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Angel Oliver
01-14-2009, 12:46 PM
Hi Everyone,

Sorry i have not been on but been a bit ill with my jaw. Yesterday was put to sleep whilst they sorted out 2 more of my teeth, but i am feeling less pain with the meds they have given me. Today i went to see the Jaw specialist whose idea of helpig me is to put me on Diazepam to relax the muscles in my jaw. I told her, my jaw is slanted and i asked what she was going to do for me to help me stop breaking my teeth, she just handed me the pills and told me to go back next week. Tomorrow i will speak to my own Doctor for advice on this.

Also, today i saw the M.E Consultant who told me my results from the blood tests. He said i have not got Lupus and it 'must' be M.E. I was so shocked i just sat there.Yes happy that it was not Lupus, but so worried about what exactly is wrong with me. I know i should have asked so many questions, but i didnt.....as he told me to increase my Pregabalin and Amytriptaline. I know this is going to sound strange coming from me and i hope you understand what i am trying to say.....but if i have M.E i go back to having people/Doctors/Nurses treating me like it's all in my head. The struggle begins again. I say this because under the label Lupus that they gave me made people take me serious. They believed i was in pain with my joints and muscles,the asthma,dizziness, my banging headaches,the insomnia,acid reflux,irratable bowel and they understood why i could not work. NOW i have all the same symptoms as before except i go back to a label of M.E where people think it's all in my head. I suffer with severe panic attacks which have made it impossible for me to leave my house or go to work. Now i go back to them treating me like it's all in my head and try forcing me back to work. Last week i asked for help from a nurse who comes to visit me.I told her i had a problem with getting on the bus to get to an appointment. She turned to me and said '' i'll be straight with you.You need to go to the appointment and i have no suggestions for you.The only thing i can tell you is you will have to get on a bus and get to your appointment.Life is hard.'' Now what she said is true i know, but does anyone reading this find it a bit hurtful or is it me just being a bit soft?
Please understand what i have written, it's not meant to offend anyone what so ever. I was told i have Lupus, now i have not and i realise how terrible the illness can be.I am so sick and feel i am going round in circles and like ive hit another brick wall. Please can anyone advise me what i am to do next? Do i believe the doctor that it is M.E when he says 'it must be M.E'? Yes i am happy its not Lupus......i just dont know now what to do.

love
Angel.xx

rob
01-14-2009, 03:12 PM
Hi Angel,

I'm curous. Did you recieve a definite diagnosis of Lupus at some point? Or were you lead to believe that all signs point towards Lupus, but you had not yet recieved an "official" diagnosis. I'm just trying to get a picture in my mind of what's happening to you so I could maybe help, or give you some proper ideas and advice.

Don't worry about offending anyone. I understand just how strange the world of chronic illness can be. We don't want Lupus, or anything else for that matter. But, we know things are not right with our body and we need an answer. For most of us, you included, when you can finally put a name to the problems, it is a huge relief, even if it means Lupus. Being in limbo, and not knowing can be torture. But to finally have an answer, and have them change the answer on you is even harder to deal with. For some reason, there are medical pro's who seem to want to un-diagnose us for whatever reason. I honestly do not understand it.

I went through absolute hell getting my eventual SLE diagnosis. I had 4 different rheumo's diagnose me, including a very thorough Dr. who works for the SSI disability people in order to be eligible for full disability benefits. They all came to the same conclusion, Rob has SLE big time, no question. Then, I see a new rheumo a few months back, and he starts questioning me and asking me why I think I have Lupus. WHAT? Thinking, and opinions are irrelevant, I unfortunately have this. He didn't think I had lupus. I went off the deep end temper-wise on the guy. Not pretty, but I will not allow some quack to put me back to square one and have the world look at me once again like I'm lazy, and it's all in my head.

So, I understand exactly where you are coming from Angel. As far as that nurse, I don't think you are soft. I think she may have flunked Empathy 101 in nursing school. What a b..., well, I won't say it. I'm not very familiar with M.E. Is it the same ME I see associated with Chronic Fatigue Syndrome? You have every right to feel the way you feel right now. You have done nothing wrong. I hope that I, and others here can come up with some ideas that could help you. Talk to you soon,

Rob

sits_inthe_corner
01-14-2009, 05:37 PM
Gentle hugs to ya Angel

I understand completely what you are saying ... except for the M.E. part. What does that stand for?

I'm not diagnosed yet either. I've had mixed results from ANA tests and lots of guesses and let's try this medication or that medication...

It's very frustrating. Most of what they "think" is wrong with me is untreatable...oh freaking joy.

I know you probably feel a bit defeated right now. We are here to support you. You're pains and health issues are real no matter what the diagnosis.

And as many of us can attest to, lupus is very hard to diagnose...actually most things seem to hard for the medical field to pin down :P

I've gotten the "it must be" diagnosis a few times my self. My reaction was quick and furious! That's NOT good enough! Lets find out for sure shall we?!

It's your body, your health, your life...not theirs. Don't give up, keep looking for answers. Inconclusive tests are just tests that NEED to be redone.

More gentle hugs to ya, keep fighting to get to the bottom of what's going on with you.

Saysusie
01-15-2009, 09:56 AM
M.E. is Myalgic Encephalopathy...another term for Chronic Fatigue Syndrome. This is one of the illnesses that doctors like to tell us is "all in our heads" and they don't want to believe that it is a true illnesss, so they treat us as if we are crazy and give patients very little respect.

I want to reiterate Rob's question, did you get a definitive diagnosis of Lupus previously? If so, request another doctor who will treat you based upon your diagnosis. You are not bound to a doctor who does not believe your symptoms and who wants to undo your previous diagnosis. Undoing a previous diagnosis is only valuable if the doctor is willing to treat you for the current diagnosis and is ready to make a treatment plan that will alleviate all of your symptoms. If he is not willing to do that, then his new diagnosis has no value to you at all. Find another doctor!

Also, if he undiagnosed you because your labs show little activity, that is most likely due to the fact that your meds are working, not because you do not have the illness. The whole point in taking meds is to get your disease under control, which means that lab values will, hopefully, show little disease activity. His questions should have included going over your current medications, looking at your previous lab results and making a decision as to weather or not you should continue your current regimen or if things needed to be changed.....not to say that you don't have the disease that you were previously diagnosed with. As Rob mentioned, there are far too many doctors who want to undiagnose us so that they do not have to treat us and they can put us on the back burner and concentrate on the patients who can put more money in their pockets. I know that sounds cynical, but it is, unfortunately, true!

As for the nurse.....report her! You can bet money that you are not the only patient who she has been cruel to (& yes, what she said was downright cruel and totally unnecessary!). Find out who she works for and make a formal report against her. Believe me, they will follow up on your report.

Please let us know how you are doing should you decide to find another doctor (which is well within your rights). I know that you do not want to have Lupus, but as you said, at least with Lupus, you were taken seriously and being treated. I wish you the very best!

Peace and Blessings
Saysusie

Angel Oliver
01-15-2009, 10:04 AM
Thanks so much Rob and Sits in the corner for your replies i will explain a bit more.

A few weeks ago i saw the M.E consultant (Myalgic Enc...sorry can not spell it, but its similar to Chronic Fatigue Syndrome). We sat chatting about all my symptoms and he said straight away....you have Lupus. He then sent me for blood tests and gave me Pregablin to take for joint n muscle pain, and told me even if the blood tests come back negative you still can have Lupus.
The next day i rang my own Doctor and questioned him, how can that Doctor be certain and then give me pills when ive not had the blood tests back? My Doctor said ''experience''.He said the doctor knows what he is doing. I was wary of the meds so have only recently started taking them as they have weird side effects. I even wrote about it on here some time ago.
Then i began to start telling people i have Lupus.
When i saw him yesterday....he looked at his notes and said ..''well the blood tests were ok and you 'must' have M.E''. I was so shocked knowing i had told people what i have and i have things in motion under the assumption i had Lupus i didnt say all the things i now know i should have done. (In my head i am shaking myself for not asking the many questions). So now i am backtracking telling people i have M.E and the look says it all. They dont believe me.They think i am making all this up for attention.I could be wrong but that look ive seen before and i know what it means.
With regards t the nurse's comment to me. Last night i did not sleep as i had an appointment to see my Doctor, who was soooooooooo nice and understanding to me i didnt have to worry. But today i rang the nurse again. She sort of brought up the subject again and i TOLD HER STRAIGHT. She waffled on how a panic attack wont kill you and i said but whats up with me i am finding it so difficult and terrifying. I asked her if she had suffered with them and guess what....she said NO. Immediately i said RIGHT THAT EXPLAINS THE IGNORANCE!! I tell you what she changed that cocky attitude straight away. How **fin dare she dictate to me like i am soft in the head cause i can not over come the panic, when she has never experienced one in her life. I told her...do you really think i want to be like this having people like you looking down on me for not being abble to cope.NO I DONT^!!! I felt so much better and now realise, she has trained as a nurse for a job and has ''read'' about things so therefore will NEVER understand what i am experiencing. In my mind i had all you on the Lupus website standing right beside me. Thank you for your strength it really helped allot.Me being tough he he he he felt good!!

By the way my Doctor is right behind me with my complaint about my hospital visit at Christmas.I'll keep you informed.

Hope this puts you more in the picture of my dilema. So my bloods came back negative....so why is it M.E when he said it could still be LUpus.Im so confused and look totally stupid to the people i have already told.

Lots of love n thanks
Angel.xxxxxxxxxxxxxx

rob
01-15-2009, 10:37 AM
Hi Angel,

Thanks for clarifying things. Now I understand what's happening. I think you need to find a new specialist. Finding a good rheumotologist can be difficult, but I think that would be the best way for you to deal with the situation. I read up on M.E. and Saysusie is right, it's a catch-all B.S. excuse for doctors to use so they don't have to deal with "problem patients" like us. And I'm with her 100% on reporting that nurse.

When I was young, I had some pretty bad things happen. I was beaten up pretty badly and ended up in the hospital with some pretty nasty injuries. For many years after that, I had the worst panic attacks whenever something would happen that triggered a memory of what happened. I was diagnosed with PTSD and the panic attacks were terrifying and debilitating to the point of me needing to be taken home because I could not function. It makes no difference whether a person can "die" from a panic attack. What matters is the person having the attack feels like, and thinks that they could die. My heart would race, my adrenaline would kick in and I'd go into "fight or flight" mode. It was awful, and it took me a few years of counseling to overcome the problem. That smartass nurse has no idea what it's like.

I'm glad your regular Dr. is so kind, and understanding. You should ask him if he could possibly refer you to a good Rheumo that he trusts, so you can get this whole Lupus question ironed out and get on a proper treatment regimen. As far as telling people about Lupus, then about M.E., I wouldn't tell them anything. They don't need to know squat. And if they want to give you that "I don't believe you" look, then to heck with em', you don't need them.

You are a person, in need of some straight answers, and genuine help. You know you have these very real symptoms, and you deserve respect, and empathy from those around you. Always remember that every single person here is in your corner.Whenever you need support or a good pep-talk, you know where to go. I hope you get the answers you need ASAP.

Rob

Angel Oliver
01-15-2009, 02:05 PM
Thanks allot for your replies Rob n Saysusie. I do get the impression from my Doctor that this Rhuemi is the best....i heard them talking on the phone and i got the impression they were friends outside of work. I was thinking, should i call his secretary maybe and if so what should i ask? I have her phone number.

I did confront the nurse about her comments and i'll give her the benefit of the doubt and if she ever says anything again then i'll report her.Its just i already have a hospital complaint ongoing so i dont want to do another one just yet lol.

My boss rang me last night and you know what, it was like an out of body experience. As she asked me how i was and i began to tell her about my year off work (this is my first phone call from her in about 9 months) i could see myself talking of all my many problems and ailments and i could hear her walking round her home answering the door and i imagined her making a noose ready for when i stopped telling her how crap my life was lol. She then went on to tell me how life was so fantastic (which i wish her well and envy her a little....ok allot lol)and how she was enjoying life. I cut short our conversation as i could tell she was getting bored as she could not help me.Maybe se was'nt bored but i felt like a right loser talking to her. I said goodbye as she told me to keep fighting.
A work collegue has also invited me to a party. I have decided after chatting with my boss i am not going. This is because i realised last night i have nothing positive to talk about and i dont want to see pity or boredom in their eyes and i feel i have nothing in common with anyone 'outside' anymore. Also i feel rubbish and have jaw n teeth problems lol.

Right i have now forgotten what i was trying to say (as the fog sworms me lol)

Thanks and love n hugs
from
Angel.xx

DrinkofWtr
01-15-2009, 03:57 PM
Angel, Don't give any mind to what that nurse said. She isn't you and she doesn't understand what you are going through, or for that matter she may not even care. She probably has problems of her own and doesn't have a lot of empathy for others.

sits_inthe_corner
01-15-2009, 04:55 PM
Gentle hugs to ya Angel,

I'm glad you found your voice :D and I hope that nurse will think about how she talks to patients.

It can take many blood tests before your rheumy can say if you have lupus or not.

I have had many blood tests done. Some possitive some negative. I am not diagnosed yet, but I am on medications that are helping.

Angel Oliver
01-16-2009, 07:10 AM
Hi and thank you both. I just chuckled to myself as i just realised im a Ferret lol.

Yes, i realised when i confronted her that i do not really think she realised what she said was so hurtful and so uncaring. Lets see how she treats me when i next see her. If she says anything again i will imagine all you at my side :)

If you have had many blood tests already and still not diagnosed, have you any advice for me as my consultant seemed unsure as he told me ''It must be M.E''. Im so mad i did not say anything at the time, but so many things were rushing through my mind ....now i have the questions i need to ask him.

I do thank you all so much for your kind words and being so caring. I dont think i have ever felt so very low.What with my pain at christmas with my teeth and jaw, i just feel so overwealmed with problems. So thanks for being there for me.

Love and hugs
Angel.xxxxxx

Angel Oliver
01-16-2009, 07:19 AM
P.S I have just rang my Consultants secretary and told her i have many questions which i didnt ask when i saw the doctor. She has advised me to write to him and he will, when he has time, try and help me. So fingers crossed.

Angel.xx

sits_inthe_corner
01-16-2009, 05:12 PM
Hi Angel,

I just found out not long ago, that your blood tests can vary depending on the lab that they are sent to.

Different labs do NOT use the same criteria for testing :shock:

I need to have word with my doctor to find out more information about this. It's just something else to make the whole process frustraiting.

Angel Oliver
01-17-2009, 09:56 AM
Yes i have just found that out too. Today i posted my letter to my M.E/Lupus Consultant to say that when i saw him i know i just sat there and said nothing and i am asking him to confirm his diagnosis for me and i explained i was an active world traveller and white water rafter to now being an ill housebound no hoper lol. I am asking him to confirm when he said to me ''well it must be M.E '' because to me this is saying he is not sure whats up with me. I explained i want to know for sure WHAT IS WRONG WITH ME!! :)

Ive been fobbed off for years and looked at as if ''its all in my mind'' for too long now.....give me an answer!!!

Thanks for your email and when i get a reply or should i say if i get a reply i'll let you know what he says to me.

Love
Angel.xxxxxxxxxxxxx

KathyW1958
01-17-2009, 12:42 PM
Hi Angel,
I just read your posts and I am so sorry for the way the doctor and that stupid treated you. I think that you may need to see a different Rheumatologist or have the lab tests repeated just to make sure that nothing is missed. I think that you can have Lupus and have it not show up in the blood. It is called Sero-negative Lupus. It is quite rare. I hope that you get some answers.

Hugs,
Kathy

Angel Oliver
01-18-2009, 06:31 AM
Thanks Kathy,

I have posted my letter to my Rheumi and hope he replies to me soon.

Hope you are keeping strong, you are in my thoughts.

Love
Angel.xxx

NoodleMom
01-18-2009, 08:31 AM
Angel,
Hi I am Kasey. I have Lupus and a host of other things going on also. I was diagnosed a year ago November and rediagnosed this past October. New state new doc.
I am so sorry that you are having to go thru all of this stuff. I agree with the others about..... something but as per usual as soon as I read it poof the lupus fog attacks and well you know the rest.
I guess that Ill just say Welcome to you and let you know Im rooting for you.

K

Angel Oliver
01-18-2009, 10:29 AM
Thanks allot Kasey. Alls i want is a name instead of a ''must be''. When he first said i had Lupus and i questioned it, they all told me he's an expert bla bla bla. Now i was right all along...he was'nt sure in the begining.ahhhhhhhhhhhhhhhhhhhhhhhhh.

Thanks for the welcome and your name makes me feel hungry 'Noodlemum''...nice :)
Hope you are feeling as good as you can and have a fab day.

Love
Angel.xx