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Is it better just to not know?

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Posted 10/23/2007 2:39 AM (GMT 0)
Hello everyone,

Well, the story goes something like this....One day I went to the doctor and she says "Hey, you have an unusual blood test I think I need to refer to a specialist." So off I go to the local Rheumatologist. I don't even know what they are but I am going. He brings me a book of symptoms and asks "have you ever had any experiences like this." So I point out about five that I was experiencing and four more that I had in the past. Boom I have Lupus. Now today I struggle with the question "Is it better not to know?" Now the real problem is during my knowledge I still have the symptoms and the treatment I get does nothing for the symptoms. "Lupus" what a mess. Now I know there are several of you out there who might say that I am off somewhere for saying this, but I have no idea where to work this. I now have a soon to be ex-husband because of Lupus and his inability to "Stand by your woman", but really whats new on that. Instead I had a abusive husband who got my kids into foster care and a new apartment that I now live alone in. And Lupus to share my life with. Hmmm, I think I sound a bit bitter. Funny thing is I smile real big for the poeple who see me and they think every thing is fine. I am so strong after all. But in truth I am exhausted and I want the pain to go away.... so can some one tell me how to forget I have Lupus.
Posted 10/23/2007 2:46 AM (GMT 0)
Welcome back Tasha, Sounds like you have had a real struggle sis. I can't address your life issues, but we can try to help you with your symptoms vs. treatment. When you get a minute, list your symptoms and your meds and maybe some of the members can help you brainstorm. Also we have found that bringing a typed list of symptoms to the doctor is very helpful to them. There is a form you can use in the last post of "Lupus Resources" the link is in my signature. It takes quite a bit of work for the first use, but then you just update it for doctor visits after that. Well worth the effort and it gives the doctor a quick overview of whats been going on. If I don't use the list, then I always forget to talk about something that was really important to me and I tend to clam-up when I get into the office, especially if I feel rushed. There is also a post with tips for new members you might find helpful. Glad to see you posting again! Blessings!
Posted 10/23/2007 2:52 AM (GMT 0)
If the treatment you are getting is not helping your symptoms, I would suggest finding another rheumatologist. Or if that is not possible, push this one harder. Take a list of symptoms that you have experienced since your last visit every time you see the doctor. Ask specifically "How can we treat this fatigue?", or "What can we do about this aching joint?"..... If my symptoms were not being treated and/or if I was not getting any relief from the treatment, I would also be asking "Why do I even need to know about this?" I'm sorry you're having a difficult time, I hope we can help answer your questions and help you find a way to get some relief from your exhaustion and pain.
Posted 10/23/2007 3:04 AM (GMT 0)
This is what I hate about lupus though, I never know it is related or not. So as far a a list of symptoms it tends to be long. I hate to complain, kinda whiny tonite, sorry for that. The stuff I recognize as lupus/sjogrens induced is fatigue, dry eyes, mouth. I also have blood in my sinus cavities, thick green sometimes bloody cough phleugm, It tickles when I breathe deeply, and every bone joint hurts, snaps or cracks when I move. My hips feel funny sometimes like I have a bruise on the inside and are a little weak. I keep getting blood clots on my legs that I take asprin for. Low dose, like I did when I was pregnant. I also wear compression hose since I work standing for 10 hours a day. I keep getting weird dizzy weak spells and feel lik I am shaking when I go to sleep. Maybe more like vibrating...anyways these are the ones I can think of off hand as far as meds go. I am on 40 mgs of Nexium and 200 mgs of Plaqunil. I also take some claritin for allergies. So any suggestions so far? I am not sure how to bring this up with my Doc tomorrow. That is why I stoppped in tonite.
Posted 10/23/2007 3:20 AM (GMT 0)
I'd list ALL my symptoms -- it's not your job to figure out what might be lupus-related, that is the doctors job. Make a list, possibly on your computer, and take 2 copies to you w/doctor. Hand dr the list, and say these are the things I need to address in this visit. You've got a start going -- symptom, how long, how severe, associated w/any food or activity I'm very fatigued, even when I get __ hrs of sleep and have a day off. I never seem to feel less fatigued. Can we do something about this? My eyes and mouth are dry enough to be bothering me. This has been occurring for <10 days> and is present when I <work,always?> Is there some eye drops or drinks or something that can help with this? I seem to always have blood in my sinus, and sometimes..... My joints hurt every time I move. This happens when ....
Posted 10/23/2007 3:31 AM (GMT 0)
Ok I will do that. How can I help my brother understand what I am dealing with. He is never sick so he thinks I am just making excuses for myself. Also I have not seen a rheumy in several months since my insurance change, I am dealing with a Internal Medicine Doctor and he seems hesitant to give me the referal I need to see a rhuematologist. I am kinda stuck since he is my PCP...otherwise insurance does not tote the bill. Suggestions on that score would be helpful.
Posted 10/23/2007 3:33 PM (GMT 0)
Tasha,
I don't know if you can make someone understand what you're going through, especially when half the time we, the patient, don't understand. Your brother may have a hard time accepting that his sister is sick and there isn't anything he can do about it. The typical man feels he always has to fix things!

I have a sister who has lupus. I have been in a flare for 3 months and now the doctors fear kidney involvement. She tells me that I don't need to be on anything stronger than an anti-inflammatory drug and that I'm making more out of it than what is really going on. Now that's coming from someone who has lupus. Of course she has a flareup for a few days and then it goes away and she's never had to be on pred, plaquenil. My husband makes up for her attitude by giving me full support and shows concern about my health every day.
Posted 10/23/2007 3:51 PM (GMT 0)
about the referral... One idea is to call your insurance company and ask if they would give you the referral. Tell them that you have a diagnosis that requires the care of a specialist that your PCP is unwilling to provide a referral for. And another idea is to actually ask your PCP what he would do if you were his Daughter or Mother - would he keep denying you the proper medical care or would he give the referral so that the proper care could finally be given?

about people not understanding... Don't waste your energy on it. They can't understand if they aren't in your body. The Spoon Theory is excellent - it helped my husband understand my fatigue better, and now he helps more around the house. I think giving a copy to your close relatives and friends is about as much effort you should spend on it - don't want to use up all your spoons trying to convince others of something they have no understanding of.

Take care,
Posted 10/23/2007 9:10 PM (GMT 0)
Hi Tasha, You got some good advice from Razzle and Gidget . . . nothing like a friendly Lupus competition between sisters. *sigh* With people like your brother and sister, I tend to stop offering any updates. If they happen to ask, I'll answer very briefly and I only volunteer a bit at a time to make sure they aren't "bored" with the details. Eventually, usually, something happens and they wake up. Like the others said, don't waste any of your precious energy feeling bad about people who can't understand. Be selfish with your emotional energy sis, it spends to quickly and leaves you sad and drained. Rheumatologist . . . I have a pcp who has tried to do the same thing. I was actually getting ready to finally switch pcp's and I went for just one more appointment . . . I brought my big list with me and when he saw it, he gave me a referral!! He did not want to deal with it. One thing you can try is telling your pcp that the Lupus Foundation highly recommended that you see a rheumatologist. Last resort . . . find a new pcp. I hope you like the Spoon Theory . . . its a keeper. Blessings!
Posted 10/23/2007 9:24 PM (GMT 0)
Well, I finally got the doc to give me a referall. I did what you said and listed the whole spackle of problems I have been having and within two minutes I had that all important paper. Someone please tell me why when you ask for a referal they don't give you one.Like I don't know when I need to see a rheumy or something....Probably helped that I fell asleep on the darned table cause I was so tired , Ohh well my appointment is not until next Tuesday, but hey it is a start and that is more than what I had before. anyone ever feel like their lungs are being tickled?How do you explain that to a doctor? Some of these symptoms are hard to describe...well I will give it my best shot. Also do you think I should tell my Rheumy about the recurrent blood clots I keep getting on my legs? Not something I mentioned today since the last one went away last week but I am scared of getting one again. They hurt. Thanks for all your help. Tasha Know what, I think I don't like doctors anymore... They think they know soo much but then bam, ohhh I think I need to send you elsewhere to deal with this. When you told them that the appointment before. Just proves they are human after all I guess. I think the only problem now is that I spent over an hour waiting to see him I was wiped, so I am taking a nap befor my Brazilian Jui Jitzu class. see you all later.
Posted 10/23/2007 11:54 PM (GMT 0)
Hello Tasha:

Yes, I think you should mention the blood clots to the doctor. I've got a blood clot and I'm now on blood thinners for the remainder of my life. Blood clots need to be taken very seriously, if one breaks and goes to your lungs you'll die. Don't mess around with them. I'm glad you got your referral and I hope your new rheumy can help you out.

As to your family and friends not understanding, you can't force anyone to understand, but they'll eventually get it. My brother and sister weren't getting it until I developed my blood cancer. Now they understand I'm going to die w/o a bone marrow transplant. They now call me more frequently and show their love to me more openly. Of course my husband and my almost 15 yr old daughter tackle each and everyday with me, as it may be my last with them. My oncologist hasn't given me a specific date as to when I'll die, but he has I've got at a max 5 years to live. Just share with your family what you feel comfortable with and try not to stress to much over them not getting it right now. We all here understand how you feel and you come and vent anytime you need to.

Best Wishes,
Barbara
Posted 10/24/2007 12:22 AM (GMT 0)
Tasha!! Good work girl!!! Now you'll have the foundation for a good paper to give the rheumy!! You lucked out!! Most of us have waited 2 and a half months or more to see a good rheumy . . . you'll go next week??? Great!!! Barbara is right make SURE you tell the rheumy about the blood clots. He really should ask about them, but make note because as Barbara said, this is serious and is common in Lupus. Keep us posted! Blessings!
Posted 10/24/2007 1:08 AM (GMT 0)
Hi Tasha,

Just catching up on all the replies you got here. Everyone has great advice for you, and I'm glad you're seeing someone soon. You MUST talk to them about those blood clots. Make sure you get tested for APS (antiphospholipid syndrome). I didn't know I had it, and boom, I was 28 and in the hospital with a stroke. Very serious and very treatable.

When you're trying to describe the "tickle in your lungs" to your doctor, you are doing the right thing! Explain it the best you can. That's all you can do! A good rheumatologist or any doctor for that matter, will know what you're trying to say. Just keep that list of symptoms going and take pictures of any rashes that might pop up. You'll get through this and onto getting well. It does take time though. Not a quick fix for lupus. Getting others to understand what you have and what you experience day to day is almost impossible. Even with the best support from friends and family, doctors, they just don't get it, and never will. You only get it if you have to live with lupus. That's what we're here for. You can lean on us for support and we WILL get it. The "Spoon theory" is a wonderful piece. I saw Gidget put the link on her reply to you. Print it out and give it to everyone. I have to remind my hubby about the spoon theory from time to time. All I have to do is mention it and then he gets it! Hehe...

You're doing great Tasha.

Ginny
Posted 10/24/2007 3:09 AM (GMT 0)
hmmm...I was tested for that phospholipid thing about two years ago and came up negative.But I will tell him about it. I am so glad I finally can talk to someone about this, sometimes I feel like a freak cause everyone I know is clueless about lupus. My husband said I was just weak. So I tried to work through the pain and ignore it. I am very stubborn so I can work through a lot but it catches up to you after awhile.He would get really angry then he would hurt me just to prove a point. Glad that is out of my life at the moment. Even now though I work at least 48 hrs a weekup to about 60, I worry that since I stand the whole time that may be what causes the clots. I take the baby asprin for about three weeks sometimes longer and eventually it goes away. I can't change jobs because if I do the state will keep my kids in foster, so I feel kinda trapped. I really don't know what to do about it at the moment. I need a job that will allow me to be a single mom of two small children....and won't cause me health problems doing it. What do you all do for a living? If you have any ideas I would really appreciate the suggestions.
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