If I had thought of it...I would have created a "Bad Day" category on this Forum because we all have them and we need each other when that happens. So, I hope this thread will be a kind of Welcome Mat that's out for us at those times. Thanks, LC, for the idea. :)
My bad day is being sick and having to go on antibiotics after my 5 day vacation with DS in California last week. I have COPD and my guess is that it's from the recirculated air on the plane. There was also air pollution north of L.A. (Ventura) where we stayed plus a 6,000 acre wild fire close by and smoke. :(
Great idea LC! Feel better soon Luise.
Thanks. Hoping the antibiotic will kick in soon.
Hop you feel better soon Luise.My bad day is arriving from our very short trip to pick up fifth wheel,load it with the necessities.Running to store for groceries,picking up essentials we had missing for camping,Driving home today in very wet weather .I' m exhausted.DH is too of course since he sets up and drives.Will I be able to do this several times this summer?? Staying home in our new house sounds good but DH loves camping and travelling.The things we do for love.:))
Hope you are feeling better, soon, Luise.
KG
Day four on the antibiotic and I can feel it lifting. Whew! Thanks everyone. :D
Just a thought but maybe instead of a 'having a bad day' topic it would be nice to have a heading (like the grab bag, AC, MIL...) for "need some encouragement" where we could post something when we are having a bad day and just need someone to say something to make us feel better. I know that whenever we post in the other sections (outside of the success stories and the grab bag) we are actually looking for someone to help us feel better but the other sections are actually looking for advice too. Sometimes we know what we 'should' do (yes, one of those shoulds!) but we need some kind ears who will listen and say they agree.....or not??
In my first post I admitted I should have had a category for this, no matter what the name. The problem is I have no idea what it would take to go back into the software and do that. My webmaster is my son, and he does it for me for free even though he's incredibly busy...and...I have just asked him to see if he can restore the post editing feature after a request was made for that. We gotta' go easy on him. When that happens (I hope) we'll give him a rest and then hit him again. ;)
Today started out pretty challenging. I woke up crying, feeling sad about the estrangement between DS and myself, and trying to figure out how I'd feel if he didn't do anything for Mother's Day (like a quick post on facebook, or an email), versus if he did something vulgar or hostile (which he's done in the past for my birthday). Felt like an absolute failure as a mother.
I wanted to just crawl back into bed and cry, but decided I needed to tell someone how I felt. I vented to a couple of friends who know the whole saga of my son's problems and behavior over the last couple of years, and then I felt easier about letting it go. I posted "Happy Mother's Day" on the facebook walls of all the ladies on my friends list who are moms, and then did some nice things for myself.
Got a few nice messages from friends, and got a wonderful phone call from another friend who had issues similar to DS's when she was his age, and who was kind enough to remind me of that, and tell me about some of the horrible things she said to her mother at the time. She reminded me that I'm doing the right thing, and that the ball was in DS's court now. Her call was the best gift I could possibly have gotten.
Hung out with the ladies in my knit/crochet group for a couple of hours, had "beeramisu" at the pub across the street (lady fingers soaked in stout and coffee and layered with creamy mascarpone - heaven!), and spent the evening watching Batman cartoons and crocheting, lol. I'm so grateful to this site and to my other friends, all of whom encourage me to focus on the good in my life and let the rest take care of itself. Love you, Ladies!
E - What a wonderful example of being proactive. I'm deeply touched and am sending love...
So glad you had people to share your bad day with, and in doing so, made it better!
Elsie, you met the challenge with flying colors. I know it's hard but it sounds like you created a good day out of a bad one. I'd not heard of a beerimisu, but it sounds heavenly.
I'm learning, with the help of everyone here at this amazing site, to acknowledge my pain and sorrow and move on. There isn't anything good in wallowing due to things I can't change. I understand feeling like a complete failure as a mother when all the years and effort you've put in amount to nothing (as it appears to us on our down days.)
My DDD threw a fit 20 min into her mother's day visit and had to return to her group home. My DS was too busy studying to visit, but he had called a few days earlier to apologize in advance for not coming over. DH & I did some gardening; playing in the dirt is curative for me, but I must admit to tearing up at times during the day.
I know it isn't all about my kids; my job is uncertain after 25 years so I'm feeling a bit like a failure in that department too. Makes me wonder what I've accomplished in all this time.
Sorry Pen. I don't think there will not be moments for all of us, even after we accept the situation and move on, that don't creep up every once in a while. I have mutual friends on my FB with DIL, so about once a week, my GD's face pops up because a mutual friend will comment on a picture of her.
So even though she is 7 months old and I've never seen her in person, I actually have got to watch her grow and change. So even though it's painful when she pops up on my page, at the same time, it brings a smile to my face, so I wouldn't change a thing. She is the spitting image of my OS.
I think what you said, is the secret to moving on. You allow yourself a few minutes to grieve and then you move on. I have learned to acknowledge that it hurts, and then I acknowledge that my life is blessed with tons of other things.
Yes, Pen - we need to feel what we feel and still not get stuck there. Simple but not easy! Sending love...
Quote from: luise.volta on May 11, 2013, 07:15:05 PM
In my first post I admitted I should have had a category for this, no matter what the name. The problem is I have no idea what it would take to go back into the software and do that. My webmaster is my son, and he does it for me for free even though he's incredibly busy...and...I have just asked him to see if he can restore the post editing feature after a request was made for that. We gotta' go easy on him. When that happens (I hope) we'll give him a rest and then hit him again. ;)
Hi Luise,
I think it's fine just the way it is.... hope you are also feeling better :) I'm new here and have shared my "lenghty" story in the opening section, forgot what it's called!
As far as having a bad day.... it seems like these past 9 months have been hell with family issues, son's wedding, and with in-laws, not that there weren't any in the past, but I really feel like I won't get above all of this, I really feel like I'm drowning is such pain and hurt and sorrow. Because of my illness, stress perpetuates more pain and suffering and the vicious cycle never seems to end! So, this struggling is ongoing, daily now for over 12 years.... Sorry to sound so melodramatic, but I cannot change how truly sick I am, this is also a huge struggle with many not getting it and showing any compassion.
My spiritual belief system is my Rock! And, continuing to do what I can and finding things to keep me going, although, sometimes not really needing any extra because life is already too busy, but, finding enjoyment in things such as sewing, even though it may take a long time to accomplish and finish it. And being grateful for even the smallest of blessings.
Quote from: luise.volta on May 15, 2013, 11:25:40 AM
Yes, Pen - we need to feel what we feel and still not get stuck there. Simple but not easy! Sending love...
It's not easy to move on..... my heart is so heavy, not just for myself, but, for all the stories I have read here.... knowing that many "mom's" are going through similar things as me. Missing our children and not understanding why they don't care, why they don't want to continue in a loving relationship with us, why they would even choose to prefer one family over another. Why it's so hard to make a genuine effort in any area of a relationship with their own parents and also to do this with their children and grandparents.
My take is that "Whys" are almost always about expectations. They are ours and no one is responsible for meeting them. We give our children our best and when they become adults they are at choice. This is really, really hard!
Thanks for this thread! I've had a couple of bad days recently myself and am trying to pull out of it but finding it difficult. I'm reading Anne Lamott's "Help Thanks Wow" book, working out, counting my blessings, yadda yadda yadda - and still find myself in tears at the least little thing. Sure, it could just be hormonal and not due to missing DS, being worried about DDD, being forgotten and overlooked at work, not having extended family around, etc. One mental image of someone else's happy family gathering (usually DIL's FOO or my SM & DF w/ SM's AC & GC come to mind) and I'm off and running - envy, sorrow, anger, you name it. Arrgghh!! This week acceptance is elusive but I'm still hopeful, I think... :-\
I, for one, go that at times, too...P. I wonder if we all do? Listing everything we are grateful for isn't an eraser. The list of what we would like to be different doesn't go away, including the sense of injustice and unfulfilled expectations when it captures our focus. Sending love...
I have that at times as well and it seems to be triggered by some small thing and then it really isn't about my OS. It's about everything that is going on. Health, chronic pain, GD, the weather.....you name it. Something with OS may be the trigger, or OS injustices may appear with the rest of it but I've figured out it's more like "life is not fair and here is my list of everything that is going wrong!!!!!"
I think it's normal and if we didn't have "Family" - whatever your title is - insert here) issues, we would still have these moments about everything else in our lives. Life is hard. Even without the problem title/titles we discuss here, it would still be hard at times. That helps me put a perspective on it when I get like that.
Hang in there Pen...thinking about you.
That's wise, Pooh...and useful. It's kind of an avalanche thing for me. My take is that it's healthy and necessary to acknowledge this stuff. Then I have to be careful to not get stuck there or the blessings fade. Love you guys!
Luise, that's exactly what my counselor told me yesterday. I have been having a few bad days, missing DS and feeling like an old bridge in a failing infrastructure (what's the term they're using - "structurally obsolete?") I was concerned because I haven't been able to completely shake some hurt and sadness that has crept in lately. (DS has been busy w/ILs & work & school, I get it. DS will be traveling, I get it. DS said he'd try to fit in a visit but hasn't been able to and now it will be months 'til we have a chance to see him. At this point a phone call would be great, but I'm not holding my breath and I'm certainly not going to initiate it.) Anyway, I just wanted to make sure my feelings were justified. My counselor assured me they were - if I were calling him daily, stopping by his work, knocking on his door, etc. my behavior would be crazy. Just missing my son isn't crazy. She said we have to acknowledge our feelings and be OK with them, but if they take over our life and make daily living impossible we might need to seek help. She then reminded me of the "Welcome to Holland" story and I said it was more like "Welcome to __________" (a depressed city in the US.) I'm off to count my blessings now :)
Good for you, Pen! I once thought positive affirmations would erase or at least cover up my pain. What I learned was how unhealthy it is to try to deny my feelings about what is to simply the truth. It's part and parcel to how my life turned out...at least for now...(and that's where I live.) It's a process and when I honestly feel how I feel...I can move through it. Not to denial and pie in the sky but to acceptance...however qualified by my pretty darn reasonable expectations. There's a place I call. "It is." And even though I never get beyond it to "So what?"...I can still bring my positive affirmations forth and flourish. "You matter, Luise...no one can decree that you don't unless you agree!" Like that... :-)
Pen, I know what you mean, I find myself just looking at everything around me and everyone....living situations, health issues, family issues.... and it feels like weights pulling you down. But then my eyes get watery or I have a good cry and I usually feel better because I know I have to keep going. No matter how tough things get I just keep moving. This is the toughest thing to do at times but we do it.
Yup, we keep moving. Instead of counting blessings today, DH asked me to help him screen the dirt in our raised bed herb garden to get out Japanese beetle grubs. There were a lot of them. Almost as many as blessings, lol. Anyway, it was like a meditation after I stopped whining and got into the rhythm of dig-search-toss-dig. I'm still sad about DS, but I got a lot done and the huge rack of ribs DH has been smoking all day is almost done to perfection. Yum!
Sniffing the air...yum! :-)
Yes. Getting busy and letting go of a train of thought is what happens to me when I exercise. My focus shifts...and I move out of the perception my mind is dwelling on and the attendant emotions! Whew!
I've been having a few bad days.. First off.. We had to have our beloved little Doggie put to sleep last Wednesday... THEN my husband worked Friday.. Saturday, Sunday, and Monday.. so I was alone all 4 days and feeling sorry for myself. Especially when friends on FB were posting pics of family parties, Barbeques, and camping trips.. I realize that I really have no family... and it's depressing. Most times I try to stay busy and focused on other things... It's holiday weekends alone that bring it all to the forefront. I tried to get out to our cruise ship, but didn't quite make it.
LC - I hear you. I've gotten stuck the same way more times that I can count. Not so much any more but I have a few years on you. My main support person left yesterday for five days at a conference in the Midwest. Lets meet over "you know where" right now! OK? Sending love...
So sorry to hear about your beloved doggie, LC. Losing a pet is very difficult. It's also difficult to realize you have no family - I've been dealing with this lately, too. Avoiding FB helps, but TV commercials and innocent conversations with friends can sink me pretty quickly if I'm not careful. DH isn't very supportive - he doesn't have the need to have anyone but me in his life. Unfortunately I am more family-oriented and social.
It's bizarre to find myself in this situation, not clear on how I got here..DH & I stayed put, everyone else moved away and/or got involved with their shiny, new families. It's very sad to go from a big family table to TV trays. I did not choose this, and I'm still not used to it. On the bright side, less clean up and a lower food bill.
Just a thought: I wonder if we would like to have a pet memorial thread with pictures? I can't believe the loss I still feel two years after my Chihuahua, "Me, Too" left us. There is nothing like doggie-love in my experience and when I got Rosa, my Corgi-mix sweetheart, it was a shock to get that she has a longer life expectancy than I do and that I needed to arrange for that before I took her....which I did. My dear ex-DIL will take her.
I was reading through all this and I just can't get past grubs....... :)
LC, sorry to hear about the loss of your dog. It's a big loss, you can always rely on them for unconditional love.
I have been dealing with an infection (or something) in my jaw. I've been in pain for 3 weeks, and my dentist and his lame-brain (wife) of an assistant have really dropped the ball. Instead of scheduling another appointment after 10 days when the antibiotics didn't lick the infection the assistant took it upon herself to give me her advice (take probiotics and fill your mouth up with olive oil for 20 minutes at least once a day to draw the toxins into the olive oil)....thereby bypassing my request for an appointment. The dentist and his staff had been away from their office for 3 days on some training program (I used to do those on the weekend) and she was unwilling to schedule another appointment for me. I only called back because the dentist to me to call him immediately if the antibiotics didn't work. I don't know much about medical issues, but I do know that infection left untreated can be a big problem. The x-rays that they took didn't clearly show the infection and they couldn't identify which tooth it was, but frankly, they went to dental school......they should be able to figure this out.
I've dealt with husband and wife teams before and I won't ever again, unless the husband is the assistant. I'm still going for blood tests for the kidney issues, and have moved the appointment to Canada at the end of July, so another issue that is being addressed with all the insight of the village idiot is trying my patience severely. (That dentist lives in a village)
I've got an appointment with another dentist next week, and hopefully he might be able to sort this out. I'm worn out, I've been in pain for a long time and I'm starting to worry that I might have another serious issue to deal with in addition to the kidney stuff.
Yesterday, for the first time in 40 years I thought that I might find a way to buy and smoke some weed, and maybe get some kind of relief from the jaw pain. I'm not taking any painkillers because they might have a negative effects on my kidneys.
I'm going for a massage today, but right now I'm longing for the days when I had a GP who I could rely on and who I respected and had confidence in, and my former dentist (now retired) who saw me through 27 years of teeth and jaw problems and who never would have left me to twist in the wind for weeks in pain.
I go to get the orthotics fitted in a couple of days........I see a lot of bills for specialized shoes in my future.
They say that patience is a virtue, but I'm pretty much scraping the bottom of the barrel today.
KG
KG - Fu Manchu! What a bummer! I am so glad you are proactive and so sorry you have to be! Sending love...
I once had what I thought was a bad tooth on the upper jaw that turned out to be a sinus infection. My dentist decided it was because I kept telling him which tooth was hurting when he thumped it but the tooth kept changing (even though I did not know he was thumping a different tooth). Maybe you have a sinus infection and could get an appointment earlier with a general doctor than you can get with a dentist? I would definitely avoid any doctor who told me to hold olive oil in my mouth to draw out the toxins.......
Hi JoAnna16, the problems was the dentists assistant who happens to be his wife. She refused to give me a second appointment and gave me hippy, dippy, unsolicited advice when the dentist told me to call and get another appointment if the antibiotics he prescribed didn't clear everything up.
I have an appointment today with a new dentist but I'm considering filing a formal complaint with the regulatory bodies, she has no business hijacking the treatment plan and keeping me in pain, and perhaps making the infection worse for another week.
It wouldn't surprise me if there is an infection or worse. I've been sick constantly for the last 7 months, have an appointment with a kidney specialist in 2 months so I'm pretty certain my immune system is pretty well shot so I'm being hyper vigilant about any type of illness or infection.
Thanks for the suggestion.
KG
Beter day today, the new dentist is very nice, explains everything from a to z and has determined I need a root canal. That's not much fun, but at least I know what I'm dealing with.
Nice to have a thread to vent in, Luise.
KG
Quote from: Keys Girl on May 29, 2013, 03:24:37 PM
Beter day today, the new dentist is very nice, explains everything from a to z and has determined I need a root canal. That's not much fun, but at least I know what I'm dealing with.
Nice to have a thread to vent in, Luise.
KG
Don't sweat the root canal.. I have had tons of them.. they numb you up deader than a post. The worst part of it is holding your mouth open so wide for so long. I can sympathize with you about stupid dentists. I went to the Marquis de Sade...for my tooth extractions.. I will not go back.. UNTIL I absolutely have to.
I DID have a dermatolgist appointment last week for a complete skin check... Let me tell you.. I was not prepared for the "completeness" of it! I'll leave that up to your imagination. Anyway.. she did biopsy 3 freckles and burned off some funky looking thing.. She said she doesn't expect any bad news... but that I should come back every year to have my moles and freckles checked for changes.. I am very fair skinned and spent my misguided youth sun worshipping.... like many our age. SOOO... you all may want to consider this check up.. just to be safe. Next I need to get into the opthamologist for a good look-see in my eyeballs.. and pressures measured.
What a relief to know what's wrong. Now, just drop your former dentist's wife/assistant a note and tell her to go soak her head in olive oil! ;)
Thanks LC and Luise, I'm actually thinking of writing a type of column in the local newspaper about the "olive oil" miracle cure in lieu of root canals or write to Dr. Oz and have him put this on his list of bogus "cures".
It is a relief to know what's wrong, and I'm going to schedule the root canal once I get through the move into my new apartment.
I'm also hoping that this new dentist will be able to refer me to a new GP who will allow me to ditch the breakfast eating GP that I'm currently stuck with.
Plan B........is hopefully coming down the line and B stands for Better.
KG
So sorry for all of your issues KG. One thing I have learned is I am starting to take my "medical" into my own hands. Don't like a Doctor? "POOF! Bye Bye" Don't like a Dentist? "POOF "Audios don't let the door hit you...."
I've had a rough week and a half myself and I am ready to go literally choke someone over my latest....so I am pretty much firing all my current medical and dental people :) With-in the next week, when my copies of all my medical records come in from my MD, you may see the maddest person you have seen in a long time.
Good for you and I'm so sorry you have to put up with such dangerous incompetence! Fu Manchu! Please let us know how it all shakes out. Sending love...
I agree with you Pooh, I have to hang on until the end of July when I see the kidney specialist, but at some point in time (in the very near future) I look forward to borrowing the phrase from Donald Trump "You're Fired" and saying it to the GP who thinks it's fine to bring her coffee and muffin into the examination room. Yup, if they aren't doing a decent job, fire 'em all. Life is too short and if they aren't helping to make it longer, there is no need to keep them around.
I'm going to leave a comment on the "RateMD" website about my former dentist's assistant, who thinks she's Dr. Oz. (Even Dr. Oz knows he didn't attend Dental School)
Take it easy, Pooh and I'm asking for copies of all my medical tests to be sent to me so I can look them over.
KG
Don't get me started! Lol..
I understand that we have to be our own advocates and do our own research so we can make the best decisions we can, but sometimes I think, "Isn't that what I'm paying you for???" If I need to become my own doctor/car mechanic/contractor/banker/lawyer/social worker/hairstylist I might as well go to medical/mechanic/building/finance/social work/beautician school to earn a degree so I can get compensated financially for my new-found knowledge.
Keep fighting the good fight for your health, ladies. You're worth it!
Don't get ME started either. I work in a hospital and review MD documentation... I don't think you would believe the lazy, slipshod way they behave... and the tricks they pull. They are not above that... WE MUST keep an eye on them for our own protection.. but the problem is that most people don't know when they are being mishandled. That is truely frightening.
You ladies have given me the nudge I needed to get out from under my GP and start seeing an endocrinologist for my diabetes instead. First appointment on July 3rd - good thing I still have refills on all my meds!
LC - I hear you! Learning Self-Advocasy sure seems to be indicated. I changed Primary Physicians to one on my bus line when I stopped driving last Aug. Mine of 20 years was in the next town....same clinic. New guy supposedly specializes in geriatrics...(speaking.) Not so, he specializes in bland incompetence. Right after I made the change, Kirk and Sandy moved back here in Sept. from living in Hawaii for 17 years and there was my ride! :-)) Lots of red tape later...as of June 1st, I have my old, Primary Physician back. His practice has been closed for years but they bent a few rules. ;) I see him this Friday and Kirk and I are going out for lunch afterward. :D
And yes, I see a direct connection between my no longer driving and Kirk and Sandy's migration back to the mainland but they swear there isn't one. I suppose they are splitting hairs between the definition of obligation and love. :-* In my defense, they both seem pretty tickled to be back "home."
Oh I'm just saying, if something pans out that I'm thinking is going to....I am seriously going to go off the deep end with my MD.
I finally had my new Rheumy appointment two weeks ago. The one I have been waiting on for 5 months. For the first time, I feel I have found someone that is competent, cares and truly knows what he is doing. Part of it is my own fault, because I know there is no cure for my autoimmune that I was diagnosed with in 2011. Ok, I've learned to deal with that and have been chugging right along. I started having some massive headaches back in Nov and Dec. So not normal for me. Then my knees started hurting pretty badly. Everything I know about my disease says those are not symptoms. The headaches could be, but shouldn't be having knee pain. So I saw my MD in December for my regular check-up, told him about the new stuff and he kind of brushed me off saying autoimmune can act strangely. Ok, I get that. Then he says again, "I still think you have Fibromyalgia as well."
Ok, so I leave, with no new info or explaination and by January, my ankles and wrists are starting to hurt. I'm not a whiner, but I could barely go up and down the stairs. So I finally broke down and made the appointment with the Rheumy my support group has told me is just wonderful. The last five months I have limped (ha ha) along waiting. So I see him. And LOVED him. He spent over and hour with me, asking very detailed questions before he ever even touched me. Then he did some physical examinations, including some type of exam for Fibromyalgia. Looks at me immediately and says, "You in no way, shape or form have Fibro."
Ok, score one for me! He then finishes and sits down. He tells me that my Morphea would not be causing everything I am experiencing. He says he can feel inflammation in pretty much every one of my joints which means something else is going on. He tells me to get ready to be drained of blood because he wants to run multiple tests, including some I had already had a couple of years ago. And he wants Xrays of both knees and feet. I am to come back in a month and sit down with him and go over everything.
He says that if he was a betting man, he knows exactly what is going on with me. He says it's Sjogrens, another autoimmune worse than what I have. Based off specific questions he had asked me, (now that I have read up on it), he is pretty confident and he's confident I have had it for awhile and it was causing some damage.
Ok, so I'll find out for sure on the 20th and deal with it then. In the meantime, leading up to why I am going to be very mad. In researching all the tests he's running, and then looking at the Sjogrens tests, one of the markers for it is a specific antibody that shows up. When my MD was doing all those tests 3 years ago, the nurse had commented on my test results from the Lupus tests and such, that I had no raised ANA, and I'm pretty confident in this, I had tested positive for SSB. She said hmmm....still autoimmune then. This was before they knew what I had. I asked the MD when a year later we finally knew what it was, so that's what the one test was showing awhile back? He said, "Yep. That would be it."
I find out now that the test I am 99.9% positive they said was the positive one, is the marker for Sjogrens! It has NOTHING to do with my Morphea! Grrrrrrrr.
KG, that's what I just did. I have went back to my MD office and asked for copies of my entire record. Of course I am having to pay for it and wait on it, but I want to see if I'm remembering correctly. If I am, I'm firing my MD and I will tell him exactly why!
And now to top it off, I had my yearly thyroid scan last week, to keep watch on the teeny tiny nodule I had and the ENT office just called and said they needed to see me. That I have developed another one and it's bigger. When I told them what was going on, she said let's schedule it after you go back and get the results on the 20th because if it's Sjogrens, it will make a big difference in how he wants to treat it.....Grrrrrrrrr.
Deep breath. Ok, now that my rant is over.....yes Elsie, please see a specialist. And if you don't like that one...find another one until you find one that is good. And get copies of your record/test each time you go or have one, because you more than likely will not have to pay for it then and can keep up with them. If I had mine and taken them with me to the Rheumy, and I was right about the SSB, he probably would have diagnosed me right then and there and started the meds.
You've got a couple of keepers there, Luise. I'm glad you are all enjoying being closer geographically.
Pooh, so sorry you're dealing with all this medical ridiculousness (in lieu of another term.)
Pooh, a friend of mine had Sjogrens, it took some years for a new doctor to finally recognize it. Sounds to be like you need a new MD.......I think it would be a good idea to get copies of everything sent to your lawyer. I'm thinking of doing that with my ring-a-ding doctor and asking my lawyer to just put it in a file for future reference.
Most patients let the doctors retain all the info and trust them with their care. I don't have any reason to trust my GP so I'll proceed with caution and I think everyone should know that they are entitled to a copy of their records.
Lillycache, I can certainly believe that all kinds of shenanigans go on with patients' records, etc., and who knows what else, doctors have a lot of power and status in this society so there is lots of room for lousy-goosy fooling around, and with that in mind, I wouldn't be surprised to find that some of the records that are being forwarded to patients asking for copies are (*oops) mistakenly inaccurate.
I'm about ready to find myself a shaman, some dude who will wrap a bouquet of onions and garlic around my neck and chant something or another (looking for a Matthew McConnaghew look-a-like). I'll bet I would feel better after that than I do after I leave my current GP.
KG
Some of this is nearly unbelievable! I wish, as an RN, that I didn't believe it, but I do...
Thanks KG. If my memories are correct, I will definitely be firing this MD. I guess I wouldn't be so mad, because I truly believe Doctors are humans too and entitled to make a mistake now and then. I know diseases are complex and hard to diagnose sometimes. But during that time, they were actively searching for what was going on. How do you miss that when you are looking? I'm also just sick about it because had he caught it, and started me on the correct meds, I probably would have saved myself most all the dental problems and probably most of the joint deterioration. It's just been the last year, and especially the last six months, that everything has occurred.
KG, I do have a back-up plan on this one, in case what you suspect happens. The test was actually ran by the first Rheumy and the results sent to my MD. I will have my new Rheumy officially request them from the old Rheumy, without telling my MD and see if they say the same thing if I feel something is off.
Ok, I'm going to have to chill until I get those copies to see if I'm remembering correctly and until I go back to see what Rheumy says.......deep breathe....deep breathe.....
Pooh, I'm in your corner. Dealing with something they were looking for earlier is what they should have done earlier. While I think doctors are human, I'll give them a mistake or two when it comes to picking their flavour of ice cream, but blunders and careless procedures are why they have malpractice insurance.
It's one thing to be human, it's another to be incompetent or lazy or careless and that's unacceptable.
Hang in there, Pooh.
KG
...and I remember the doctor that diagnosed you at a Duck Race, Pooh! :D
Pooh, reading your post got me motivated. After a couple of hours on the internet I have identified a GP whose office is literally around the corner and who has some very positive reviews including one that said he was the "best doctor I ever had". I'm going to walk over tomorrow and see if by any chance he's taking on new patients. If he is, I'll find out if I have to wait out the next 7 weeks before I go see the kidney specialist and hopefully I'll be able to say "Bahh, Bye" to the sad excuse for a professional that I'm currently dealing with.
Thanks again Pooh,
KG
Good for you, KG! We'll all go with you! ;D
Luise, truly hope you are feeling better. Living in the Palm Springs area of CA I know those fires can be fierce in the summer and so sorry you were affected when you should have only had joy during your time with DS. Feel better. :D
Thanks...all better and back to normal! :)
Thanks, Pooh! Good luck to you and to Keys Girl in getting everything straightened out and beginning to have some relief. I would be livid at the old doctor, and I like your plan of telling him why you are moving on, once you have confirmation.
Yes Luise, it was that accidental run-in with the Dermatologist at the duck race that finally gave me a diagnosis :)
Keys, I am so glad you are checking them out. I went through a period in the beginning where I was just pretty trusting that they knew what they were doing. Then as my frustrations grew that they couldn't find anything, I kind of pulled stubborns and just quit looking. After the accidental diagnosis, I got going again and was pretty proactive about going, but when you hear several times "It's part of the disease. You are going to have all kinds of things happen," you tend to get complacent (raises guilty hand). So I've just been chalking up everything to the disease.
I could kick myself now for being so trusting and this has set me over the edge. I will not do that again. If I see a new doctor and I don't like them, I'm looking elsewhere immediately. I love this Rheumy, and the ENT that is dealing with my thyroid nodules is great. The last surgeon I saw (for the mole removals) was really good so I feel confident in those three. Now I need a new MD and a new Dermatologist. I may have insurance, but they are getting paid to treat me and they took an oath to do so. I'm over the attitude that I should be grateful that they are seeing me.
Elsie, when I went to request copies of my entire medical file, even the receptionist was rude. She went, "Why do you want it?" I said, "Because I do." She started asking, "Are you changing doctors...why do you want the whole thing....you know it's going to be expensive." She was giving me the Spanish inquisition. I finally got ill (face it, I was there on a mission and wasn't in the best of moods) and told her, "By law I am entitled to my entire record by filling out your request. I know I have to pay for it and I want it because it is mine. Anything else?" She just glared at me and handed me the form. :)
Although when I told DH that if what I was remembering was correct, I was going to schedule an appointment just to give him a piece of my mind, he said, "So you are going to go pay him more to tell him he's an idiot?" Drat it! I hate when my DH has a level head......
Oh, yeah...level headed is the pits. Been there. It was one of Val's greatest failings.... ???
And if I remember it right that Dermatologist was nothing to write home about, either, in his actual practice. What is it with these "Gods?"
You have such a good memory. Yes, after the moles came back pre-cancerous, they sent me a letter telling them to contact them immediately for further removal. Then I spent the next 6-7 weeks with voice mails, trying to get someone to call me back, including my RN calling them as well and they wouldn't return her calls either. They kept giving me the run-around about who had my file, results, vacations, etc. I finally got my MD to send me to a surgeon who took care of it.
Amazing, when the say they have time constraints...that they waste so much of their own while wasting ours!
I wasn't a happy camper. You don't send a letter to someone telling them to call ASAP because these have to go and then don't return the calls. After they wouldn't return a Doctor's office call either, I knew they were not going to be good to deal with.
You know, it sounds like what KG is talking about...right hand and left hand employees that don't talk to each other or even agree on what they're doing. I boggles the mind...
Pooh, I just read up on Sjorgren's since I didn't know anything about it. I'm so sorry you have to deal with it. I didn't know that Shannon Boxx, the US Women's soccer team star, has Sjorgren's. I agree with DH, don't give that clown & his minions one more dime. Take out a full-page ad in a local paper instead, lol! Wishing you the best of luck with your new doc.
Thank you Pen. I didn't know anything about it either. I read about Shannon Boxx, and then I found the article on Venus Williams. It's what caused her to drop out of the US Open a couple of years ago. I remembered that but didn't know it was Sjogrens that she had.
It does fit everything that I have going on and have had going on for the last 3 years. There is so little information available about the Linear Morphea and now it makes me think that it has been Sjogrens that has been causing the majority of my issues.
Pooh, I would never have a meeting with a doctor to tell him I was unhappy. I would write a letter, (not email) and send it via Registered Mail. I don't know that it makes any difference to file a complaint with the regulatory bodies, in my experience these bad dogs are could win awards for Blame Shifting. I would ask for the records via the same route. If you don't get them within a short period of time, then file the formal complaint with the regulatory bodies. It's such a waste of energy when you aren't feeling well, but these "professionals" shouldn't be given the opportunity to deny you said anything to them in a closed room.
I did the same route last year when a doctor's office in the US wouldn't give me an itemized size of services so I could process the claim in my insurance. I called the State's Board of Health, fired a complaint and they stonewalled the State too! After months and months of phone calls and emails, everyone realized that I wasn't going to give up until I got the docs and I promised to file a formal complaint with the Governor's Office, if I didn't get them. They sent the docs. (Too late for me to collect, unhappily I'm out of pocket $500 because of their stonewalling) but I hope the State will keep a closer eye on them.
In the future if anyone gives me any hassle while I'm traveling I'll pull out my phone and tell Master Card to cancel the charge on my card and then walk out the door. Some staff take out their ire on their boss (the doctor) by treating the patients badly because they work like slaves and get paid peanuts.
Another piece of good news, I have also found out that my target new GP works at an emergency clinic around the corner, so I can try to see him there and hopefully get into his regular practice. I'm going to scour the net in the future before I deal with any new medical professional and it wouldn't be a bad idea to check with the regulators to see if they are previous or outstanding complaints, Pooh.
Hang in there,
KG
Pooh, found this online....
http://patients.about.com/gi/o.htm?zi=1/XJ&zTi=1&sdn=patients&cdn=health&tm=94&f=21&tt=2&bt=8&bts=8&zu=http%3A//diagknowsis.org/reportcard/index.htm
KG
Oh that's great KG, thank you.
Well, I got my medical file in the mail finally. And not only was I right, but there was more that I didn't expect. There was not a copy of the labs the first Rheumy ran included, only those that the Doctors office have ran themselves.
But, after the first Rheumy ran all the stuff for Lupus, I had a follow-up appointment two weeks later with the MD to go over the results. The Rheumy's nurse had called a couple of days later and said, "no lupus", follow-up with your Dr. About 3 days before my follow-up appointment, I got really dizzy at work. To the point I thought I was going to pass out and felt very strange. My boss called the paramedics up here and they did a quick check and told me I either needed to go with them or call my Dr. and let them check on me because my blood pressure was really high. Not wanting to pay a huge ER/ambulance bill, I called my Dr. and went to his office. They did an EKG and said everything was fine, maybe I was getting an ear infection, put me on antibiotics and call back if I wasn't better in a few days. Told me the Lupus tests came back fine (and this was the appt. I was remembering where the nurse referred to SSB), so we would just keep looking.
So the Dr.'s chart notes for that appointment are in my records. You are going to love this. I quote: "She does show Sjogrens antibody on her serologic workup from the rheumatologist but no other specific tests were found as abnormalities to predict a rheumatologic disease. On EKG, she is slightly bradycardia. Her heart rate was 50 on that test, though she had a pulse of 74 when she first came in the office. We will keep check as she indeed has symptomatic bradycardia and we may have to refer her to a cardiology for possible pacemaker."
ARRRRGGGGGGGGGGGGG!!!!!!!!!! That was in June of 2011!!!!! No mention of the Sjorgrens and definitely no mention of being slightly bradycardia!!! Seriously, I could go rip his head off!
OMG! :o
Good gosh, Pooh that is total and complete incompetence/dropping the ball/irresponsibility on your doc's part. I'm fuming for you!!
??? I wanna' squash him like the bug that he is! Look at what you have had to go through! You could sue for malpractice but it might cost you more, personally, that it's worth. Spitting nails, here!
Thanks for being mad on my behalf! I couldn't believe he actually charted it using the word "Sjogrens" and the heart thing? Ugggg. I have been getting dizzy about once a month and have just chalked it up to my meds. Now I don't know if that could be it....sigh.
I return to the great Rheumy Thursday for all my follow-up on the tests he ran and I'm taking the medical records with me to show him what I found. I'm also going to ask him if he can recommend a good PCP.
I'm so ill. The main med to treat Sjogrens takes anywhere from 6 months to a year to kick in and help. Had he started me on it two years ago, probably would have saved a lot of my dental problems and now my thyroid problems. I would say Luise you are right about suing him. It would cost me in the long run. Instead, I'm going to write the letter to the review board and I shall be writing him bad reviews on every Dr. review site I can locate.
Congratulations on taking control of your health!! Too often we go in and talk to a Dr. for five minutes and expect him to cure us. I have found a way of figuring out if your Dr. is good or not. Ask questions!! A lousy Dr. will almost always tell you to trust him/her and treat you like you have no brain. Sometimes a good Dr. will do that too. If your Dr. sits down and explains what he is doing and why the chances are extremely good that he/she is competent.
Reminds me of something I heard once. By a process of elimination there has to be a 'worst doctor' somewhere. And someone has an appointment with him/her tomorrow.......
Pooh, I can't believe what I'm reading........a lawsuit is going to drain your energy, but this is unforgivable. There are lots of other ways to deal with this kind of neglect.
I think it's time for everyone to get their medical tests ALL the time and learn how to read them. We have been conditioned to trust these medical professionals (?) and to leave everything in their hands.........
In addition to the review board, I would certainly contact the manufacturer of the Sjogrens drug to find out what other drugs they have in the pipeline that might take effect faster, and perhaps even a referral to a top researcher because of the two years and side effects that you went through, and of course, there's probably a nice little story for one of the morning talk shows if the manufacturer is looking for some brownie points in the media.
I hope everything goes well on Thursday, just concentrate on keeping yourself well.
KG
Wow, Pooh. I think the letter and the ratings are a good idea. I wish I could undo this for you and wind the clock back on your behalf. Sending my best vibes for you to find a good PCP that's someone you can trust and work with.
Sigh....well now I'm really having a bad day. Totally unexpected follow-up visit. Yes, I have Sjogrens (which I expected after the other labs two years ago.) What I didn't expect was to add a third autoimmune. I tested high for an enzyme that indicates Sarcoidosis as well. Sent me for some more tests yesterday afternoon and waiting on a call next week on a muscle enzyme test they ordered. Comes back elevated, then EMGs and a muscle biopsy.
I'm a bit bummed at the moment and I really need to find a really high mountain and just go scream for awhile.
What you are going through sounds so awful, Pooh. I remember reading "When Bad Things Happen To Good People" a long time ago, and if I still had it, I'd send it. This is above and beyond the imagination and I, for one, am headed up the mountain to scream with you! Sending love...
Pooh, that sucks. Autoimmune disorders are so weird & unpredictable, DD & I have each dealt with mild ones but nothing like what you're going through. Screamin' with you...
Thank you. The only reason he even ran that one was because of family history. I have two autoimmunes in my history. Diabetes and Sarcoidosis. He said he was just going to throw that in to rule it out. Surprise, surprise. He did tell me again that it is very common to have multiple autoimmunes. He said they like to invite their friends.
Pooh, I'm so sorry to hear about this........I'll hold the megaphone for you on whatever mountain you decide works best for you.
Hoping that once you get through the shock of this unexpected diagnosis that your doctor will be able to help you through this. Thankfully, he threw in the last test so you know exactly what is happening.
KG
((((Pooh))))
So sorry to hear this Pooh.. I am sending all my best thoughts and hopes to you.. There is not much else I can say.. (((((((hugs)))))))
Sorry I haven't been on for few days. The last week I've been in a whirlwind of Doctors. The muscle enzyme test came back fine, so they referred me to an Orthopedic to see what was up with my knee. That morning, I had my follow-up appointment with my ENT over a third thyroid nodule that has formed. He told me that my first nodule was continuing to grow and now with the 3rd one and my other autoimmunes, he wants to be precautionary and do a needle biopsy. I go this Thursday for it. Not looking forward to a needle in my neck....at all!
Then I had to go to the Ortho that afternoon and after doing some tests, he concluded I have torn something. So had an MRI last Friday and go back tomorrow to see the results and what they are going to do. He believes it's just the meniscus and can do arthroscopic surgery on it. Fingers crossed that his guess is right as that will only be about a 2-4 week recovery. I am realllllly hoping that it is fine and is just inflammation.
When it rains it pours.
Oh, Pooh-honey, what a bummer all of this is. ALL of it! :o We're rooting for you!
I feel so bad for you. It is true, when it rains it pours. Lately I've been trying to ask God, what am I supposed to learn from this. Health problems are out of our control though, mostly. God bless :-\
I kno I have been away for a while but I do check in from time to time.
Pooh, I am sorry u r having such trouble. Reading about your suffering makes my blood boil!
All of us should NOT use a GP because an Internist/Internal Medicine is better suited for adults over 30 or those w/ any family history or who already have health complications. Always use MDs who have admitting hospitals in a center of excellence for your community. DO NOT USE COUNTY HOSPITALS unless that is your ONLY choice.
Docs who get As in med school have privileges at the better hospitals and C docs get privileges to trauma and county hospitals only. Patients must still have or be their own health advocate because they call it practicing medicine for a reason. Why not get one w/ the best practices and outcomes?
If EVER you return for a 3rd visit w/i a 2month period and u r not better, get a second opinion from a doc at a different practice who,u kno it, has admit privlgs to an excellent hospital.
If you explain symptoms of fever, swelling, uncontrolled pain and u do not get an appt, as an existing patient, by the next day or they tell u to go to the ER, get another doc ASAP!!! Do not wait until u need a refill or get sick again, do it while u r motivated by your disappointment and frustration. It can take time to get your first new patient visit, depending on specialty and treatment needed. Do not fire your doc until u have had a visit and approve the replacement doc. A complaint call to your insurance company (if the doc is in their network) can go a long way in getting u a quick appt for a new doc.
Pooh, dear Pooh, please contact me if u need any help in finding a center of excellence in your areas or in finding a specialist.
I have almost 30 yrs w/a major US Health Insurer, volunteer as a patient advocate and am a savy heathcare consumer, now that Iam2 feet shorter....
Thank you FL and good to hear from you. I have been actively searching for a new PCP and I think I found one I want to try. I found an MD here that is a female and has an all female staff...Lol. She has two PA's in with her and I can't find a bad review on her from all the websites I have visited and apparently has been in practice here since the early 90's, so plenty of reviews. Nothing but positive, plus one of her PA's (and she has a bigger title I can't remember) also went to school and obtained whatever degree for skin-related stuff. Not a dermatologist, but mole removals and such. The Doctor also performs female things (you know, our favorite thing to do) and they are only about 5 minutes from my work or home.
The only thing that concerns me, is that they are an urgent care center. They do not take appointments. I called and the receptionist was very friendly, and patient as I asked questions...bless her heart. She told me they have many "regular" patients as well, but to be certified as an urgent care/walk-in, they can't take appointments. She said that if you are a regular patient, when you walk in, you get bumped to the front, as long as no one is in emergency need (bleeding profusely, heart attack...). She said on average, their wait time for regular patients is 10ish minutes.
So I think I may try her and see what I think. I was going to have to find a dermatologist because of keeping check on my moles I had problems with last year, and then a gyno if I moved doctors, so I can get the whole works there :) Also would save me some money since it would be a regular co-pay on those instead of a specialist co-pay.
I have my ortho appointment later this morning, and my biopsy tomorrow morning. Once I see what is going on, I'll plan from there.
FL, she is an internist, but has MD behind her name....so I'll have to look into that. I do normally perfer the internists simply because I don't want to deal with a waiting room full of kids. You would think that with an over-active immune system I wouldn't catch anything, but it's the opposite. I am catching stufff easily and then it throws me into a flare when my immune system starts over-producing, making my Morphea worse....sigh....weird. Thanks for the advice, I'll check into that.
A GP (general practicioner) treats everyone with the exception of Neonates... ie new borns.. But they treat kids. An Internist (doctor of internal medicine) treats only people over 18. Some specialize in geriatrics.. which covers us over 60 group. That's what my doc is.
These can be either MDs or DOs. An MD is one form of medical training... and the one we are most familiar with.. A DO is a doctor of osteopathic medicine.. which can do everything an MD does and it trained the same, except they an do bone manipulations and other holistic stuff.. Most DOs I know don't even do this stuff anymore. I see no difference with MDs or DOs. As a nurse, I have worked with many of each... They're all just Docs to me.
Oooh thanks Lilly. That explains the MD thing to me.
Thanks LA. I too thought they were all the same but learned a grave lesson that very nearly cost me my life. As a non paid patient advocate and a patient myself, I have seen the cost of not getting the best care. Pooh is a great example. What if it was something life threatening that went missed for two years?! Please do not take that risk. Also what cost do u put on quality of life or her worry and lost sleep? I see this happen way too often!
I kno that ins comps have a bad rep but I am on both sides of that fence and every risk mgmt company wants to remove risk. To my company and all others I work with in developing products and better outcomes focus on prevention, best treatment at the best place and in the right timeframe. Once a patient is well, we want to keep them well. I do not sell a thing but common sencse for my job. My main role is patient advocacy and the only thing that matters is the best care for the individual person.
Data privacy is a huge consternation but it has helped to determine which docs really are best based on how many visits are needed to resolve a diagnosis, how long a person is on corrective r. Drug treatment, post surgical complications, return hospitalization s, numer of inpatient days, rehab days and on and on.
Please do not bieve I am blowing smoke here! (This was an actual medical treatment before outcomes were measured!)
I sound preachy but this is my area of expertise and my passion is showing.
I think it's great that you have a passion to help people!
AND....good news! Nothing torn, just major inflammation (which he advised could be caused by any of my autoimmunes). So an anti-inflammatory for a month, then recheck. If it doesn't help it, steroid shot (Boo!)....but I'll take it!
Hooray,Pooh! i am glad your are finding answers and wellness on your journey! Hugs!!!
Thinking of you Pooh. Hope everything goes well with new PCP, etc.
Good luck Pooh.You are in my thoughts.
Thanks all. I had the thyroid nodule aspiration last Thursday (not something I would personally recommend for fun ???
Got a call from the ENT today, saying everything was ok, but he wants to see me next week? Who knows, but still good news that they said it was Ok.
Excellent news! I am so happy for u!
Crossing fingers, eyes and ankles! Sending love...
Glad to hear you've good some good news, Pooh, you've had more than your share of bad news for a while.
KG
:-*[/move]Great news.
Late posting on this, but Yay! Good news, Pooh!
Sorry, Pooh, I didn't realize how long I was away from the board until I saw this! Glad the biopsy went well! How are you feeling now?
Hey Elsie, good to see you again!
I'm doing ok as far as feeling alright. Right now, just trying to hold it all together and get through all the tests. I was actually coming here to post about my follow-up ENT appointment today. They had said on the phone everything was ok with the results but wanted to see me. I thought that was odd but was thinking he just wants to go over what we are doing now...like keep doing the ultrasounds yearly...blah blah blah.
So not it. Come to find out, he wanted to go over what they did find. The pathologist report (his words) was nothing that he had ever seen. In plain terms, the pathologist wrote that although he couldn't say it was cancer, he honestly did not know what it was. What bothered him was what wasn't there. He said they should have seen thyroid hormones and thyroid material in the sample around the nodule. There is nothing there.
ENT said he has never seen that happen and doesn't know what to make of it. Normally, it's either cancer or inconclusive and so they take it out. Or it's ok, and they just monitor and leave it alone. He said that 50% of him wants to go ahead and do surgery and remove it because they can't tell him what it's made of. Then the other 50% of him says he doesn't want to, because it's behind a major gland and it's very small.
The pathologist and radiologist both recommended to wait 4 months and perform another needle biopsy to see if they could identify it, and he said although he has never had them recommend a second one, he thinks at this time that would be the conservative approach to go with.
Seriously? Can I not do anything normal?
It's not fun to be a trailblazer when it involves biopsies. I'm sorry, Pooh. How frustrating!
....and the sample may have been compromised as well. Dear Pooh, please try not to worry until u know for sure. I kno, easy for me to say, right?
Remember, u have a much greater chance that it is just another benign thing that makes u unique and special rather than something worse.
p.s. Normal is Boring:)
Pooh, I'm thinking of you and sending good thoughts for a the most boring, normal outcome there is :)
The Grim Reaper has been lurking over my brother-in-law for a couple of years... My sister-in-law for about a year and her husband for about 6 months... Today, it showed its face to my husband... If the routine lab results are correct... We don't have much more time together... Will know more tomorrow... Tomorrow seems so far away right now... I am numb.
GM - sending love...
Thank you, luise. You are the best!
I'm usually a firm believer in "things happen for a reason."
This site is great, don't get me wrong... And I hope that today's news from the doctor's offiice is a mistake and that it is not the reason that I was guided here.., On the other hand, if it is the reason, I think it would be a great blessing.
Note to myself... I am thinking rather than feeling.
The lab results were read wrong... Hallelujah!!
Great news! YAHOOOOOOO!!!
Wow! I'm very glad but what a scare!
:D :D :D JUMPING UP AND DOWN, HERE...I'M SERIOUS! WOWSER!!!!!! :D :D :D