Friday, January 12, 2018

SEVERE SYMPTOMS many and My Own Delve into Babesia, Chronic Lyme, Co-Infections from Lyme, Cat Scratch Fever, Drenching cold sweats

I have thought about it since I got up once again at 3:30AM, which is better than 2:30 the past couple of days... and while I was watching TV and then went to do a couple of things in the kitchen, (and the weather is extremely WINDY AND COLD, TEMPS ARE AT 25 THIS MORNING AGAIN)...

I given MUCH thought to "all" of these "symptoms" that I've been having. I had even bought one of the "smart bands" that keep up mainly with my "heart rate"... since it is so bad about being "low" if I take my Metoprolol that I take for the "extra beat", they think it reduces my heart rate, and then that is what causes the SEVERE cold, drenching clothes, shivering sweats, of which NOW I've had two of them so BAD, yesterday and both during the day time this time, which is odd, usually they happen at night, that my hair, my clothes, a jacket I wear inside if it's cool and my huge robe was "soaking" wet.


I am totally drenched when I have some of them that get bad.... anyway, it "makes sense" that my body "reacts" with that "type of sweat" to get my heart rate to increase, thus why I am even giving thought to a pacemaker. Which they are so tiny now days, the ONLY thing is once I have one, then it is THERE for the rest of my life. I won't be able to "take it out" someday and not have one. My Cardiologist and I talked about it when I saw her a couple of months ago, and she gave me information, plus Lourdes Villegas Anaya has one so she has talked to me about hers, and I've of course researched them myself. "If" that is a portion of the problem, and then after wearing this band the past 3 days, today will be day 4, I can "see" anytime what my heart rate, steps, if I walk, run, (never will happen that I run -LOL BEFORE I ever had joint problems etc,


I was never a "runner") anyway, you get the message... I've noticed that my heart rate tends to be "erratic" ... just in general. And I am going to look into it more today, because what I am "seeing" could be "normal"... I just thought it was "off" yesterday BUT I was in one of those horrid, nightmare of a cold sweat for hours and hours yesterday...


I was still not so sure, with the way I feel that maybe I do have the flu in some way... anyway, I wanted to do some looking into the "multiple" symptoms I've had especially over the past about 6 weeks, with the EXTREME PAIN, in my joints, muscles, the severe headache, and even though I had the injection and then now I am still on the step down of Prednisone, that I go today to 2 pills for the next 2 days... so I've done 4 for 3 days, 3 for 3 days, now 2 for two days, then 1 for two days, then to a half for 2 days.... yet, the pain was so bad after about the 5th day after the injection, so I had it a week ago today, and over last weekend I felt "better"... then it hit me late Monday evening, and then Tuesday and Wednesday,


I was ready to sit in the floor cry, scream, the pain was just horrendous. It was my legs, into my hips, it was my shoulders, especially the right one, my neck, which worries me because I have to wonder if I don't have a "failed cervical neck surgery" or another disc fractured or something... The problem is there is so many "symptoms" and then there are the "medications" to take into consideration.... ONE of my ideas is that the "Acterma" for the RA


I started about in September is NOT working as well, due to I am not on Methotrexate anymore. They took me off of it, about maybe even a year ago or more, because of the severity of the infections, especially when I developed the "cellulitis" in both top thighs, and it abscessed and i went to wound care for over 6 weeks in DALLAS every week, to have those "debrided" and redone.... I thought they would NEVER get well and I still have almost like a quarter sized scar/a bit of an indention on both thighs where those were.


Here is more information and more thoughts on some of the things I found from a search of symptoms and so forth...


 Well I have to say, even after a "short" research into my "symptoms" and by the way MY PCP HAS THE FLU! I called about a prescription that had not been getting to them from the pharmacy and found out he is sick with the flu... anyway, MY BEST Friend from Grade School and now my "Vet" told me about "symptoms" and all of the issues I had, and I looked up "Bartonella" which is now also associated with another "chronic health issue" that is an off set of "Chronic Lyme Disease" called Babesiosis - Babesia (which as far as I "know" I don't think I've ever been bitten by a tick, and never had any on my pups unless it was way back in the 1990's when I lived in Blooming Grove and the pups may have one on them once or twice, or when Dad hunted deer, he would get a tick on him every great while, but I have been BITTEN BY A CAT, IN FACT MY OWN CAT, in 2005 when I was in San Pedro, and it was a severe bite... he did it not because he "wanted to"... I lived in a 2 floor - 4 apartment type of place there, and they were putting new screens on the windows, this was on the top floor where mine was, and they didn't tell me they had the screens off, I had been out walking, when I came back one of my cats, was falling out the window!D I heard him and went of course to try and catch him and of course he was scared to death - and he bit the literal HELL out of my hand... it "pierced" the skin almost all the way through, and it hurt for DAYS! I went to the ER twice and I had just moved there so I knew nothing about doctors etc there at the time, anyway, I was on antibiotics, got a tetanus shot, and had pain meds for 10 days or more, it was at Thanksgiving and I could not even stand up to do anything, I was in so much pain, and bless the cat's heart, he was "never the same"... I "think" he knew he "hurt" me so he was always kind of almost frightened he would harm me again, or thought I was "mad" at him... even though I was not, but of course it was stupid me that went to help him, a natural reaction for anyone with a cat, dog etc... but the "Bartonella" can come from "cat scratch fever" which of course I knew about... so now I have to wonder, although I had "symptoms" of some degree before this happened, if she has really "hit" the nail on the head.... I think I will pull some information, and take it with me to see my Rheumatologist and my PCP the last week of the month, and see what they have to say... so Venetia Shafer I KNEW you had a great point back when we talked about this before, but with the symptoms so much worse now than ever, I have to wonder if it has something to do with that or one of the 'RELATED" TO ONE OF THESE TYPES OF ILLNESSES...



http://www.lyme-symptoms.com/CoInfectionsBartonellas.html#Bart






Wednesday, January 10, 2018

Hoping a better 2018! Lupus flare, RA flare, Flu virus, Chronic Pain severity, epidemic, wishing for a better year than since 2014 wanting to get back to writing, blogging and advocacy work

Putting "hopefully" my writing, posting, advocacy and writing areas of my life back in the forefront. The past two years, really more like since late 2014, seem to have been a nightmare. 


I've had good things happen, but losing two of my fur-babies, my Mom getting ill so quickly and passing away in 6 months, losing my Mom's "baby" sister, losing my marriage and not sure why yet, having a pain pump replaced, having a fractured hip and spending Christmas 2016 in the hospital and inpatient rehab, the a very complicated neck surgery in April 2017 that took me months to just get out of a hard collar with, and now my Lupus and RA are really giving me heck... much more but those are a few of the "highlights" that really put my several years previously in a spot where I felt I would NEVER be able to get back to my advocacy, activism, writing, blogging, posting... and the things I want and love to do... And I am still going through stuff health wise, my neck is really hurting again, and has been, but my shoulder as I say below, that has already had a complicated replacement began acting up, right after the last neck surgery. We have changed RA medications trying to get the RA flares under control, and my lower back and legs really beginning to bother me again...


I am not sure if the ridiculous weather we are having is a huge factor, but generally the WEATHER has always had a huge impact on me, when it comes to chronic pain, and migraines.... way before I could ever get a physician to "agree" with me, I KNEW the weather effected my severe migraines when they were so bad for over 20 years of my early life. 

Now all doctors and health professionals agree that the weather, temperature, humidity, erratic weather, cold one day, hot the next, all of those things and the barametric pressure have sometimes severe effects on many illnesses, especially chronic pain...

I ASK that each of you the "follow me" here, on my daily newspaper, through Facebook, Twitter or wherever to keep me in your thoughts and prayers as the year progresses. I REALLY want to get back to those things such as my writing and blogging... more on the advocacy side, but even sitting here at the computer puts me in such pain at times, there are days it hurts to sit, stand, walk, lie, no matter what I do, it is severe on some days, and here lately MORE days than not....

BELOW is a POST from my Facebook page, where I had been commenting to a friend of mine who is going though some frightening issues with her liver, and her Diabetes. So, as I posted this, I wanted to "add" it here also... my numbers honestly here on my blog have fallen so much, and I know the holidays effects that, but also me not able to post as much, put up as much relevant information as I usually do... I desperately need to update the look and feel... I know it's getting outdated, and it is a matter of having the time to do those things, and those are what I really want to be able to work on....

I APPRECIATE those like yourself, that give back the feeling that "I matter"... I try my best to let others know I do appreciate each one of you that take time to even give a "thumbs up" I realize not all of us have time, or feel like Posting, but I always know someone "cares" by just a heart, a thumbs up, or a "face".... you too I realize have been through so much. I have to "say something" about a "comment" I read the other day. Some one made a comment that Facebook is NOT THE PLACE to "post your personal problems"????? WHY would we "want to connect here at all" if we were not looking for others either like ourselves that "need that extra push up" every once in a while, or to "see" we are NOT alone in this come and when I "post" personal issues, which health is very personal I think, 

I am NOT looking for an answer or someone to totally agree with me, or what, it is MY way, like my blogging and writing (partially)... the social media is a way to connect for many reasons, but since I have "no really close family or friends physically that I can "see" ) my son and daughter are about the only "close family" I have left, and my daughter is 8 hours away and we talk probably at least 3 or 4 times a week, but she cannot just "drop her kids, family and husband" to run 8 hours up here, and although my son lives close by, he has his own things also, he has been fighting with "FM" now for a long while, so he is trying to re-educate himself, by some short classes, where he can do certain jobs, that the ones he used to do, due to the FM he no longer can do, lots of very hard physical labor... even though he is 37, age as many of us know with some of these horrid illnesses, syndromes, chronic pain issues and so forth, AGE has nothing to do with it.... so he sends me messages, and if I NEED him, he could be with me quickly, and we keep up with each other, 

BUT he also knows ME, I really 'don't want" the feeling that I have to have someone doing everything for me. I LIKE doing all that I CAN DO myself... and it is hard for me to even ask for help, because all the years I did everything, from hanging ceiling fans, to painting, any kind of home improvement just about, the lawn, and so many things I've loved to do, I KNOW that even since my cervical neck surgery last April, I have "overdone" some stuff. I PRAY my neck is not messed up again, or my right shoulder, that ever since the neck surgery, it is the RIGHT ONE that has already been totally replaced by a "reverse total shoulder replacement" about 6 years ago, I think, but it has given me hell ever since the last neck surgery... of course I realize 'some things" I had been doing I've had to "stop" and either let my son do it, or my neighbors help some, or I just let it go, knowing it can wait, other than an emergency thing at the house, some things that I just could NOT stand to "let go" I've had to and I am STILL learning to "let them go"... but being alone with the pups now, I do as many things as I feel like, or that I can do, if possible.... yet trying to learn to say "no" I can't, or sit down and say I just hurt too badly today, etc... those are very hard things for many of us to do... not in our "genetic makeup" 

Saturday, January 6, 2018

After "many" strange" symptoms, DO I ADD yet "another diagnosis" to me endless list of crap wrong with me??? "CPRS"????

I finally made a trip to Urgent Care with what I feel is a very bad Lupus and RA flare, but there are several "symptoms" strange that add into the mix of it all... I was telling my friends on Facebook about the ordeal and one lady mentioned that I should be seen by a Neurologist who specializes in "CPRS"???? Complex Regional Pain Syndrome! I look it up and guess what, MANY of my weird symptoms "fit the bill" - I am just about ready to scream and run, I am so fed up with health problems and the "list" is endless.....


 I had not even thought about that. could it be caused by a very severe sprain? Actually I've had three sprains in that right ankle. The 1st one when I was 40... I had just gotten home after my 1st heart attack, and went toget out of the bed. That foot was "so asleep" I didn't realize it, so when I stepped up I twisted the hell out of it, and it was bad. In fact I had to make a trip to the ER thinking it may have been fractured. Then about 5 years later I stepped crooked on it, when the wind blew me out of a car door at a store here. I was dressed for work, and had went into a store at lunch. The wind was terrible, and when I opened the car door, the wind caught the door and made me twist it again. 

Then in 2016, the day before Mom's funeral in June, I stepped off my front porch, talking on the phone to my daughter, and my neighbor had called to me, and the grass was so wet with dew, both feet came out from under me, and I sprained both, but the right one was bad again. It was so swollen it looked like I had a softball on it. I had to wait, and that Monday after her funeral, went to have it X-rayed at Urgent Care. It was not fractured, but I pulled it again so badly, for 6 months it continued to swell. It was really after I fell fractured the right hip, and then early last year, I went to a foot specialist. He put an injection of corticosteroid in it, and I went for PT about 3 weeks. It went down and "seemed" fine, after that injection. Then last week, I went to the market, and when I got home I noticed my sock I had a bad indention in that foot and ankle.

 I didn't think much of it until then I noticed this week every time I am up on it, or sit at the computer, with it down, it swells terribly again. And I've noticed it hurting now, yesterday it was huge again when I went to Urgent Care about the Lupus and RA flares. I hoped the injection of corticosteroid for those would help reduce the inflammation, thinking that the Lupus, RA and just the very bitter cold weather, that was swelling my fingers and other joints may have caused it again to swell after it being so injured. 

But it never dawned on me, other than I was fearful my "heart" may be causing it to swell. When I had my 1st heart attack, for about 8 weeks before I had it, every day my ankles both of them would swell horribly. That was when I was in "great shape" watched my weight, exercised daily, and never thought I would have a heart attack, yet I did on Jan 8th 2001! So anytime unless I've sprained them etc it worries me that my heart could be acting up, but I've just had an echocardiogram, and a check up with my heart doctor about 3 months ago or less... 

so between knowing it is so damaged from the sprains, and the RA and Lupus, it will swell and hurt, especially with such very cold weather... my fingers, and every joint feels "swollen" and stiff and hurt like hell. So, last night I took one of the Metoprolol's that is for the "extra beat" of my heart. I had slacked down taking them daily because my doctor felt that they were causing me to have a very slow heart rate. In fact we talked about putting a pacemaker in, so I could take the medication and not have to worry over the heart rate problems. Then I will be damned I had one of the damned very cold, wet night sweats!!! Those are the reason I had cut down on the Metoprolol anyway. 

IF my heart rate gets too low at night, we feel my body compensates, by one of those horrid, cold, drenching night sweats, I was wrapped up all night in a heavy robe, and blanket, because then I get so cold after that sweat, I shiver all night, and I feel so bad, I can't even get up to change my clothes, I am just so cold, it just almost hurts to get up and have to change... I swear I thought 2018 would be "better" and it sure has not started off very well for me... I think I am just freaking cursed....


Strange enough, when I look it up, much of those symptoms are true... for one my "OTHER LEG" from the knee down has hurt now for about 10 days, it wakes me up at night, but it is in the other leg from the knee down into that ankle! Also, it looks so purple, but I thought it was spider veins, I suddenly have them in both ankles, and I've asked before because up until I sprained them, I didn't have those terrible ugly looking things, but that ankle and foot looks purple especially when it swells or I have problems with it... 

it has been injured badly twice... and it will even give way with me at times if I am not very careful with it... the "sudden" swelling was strange to me... unless it has just been swelling due to the Lupus and RA... 

so I guess even my Rheumatologist may not really be able to tell me, nor really the foot and ankle specialist... that does seems and I've heard of it of course due to Barby Ingle and many others that have the problem, I just didn't put two and two together thinking that could be what is going on with the ankle in itself... but now that you have said something, and I read the "symptoms" I am wondering if it may be something else like that  and I will definitely check on it. I see my PCP who was the one who diagnosed my Lupus and RA. He really knows a great deal about "other problems" such as something like this... he is a younger doctor and he is very well educated in other illnesses, syndromes, and things that some PCP may not know much about. Plus if I talk to him, he will know of a Neurologist who could look at me and see.

What is even stranger about this, is that suddenly also i about the past two weeks, I've had severe problems with my left arm, from the elbow down to my wrist and fingers. It wakes me up every night, swollen, and throbbing and like it's "asleep" with that pins and needles type of pain. It did it again last night, along with everything else, needless to say I was up since about 2AM, between everything hurting, the night sweat mess, and such I got up and turned on the television again, and said to heck with it... 

and of course I also have the "autoimmune issues" which I knew often go along with "CPRS" again I guess out of everything, I never put this together with the other problems and symptoms. Of course my first thought it dammit, I DON"T NEED ANYMORE FREAKING HEALTH ISSUES!!!! So, if this is the case then I just "chalk up" one more to the never ending damned list of crap wrong with me... again I feel totally "cursed"!!!!!!!


And here is one link talking about CPRS....  https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet