Showing posts with label RA.Lupus. Show all posts
Showing posts with label RA.Lupus. Show all posts

Saturday, October 27, 2018

Colonoscopy and Endoscopy - Just another procedure to put us through....n Life with Chronic Pain, RA, Lupus & chronic illness

Going through the Ordeal to get Ready for an Endoscopy and Colonoscopy!


Also Barrett's which I have and my Anemia is getting worse every 3 months, and my Parathyroid Labs are all "off" also....


So, I started to see the surgeon on Thursday afternoon, to see about scheduling that endoscopy and colonoscopy... and about the time I was leaving the house, I "felt" one of those drenching sweats coming on, plus they were supposed to put the holter monitor on me for 24 hours while I was there... I almost called and cancelled, but decided I would "try" to at least get into the surgeon... 

and wait on the monitor... because the leads will not stick on my skin if I am having one of those horrible drenching cold sweats... so the doctor was running over an hour late! I knew I was getting worse, but fortunately it was not a terribly bad one, but I did put off the monitor and told them I would try next week... and I did get in, so I have the endoscopy and colonoscopy on November the 14th!!! And now the way they "clean out" your digestive tract is almost silly.... 

rather than drink that "lime stuff" like you used to, you get 2 32 ounce bottles of Gatorade or Pedialyte... 2 bottles of "Miralax"... and 5 Ducolax pills... and mix the Miralax in the Gatorade and drink it like a glass every 10 minutes until you are finished with it, this is at noon and you are "fasting" anyway, with jello, etc the whole day before", and then at 6PM you drink the other Gatorade and Miralax and I think in between take those Dulolax pills!!!! 

Good Lord I hope that does not make me sick... that is a lot of Gatorade, and I guess it helps to "hydrate" you, rather than used to, you would be almost dehydrated doing it the old way.... anyway, I just hope they can do it early in the morning on the 14th and get it over with... I've got to get hold of my son, and see if he can get off work to take me... of course they put you to sleep so you have to have someone to drive you home after it's done.... I still have not heard from the Endocrinologist... but I guess I will call myself and try to schedule an appt if I don't hear from them by early next week....


Friday, August 28, 2015

Chest Xrays, Cellulitis, RA, Swollen Joints, Fingers, Hands, Unable to take my RA meds, Lawns, Neighbors, and Dealing with all of the daily stuff of Life

Well once again we face another Friday! This week has been anything BUT GOOD... in about 4 billion ways, I thought I may just lose my mind, or the tiny bit of it I thought I had left.... FINALLY and who knows for sure but Urgent Care called yesterday afternoon and after over 2 WEEKS of back and forth from them to the Rheumy, I think they have the correct Order for the Chest Xray!!!! Sometimes miracles "can happen"... although lately NOT for me! I believe I mentioned I DID FINALLY FIND a Surgeon who is thankfully just over in Waxahachie to probably remove this lump on my left thigh. But, what I have NOT told the doctors at all, is that I have this other one that formed several weeks back on my right thigh, in just about the same spot. But, since I am seeing the surgeon a week From today, I felt I would bring it up then. BUT< once again I ran into another issue... now that lump that never really was "red" or what they call "agitated" on the outside, or really was never sore, now in the past few days, had become more red on the outside of the skin and it is extremely sore... and so it the one on my right thigh... not really red but very sore to the touch. Since I still have a week before i see the surgeon I called my PCP this morning and told them to let him know, and that I felt I needed another round of antibiotics until I can get in to see the surgeon. I fear now that the infection could be growing outward, and that is the very last thing I need right now... so I am waiting on a call back to see what they say. I hope he does not want me to come in... there is really nothing more to do, but get back on the antibiotics, and wait to see the surgeon,... and then I have to run over across town and get that chest Xray I hope done today. PLUS I DO have to take Mom's care to be inspected today, since they have made the changes in how we register and inspect our vehicles in TX, as of March 2015.So, we can't get the registration sticker until I get it inspected.... but not a big ordeal, I just have to go get her car, and take it to be inspected... I DID get the "bug granules" finally yesterday and I broadcasted them from front, back and sides all over my lawn. I HOPE that curbs the fire ants, which I have already put stuff on all of the mounds, but this other stuff also gets rid of other ants, fleas and so forth, which I can tell what I put out in the Spring has stopped working... thus I needed to do it again... ONE GOOD NOTE FINALLY... OR I HOPE SO... MY ECHOCARDIOGRAM CAME BACK THAT MY HEART FUNCTION IS "BETTER" A BIT, THAN WHEN I HAD ONE DONE IN 2011!!!!! NOW THAT DID MAKE ME HAPPY! But, as I told Mom, I "hope" the heck it is "mine" and is accurate!!! Knowing my luck, hell it could be read wrong or someone else's - anything is possible with me and my stuff.... nothing is usually ever that easy..... but if so, that means I should be good to go for the lumbar surgery dammit if I ever get RID of this damned whatever is going on with the lumps on both thighs... there is no way, no how they will do surgery on me until I am all clear of that, along with now I will NOT be able to get back on the Orencia or the Xeljanz UNTIL I am all CLEAR of infection!!! WHICH MY RA IS so MUCH worse! Both of my hands, wrists and fingers, I can barely use... I have hell from opening a jar, a lid, or anything, along with I can't carry stuff as well... my hands are just so swollen, even this morning worse than ever... my ankles, my shoulders, neck everything to do with my "joints" seem to be so much worse that ever... and I am extremely concerned... not only am I so stiff and swollen, the pain is bad again in my hands, fingers and wrists... PLUS I GUESS since my neighbor had chosen to all of a sudden ignore my existence... O am going to have to fix my lawn mower (the rope broke that pulls it to crank) fix that, and mow the lawn myself... I am sick and tired of seeing it like this, and I will be damned if I ask him... he has a "bee" in his bonnet over something, I have NO CLUE what the problem is... but my yard looks like hell and I intend on getting it mowed dammit... well I have to get dressed and get going... or I will never get all of this crap done... more later, and happy Friday to All!

Thursday, December 18, 2014

Missing Many of Life's Amazing Things ... through the Eyes of an Autoimmune Patient



Memories of What The Past Life meant back then, and How to “begin” Anew Once Your Life has been totally turned upside down and pulled inside out…

I started writing this yesterday evening. Then I worked on it some this morning. I have a great deal to add. But, I am in the middle of having the Flu. I woke up yesterday morning with the worst headache, even worse than any migraine... and my entire body from head to toe hurt and ached. I knew I had to been running a fever, thus I was. It started at 99 degrees, and quickly began to rise even after aspirin, Tylenol.... it was already up to almost 101 by the time I decided what to do. First I called my PCP. But was on hold at least 20 minutes with them. Thus even though I did get to leave a message for my doctor, I knew he would probably need to see me. The last thing already figuring I have the Flu, and then my Autoimmune system compromised.... I decided as badly as I felt to go to our local Urgent Care Center. So, I did. Thankfully when I arrived hardly no one was there and I got into see the doctor quickly. He did verify I have the flu. I got the Tamiflu script and he told me to be prepared for a horrible cough to come. So, he gave me cough medication to be prepared for that. Anyway, I wanted to at least get this much posted... and I promise when I am feeling better to finish it.... but here is the beginning of just how much your life changes when an autoimmune or chronic pain or illness comes along...


I had this come to mind yesterday afternoon. I was doing something in the kitchen and I got to thinking about just HOW MUCH life has changed within the past 20 years. Some of those things are okay to gone and blown into the 4 winds. Some although, have created turmoil in our lives, and honestly it scares the hell out of me.


When I think back just 10 years ago, Jim and I had first met, in 2003, on a Memorial Day Weekend. I was searching at that time for the “one” special person in my life that I could share everything with. I actually went to Seattle thinking I had found him. Yet, that relationship was never meant to last. As I’ve seen and felt now, I realized that relationship was never really meant to be. It was more of a stepping stone to get me out of Texas, out of the horror of Domestic Violence that had been dragging me into the black hole of no where. I needed a drastic change in order to get my own life back, to get a new perspective on life, and a new, The ”odd”  part of it all, is I went not truly prepared as far as my clothing, my attire was more for a lighter cold, and not a heavier cold weather. Fortunately, the weather was fairly nice at that time of the year (I had arrived in Seattle at 8:00 pm Halloween Night 2001).

I think back on the times even before Seattle, before the Autoimmune Illnesses began to rear their ugly heads. Those days are for the most part all gone. The years I could decorate my entire home for Christmas. From the kitchen, bedroom, to the living room, kids rooms, bathrooms and even outside the house. Everything was in a “Kris Kringle” theme. I was always so Christmas oriented, and I never wanted it any other way. That was just one piece o the puzzle of life, that always seemed to make sense. 

Never back then did I ever give a thought that life would be “different” and that I would not be in a situation that I could no longer do so many of my daily living activities that I had become accustomed to over the years. I had a few instances that due to Migraines I was to bow out and not attend a few things. Yet, never would I have dreamed within 10 short years, I would never be able to do so many of the things I loved to do again. But, it had and had happened.

I can’t blame it on anyone or anything, I’ve just fallen into a realm of life, that has robbed me of the beautiful things I used to be able do. This is an insight as to just how much my life, as well as many others lives, have changed from the bottom to the top in so many different ways. We don’t even realize how many things are never the same. I think we become so complacent in some ways, while our concentration then goes to other places where we never had to go. For instance, new doctors, all of the different diagnosis, medications, what we can do with diet, exercise, different and alternative ways to help ourselves feel better. I think for me I went into the “untrue” mode. I refused to believe I had a chronic illness or illnesses that would take my life and flip it all around. Then for many, we go from doctor to doctor, fighting insurance companies to pay, finding out some doctors that we think “should know” about our illnesses do not. Physicians had so “specialized” themselves to the point that one Rheumatologist may deal with RA, but not really treat Lupus. Another may deal with Lupus, but not really deal with MS. Multiple Sclerosis in itself a strange disorder. It is more of an “autoimmune illnesses that harms the nerve endings” thus often time a certain type of Neurologist maybe the doctor to see. Yet again some Neurologists know little or do not really treat MS. So, it can be an extremely frustrating, trying, wanting to give up time that will actually take YEARS in many cases to get the “right” physician, who knows the correct information, and can properly give you a diagnosis, that ultimately can then be addressed and treated.

So, a couple of days ago, I got to thinking about the “little everyday things” I no longer do. The list continues to get longer and longer. I no longer cook as much from “scratch” as I used to. Baking has always been one of my favorite things to do. An example is just about every year since we moved here in this house, I have made home made pumpkin, date, banana breads and more. Then one year I actually made “mini-loaves” of fresh home made baked bread right out of the oven. It turned out so beautifully. I also make sugar cookies, cut out and decorated, fruitcake from my own “family” recipe, fudge, sometimes peanut brittle, cookies with the kisses in the middle, and more. We always wrapped it all up individually in decorated plastic wrap, then made a “Christmas Sack” for each of our 5 closest neighbors. I was a highlight of our holiday. I spent weeks and weeks baking and cooking hand and home made everything.

This year things are so just under the radar of holidays, that we probably not give anything to the neighbors, if so it will be only a few slices of fruitcake. I’ve not made any of the breads, the cookies I am not sure if I will feel like it, especially now since I have the flu! I don’t do as much baking from scratch at all, but have had to go to boxed cake mixes and store bought frosting. Cookie mixes rather than me put them together myself, and same way with pies. I often buy the “canned” fruit, or creme - like key lime or lemon, then I do make a crumb topping for them. So, that is just one of the many things, I no longer am really able to do. Either fatigue, or being so slow at everything, or being in pain, or feeling ill… even my own “daily home” cooking has fallen below “home made” which is NOT good because everything is full of salt, sugar, even the “light”, “low fat”   or low carb stuff tends to be not that healthy at all,

I used to mow my lawn, and do all of the yard work. From planting, to gardening, to flower beds, and house plants, I did it all. Now I do well to half way rake up leaves, a couple cans at a time, and forget the mowing, weed eating, and even trying to hoe is very difficult for me.

I can no longer wear my 5, 6, and 7 inch platforms heels. I have loved those so much even before they became all the rage again in the last couple of years. I have 3 pairs of very high heeled platforms that I totally dream of wearing again. When i go into the shoe store it almost makes me sick to see all of the incredible high heels and platforms. yet I cannot even attempt
to think about wearing them out in the public. I would certainly now fall, due to my artificial knees, and taking a chance of a fall, just is not appealing when I have “severe osteoporosis”.    

Of course no snow skiing which was my biggest thrill. I can still somewhat play the keyboard, piano, and I can still band around a short while on the drums but not for long.

Some things I can do, but it takes me 20 times longer than it used to. If I am getting dressed to go out somewhere special I must start at least 4 hours early if not more. I am then lucky if I am ready on time, Even typing this, of course I also have the flu at this point, but my wrists, thumbs, hands and fingers are beginning to hurt and become too stiff to type. The brain fog hinders what used to be a mind that could spin around in 15 directions all at once, and I could multi-task and get them all done and feel wonderful as I did them. I miss college classes. I miss being able to walk 5 or even 10 miles a day. I miss traveling, vacationing, heading out for a weekend  get away.

I get sick of planning a day around being sick. I hate getting up and never knowing if I will feel “okay” or horrible that day. I am pissed that I can’t do things like put up my light fixtures, finish mudding the bathroom walls, painting the outside of the house, laying my flooring in my bathroom and kitchen and all of the DIY things I used to do on a daily basis, never giving a thought that I may not be able to do the little things, like get flowers for Christmas out to Dad’s and my Grandparents Graves. By now I would have Dad’s Tree out there all decorated… and Poinsetta’s for my Grandparents.

Sometimes it is difficult for me to type, to write, and to clip coupons. My hands don’t seem to work as well, and neither does my brain. I FEAR that if I don’t write my books (the next 2) very soon, I may lose the “brain power” wording, spelling, and aptitude it takes to write a book and get it published.

There are days that even the simplest words seem impossible to spell. Maybe the simplest sentence I have problems with finishing properly. I am one to NOT use the same word over and over again. But, without the Thesaurus, I would never have the brain as I used to have that remembered everything, no matter how large or small it was. Days I lose that ability to find them within my own thinking.  I used to be a grand speller. I had 100’s on every spelling test and then I won many spelling contests because I was so great as a speller. People cam and asked me how to spell a certain word, and used to I could rattle it off without hesitating.

Being able to learn new things. That was my forte’. Any and everything I didn’t know something about, and was interested, I wanted to learn. And, I did. Whether it was flying a plane, or knowing how one flies was remarkable to me. Even my “Annual Christmas Letter” that was usually all decorated with a border and colors for the typing, got left with me printing the letter on regular paper, in black and white, with no border. It was too much this year for me to deal with and I knew I needed to get the cards out before it was too late!                                                                                                     




More to come......

And thus it continues... the brain fog is so bad, I forgot I had already posted part of this... so here is more.....

Even at this, I am almost feeling like I got "off topic" of what I wanted to say... but I shall post this next installment....

It continues to be the “little” things I had enjoyed so much in my years before I became chronically ill. I was able to do just about everything from going to college full time at night, working full time, taking care of my two kids, a home, a mortgage, car payments, and everything that goes along with those things.

The day that I knew for certain I would no longer be able to hold down a full time job anymore, was on of the most depressing, the saddest, the fearful, time of my life. I had no idea how I would make it in Seattle. Jim and I had already met, but he was living with a friend over by Lake Washington, he had a full time job, that actually was knocked to part time, so he had his own portion of rent and bills to pay. I was very leery of anything at that time…. from even thinking about Jim and I, we had just really met, to finding another at least part time job. I had rent monthly, and a car payment monthly, plus my bills which were not that bad with just me. So, I looked actively for a job daily, from the paper, online, asking around, and even went for a couple of interviews both at banks. Both seemed like great positions, but they also seemed very stressful, and it would mean me working MORE hours that I already had been working, which was one reason I got ill in the first place. So, I was offered both, but turned them down graciously. This was about time my lease for my apartment would be coming up. I knew that the woman above us was not thrilled with our TV (which was a 16 inch tiny TV with an antenna inside, or she would gripe if we smoked outside on the deck… said she could smell it… well there were lots of wooded areas, and honestly I think she was just jealous that I had found someone that was coming over fairly often. Anyway, the problem was my own next door neighbor. He was the one with the very loud music and television. But I knew I needed to go and not sign into another year’s lease. So, when it came time to make a decision, I decided to take my stuff, and move in with Jim and his room mate. It seemed “smart” and cheaper at the time. We did have some beautiful memories of Lake Washington, and it was an incredible several months we spent there before we decided it was more than time to move out and find our own place. We did just that. We moved just North of Seattle into Everett. Smart move, loved our apartments and the manager was such a sweetheart….

 It seems from there things began to look brighter… and then in 2005 March, Easter Sunday, I lost my Dad to a brain infection from a knee surgery that just never turned out right. He had that surgery on Feb 15th 2005 my birthday. So, there is always mixed emotions when I try to celebrate.

We found ourselves going ahead with our marriage plans in Vegas about 10 days after going back to Seattle, for I knew Dad would have wanted it that way. Then we also knew it was only a matter of time, and I would need to be back in Texas, close to my Mom. Being an only child, and my Dad took care of everything, Mom was not even able to put gas in her car.

At the time, I had already hired an attorney, and was in the process of my 2nd appeal for my Disability, Social Security benefits. After a short time in California, for a job Jim got that was not working out, we loaded up the U-Haul once again, and headed for Texas. We had no clue what we were going to do when we got there, but we knew we had to come back. So on December 19th, 2005 we arrived in Ennis Texas. I had already checked on apartments, so luckily we got into one just a couple of days after arriving. They were so nice and hurried to clean it, touch it up and laid new carpet. So, we celebrated that Christmas in Ennis. Actually both of my kids, and my two Grand children got to come up and we had Christmas at our apartment. We had bought the very last “real” Christmas tree in town, and it was scrawny but we decorated it, and it turned out beautiful.

We spent a year there, and in about August 2006, I got word I would need to make a trip to Seattle for my “hearing” for my disability. We flew back, not knowing what to expect, and when we left I did not know for sure if I had “won” my case or not. It might be a month before the judge sent me the letter. But, I could tell from his comments in the hearing that he probably would give me a favorable outcome. Thus about 5 weeks later, I got my letter saying I did get my full disability and they paid me retroactively back from 2004, so I got a fairly good sized check. We looked for a house, small, but something we could work on, yet not too much work, and thus we found our house in December 2006, and got to move in after much DIY renovations, paint, redoing floors, and so forth, at the end of January 2007.

My disability then meant I had Medicare. I took a Medicare Advantage Plan, and then the real fun began. I had 8 surgeries in  2007 alone. Two total knee replacements, a shoulder replacement, wrist surgery, bladder surgery, my other shoulder had been scoped, and my hips injected a couple of times. My left elbow had surgery, and the right one was giving me issues, but I was fortunate enough that my right elbow and so far both hips have been able to stay together enough that the corticosteroid injections have kept me from having surgery.

In 2009, I went to a new PCP (Family doctor) that after a couple of months of seeing me, did a great deal of blood work. I had even mentioned Lupus, RA, or some other type of autoimmune disorder. He thought so also, thus the blood work came back showing I was positive for probably Lupus, RA, and later confirmed I had Sjogren’s and Raynauds.

After those diagnosis, things went nuts from there. Rheumatologists, several that really were not specializing in my type of issues. The pain had already sent me to a pain doctor, who was treating me for the chronic pain, migraines and all of the pain that went along with the AI illnesses. In 2010, he made the decision I needed an “internal pain pump” to try and get my pain more under control. So, October 2010 I underwent yet another surgery, having it put in.

All of that and more are why my heart breaks when I watch someone on Television skiing down a slope full of white powdery snow. Or, when I don’t feel well enough to go out to the store, or to even sit here and type. The brain fog causes me all kind of issues, from having to make list after list …. Even writing this, I did not recall that I had already posted a portion of it on my blog….
                                                                                              



Wednesday, November 12, 2014

Ennis Daily News Local Paper Arthritis Foundation and Myself - Article

After lots of jumping through hoops due to out local paper having new people coming in, I got the article about myself and the Arthritis Foundation in and published this past weekend. I didn't realize it was printed, because "Rhia's Law" if it will happen, it will happen to me... I didn't get my paper thrown that one day, out of ALL days, that one day I didn't get the paper as usual. That NEVER happens usually....


Anyway. I will thrilled to see it, and also thrilled to hear one friend of the family who told us about it this morning at the doctor's office, which is how I found out that it had been published!!!

I went straight to the paper and picked up a copy, and when I went into the market, I had several people stop me and say they had seen it in the paper over the weekend!!!!! Which made it even better!!!!!

I am kind of upset that they "shortened" it a bit, because it was longer. But, I think due to the fact he had left it out, and it had not been published when I first sent it to them, he made sure he got it in immediately.

Again, I owe so much to the Arthritis Foundation and especially to Laura Keivel, who has truly made me feel that I have found "my voice" in being an Ambassador for the Foundation. "The Lord Willing and the Creek Don't Rise" as the saying goes, I hope to be back in DC, for the Annual 2015 Summit on the Hill, in March again. If at all possible I plan to be there every year my body, my mind, my spirit, and everything involved allows me to...

Thursday, October 30, 2014

A Bit "Bass Ackwards" - Going to be a post from about a week ago... Topics for Blogging in November - Feel Welcome to Join in...

I had mentioned in a post about a week ago that last year in November one of our Health sites had put on a "30 days in November - 30 different posts each day event". I had actually thought it was for this coming November, then found out it was actually last year they did it rather than this year of which they done in 2013. So, I decided it would be a good way for me to find some "subjects" to post on that maybe a bit different, as well as getting all of you to jump in and join me. I said I would post some "subjects" for the days of the week, to get us started, and then please if you have any subject that has something to do with illness, medications, doctors, diseases, anything medical feel free to tell us your opinions.

So, I am going to kind of post the subjects that were from the last years November posts, so I can get us started with a few ideas.

Here We Go:

November 1st - IF you use "smart phones" or an I-Pad, I-Pod etc and are into "Apps" what is your favorite medical app? Do you keep up with your exercising, or calories, or do you use some type of to keep up with any type of health problem you have? If so give us the name of them, along with the reasons why you like those particular apps. If you don't use an application, then name a online site or sites you may use to keep up with information on health.

November 2nd - How about a "List" of things you "Know" you can do...

and others you "think you may do in the future"...

i.e. (I KNOW "I can tell my own personal health story to others")

vs. (I "think" I can cook, clean, go to the market, and wash the car all in the same day") - kind of a "realistic" look at what you CAN do in your daily life, vs. your sometimes a bit "unrealistic" view of what you WISHED you could do or still do in your daily life"

November 3rd - Do you have a "Mascot"? In other words, my "Mascot" is a hummingbird. Why a hummingbird? Because they can go any and everywhere fast as they can fly, they are able to bring beauty to our scenery. They don't harm a thing, and the bring joy all around when they appear around me feed out of the feeders I have up for them. So, do you have a "mascot" or something that represents beauty, strength, tenacity, wellness, and wholeness. Or possibly is there someone or some thing you might like to be, or something you maybe able to do, such as float like a butterfly, or someone you might like to be...

November 4th - How do you Feel about "alternative medicines" and do you use them?


November 5th - What are 5 things you can do that you thought once you were chronically ill you would not be able to do once you were diagnosed with a chronic illness/illnesses?


November 6th - Name 4 things that you are NOT ABLE to do anymore since you have became ill, that you truly miss being able to.


November 7th - Do YOU take YOUR MEDS as you should daily? Or do you take them on a "hit or miss" situation?


November 8th - Do you feel your medications are working to help you? If so how do they make a difference? If you feel they are not making you better, have you spoken with your doctor to try and change things around or do something different?


November 9th - How do you handle those that don't "get" what "invisible illness" means when you run into them? I am sure that most everyone of us have ran into those who "don't" truly understand or may not even "believe" we are chronically ill. Do you have your own  condensed "story" that you tell them, or do you just ignore them, put it off as "ignorance" and leave? Or do you some days feel like just "going off" on them and reading them the "riot act" when it comes to their own "stupidity" about chronic pain, chronic illness and how they treat you? I feel I've been through ALL. There are "days" I totally have the patience to "explain" a bit, and then there are times, I just want to YELL at them?

November 10th - Throughout your road of illnesses, diagnosis, medications, doctors, pharmacists, what was the most impressive turning point or inspirational moments in those times...how long have you been chronically ill?


So, those are a few to get you and I started. If you have ideas you might like to see discussed feel free to put them here under comments so we can see them. I will "answer" more of these myself also.....

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