Where Do I Begin? Life & Illness in the World of Lupus and RA...

Here is a more "detailed" look into a Lupus patients life. You never know from one moment to the next what might happen. Some things are just life and they happen. But, as you read below, you will know why I feel someone rolled back and forth over me....


I am not sure where to begin. I know many of you are already aware of all the stressful medical things going on right now with me. I have been in almost intractable pain now AGAIN (2nd time since January), and the docs have not yet found out what is wrong. One thinks its the RA/Lupus. (I AM having a MAJOR FLARE right now). The other thinks my joints in my hips, and in my toes and thumb are extremely degenerated causing the pain. I had both injected last week. The other thinks it is a combination of just recently finding out I am very low on B-12 anemic. I just began taking the injections and pills... and will have to forever. My body will not do what it is supposed to with B-12. Then the real kicker, is due to the osteoporosis, my pain specialist, along with myself honestly, think I have a compression fracture(s) in my lower lumbar spine. Much of the severest part of the pain goes from my hips, down my legs, straight down into my heels. The are several other things probably contributing to it, like the myoglobin being high that also causing muscle pain. Then I began to have teeth just practically falling out of my mouth lately. I have already recently had some "patch" stuff done on my upper front teeth, and now one of those, plus yet another top front tooth has a small chunk out of it. The I have TWO, upper molars, both the same tooth on opposite sides, that within a week, both had an entire half of the tooth disappear. So, neither of those can be fixed and have to be pulled. Plus I found another cavity that at least can be saved in a bottom molar just a week ago again. Or course then we had my husband had to have a tooth pulled, I've had to have the pain pump refilled very early, due to the hospitals screw up so I had to PAY ANOTHER CO-PAY within 3 weeks of one another. They are the ones that did NOT get the medication in as they were supposed to. Plus I am facing probably, lumbar steroidal injections, probably next Friday. We BOTH just has have new glasses, and by the way they are both awesome, and I will just say 39dollarglasses IS incredible! My husband just had to PAY CASH for his every other month dr. visit, so he can get the meds he needs... and they decided to do 300.00!!! of blood work. The told him it would be ONLY 100.00 for him to pay. Well hell, ONLY??? 100.oois LOTS of money to us for sure.  Gosh, and I feel horrible because I have not been able to even get out much at all. The heat makes it all worse. Well, then to top things off about a week ago yesterday, I work up very hoarse. My throat really was not sore or bothering me, I just almost had laryngitis. Well, that rocked along, and it seemed to be getting worse, and hanging around. Then about Sunday evening or Monday, the real fun began. My throat got SO SORE, including every part of my tongue, under and on it... the roof of my mouth covered and looked like it is going to bleed in the back of my throat, then I got the white gunk in there, and still not only can I not talk yet, this morning it is even worse. I can BARELY get a whisper out. IN all of this, I was using everything I had. First, I took antibiotics that I was given about 4 weeks ago. They had me on them, then said to get back off them when they found the B-12 anemia. Thus, I had 4 days of them left. So, I started popping them as directed, gargling with warm salt water as much as I could stand, putting peroxide in my mouth, and even dug out a bottle of "magic mouth wash" that is a script you use for thrush, a sore mouth, ulcers in the mouth and throat etc.. it has a couple of things in it to help heal and also numb the areas. So, I began using it, called for refills on it. I had refills but they had expired dammit. Well, I knew, about last Wednesday something was still very wrong. The mess seemed worse... so it dawned on me I also after all of the antibiotics lately probably have thrush. I have had it on several occasions and it needs of course Nystatin rinse, then my doctor gives me a straight oral lidocaine that is MUCH stronger than anything else. So, I call (and get my husband to talk for me) to tell his office EITHER I need a "sick visit") which would have been Thursday or Friday, OR if he wanted to, I feel too lousy to come in so just call in the medications he always uses for this. Well, they tell my husband that he has no appts. available. BUT the woman on the phone was NOT getting the fact that I would see one of the PA's. I did not have to see the main doctor, I just needed medication. I also told her to please ask hi to call in some Nystatin rinse, but forgot to mention the Diflucan and the lidocaine rinse. Well, hell of course they "missed" the boat on that one. He KNEW I probably had thrush. He also knew my immune system is SO messed up right now, me coming in to an office full of other sick people is probably not the best idea. Plus I already have TWO of the DENTIST appts set up. The first one, this coming Tuesday. And then the lumbar injections, and another dentist app. on the 12th... and see my RHEUMY FINALLY on the 14th!!! So, I NEED to get my mouth and throat well. The dentist I know will NOT touch me until my mouth is better. So, I CALL BACK Friday, let her know EXACTLY what the "usual" meds (all of them) are, spelling them to her etc... and they close at NOON on Fridays, SO I desperately needed to know if I was going to be asked to make a trip there or not.. Probably not, I thought. For one they must have everyone in Ennis sick or something. IT was almost like they did not even have any of their "sick" appointments they keep daily for someone such as I that need to be seen but the PA can do that, and take care of me for the most part. Well, I did NOT hear back from them BEFORE NOON!!!! Now I knew on Fridays they are in the office, but they do not take in patients on Friday afternoons. So, it could be that he was going to call all of the stuff in after he was settled and out of patient rooms. I was in tears and told my husband, that if my PCP did not call something in, I against how I feel about it, MUST go to the ER! I CANNOT physically afford to be very ill with an infection, thrush etc... I could easily get extremely ill quickly. So, LUCKILY, we had out contention plan ready. Supposedly we have a new clinic here in my home town that takes walk ins and they are supposed to be open on Weekends... you don't need an appointment etc... if they were not available and I was NO better, then we would do the dirty deed of ER. I NEEDED those meds. Well, FINALLY about 3:30 my docs offices calls. The woman says "okay, he said he sent in both scripts to your pharmacy. I was so thrilled, other than I knew we have been having HUGE issues with the PCP emailing scripts to our pharmacies ESPECIALLY Wal Greens. So I hurriedly called the pharmacy, well Jim did, to find out if those scripts did arrive for filling. Well, that part was at least not a huge ordeal. But, my throat STILL feels like I swallowed razor blades. It is not any better as far as my voice. In fact earlier it was worse. I cannot utter a word. BUT I did get the Diflucan script, along with the Nystatin and the lidocaine to numb it. I don't know how much I have "left out", as far as me "health wise", BUT I also have a couple of "family" issues, that are upsetting me extremely. I won't go into details, but they are just crazy. I have issues with a person (relative) that decides to have "drama" in their lives and upset everyone, including my Mom, every time I GET SICK!!! IT is true, and there is lots that goes along with that, like lying,borrowing money, losing two or three jobs... and so forth... and then we are just kind of getting a bit worried about our own money situation. Of course you can see all of the expense of the above is crazy... and then jobs for my Husband have been not a big of projects, or some put off (his clients) also due to the economic situation. Either they have the money, but are holding off for awhile. Or they themselves just do not have it right now. So, that is really stressing me out... And I know, bless his heart, he feels "guilty"... and as I have said to him a billion times, it is not his fault that our nation is in the crapper! Plus working from home, being a web developer, designer, and all of the other complex database stuff... makes it more difficult. Trying to get a new client now is hard, then your current ones are cutting corners. thus you just have to save what you can, pay off stuff with cash and not run up bills you can't pay... and watch how you spend it. Anyway, all of that on top of ALL of this MEDICAL mess with me is beyond words..
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