom and I went to Winstar in OK, as I mentioned above. We left early Sunday morning, and drove arriving about 10 a.m. It is about a 2 and a half hour trip. So, at about an hour and 15 minutes of it, we have "our morning" stop every time we go. There is a "McDonald's" at the half way point we always stop and get our "breakfast"…. LOL!!! Usually it is the same. Biscuit and sausage or an English Muffin and sausage, plus coffee! We are "big spenders" as you can tell! It also gives me a moment to get out of the car, rest my legs etc, especially if I am doing all the driving.

From there of course as I said above the place is "Gianormous"… if that was a word! So, we have our particular door we park at, and as always that is our first stop. We were spending the night on "their dime" this time. Winstar had sent us free rooms for 2 nights, thus that is when we stay overnight. Which is better for me if Mom and I go alone. I don't get so tired out from driving both there and back the same day. Well, we played for hours and hours. In fact, I pulled out a $20.00 bill when we arrived. At 4:30 that afternoon, I STILL had my 20.00 plus some on a ticket! LOL! So, I was in good shape in that respect. It is just hard to believe how many people are there, and how huge the place is. Around 2:30 pm earlier I had went around to the hotel that is "attached" to the Casino. (They have a brand new 500 ROOM one behind it!), checked in so we didn't have to worry about that later. We didn't even go up to the room at that time. We went back to play, then ate around 7pm, and by 7:30, (I had pulled a stupid stunt and wore the "wrong" shoes this time), my feet were hurting so badly, I thought I was going to have to go barefooted to get the car, take it behind the casino to park at the hotel entrance, then let Mom out with the bags, parked it and then finally got back in.


  Anyway, needless to say, by the time I got up to the room, my feet were in such bad shape, my little toes were almost bleeding, and I had two "stone bruises" (like blood blisters) under my big toes. I had worn a pair of black dress heels that are a bit "platform". I have a brand new black and grey striped very long skirt I wore and needed those heels really to wear it. But fortunately I always take another pair of shoes, which I took my sandals so that way, I can wear those when I have my feet worn out! I know stupid, but I know you "girls" understand what I am saying. I so rarely "go out" like that, so when I do get to go, I want to be "dressed to the nine's"… So, for me it was a huge ordeal to get to dress up and wear those heels too. Of course I am paying the price for it, but still it was "partially" worth it… :)

Anyway, a couple of "odd" things that happened. First of all, we had already gotten to the room, had talked, changed clothes, and was watching television. Mom was already asleep, and I heard this "KNOCK!!" at our door. Well, I knew there should be no one knocking, and I looked out the peep hole, and saw no one. I just figured someone was at the wrong door by mistake, and went back to bed. Well, it happened 4 MORE times that night! Each time not a soul was there, that "I could see". There was no way I was going to open that door at all, and it was dead bolted and locked down, so I was not really worried. I guess I should have called the front desk, but it was wee hours of the morning and I just said to heck with it and went back to bed. The one thing I did realize is that our room was the first room out of the elevator as you began down that hallway. So, someone could knock, then just step around the corner so you could not see them, and maybe they thought if they knocked long enough someone would be stupid enough to answer. Plus even though the place is huge, I also know at times, Mom will even say, that sometimes a "guy" will be looking at me, and of course I don't see it. I DO watch my surroundings of course when we go alone, but as far as noticing someone "watching" me while we gamble I am not aware really, but she is. So, when we checked out yesterday morning I told them, and mentioned where we were as far as the elevator. I kind of got to thinking about it on the drive home, and felt like possibly someone noticed we were "alone", not had anyone with us, like Jim in other words. Maybe someone did happen to be watching and followed us. Then thought maybe I would be stupid enough to open the door if they knocked enough times. I thought about it because when we got in the elevator that night on the way up, a guy got in right behind us. He saw what floor I pushed, and when I asked him what floor, he say the same as we were on, the 11th. Well, at first it did not really bother me, but the guy just kind of acted "odd". Plus I don't recall seeing him go down "either" hallway… you could go left or right after you got off the elevators. Our room was just off to the right, by them. So, it dawned on me, he may have followed us from the Casino to the elevators. I was so tired and my feet hurt so badly, that I probably didn't think about it. I had left Mom in the lobby with our bags, and went to park the car. Stupid me, didn't think about just letting the valet park it. I was thinking I would get in the handicapped place and it would be close. Well, hell they were all taken of course, and I had to park a good ways off. But, I thought he may have seen me let Mom out and then followed us as we went up. Maybe not and maybe it was someone just being as ass. But, usually in a Hotel at a Casino, there aren't kids, and at that time of the night, people are either asleep or down stairs gambling, and why our room???
Needless to say, I did not get much sleep. Between the damned knocking, and my feet itching and burning… by 4:30 (my usual wake up time) I was up and trying to get a bit of coffee down me (which their coffee thing in the room sucks)… so we could go down to find breakfast. That was another thing. The Casino built another HUGE buffet. BUT, they actually closed the other one, which they need both. And the new one does NOT serve breakfast at all. Yet, not one soul in the casino could tell me where they serve breakfast! It was nuts. So, we went down and decided to just check out, get the car, put our bags in it, and then drive around to play. Well, low and behold, right across from the registration desk is a brand new restaurant, and a very nice one, with linen napkins and the whole nine yards. In fact I think one of the glass pieces they had was a "Chihuly" piece, and it was totally amazing! Anyway, we had a wonderful breakfast, I got the car, and we drove back around to the front of the casino where it was closer for us to get into it, and then leave when we got ready. The Hotel is SO FAR away from the front entrances of the casino, it takes something like 15 minutes just to walk back to it. Thus moving the car is definitely a must.
The other "odd" thing that happened was just terribly weird. Mom and I were playing and I turned around to see where the nearest place was to get a drink. I noticed two or three of the main casino guys that are on the floor to help with machines etc if something goes wrong. They were standing around this man, who had been playing on a machine to the right of me, across the way. They were really having one "serious" conversation it appeared, so I figured maybe the machine grabbed his ticket, or something like that. In fact, after I got up, got us some tea and came back, my machine "fouled" out and took my ticket and would not play either. I waited almost 45 minutes for someone to come fix it and that was after asking 4 times. Anyway, after these men talked to the guy playing for awhile, I noticed a "security guard" standing right there by this guy. He kept on playing and appeared to be the same machine, but that security guard did not leave his side. I even asked him if he could get someone to come help me, and the entire time the guy kept playing, but that guard stayed there. That was very strange. I never did figure it out. Anyway, just odd for sure.

We had again got over to the Casino EARLY by about 7:30 or a little after, so by 1:00 pm, I knew I had a drive ahead of me to come home, so I was about ready to leave. LOL, I think Mom would have stayed if I had said let's stay, but she does when she is NOT losing, and she is winning a little …:)

So, we walked past the "high rollers" room, one of several they have. This one is mainly $5.00 and $1.00 slots, and of course they have others with the $10.00 and up. Anyway, she wanted to go in and look around, so we did. She decided she wanted us to put a hundred dollar bill in one of the dollar ones and play it! So, we did. We played on several of the slots in that bank of dollar ones. She had so much fun doing that. LOL, of course we were not fortunate to win, but it was cool to watch her have a great time.

We left after that, and traffic was a bit heavy through Dallas, but we made it home without a scratch. I was glad to be home, and my two dogs were just so happy! They just would not leave my side. I was glad to see them and Jim. I had missed him and hated he did not get to go with us this time. He usually does, but he still has the neck and shoulder ordeal bothering him, plus he is trying to catch up on work also, so he decided to stay home this time.

Anyway, that was my Sunday and Monday, and it was good to get away; although when I get home, then I feel like I've been gone a month! It seems I am SO FAR BEHIND… with online stuff, my volunteer stuff, my blog, email, doing laundry, cleaning house and it never ends… and then I have not been to the market for my "monthly huge" bill of groceries, so I have got to get coupons in order to do that. I am so far behind on my "stockpile"! It sucks!!!!!

Also, one other thing. I may have mentioned my "lump" on my left lower abdomen several times. But, as I said, my brain fog is bad today. My brain is trying to swirl and take in about a million things I need to do, and I just can't get it all straight. I went of course to the PA, a sonogram, a Gynecologist, then back to the other PA in my PCP's office. She, the last PA, FINALLY found out I do have two hernia's… yes not just ONE, but TWO of them!!! The left one of course is what sent me to be looked at. Honestly, I really thought it might be a tumor. I have "stomach cancer and colon cancer" in the family, so I was kind of concerned. Then when the sonogram showed nothing, honestly it concerned me more! I have to see a surgeon and was supposed to go tomorrow. But, I am postponing it until next week. I've got so much to catch up with, and I can see him here in town on a Monday or FRiday, rather than having to travel out of town, which takes more of a day up. So, as I find out what the deal it I will let you know…

Okay, other than I am SORE, TIRED, and BRAIN DEAD… I am happy Mom and I spent the time together…

I'll get my head back on straight in a day or two…:)

Rhia


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