Wasp Sting turning to "infection", dealing with "overload" of paperwork after Mom's passing away, my own health issues, ankles still not well & so much more....

I've been "knee-deep" in things to do... I feel like I am s slow as a turtle these days. I've just now began to realize how much needs o be handled now, from the house, to car, and paperwork. I thought my hands were overfull just taking care of Mom while she was here, but I think I am on more "overload" than I was just a few weeks ago. My "to-do"list gets longer each day, and my "energy" and ability to "get er done" seems to be somewhere lost between the rock and a hard spot... 

Anyway, I am around, just involved in trying to get everything taken care of, and trying to keep this house half way clean. and the lawn needs to be mowed and it appears my neighbor may be gone on vacation or something. I've not seen him in over a week, and I noticed they had all of their blinds down... and his car has not moved in a few days either, so when it is as tall as it is now, plus with me STILL REELING from whatever the hell is going on with me, I cannot stand the sun to even for a moment to be on my skin... I can't really "explain" it, but after all of the burning, itching so severe it almost drove me nuts, hurting, swelling mess with the Wasp stinging me then the stinger in my arms for about 24 hours, before I realized that is what was in the little hole in my arm. But as I "tried" not to scratch it, but it looks like either I have had the "shingles" just looking at the forearm all over, and my skin almost appears as if the 1st or 2nd layer of skin was "burned off"... it is very strange... and most of it I believe is where I was rubbing it, or trying to rub like a soft cloth over it, anything due to that burning and itching... so now I do wonder if this was all the sting, OR did it turn into shingles? 

I have had now this is the 3rd time, a rash that appears almost like shingles. The others were not as bad, but they also burned and itched like crazy. So, between that, and my ankles are still not the best. My right one swells up still a great deal, if I am up and on the move... but right now I don't have time again to stay off my feet and get back on the sofa, then I feel like I really am falling behind. There is something else that I wanted to share, and I hope it does not "weird" anyone out. It could be this happens, for we are definitely "creatures of habit"... but about a week ago, I began to have these s"instant" thoughts, Gosh, I need to "call Mom", or I need to go over and check on her... it has happened now several times, sometimes more than once, if I think of something that she may have wanted to know etc... so I know it kind of hit me as "strange"... yet like anything we repeat in our daily lives, it tends to become "automatic" in life. If we get the mail everyday at 4PM, then even on a holiday, many of us probably go and look for our mail... and then find it comical that it is a "holiday" dummy.... I can say, although as "strange" as it feels, it's not a "bad" kind of strange, it is just something that I've never experienced before... 

That house is beginning to look much better inside. Gosh, talk about a "pack rat"... now I know where ALL OF THOSE PRESENTS FOR BIRTHDAY'S, MOTHER'S DAY, XMAS etc went! She has packed, packed and repacked stuff over and over again... so there were several things over there that belonged to my Granny Svehlak, and much of that is crystal bowls and so forth. So, I know there will be some things that will remain, to be passed down, etc... to my son and daughter, and my Grandkids... many "keepsakes" so just like myself, Granny always made Homemade Cookies, and she had a special jar that I loved all my life, and when she passed away, I asked if I could have it, and I have it sitting in my stands that have glass doors on them, with some other things from the family etc... Then, I am still having heck with being nauseated and not feeling "great"... I am sure the heat, plus the Lupus Flare, plus the antibiotics, and all of the stress from the past several weeks, really months, is catching up to me. My neighbor did say that there is a "stomach virus" going around here in town, and hell that is the last thing I need! As I continue this "journey" through paperwork, redoing floors, painting, and making decisions on many things, your thoughts, well wishes and prayers are definitely still needed... 

I "thought" I would almost be at the place to go ahead with my neck surgery, but as it is right now, I have to get over everything else first... plus that stupid "motion disorder" and it also can cause these "audible noises" where I think I "hear" someone with the "news" on television, or certain things just "set off" this strange mess. When it 1st happened just after moving back to TX, I was terrified... but myself, my Mom, my Granny and hers was really bad, and my daughter all have it.... it is a type of vertigo, and of course that effects the inner most ear, so when the "crystals" form, then you can have all types of motion sickness, and like me, it is like I can hear "Channel 5 News" or something off in the background... I've been through all types of tests, because I also continue to have double vision. If I don't have my glasses on (and it is over due time for a new script I think) which have the special "prism" in them, and it "deters" the double vision. Anyway, here is a bit of an update... I feel I need to be moving a million miles an hour (my brain is), but my body is just not cooperating... Hugs to all and again I appreciate your thoughts, well wishes and prayers.... Rhia

Pics of my Granny and Grandfather (my Mom's parents) then a pic of ALL of my Granny's sisters, and cousins, and all of the huge family. Abs as promised, the "Ye Old Inn" matchbooks like brand new, plus I "think" the sale and pepper shakers may have cam from there... I believe it was a "give-a-way" of something ...then the lamb and the diaper pin! The lamb was given to me BEFORE I was born! And I have not seen a diaper pin in ages... do they even make cloth diapers anymore and diaper pins???

UPDATE!!!! Pain pump stall, My Mom's health issues and finding out today about this breathing problem and hoping it is NOT her heart valve & dealing with LIFE and Autoimmune everything!!!!

Okay everyone, please PRAY for MOM and MYSELF! She sees the Cardiologist this morning, and I PRAY her shortness of breath is NOT her HEART! She has a very "leaky" valve and I think I explained before why the shortness of breath... and our Cardiologist has had it under control with medications, and her not taking in as much fluid daily... but she has not been well at all over the past 2 months or so... and now her Kidney functions are low, which they were a bit better earlier this week but she still has to see a Nephrologist next week. I am praying the shortness of breath is possibly allergy related, because she does have allergies, like many of us, developed the late in life.... but if it is her heart, it could mean open heart surgery.... AND as far as my pain pump... I am NOT out of the woods yet.... it appears that it "restarted" itself out of the stall on Sunday... which is weird, because the Rep from Medtronic that saw me last Friday, had turned off the alarms, so they would not drive me nuts, but I kept hearing it go off, until Sunday.... but they had turned the medication basically to a minimum so I could take oral pain meds until we do surgery to replace the pump.... SO, yesterday my pain doc... did put my meds back going as they were... and he told me, not to get too excited yet, because it could do this again, and for the next 48 hours or so, I am having to watch it very closely... BUT, he also made a mistake when he reset the pump to send me the meds.... I have an "optional" Bolus every 8 hours... I can give myself an extra amount of medication... well he sat it WAY LOW rather than were it should be.... it was supposed to be 1.001 and he missed the decimal and put it at .1001 which is a HUGE difference... so now my bolus is really not doing a thing for me... that is just nothing compared to what it should be... so I called yesterday and left a message... but I guess I will here back today sometimes.... so between all of that, Mom, and now it looks like this stupid other "lump" on my right thigh is also in the process of going to "abscess"... it is now turning red and appearing like it might... plus I had been running fever off and on for a few days... which I thought was the pump issue causing it, but now I thinking this stupid lump could be the problem... when it rains it comes a flood on my life it seems.... lots of other things also... so there is what I know for now.... I appreciate all of you that are praying for us.... Rhia

Cellulitis, Antibiotics, MRSA, Catching Up, and what "normal" is when you battle with autoimmune illnesses

Gosh Lord knows I need all of the prayers I can get for sure... I did find out yesterday that this stomach mess that began last Friday maybe a "stomach bug" going around. I spoke to my pharmacist about a medication, and they told me that lots of people had been in over the past week or so, with the same thing... really nauseated, feeling lousy, and be "sick" to their stomach... I kind of thought that maybe what it was after I spoke with Mom Sunday over the phone and she was sick Sunday morning with about the same thing. I believe mine was a bit worse just due to the fact, I had already had such severe intestinal issues from the antibiotics, and I am just "worn down" from the cellulitis, not sleeping, the heat does not help and so forth... hopefully I will NOT encounter any more of that mess for awhile. I am still NOT at 100% though. Yet, at least I am COMPLETELY THRU with the antibiotics. I officially took the last 2, yesterday evening. Although the "lump" is still not completely gone away, I think I will just see what happens over the next couple of days. I certainly do not want another round of antibiotics, especially since they are some they use to fight really, really tough cases of infection. I do not want to become "immune" to them and then not get what I may need, if so happened I did come down with some type of very bad infection... MRSA always remains in the background when I think about having to take antibiotics. Although my PCP does not just hand them out for anything, but with me being more prone to having an infection, I have had to take more than I really want to over these past few years. I GO TO the Cardiologist this morning. Just a routine follow up, but her appts are always too EARLY... this one is at 11AM so not too bad, but I always prefer to have appts. very early afternoon about 1PM... that way I have all morning to do things and get caught up on stuff, and I don't waste time having to get ready for a doctor in an appt that is way early... Then the rest of the week is actually pretty quiet as far as going to doctors etc. I STILL NEED to go have the damned Chest X-ray done... I got sick and had to postpone it again... and I know my Rheumatologist is really wondering what the heck is going on. Anyway, I will be playing catch up on lots of stuff over the next few days... so I appreciate everyone and your well wishes and prayers... and I hope things "settle" a bit now, and I will feel better over the next few days, get my strength somewhat back, and be able to get back to "life" rather than a sofa and movies 24/7... Hugs to all... Me

It SUCKS big time, when you feel your life is totally out of your own control, and you have no way to "fix" things... you just have to succumb to the sofa, resting, and putting a whatever you could call "life" on hold.

This past 6 weeks or so have been a total nightmare. Combine all of the issues with the lump on my thigh, cellulitis, high powered antibiotics, my own lower back, pain, stiffness, and a seemingly "worsening" of RA symptoms. My hands and wrists, along with fingers and thumbs are really bothering me worse than they ever had. My right hand has several swollen joints and even the cartilage between my fingers seems to be swollen, puffy and very stiff.

I have actually missed my Orencia now for the 3rd week (in fact I usually take it on Tuesdaus - but after all of the issues with cellulitis on the top of my left thigh in a place that seems where I usually do the Orencia Injections, first of all, with the infection I feared taking it, and 2nd of all, I am not through researching it, but I feel I may have gotten a "contaminated" needle giving myself the injections... I am a stickler for the skin being very clean, and make sure that the alcohol swabs get all in the area, and I always have clean hands, and usually put a bandaid over that spot at least for a day... and I realize with any type of autoimmune issue, I am more apt, more prone, to have these types of issues, but when you get so ill, that your entire life goes on hold for several weeks, it is surely difficult to deal with. 

Anyway, I just completed two 7 day rounds of Rifampin and Bactrim - I hope and pray after 14 days total of these two powerful antibiotics, this cellulitis is gone, and what small "lump" that is left, will just take a bit of time for my body to "absorb" it. I've never had to deal with cellulitis before. So, what portion I do know about it, is what my doctors, my pharmacist and my own research has told me.

I don't want to have to take anymore antibiotics if I can avoid it. I already have infections at times like pneumonia twice in the past year or so that require them. Thus, I worry so much about getting "immune" or something mutating to where the antibiotics do not work. Actually that scares the hell out of me.

But, I must be sure that all signs of infection are gone. I can't take a chance for sure. Plus I feel if this does not do the trick, I will have to be hospitalized and put on IV antibiotics, which I don't have time for, and is surely NOT a convenient situation for me financial wise, time wise, and due to me being here, with the pups, and no longer having another person here to help out, I just can't be gone several days to the hospital. Of anything that sucks about being alone, to me is just that. I can deal with "alone", like many of us do. What I can't deal with is the times I need to be gone for more than a day... then that requires so much change. I must find someone to watch after the pups, and that is not an easy thing... fortunately there is a young woman, along with her sister and Mom that do come to your home and watch after them. But, mine are both so totally ruined, they have a hard time with a stranger, or with me being gone for any time over a day, or a day and a night... so it is like having kids... you can't just leave them at the house for a few days, run off to the hospital... you must have them watched over... My Pug, is really get very stiff herself... she is up in age and has a difficult time getting around... can't jump up on the sofa anymore by herself... and she requires a bit of extra attention, plus I give them both medications daily and so forth...

Even though some may not comprehend how an animal or animals can be so much of your life, but they are... anyone that is an animal lover, and has or had a dog(s), cats and do forth totally "get it"... they become a part of your family and for me right now, they are my family...

Even though I think I should have "more time" now, I feel as if somewhere my time is being "sucked" away... the days feel shorter, and the number of things that need to be done, longer... and I never seem to be able to find enough energy to complete the tasks that I should be able to... I've tried everything... lists, organizing, I multi-task, although not as well as I used to be able to... but it is like life goes into overdrive... and rather than slowing down, and things getting "less" all needs are more... whether it is my own health, my Mom's, the house, the pups, everything seems to suck time away... I spent over a week more or less on the sofa... so I have all of this stuff piled up... and all of it important in its own way... but it is impossible for me to handle it all anymore... the age, the autoimmune illnesses, along with everything they bring and take away... my body feels "worn" out rather than better....





















 

Lupus Patients in the Hospital and Infections on the Rise....

I certainly find this very frightening... Since I have "cellulitis" which I am still not so sure may land me in the hospital on IV antibiotics, plus I need to get my back surgery... even thinking about having Lupus, RA, Sjogren's and other autoimmune "compromised" issues... this is something we should ALL take into consideration. Now I feel we ALL need to be very proactive when we must be in the hospital, clinics, have surgery and so forth... we know that the "antibiotic resistant" bacteria's are out there and prevalent. Never would I have thought I would get cellulitis... yet I went in due to this "lump" on my top thigh... just in time before I did have to be admitted and given IV antibiotics... and even now, I've been on the two different ones now for 5 days... and this lump may have went down a tiny bit, but it is still there... so infections as even with my own personal experience as nothing to put off, and even more difficult to try and avoid...


http://www.medpagetoday.com/Rheumatology/Lupus/52814

Autoimmune Illnesses - Does Illness, Doctors, Tests, Treatments and Medications EVER END???!!! I am just totally wiped out.... A Week from Hades for sure!

Does it ever end? I DID get a new rug cleaner, and even got an extra $10 coupon off of it, so I have it at home, out of the box, and trying to get the "opt" piece to line up and then there are 2 screws to put in once it is all lined up. I was just too tired, too aggravated, feeling just sick, after an all day of running again yesterday. So, I DID GO TO THE DOCTOR yesterday!!!!!! I called and they told my doctor what was going on and he wanted to see me at 11:30 yesterday morning. I had already felt like something was not right about this growing "lump" on the top of my left thigh. It began getting larger almost each day. And it is about the size of a silver dollar or maybe larger. Sure enough, I have cellulitis. NOT GOOD! If I had not went in when I did, I may have found myself as an inpatient on IV antibiotics over the weekend. He said that he was giving me two different antibiotics, both very strong and in fact one of them they actually use for certain types of Tuberculosis. (interesting since I still need to get that Chest X-ray) and have NOT found time to get it yet! So, after I saw him, I had already been to Wally World and got the rug cleaner, and then I went by Mom's. Well, of course she had not picked up her meds yet, so I had to go get mine, one of them my pharmacy did not have and was not going to have it until Monday.... and it was one of the antibiotics, so I did not want to go without it if possible. So, I went across the street to pick up Mom's scripts, and I happen to have a copy of the prescriptions. They did have enough of the other antibiotic, so I asked them to fill it and I would pick it up in an hour or so... so I visited with Mom, explained her meds, and left to go pick up mine. Then I came home and was just exhausted. It was already something like 4:00 PM and again I had been "running" since about 6 that morning. So, I changed clothes took the medication and got on the sofa with the pups. But, I was just restless and honestly really concerned about this cellulitis mess. That lump has already been there about 4 weeks, maybe longer. So, it really worries me since it can turn bad very quickly, especially when we are immune compromised. I want to use my new carpet cleaner, but my stomach is just YUCK! I think it is the antibiotics. I have a billion things to catch up on.... here at home, online, and then I have 3 days of PT for Mom next week, plus I need to schedule the MRI for her, and then they called about the ESI (Epidural Steroid Injections) already and want me to call them back Monday to schedule those. So, I am not sure if the doctor wants the MRI first, or if he wants to go ahead with the injections.... but that means a possibility of either having a test or going to a medical "something" everyday next week! Plus I have not even had the time, nor the energy to go and have that damned chest X=ray yet. So, I am exhausted to the bone today, and feel like hell. Keep Mom in your thoughts and prayers... she seemed to be better yesterday, but we all know with especially "back pain" one moment you can be fine, and the next in almost unbeatable pain... so one day of feeling good certainly does not constitute it is over yet. I am going to try and stay online this morning and catch up on a few things. But, I will see how I feel. Right now I hurt all over and as I said, I have to take those antibiotics on an "empty" stomach of all things.... as if they are not bad enough to take with food.... I wish everyone a good weekend.... and I will be "around" off and on, just depending on how I feel. and by the way, THE MAYOR SIGNED THE SEPTEMBER 2015 PAIN AWARENESS PROCLAMATION!! I GOT IT in the mail yesterday... BUT they must have not let the ink dry enough before sticking it in the envelope, and a couple of the letters on a couple of words have been pulled away.... so. I am not sure even trying to "go over" those can fix it... I may have to have the woman that did it, redo it and send me another one. I hate to but I've tried to kind of go over them and it just looks horrible. I may try to scan it in, match the typeset and "fix" it in Photoshop if I can... I shall see.....

Where Do You "Turn" When you are already "Char-Broiled" by Illnesses, the Insurance companies & Our Medical "Entity"?

How To Turn Over And Change A World of "Not "for" the People, but for The People's Money?

There was a time that I felt "age" and technology moving so very rapidly caused many to not "get the drift" of insurance, medical charges, medical information, & all that goes with that. Well, I am here to tell you right now "age" has nothing to do with any of those things being "confusing". I've found out quite recently, even the medical facilities, doctors offices and insurance companies themselves have no clue as to what they are doing! I've had to get a "crash education" in "diagnosis codes", in the "technical parts" of insurance, medical billing and coding just to get my bills coded, and paid correctly. Two of which I had dealt with since LAST AUGUST~ After 3 APPEALS including myself, my husband, and 5 other people at the University Hospital, working on these, WE NEVER did get Humana to pay those 2 infusions correctly! They continued to try to bill the "Rituxan" as "Part D", which is NOT CORRECT, and then they billed again, and Humana tried to code it strictly as if it were for Cancer, not RA, so that screwed everything up. Alas finally last week, after resorting to ALL avenues even the hospital threw in the towel. They helped me with financial aid for those two bills totaling over $3,000.00!!! They also have me "approved" NOW for the Rituxan infusions until August of this year. After Humana pays all they are going to the hospital will pick up the balance for me. :) Which is awesome news! BUT, in the mean time I was 7 weeks or more late with any biologic! I came down totally ill with two different flares, RA and LUPUS! Along with all of this serious dental stuff that is going to require a Dental Surgeon to probably have to pull all of my teeth, put in a couple of implants, and then put the teeth onto those implants! I go tomorrow to the dentist, but I know just from what I feel and see, I doubt there is anymore "patching". My teeth literally one day seem fine, the next they are breaking off at the gum line, splitting into halves,   and they are almost like coming apart, pieces sloughing off, and it just happens. No rhyme, nor reason. It is the Sjögren's, but all of that was discovered too late. My teeth were already headed down that road probably before 2008, when I first was diagnosed with these Autoimmune illnesses. Plus there is "little" they can do for Sjögren's. There are two pills, I've tried them both. I am still on one of them, but it is not helping really. I constantly have to sip on green tea or something, and I have to constantly chew gum (sugar free and with xylitol" in it) or my mouth is so dry, I cannot swallow, talk, nothing... plus I am constantly having ulcers, sores, sore throats, you name it... . I've already lost 4 teeth in just about 6 months, and I know right now, if these cannot be fixed tomorrow, I could lose at least 4 again, if not more. Now to find an Oral Surgeon, that can "file" this as a medical condition, which it is and it is well documented with ALL of my doctors and now two dentists, that Sjögren's is the issue, and I did have a woman at Humana TELL ME yes they will cover this IF it is a medical condition... and I even got so far as to having them send me a letter stating they will... I may still face having all of my teeth pulled, two implants put in top and bottom, then they almost "snap" the plates in on those to hold them. Regular "dentures" are not the answer for anyone with Sjögren's. Due to no saliva they will not hold in place, and would make my mouth probably less wet, etc. I also have osteoporosis, and it is in the "severe" range. So, that will also be a factor as to how they fix the problem. I could have to have "bone grafts" or some way to fix the bone, if I have lost enough that the implants may not be able to be put in! This is a living nightmare! And the sad damned thing is NOT ONE doctor, or really dentist until I began to discuss it, has tried or talked to me about this horrid disease. Yes, I have it. Yes, it is reeking havoc with my mouth, teeth, bone and gums, but till this moment has anyone offered a "real solution". The ONLY person who has even attempted to find out what HAS to be done, is ME! Plus, this is like major surgery. I am sure the oral surgeon has to put me to sleep, pull those teeth, and then I am not sure about the implants from there, and putting the teeth in. That all depends on my bones in my jaws, as to how it all plays out.... and now I face a major trip 4 weeks away to DC! I certainly cannot go with my teeth literally falling out of my mouth daily now a piece at a time! But, trying to get ALL of this done... no way, no how in 4 weeks! Plus, if things are not bad enough, I have this flare, I was put on steroids again, after an injection, the PA thought I have a sinus infection, which has been wheezing. So, she put me on "Omnicef" but a generic form of it. Well, I have not had any of the "Keflex" type of medications for many years. So, I am on it since Thursday. Friday I noticed my stomach not "right"... but it has not been anyway with the flare mess. So, I take the antibiotics, and by yesterday I have such a horrible, horrible scary case of the big "D" word, I cannot stay out of the bathroom! So, I get concerned, look it up and come to find out, this is probably a "form" of colitis, a secondary infection in my colon, due to it allowing other bacteria to take away too much of my "good bacteria" out of my intestines! I was not that concerned, but it kept getting worse and worse... and it is just I won't even go there... but BAD!!! So, I had already taken some Imodium a couple of times, then read this morning it is better to "talk to the doctor" BEFORE taking any of the anti-diareall's !!! Well what another mess we have here "Sherlock"! I certainly can't even leave the house like this, and now I have another problem on top of everything else. My Enbrel came in Thursday and I took it. But now I woke up yesterday feeling like someone literally knocked me on the ground, and took a baseball bat and beat every muscle in my body. There is NOT ONE place I can touch myself, that does not "hurt"... it is insanity! And who knows, is it one of the flares, medications, something new I am developing???? No biologic for too long, then a new one that I've never had??? I can guarantee "my guess" is probably better than the doctors as this point! That does not include everything that is on the "books" for me this coming month! I honestly fear I will be having to miss the DC fly in. I just don't think with my mouth situation, the flares as bad as they are, and everything else going on with me, I can take a chance to fly to a strange city, going through a 3 day seminar, then stay on through the following Sunday to see Jim's Step Mom. Hell, I can't even go to the store as I am this morning, much less drive to even Dallas! These diseases can really make your life a living hell. When you add on top ALL of the STRESS, with insurance, bills, just having surgery 5 weeks ago, and a few other things going on with "family", that I just found out yesterday, and that I am extremely upset about, my brain is at either go insane completely, throw in the towel, and cover me up for good. And NONE of this includes Jim's ENTIRE ORDEAL with a neck that probably needs surgery, a lower back problem that is not much better, and NO INSURANCE! And don't get me started on the "Indigent" Health help in our county!!! Talk about a joke! That is another complete chapter for my book, if not two chapters. SO!!! IN A NUT SHELL NANCY! You are correct, and it is even WORSE than many know. I just read yesterday afternoon, that "Obama Care" due to the "new insurance crap" may even make getting anything paid through Medicare, and especially Medicare Advantage Plans (i.e. Humana, and the others) even more difficult. They are planning to pay the providers "less"! Well hell, they don't "pay" them as it is. That is why our doctors are starting to not accept them! Because they bill for a 100.00 office visit, and the insurance pays them $3.00!!! or something ridiculous! I realize the medical system is screwed, doctors, facilities all of that is WAY< WAY over priced. BUT it is because the insurance companies PAY NOTHING, thus the circle begins, round and round. And who is stuck in the middle of it? Well us for one as patients! BUT who is it FUELING THE FIRE??? THE GOVERNMENT, MEDICARE! Absolutefrickinly! Yes new word... we have our dear CONGRESS and our Centers for Human Services (not Humane", but Human) to thank for this bill pile of bureaucratic bull red tape. And then it all falls on our shoulders, and we bear the scars all over us where they have just "shredded" humans out of any kind of true health care! It is a total fly over the planet, into another universe, complicated, ridiculous, "corporation greed" let's make money, NOT HOW WE CAN HELP PEOPLE! Thank you to ALL of our Congress, and I mean all of them... local, state, federal.... we vote them in and they vote us as "null and void"....

"Black Box" Warning - Certain "Fluoroquinolone" Antibiotics! IF taken too close together... can certainly lead to serious issues.

When what seems "NORMAL" may NOT BE Normal At all...

Like many of us, with or without Autoimmune Arthritic Diseases, we have the occasional "infection". Lately, it seems if you don't have the flu, then you certainly have some type of throat, lung, ear, and so forth "infection".

It has sent many of us to our doctors, for several reasons. Either we feel it is the flu, so we go to try and get "Tami-Flu" in time to "curb" the severity and length of having the flu. Or we stay ill so long, have fever, show signs of infections, especially lately seems like everyone has a bad cough they just can't shake. So, off we go to the doctors office.

Well, like many our home has been "ill" now really since right before Christmas. My husband came down with what seemed like the flu. Yet, he did not have "all" of the what I would call normal flu symptoms, and his cough was very bad. Fortunately, I had "left over" cough meds, had Mucinex, some antibiotics that I knew he could take, bought some medicated Vicks rub, kept him AWAY from me, and I was continually spraying, wiping, cleaning... using antibacterial everything, everywhere, because I certainly did not WANT OR NEED TO COME down with any of it. It took weeks, but right about the time New Years rolled around he seemed to be feeling better, although the cough was lingering. I felt he brought had bronchitis, thus the lingering cough, etc.

Well, I guess it was probably New Years Day, when all of a sudden I began to feel "stuffed up". I had just been to my doctor for a follow up  visit on the 27th of December (and my Doctor was still sounding hoarse, he did already have the flu himself)... I was quite leery when I found that out. Anyway, I got the usual injection of steroid for the Lupus flare, 14 day step down dosage of predinsone, and went on my merry way.

As I said above, I noticed New Years Day, I felt kind of lousy. It was surely NOT from any partying from the night before. since we were at home, with the two dogs, trying to stay awake long enough to watch the "ball drop" from Time Square. I began to notice I was feeling kind of "chilled". I did not seem to have any fever, but I was just chilled. As the day continued, I just felt worse.

I began the coughing. Since I already had just seen the doctor like 4 days before, I called told them I needed some antibiotics... felt like I may have a throat or lung infection starting. So, he called me in some antibiotics, cough meds, and I picked those up and began that. This was "Levaquin", the antibiotic. I am sure any and every one of us that has an allergy to any type of "penicillin", has had Levaquin before. It happens to be in the fluoroquinolones family of antibiotics. I had been prescribed it before, so I was not concerned over side effects and so forth. I picked it up and began taking it. Well after 5 days rolled around and I not only was I NOT better, but almost felt worse, I called his office again. I told his nurse, that I felt like it was "moving" into my chest. So, later in the day, I get a call back from his office. He had called me in a different antibiotic called "Avelox". 

I had not taken that one last "Levaquin". So, rather than do that, I left it in the bottle, and began the new one, the Avelox. I had not had this one before, to my knowledge. In fact I went to read up a bit on it, and seen it was in the same "family" as Levaquin. They were both fluoroquinolones types of antibiotics. 
Well, 5 more days rocked along, and in fact I had to cancel my hernia surgery, that had been scheduled for last week, on Monday 13th. I was still not well, coughing, feel lousy, my mouth broken out all in ulcers, and I knew there was NO WAY they would do surgery on me if I was still that ill. So, I called, postponed it, and then called my doctors office.

I let them know this was now the 3rd round of antibiotics, I was not much better, thus where do we go from here? So, he had me come in the next day to make sure I did not have the flu, strep, etc. In fact, I even went at his request and had a chest X-ray at the hospital. 

Anyway, he sent me home with another antibiotic, a Z-Pak. I was familiar with that one, as I had been prescribed it on occasion, especially for bronchitis or something that could turn into pneumonia. So, I came home and decided I would rest and let my husband pick up the meds later that day. Well, he comes home with this long story from the pharmacist about how these antibiotics, all in the same family of fluoroquinolones, were under a "black box warning". Now I am good about reading and watching out for medications, but never would it have occurred to me that any type of a "warning" when it came to something such as the "heart". I could see a number other issues, definitely, but not my heart at all.''

So, when Jim comes home, with this piece of paper from the pharmacist, stating the pharmacist said due to my heart problems, the heart attacks and then I have a slight "extra" beat that happens, that these particular types of antibiotics are NOT ONLY supposed to be watched for someone that has NeVER had heart issues (these meds have a very slight chance of causing heart attacks or sudden death due to a QL in the heart rhythm "(QT) arrhythmia" EVEN in those who HAD NO prior heart issues. Well, at first I was upset at the pharmacist, because here I am still ill, without an antibiotic, so my husband even goes to the pharmacy to find out exactly what the problem was. In the meantime I "googled" these antibiotics. Sure enough, there is article after article.... and in the "drug" sites, drugs.com and so on... if you look any of these up it plainly states that you should NOT take these medications BACK TO BACK, without about 48 to really more like 72 hours after the one before. So, in other words, from the 1st round of Levaquin to the 2nd antibiotic Avelox, there should have been three days between them. Then that is why when this 3rd one comes in the pharmacist is wanting to find out how long it had been between the last "Avelox" and now this new one, which is the Z-Pak? At that time, since this was like Tuesday morning, I had not taken one Sunday or Monday. I did that because I figured he would call something else in; plus if this one was NOT working, why keep taking it? So, on "Tuesday" morning technically that would have been about maybe 32 hours. I actually had taken one pill about 11:00 pm Sunday night, because I knew I could NOT take one before the surgery that morning, so I took it late in the night. So, between Sunday at midnight, until Tuesday afternoon when this got called in had been 32 hours or so. So, Jim comes home, no antibiotics yet, and then the explanation as to why I could not take then until probably Thursday, which would be about 72 hours between the last one and the new one. 

Now that I've told you in "detail" my own predicament, this is what I find out from the pharmacist "being so adamant, and not wanting to give me that prescription until he called my doctor to get an "okay" for me to have this medication so closely together after the other two. Then there is the case that my doctor prescribed not only one, but a total of 3 of these medications without telling me that I needed to "allow" at least 48-72 hours between them and why that was so important. 

At first, I was "mad" at the pharmacist. He was given a prescription for antibiotics, that the doctor prescribed. So, at first my thing was "why is he again, "interfering" in what my doctor wants me to do? Secondly, why did he not just fill it, and give me paperwork (he did give Jim a printout about the warning) & put me a note on their to either call my doctor BEFORE starting this or allow 48 to 72 hours (for me more like 72 hours since I had already been on 2 of these back to back). Thirdly, why had the pharmacist NOT already called the doctor and reminded him about the "black box" warning, and that I was a patient that had had MI, & that I also had an "extra" beat, thus then he could have asked the doctor if it was okay to fill this, give the patient the information & ask her to wait until a full 72 hours were up BEFORE me beginning the "Azithromycin"?

On the other side of the "tracks" so to speak... WHY did my doctor NOT warn me about this, and let me know I needed to wait 48 to 72 hours BEFORE the very first antibiotic, which was the Levaquin, and then the 2nd medication, the Avelox, (moxifloxican)? In fact the doctor had me come in and see him, between the 2nd and 3rd antibiotics. Since I was still ill, and seemed to have an infection that was not wanting to go away, I have to wonder again why he did not get "red flags" all over my "electronic chart" about the black box warnings and taking this group of medications too closely together, without any waiting time in between? Plus and I am still researching this one, usually "Avelox" is given AFTER every other antibiotic has NOT worked. From what I read in one place, it is the strongest before having to go into the hospital for IV antibiotics.

So, here we have TWO situations. One, my pharmacist is doing his job basically, and erring on the side of caution. Even though it means more or less going over the doctors head, he was very concerned about all of this for two reasons. First of all, these medications, fluoroquinolones, carry this warning for EVERYONE. Whether you have had a heart attack, or heart problems in the past, OR even if you have NEVER had any type of heart problems, allowing no "rest" time between them can cause heart problems anyway. Now it is a minute chance, but it is a fact that is concerning enough to have a warning on it. So, doctors should have caught that right away. Then he could have informed me of the issues, I could have just picked up the script, waited until Thursday and began the medication. Also, it should have been NOTED with a "FLAG", in my chart, that if I have to have any of these back to back, to make sure I am told to leave 48-72 hours between them. No harm, "no foul"... as far as I would have been concerned. 
That would have stopped the "buck" right there. Then if the pharmacist questioned it, I would have been able to tell him I do know about the warnings, and I not going to take these as instructed by my physician as far as the waiting period.

So, WHY did my DOCTOR, who has been seeing me since about the first day he opened his practice here NOT catch this warning? Why was it NOT flagged in my chart? I realize it was probably the first time it took 3 rounds of antibiotics to get over the chest infection, sinus whatever, but if that "warning" had been in place, even I could have asked him about "waiting" the time between them. 

Now, WHY did the pharmacist NOT JUST CALL my DOCTOR"S office and inquire about this? If he was "flagged" at the very first of trying to fill it, why go any further without calling my doctor? 

That also would have caused a great deal less "stress" on all parties involved. Especially myself, the patient. Even AFTER we asked the pharmacist to call the doctor, and he did call him; BUT after telling my doctor about the issue, my doctors tells him to "keep me on" the Avelox! Well, that was fine and dandy, BUT I only had ONE PILL LEFT! I was prescribed 7 days worth and had taken 6. I was told NOT to take the last pill by my doctor, and start the new one instead. So, now the doctor NOR the pharmacist take into consideration there is no "refill" on this, and basically i am OUT of them. I call to find out what was happening (now Jim had spoken with the pharmacist very EARLY that Morning and he promised he was getting on it right away)... so when I call that AFTERNOON fairly late at that to the pharmacy; for one I thought no one would ever answer, and 2 after I FINALLY talked with one of the assistants in the pharmacy, come to find out the pharmacist had NOT EVEN CALLED the doctor YET!!!! Here I am ON HOLD for at least 15 MINUTES while the pharmacist is then calling the doctor!!!!!

Of course, finding out that NOTHING, absolutely NOTHING had been done to resolve this was just fuel on the fire! I'm now stuck, still ill, and still needing antibiotics, BUT the very people that could resolve this did nothing. Finally, my husband gets on the phone with the pharmacist. He asks him about the prescription for the "Z-Pak" or Azithromycin, if it can be filled? Well of course it can be filled. It was send to BE FILLED! So, I told him to ask the pharmacist to fill it, we would not pick it up until the following day (which was Wednesday) & I would NOT take any of it until Thursday. Problem Solved! I do not take these too close together, I still get the antibiotics. So, that is exactly what happens. The scripts are all picked up Wednesday afternoon. Thursday morning arrives, I take my medications, the antibiotic, and all is safe on the home front.

Now WHY did ALL of that DRAMA have to play out over a PRESCRIPTION? Everywhere "other than Jim and I" there was a communication breakdown. It was apparent that the pharmacist never "thought" to call the doctor until we suggested it. Then it was more apparent that neither of them gave thought to the fact I only had ONE pill left of the middle one, the AVELOX. Moreover, WHY did my doctor NOT KNOW or do anything if there was THAT TYPE OF WARNING?!! ON these medications? 

I was already curious to know why an "antibiotic" would have these types of "side effects"? It just did not seem "logical".  I guess my thought to antibiotics is that either you have an "allergic reaction" to them, or they just rip your stomach up and make you nauseated, and then they need to be used cautiously due to these viral bugs out there now that can "go around" the antibiotics and truly cause you to build up a "resistance", thus they need to be used wisely and cautiously.

So, I go in and do a "google" search first for the "Avelox" in itself. Well, the VERY first page I pick, the URL here:

and starts out like this..."PRECAUTIONS: Before taking moxifloxacin, tell your doctor or pharmacist if you are allergic to it; or to other quinolone antibiotics (e.g., ciprofloxacin,levofloxacin); or if you have any other allergies. This product may contain inactive ingredients, which can cause allergic reactions or other problems. Talk to your pharmacist for more details.Before using this medication, tell your doctor or pharmacist your medical history, especially of: diabetes, heart problems (e.g., recent heart attack), joint/tendon problems (e.g., tendonitis,bursitis), liver disease, myasthenia gravis, nervous system disorder (e.g.,peripheral neuropathy), seizure disorder, conditions that increase your risk of seizures (e.g., brain/head injury, brain tumors, cerebral atherosclerosis).Moxifloxacin may cause a condition that affects the heart rhythm (QT prolongation)" (this excerpt above from medicine.net)....continued from the link below:

http://www.medicinenet.com/moxifloxacin-oral/page3.htm#Precautions



Then I go do another search on Azithromycin...

 ([Posted 03/12/2013] ISSUE: FDA is warning the public that azithromycin (Zithromax or Zmax) can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm. Patients at particular risk for developing this condition include those with known risk factors such as existing QT interval prolongation, low blood levels of potassium or magnesium, a slower than normal heart rate, or use of certain drugs used to treat abnormal heart rhythms, or arrhythmias. FDA has issued a Drug Safety Communication today as a result of our review of a study by medical researchers as well as another study by a manufacturer of the drug that assessed the potential for azithromycin to cause abnormal changes in the electrical activity of the heart. (excerpt from Medlineplus.gov)..  the rest cont. on the link below...

This is what I find http://www.nlm.nih.gov/medlineplus/druginfo/meds/a697037.html

Of course then I do a search for Levaquin (by the way which I have been prescribed several times over the years due to infections...

(You should not use Levaquin if you are allergic to levofloxacin or other fluoroquinolones (ciprofloxacin, gemifloxacin, moxifloxacin, ofloxacin, norfloxacin, and others).You may not be able to use Levaquin if you have a muscle disorder. Tell your doctor if you have a history of myasthenia gravis.To make sure Levaquin is safe for you, tell your doctor if you have:a heart rhythm disorder, especially if you take medication to treat it;a personal or family history of Long QT syndrome;tendon problems, arthritis or other joint problems (especially in children);) (excerpt from drugs.com)...and you can continue reading from the link below....

http://www.drugs.com/levaquin.html


Now I DIDI KNOW about the potential for the "achilles" tear or rupture, I had read that. Plus of course some of the other side effects from most any type of antibiotic... stomach upset, and of course any type of allergic reaction.

BUT, this "black box warning" is fairly new on fluoroquinolones. Here is a bit about these types of antibiotics. I knew they were considered in a different "class" of antibiotics, but this is something any of us, whether "autoimmune" compromised or not:

This is a link from the FDA about these medications. I found several others, but rather than tell in detail about these "very new" types of antibiotics to come out, you find MORE on the "tendon ruptures" than you do about the heart issues... so here is the link:

http://www.fda.gov/drugs/drugsafety/postmarketdrugsafetyinformationforpatientsandproviders/ucm126085.htm



Now that your head is spinning and you feel overwhelmed with information, I just wanted all of you to know this. I realize MANY of us, especially with Autoimmune Arthritic and/or other Autoimmune Illnesses are "prone" to having infections. Doctors usually treat us with more aggressive treatments due to the fact as my doctor told me last week, we can go from up and having a bit a lung infection, throat etc... to ICU and extremely ill within hours due to our immune system! So doctors are caught in a quandary, as to what to do.

I don't blame them, as far as being in this place of do you "err" on the side of giving the antibiotics, especially with a patient, that is "immune compromised", possibly like myself, they cannot take "penicillin" based medications because in one way or the other we are allergic to them. Yet, when you have someone who has already gone through one round of medication, and they are not much better, if at all, you have to move onto something else, stronger, different and so forth. Well, now the problems lie. If you have a "healthy"(I mean as in heart healthy) patient, with no prior MI's, arrhythmia's, & knowing there is a definite "warning" that these types of  fluoroquinolone antibiotics in studies have shown to have a very, very minute chance of causing issues, then as most doctors probably would, they prefer to give the antibiotic for the 7 days, because the other might mean a patient in ICU, much more ill, due to not getting the meds immediately. Then of course, and I knew about the "tendon" tears. I had read that several years back I believe about Levaquin. I had been given Levaquin due to all of my knee replacements and surgeries where there is a higher risk of infection. Thus it was one that was used on me; it needed to be, so I was "informed", and took the antibiotics, without giving it much thought from there. At that time this "other" warning about the heart problems has not come to light as far as a "black box warning".

As I was "re-reading" over parts of these sites this morning, making sure I gave links where the information was, and to make sure you, the patients that may come in contact with these types of antibiotics have what you need in order to either research more, and/or ask your doctor if you are put on any of these types of medications. Whether "heart issues" or not, you may feel you want the entire picture before jumping into the lake, in other words.

I am not sure WHY I tend to RUN INTO the strangest issues medically!? It seems if something odd, unusual, rare, and whatever else you want to call it, you can bet I've either been through it, or have a good grasp upon what is happening when someone mentions certain events they come in contact with.

Okay, long enough... and of course I want to write about other things, so I end this with....

WITH ANY medication, ESPECIALLY something NEW to YOU..

DO YOUR HOMEWORK!

Don't RELY on the Doctor, Pharmacist, or health professional to give you "accurate" information.

IF you SEE something that is ODD, or something you "feel" could be harmful to you whether the meds itself, or maybe it might not "mix well" with some other medication you take, then question iT!

Yes, they are all "professionals", BUT they are HUMAN, and with our FAST moving technology in fields such as MEDICINE changes almost DAILY!!!! So, it could be your doctor has not be informed, yet you see it. Copy it, print it and take it in with you, if you are concerned.....

My hope is this helps others to be able to deal with these issues, if they come up, and have their own "ducks" all in a row.