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Glibby
05-17-2011, 10:43 PM
Hi, I'm new to this forum or any forum for that matter...I've never felt the need to be a member of one until now.

I've been in tears for the majority of the day because I am at my breaking point. I am newly diagnosed...well, not even dx'd officially I don't think. After numerous blood tests, an MRI, and plenty of regular x-rays my primary doc and my pain management doc have both said they are 100% certain I have lupus and have referred me out to a rheumetologist who they say is one of the best in the area. But tha doc has to make the official diagnoses or whatever. He's 2 hours away:( and they cannot get me in until sept. 1 :( :( I am on a waiting list in case someone cancels..but still it's frustrating.

I believe I have had lupus for the better part of 2 1/2 years but doctors always passed it off as an infection or the flu; would give me antibiotics or flu meds and send me on my way.It wasn't until October of 2010 that I started feeling so bad every single day I decided to go back to the doctor and explain to her that antibiotics will make me feel better for a couple of weeks but then I'm back at square one and feel awful.

At first she said I had fibromyalgia and sent me to pain management. At first, I started feeling better. I was put on Savella and Baclofen and it was wow! I felt so normal for a matter of 3 or 4 weeks then flare up symptoms started creeping in again. Flu feeling; low grade fevers; throat and ears constantly hurting; muscles burning; bone pain; kidney pain; swollen hands and legs; glands in my neck swelling; difficult to walk...it just goes on and on and on. I told the pain management doc that and he added hydrocodone to the mix and changed my muscle relaxers. I still feel like crap. I can barely move most days, I can't think straight, I can't eat normally...sleep, well it doesn't exist for me really.

My job doesn't understand. I cry everyday when I get to work because I have to climb stairs to get to my work space (they have no elevator) Just the climb (yes, it's a climb to me. those stairs might as well be mt. everest) makes me so tired and causes even more pain. I call into work sick at least once a week because I just can't do it. The noise, the fast pace, the responsibility, etc. It's too much. They are threatening to take away my medical benefits if I don't work 40 hours a week even after I have tried to explain to them that I absolutely need the insurance to get better. It's one of those "but you look fine, you don't seem sick" things. Aaaaaarrrgggh.

I haven't had one day where I have felt decent in the past month and it's progressively getting worse. My lower back has been hurting so bad since last week; my insides feel like they are on fire; sometimes urinating is so difficult. Not painful I just can't go when I feel I need to. I have nausea all the time and it's gotten to the point in the last 4 days where i can't take any of my meds because I vomit them up every time I take them. I don't know what to do about anything anymore...I just feel like throwing myself off of a tall building most days. I have a son that I never spend time with because I spend any time away from work in bed.

I am truly at the end of my rope...and I still have to wait until sept. 1 to get some sort of relief??? You gotta be kidding me. I cannot do this anymore, I just can't. I am miserable, depressed, moody, I've lost friends over this because I make plans then break them because I feel bad, my son is worried all the time. My family doesn't understand....... it's the "well, everyone has something wrong with them nowadays and some people have it much worse. It's not like you're dying or anything." Wow, just wow.

I'm not sure how to deal anymore. Insight?

Sorry about the rambling. I haven't been able to form one cohesive thought for months now so I know...this probably doesn't make sense.

Toradoradi
05-17-2011, 11:02 PM
Glibby,
We have all been in your shoes here. It is hard not being able to fix what is wrong with you or not knowing exactly what is going on with your body that doesn't want to seem to work right anymore. It's hard to live normally when you don't feel normal and no one understands what you are going through. Most of us have lived this or are living this. It is a very hard process and it makes you feel awful. It is good to join a group such as this one because we understand where you are coming from. We lend support and advice and are just here to listen when you need to vent.
I was just diagnosed this past Mar after a year of hell health wise. I too have never been a member of a forum or felt the need to be. But this has helped so very much and the people are very kind and a great support system on our darkest days. Always here to lend words of kindness and encouragement. It does help to have an outlet to go to vent and let out all your feelings, hopes, fears where people understand.
I am sorry you are having a hard time right now. I hope it starts to get better for you soon. Welcome to WHL family. Others will be along to say hello as well and speak words of wisdom and welcomes.

rob
05-18-2011, 01:46 AM
Hi Glibby,

I too, have been in your shoes, and I understand how you are feeling right now. My suggestion would be to call either of these doctors who are 100 percent sure you have Lupus, and tell them to start you on some meds immediately to get your flare activity under control. They can definitely start you on Plaquenil, which is the main drug most people are prescribed to control Lupus. They could also start you on a steroid for the inflammation. You SHOUD NOT be made to wait until September to start treating your symptoms. Leaving Lupus untreated is dangerous, as it can run rampant and cause a lot of damage. I'm surprised that they didn't start you on something. Do you take any OTC anti-inflammatories, like Aleve?

Rob

PS-Welcome to our group.

giggle
05-18-2011, 02:41 AM
I agree with rob, you should be able to go onto meds straight away. Plaquenil take ages to start working fully and you never notice it *start* to work, just one day you realised you hurt much less than you did two months ago and your fatigue is just that little bit better, enough to get you through the day. There is definitely no reason not to be on it.

Peridot20_Gem
05-18-2011, 03:13 AM
Hello Glibby,

Welcome to WHL and it's lovely to have you with us, you need to vent away and release what your feeling but how you feel depressed won't help, as Lupus loves depression for kicking off symptoms more and it's also a Disease where you have to pace yourself and takes things steady, you've got so many worries on your head but you do need your appointment bringing forward more quickly and i should think your doctor is able to do that.

I for one understand the position your in refering the pain and so many other's on the site who are waiting diagnosis and also treatment and besides that ROBS ABOUT SAID IT ALL OTHERWISE

((Hugs Terri)) xxx

steve.b
05-18-2011, 03:48 AM
welcome to our lupus family.

yes it seems wrong to wait till september. ask your primary doc if he can start you on something.
also ask one of your doctors about time off of work. stress leave or sick leave, untill you have a chance to get over this flare.

BonusMom
05-18-2011, 07:04 AM
Welcome to WHL!

I'm so sorry that you're feeling so poorly. Like so many have said, many of us have been where you are today.

I would urge you to ask your PCP to start Plaquenil as it can take up to six months to reap the benefits. Is there only one rheumy tht accepts your insurance? Hard to believe only one in-network doc. I'd see about getting another one on board and make them compete for your business. Just sayin'

As to your employer, ask your PCP to complete FMLA paperwork to protect your job. Is there a employee manual that specifically states you must work 40 hours weekly or no health ins? If not, I wouldn't think that they can arbitrarily say that since you are now working 32 hrs weekly they can take your health ins away. I've never heard of such nonsense. Jerks.

I'll get off my oap box now.

Again, welcome. This is a great group of people (well, mostly hehehe). Make yourself comfy and ask lots of questions.

tgal
05-18-2011, 03:40 PM
I am so very sorry for what you are going through. As so many other have said we do understand. It is so sad that they make us jump through hoops just to get started on the meds that we need. Although I can't help with what you have gone through I can welcome you to a group of people that really do understand. We are here all the time if you need to vent!

Saysusie
05-18-2011, 07:52 PM
You have been given some excellent advise and information. I cannot add anything better to what you've already been told. I just wanted to make sure that I welcomed you and to let you know, as others have said, that we understand and have been where you are ourselves.
Do demand that your doctors treat you..do demand that they provide you with documentation to either protect your job or to make your job provide accommodation (Lupus is listed in the diseases eligible under the ADA).
Again...welcome to our family, I am so glad that you are here and please know that we are here to comfort you when you feel that you need to cry. We do understand.

Peace and Blessings
Namaste
Saysusie

Glibby
05-18-2011, 11:43 PM
Hi Glibby,

I too, have been in your shoes, and I understand how you are feeling right now. My suggestion would be to call either of these doctors who are 100 percent sure you have Lupus, and tell them to start you on some meds immediately to get your flare activity under control. They can definitely start you on Plaquenil, which is the main drug most people are prescribed to control Lupus. They could also start you on a steroid for the inflammation. You SHOUD NOT be made to wait until September to start treating your symptoms. Leaving Lupus untreated is dangerous, as it can run rampant and cause a lot of damage. I'm surprised that they didn't start you on something. Do you take any OTC anti-inflammatories, like Aleve?

Rob

PS-Welcome to our group.

Thank you for the welcome, Rob. I did call my PCP today and she stated I had to ask my pain management doc for any lupus meds. So, I called my PM doctor and they said I needed to see him to get a RX for anything even if it's not a narcotic...and well, there are no appointments at the moment and my next appointment is on June 8. *sigh* I was taking OTC anti-inflammatories and they did nothing but make my tummy hurt. I did find some indomethicin(sp?) in my medicine cabinet and took some today. It took the edge off but not by much.

Glibby
05-18-2011, 11:47 PM
welcome to our lupus family.

yes it seems wrong to wait till september. ask your primary doc if he can start you on something.
also ask one of your doctors about time off of work. stress leave or sick leave, untill you have a chance to get over this flare.


I have asked for sick leave so I can get better....at least become halfway functional and they said "sure, but you are responsible for your health insurance which is $333 and some change a month" Are you serious? I won't be working...How am I supposed to pay that? SMH

Glibby
05-19-2011, 12:05 AM
In this area there are only 2 but the wait time is the same and they have very thick accents. I'm not trying to be rude but I like to have a conversation that flows with my doctors not one where I have to ask him or her to repeat themselves several times. I feel that I have a lot of miscommunication going on when it comes to accents. Not their fault...and I don't mean anything ugly by that. But perhaps I will have to give in and try to schedule with those 2 and see what happens.

As far as a policy book...haaaaaaaahahaha. ha. ha. ha. Asking for one of those is like playing where's waldo. There is one lone policy book that management is constantly misplacing. I think their problem is when I work less than 32 hours in a week. The flares are so bad though, and I can't help it if one wants to put the smack down for 3 or 4 days straight. I told them it was going to be like this for awhile but it's falling on deaf ears. I am going to look into that FMLA paperwork, most definitely.

rob
05-19-2011, 03:09 AM
Thank you for the welcome, Rob. I did call my PCP today and she stated I had to ask my pain management doc for any lupus meds. So, I called my PM doctor and they said I needed to see him to get a RX for anything even if it's not a narcotic...and well, there are no appointments at the moment and my next appointment is on June 8. *sigh* I was taking OTC anti-inflammatories and they did nothing but make my tummy hurt. I did find some indomethicin(sp?) in my medicine cabinet and took some today. It took the edge off but not by much.

Your PCP could have prescribed you Plaquenil, my PCP writes me scripts for Lupus meds all the time. So, you get to sit around and suffer because nobody will lift a finger to help you. And Plaquenil isn't a pain med, it's an anti-malarial drug that works as a disease modifier for people with Lupus. The eventual result after having been on it long enough for most people is reduced pain because of reduced disease activity, but it's not a pain med. It's ridiculous that your PCP is in a position to help you, but won't.

Yeah, the OTC meds like Aleve (Naproxen Sodium) can cause a stomach ache. I have to take them with food otherwise they tear me up.

Rob

PS-I wish you lived in my area, because I'd send you to see my PCP. When I first saw him, he was up front about never having treated a patient with Lupus before. He told me he wasn't well informed on the subject, but that by the time I see him again, he would change that. He actually cracked open the books and studied up. He really likes to work with his patients as if they are equals. There's got to be somebody in your area who will help you...

~LUVMYFLOWERS~
05-19-2011, 03:51 AM
Hello Glibby, And welcome to WHL! I too have also been in your shoes. You have found an
exellent site for careing support and great information ,and you just vent and ramble any time you want i know i have. A lot of the other members have already given some wonderful advice and welcomeing. Im so sorry your pcp wont call you in a script for plaquenil, Im with Rob, in
our area all we have to do is call the pcp and they will call in plaquenil, wish you're dr's would
do the same and i hope someone cancels so you can get in sooner to see the pcp.
Big Hug's to you!!!!! ~Diane~

Glibby
05-19-2011, 07:14 AM
Your PCP could have prescribed you Plaquenil, my PCP writes me scripts for Lupus meds all the time. So, you get to sit around and suffer because nobody will lift a finger to help you. And Plaquenil isn't a pain med, it's an anti-malarial drug that works as a disease modifier for people with Lupus. The eventual result after having been on it long enough for most people is reduced pain because of reduced disease activity, but it's not a pain med. It's ridiculous that your PCP is in a position to help you, but won't.

Yeah, the OTC meds like Aleve (Naproxen Sodium) can cause a stomach ache. I have to take them with food otherwise they tear me up.

Rob

PS-I wish you lived in my area, because I'd send you to see my PCP. When I first saw him, he was up front about never having treated a patient with Lupus before. He told me he wasn't well informed on the subject, but that by the time I see him again, he would change that. He actually cracked open the books and studied up. He really likes to work with his patients as if they are equals. There's got to be somebody in your area who will help you...

I think the fact that my PCP acted like I was asking for a narcotic painkiller is what blew my mind yesterday. smh. She acts like she's scared of my pain management doctor for whatever reasons. I've only seen him 4 times but he seems like a good guy, very outgoing and positive. I believe he will prescribe the anti-malarial med when I see him but I was told yesterday that due to the nature of the practice I would either have to wait til my appointment in 3 weeks or they can call me if someone cancels their appointment. This is so frustrating!

steve.b
05-19-2011, 07:27 AM
sounds like you need a new primary care doctor.
your pain management doctor sound like a suitable candidate.

see the thread "preventative care" in "lauri's lounge" for information about primary doctors.

Glibby
05-19-2011, 07:44 AM
sounds like you need a new primary care doctor.
your pain management doctor sound like a suitable candidate.

see the thread "preventative care" in "lauri's lounge" for information about primary doctors.

I am home from work today....still feel really bad. I've been sitting here seriously considering going back to my original PCP I had since I was a teenager. I ended up at this particular Dr. because she is open on Saturdays and it was convenient when I needed a weekend dr.'s note for work(before I knew what was wrong with me). I will definitely look at that thread. Thank you so much.

magistramarla
05-19-2011, 10:04 PM
Hi Glibby,
Welcome to WHL. You have gotten some great advice from the others here. I agree that you should ask to be prescribed Plaquenil right away, and prednisone or something that will help with the pain. It's a shame that you still have to wait until June, but at least that is batter than Sept.
Learn as much as you can here, and then educate your PCP and your PM doc.
Hugs,
Marla

rob
05-20-2011, 02:03 AM
Is there such thing as malpractice by neglect? If there isn't a law against it, there ought to be.

steve.b
05-20-2011, 04:42 AM
yes rob, there is. and quite a few lawyers have got rich off of it.
hard to prove that someone, did know, or should have known, but could not be bothered.
easy to assume, but hard to prove.