View Full Version : Am very frustrated.

04-02-2008, 04:37 PM
I have been doctoring with my GP for awhile now. I have had a elevated SED rate for over a year. I have been having joint pain, abdominal pain, fatigue, nausea, hair loss, muscle aches, some depression, constant sinus infections ( I just never seem to get over them), experienced the butterfly rash (last summer when at the beach) I generally avoid the sun, and headaches. I haven't followed up with Rheumatology yet, but called today to find out results of blood tests. But before I get into that I will tell you what has me frustrated. I was to my doctors office to see one of the doctors that practice there ( I have been doctoring with a PA who is awesome, but want me to see one of the doctors). I made an appt. earlier than the one I had this month because I was having awful upper abdominal pain left and right side, with pain radiating to my back on the right side. I have also had an increase again in aches and pains in my joints and muscles. I feel like I did when I went to see the PA when I just didn't feel right and know there is something wrong. He just wrote me off basically saying that I have myself all worked up about nothing. He said he seriously doubts there is anything wrong with me. I don't feel this is right. He said that it is all just stemming from me being depressed and not being able to sleep soundly.

I called Rheumatology today because I had to reschedule my appt. I got a new appt. and asked about my lab work. The woman told me that my CBC was normal but my c-reactive protein was high, ANA was out of range, double stranded DNA was out of range, and vitamin D was a little low. She said he also ordered two other test later on Rheumatoid factor and a Anti-CCP which are not back yet. She said she would call the lab and see where those results are and called my back with an explanation from the doctor about my lab results and if there is anything that he wants done or to do before my next visit.

For those of you out there with lupus, what does all this mean? I have a lot of the symptoms, but no one will be straight forward with me. Most of the time the doctors just shrug me off. My PA has been great she said from the beginning that she suspected Lupus or MS. She is the reason I am seeing the Rheumatologist. Any advice or comments would be greatly appreciated. Thank you.

sick n tired
04-02-2008, 08:23 PM
Hi lcasnyder,

Welcome to this forum. It is nice to meet you.

Wow your symptoms were what initially brought me in to see my doc. I was told over and over that it was because of depression. It was also intimated that it was all in my head. It took me 11 years to get a diagnosis. I started to believe the internist who said those things.

This last fall some of my friends convinced me to go to another doctor. This one listened to the symptoms and tested me for lupus as well as many other things. I never thought of lupus, myself so I was shocked when the initial tests came back positive.

Perhaps you need to find another doc, unless the pa can talk to the doc and convince him to do other tests with you. It is my experience, however, that when a doc makes a snap diagnosis he usually does not want to change it or do any tests to prove himself wrong.

With all of those tests, It sure appears that you are not just depressed. Depression does not cause the ana to come back out of range or any ot those other tests.

Welcome to the group, I look forward to getting to know you better.

04-03-2008, 08:02 AM
hi Lcasnyder

everyone here can relate to your experiences, i know i can. it took me a number of years to get my diagnosis. and every trip i went alone. not knowing was a major battle, and contributed to my depression. it felt better in a weird way once i was told what i had. at least i could do my own follow up research to take better care of myself. but of course, easier said than done.

i get depressed about it all very regularly and it affects my daily functioning. i get the rashes every single month, without break, lasting at least a week.

a week ago i was of on my negative tangent, and i dont doubt ill find that place again , but right now, im ok, some positive things have been happening. last week i would never have known that this was around the corner. ive long since stopped concerning myself with the persons that dont take me seriously. it will only aggravate my condition. i work really hard at keeping good ppl around me. but i still do fall down often, and it does hurt a whole lot. it drives me crazy.

i have all the symptoms you listed, plus more. i have also developed other conditions that when they all act together, boy, im just locked away in my room for days @ a time. im scared a lot of the time. but u will be ok. and so will i. well, at least thats my state of mind for now. i dont doubt another bout of depression.

anyways, hang in there.

04-03-2008, 11:10 AM
I can definetly relate to what you are going thru, I know in the begining after a while I started to question my sanity. I accept my diagnosis because now we can start treating the problem. good luck with your rheumatolagist and treatment.

04-03-2008, 01:26 PM
I got a phone call from Rheumatology today. They want me to come in next Tuesday to see the doctor, he told them he wanted a 30 min. appointment with me to discuss my labs. The girl from the office said he didn't think that it was appropriate to discuss my labs and results over the phone. They also want to keep the appointment that I had rescheduled (May 16). I am very nervous, scared, and curious as to what he is going to say. I will just be glad when someone can give me a diagnosis, so I know what the hell is wrong with me. I am very frustrated. I was infuriated when I left my GP office on Monday. He tried to blame numerous things for the way I feel. He told me that I am just fatigued because I am chasing around a 3 and 2 year old. That maybe my problem is the fact that I need to go back to work, that maybe I am just depressed because I am stuck in my home all day with my kids. There is no other place I would rather be than with my babies. I am hoping that I can get some answers from the Rheum., he was one of the few doctors besides my PA that I was see at the GP office that believe me when I say that I am having this pain and feel horrible most of the time. I completely and totally felt like I was having a relapse almost over the weekend, because I felt the same way I did when I went to see my PA and she started with all these tests. There is one thing that I can be grateful for and that is the support system I have. The strange thing is it comes from my husbands family and not my own, but I will take where I can get it these days. Thanks for all you comments it helps when someone else can understand and is going through or has gone through the same things as I am. It is comforting knowing that I am not alone in this. Thank you to all who have responded. Linda.

04-03-2008, 01:36 PM
Hi Linda

When you go for your appointment with your rhuemy and they start to explain your lab work ask them for...and dont forget to take copy of you report. They are gonna throw alot of information at you...and if you have a copy you can go over it again. If you have any questions about the terms they use ask your doc for clarification.

You are having the reverse problem I'm having. My family doctor is suspecting lupus while the rhuemy just sits there and stares at me.

Dont take any guff off your GP. I spent 4 yrs in agony because the doctor I was seeing kept telling the pain that was keeping me up all night was just women stuff. and to stop complaining...well it was my gall bladder (sp) and it NEEDED to come OUT.

That was when I switched to my current doctor. She is wonderful. She told me not to hesitate to speak up if I didn't feel she was understanding what I was going through. And I have...and she's listened and acted upon my requests. I love her to bits.


sick n tired
04-03-2008, 09:43 PM
Hey Linda,

I hate it when doctors call us with news like that and leave us hanging for a week.
When I got the initial blood tests drawn that is what the office said to me. What I did was request that my bloodwork be sent to me via fax. I hate surprises....by the time that I went in to see him, I had looked up what an ana and all the other tests that were out of whack with me.

I hope that the wait won't be too unbearable....

04-04-2008, 02:12 PM
Hi.. I wish you luck with everything! Boy can I relate to you. I have struggled with similar symptoms and situations for years (I have recently posted something here..introducing myself)... I hope you get good info and results from your visit! I just had a terribly frustrating visit with my rhuemmy. It was the most confusing thing ever. She starting out talking about psychological stuff (it's all in in your head-- is all I heard)..this actually MAKES me depressed, because in the meantime she has been treating me with medication for lupus and telling me on other visits the only reason I don't have the dx is b/c the blood work has not shown. Then after the physical examination...she tells me I have a mouth infection common for immuniosuppressed people, I have a sore on my head to be biopsied b/c it looks like discoid lupus, and I have to get an EMG b/c my muscles are weak and cramping and she suspects muscle disease, but it is likely part of the connective tissue disease...so why is she saying at the start things about "it may be psychological".. On top of all this I know it is not in my head!!! I am a relatively psychologically sound person, for goodness sake! :? EXCEPT for being told I am not really sick!! Seriously, of course it adds undue stress. Actually, I am a therapist by profession. I am right now on short term disability, I am working on my PhD in grad school, and thank God for that, because it gives me something to do! I know this illness is confusing. And I get very frustrated when my own doctor who treats me for it, puts me on disability, restricts my work hours, sends me for tests, and talks about going on to a "stronger medication to treat the disease" also talks about not being sure if I have a disease!! ahhhh...

I feel your frustration..and can empathize completely. As for me..my ANA has never shown up when I am tested..that is the biggest downfall to my diagnosis! I have had elevated sed rate, my vitamin D is always low, my red blood count is often low. But often everything BUT my vitamin D is normal. Symptom wise I have had almost every symptom there is to be clinically diagnosed: Butterfly rash, pericarditis (x4), neruophahty, partial complex seizures, joint pain, muscle pain, muscle cramps, mouth sores, mouth infections, random rashes, extreme fatigue, ....I have not had kidney involvement..which I am very grateful.

My doctor even said to me, it doesn't matter if we call it lupus or not. I will treat it the same either way! She confuses the heck out of me.

It is good to have a place like this to share with others who relate


04-04-2008, 02:31 PM
Christine, I am sorry to hear that you are having such a problem with getting a straight answer. I have found this place a very comforting and comfortable place to be. I don't struggle with my family understanding which is good, it is just trying to get certain doctors to understand that I feel this bad.

I often wonder if my pregnancy with my daughter started it all. I was really sick with her. I had so much joint pain, but I chalked it up to being pregnant. I could barely walk. Everything I ate I threw up or had diarrhea. I was so tired I actually had to stop working because I was so sick. Two weeks after I had my daughter I was in the hospital having my Gall Bladder out. I don't know if that is related in anyway or not. I have continued to have the same pain in my joints that I had when I was pregnant. I have pain in my upper abdomen quite often now and sometimes it radiates to my back.

My question is to those who have been diagnosed, do my test results that I got and the way the Rhuem. is being about seeing me in his office lean towards the diagnosis of lupus? I am new to all the info. I have tried to read as much as I can about the disease, but I am still left with being uncertain about a lot. I guess it is just because I am scared to death, that it means that I do have Lupus. The only comfort is knowing that if I do end up with this horrible disease is the fact that their are great people like all of you to help see people through. That is best thing about this whole thing. Thank you to all of you. I appreciate you taking the time to leave me advice, comments, and just letting me get to know you better. Take care to all of you.

04-04-2008, 06:46 PM
I just wanted to mention ALL my symptoms began for me...my first really obvious flare..about 4 months after I had a total hysterectomy for endometriosis which had to be followed by a few stays in the hospital for damaged ureter, and a major surgery to fix it. Looking back, I think something or a few things, triggered the onset. My sister has had lupus since she was 17 but prior to my hysterectomy all I had was more frequent viruses than most, with random fevers. I had my first of 4 incidences of pericardits after the hysterectomy. I have read there is research linking hormones, pregnancy, and endometreosis to the presentation of lupus. good luck again. Let us know! :)

04-06-2008, 12:37 AM
Hi lcasnyder,

I was very fortunate as my family doc told me what he "thought" it was and gave me a referral to a rhuemy. The rhuemy then confirmed IT. It took about 6 months (after many biopsies) to finally get a diagnosis. Whew. I am very fortunate my doctor listens to me; praise God.

I am wishing you the best and lots of hugs. Get a copy of your labs and then you can then look them up on webmd. Always get copies and keep your own set at home. Keep a daily record of aches and pains, etc. Ask or demand for a referral to a rhuematologist.

I hope this helps.

Take care,

Faith 8)

04-06-2008, 08:15 AM
Welcome. I am glad you found this forum. The diagnosis process can be incredibly frustrating. Sometimes it takes years before the doctor (even the good docs) can put everything together. There is not just one "typical" presentation for lupus, as I am sure you will find out from reading the posts on this forum. For instance, I have had episodes (since my thirties) of extreme, rotational vertigo, similar to a ride at the fair that flips over backwards at about 90 miles an hour. That may be a slight exaggeration, but you get the point. Anyway, it was my otolaryngologist (ear nose and throat doc) who sent me for the original blood work that detected my off the charts ANA, which led me, three years later (I am 47 now) to a lupus diagnosis. Over the years, as it turns out, I have had many lupus symptoms (joint pain, fevers, FATIGUE that has nothing to do with chasing around children)...it is easy for the docs to say you are depressed. It is much harder to put the puzzle together.

The best advice I can give you is to get copies of your lab results EVERY time labs are done. Keep a folder of these and do some research on what these results mean. These results may change over time, which also makes the diagnosis process difficult. Lab Tests Online has a very good informational site that explains many of these tests. Information is power in terms of dealing with any autoimmune disease. Don't let the information scare you. Let it empower you with informed questions for your doctors. When you participate in your care in a proactive fashion, you will be amazed at the difference in treatment from your physicians. And don't be afraid to change doctors until you find a partner in your care, instead of a doctor who is only interested in the shortest amount of time that can be spent with you. Your life and physical well-being is important. Make sure the doctor understands you won't take "you are just depressed" for an answer.

Best of luck to you. Keep us posted.


04-07-2008, 08:58 AM
Once again I would just like to say thank you to all who have taken the time out to extend a word of encouragement and to just be honest. I will make sure I get a copy of my labs tomorrow when I see the Rheum. I am really nervous though. I am scared about what he is going to say.

I have a concern for him when I go. I am having some awful pain in my right side and back. I don't know what the deal is. I have only peed like 9 times all weekend (Fri-sun.). I don't know if that is good or bad. I haven't had any blood or anything like that, just pain. I don't know what to make of it. I get UTI's all the time.

Well I will let all of you know how I make out tomorrow. Thanks again for all the support. YOU GUYS ARE GREAT :D Linda.

sick n tired
04-07-2008, 11:17 AM
Hey Linda,

When is the doc appt? You need to get into see a doc, today if it is later in the week. If you are possibly having problems with your kidneys time is of essence. You need to be on something to stop that. Sometimes we can't see the blood.

I hope that you are feeling better, soon, but get in asap.

blessings to you,


04-08-2008, 02:47 PM
Hello, to all. I just want to let my new lupus family know that I was diagnosed today with SLE. The doctor put me on Hydroxychlor and Prednisone. I have appt. with him again in 6 wks. He took a urine sample and more blood work. I had a temp. today of 99.8 and I left him know about the pain that I was having in my side that radiates to my back. He pushed around and about sent me through the roof. I am just glad that I now know what the heck this is that has been the cause of my aliments. I wish that it could be as easy for all of you to find out what/diagnosis you need.

04-08-2008, 05:21 PM
:lol: lcasnyder

That's a double edged sword, getting a diagnoses. Part of me wants to know and the other part does not.

I'm pleased for you and hope your medications kick in and you start to feel better.

04-08-2008, 06:15 PM
lcasnyder, Hi...

The wondering has stopped for you...but don't let worrying about tomorrow take it's place.

Head hugs,

04-08-2008, 07:04 PM
You hit the nail on the head with that one, it literally is a double-edged sword. I am just glad that I know what it is for sure and that I can go from there. There is no more wondering what the hell is wrong with me and listening a certain doctor tell me that it is all in my head and that the reason why I am tired is because I am chasing a 3 and 2 year old around all day. That made me feel good just to hear that there is a cause and it wasn't my children.

04-08-2008, 07:18 PM
You hit the nail on the head with that one, it literally is a double-edged sword. I am just glad that I know what it is for sure and that I can go from there. There is no more wondering what the hell is wrong with me and listening a certain doctor tell me that it is all in my head and that the reason why I am tired is because I am chasing a 3 and 2 year old around all day. That made me feel good just to hear that there is a cause and it wasn't my children.

What helps me deal with things is not thinking twice about it. I know it's really hard with all the "wonderings" floating about. But consider things in this respect; you have one body. one mind. take care of it. You care about yourself, you care about your family; it's not a choice anymore. Just look at things as realistically and pragmatically as possible. Take every day one step at a time. And do what's best for your body. And NEVER take for granted your mental state. If you're not feeling well emotionally, it WILL take it's toll on your body.

Best of luck, I'm glad you have the diagnosis- knowledge is a good chunk of the battle. <3

sick n tired
04-08-2008, 08:22 PM
I am glad for you in that you know what is wrong and in a way you have been validated. I hope that you can now get relief.



04-09-2008, 09:52 AM
This is a letter that I found on a MySpace profile of person who also has LUPUS. I thought that it may be informative to those of you who donít know anything about it. Or for those of you who know someone, keep this in mind the next time you see them and then just maybe you will be able to understand a little bit of what they/we go through day in and day out. To us that have it and could never find away to explain it to others. Feel free to copy and use else where that is what I did. Thank you. Linda


Having LUPUS means many things change and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about LUPUS and its effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand...... These are the things that I would like you to understand about me before you judge me....

- Please understand that being sick doesnít mean Iím not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably donít seem like too much fun to be with, but Iím still me stuck inside this body. I still worry my family and friends.

-Please understand the difference between "happy" and "healthy" .When you've got the flu you probably feel miserable with it, but Iíve been sick for a few years. I canít be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesnít mean that Im not in a lot of pain, or extremely tired, or that Im getting better, or any of those things. Please, donít say, "Oh, youíre sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

-Similarly, please understand that many of my symptoms arenít always visible to people who donít know me well. So if you see me and I look well, this doesnít mean Im not in pain, or exhausted or too shaky to write or sometimes even move, or havenít lost sensation, or am not having heart problems etc. Please donít say well you look alright! Especially if Iíve just told you I feel ill/have been very ill. I can look ok and be very ill. Telling me I look ok not only wont help me feel better but will make me feel you are casting doubt on the fact I feel so bad. Feeling sick is hard enough without having to continually battle to make people believe you are.

-Please understand that being able to stand for ten minutes doesnít necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I manage to stand up for ten minutes yesterday doesnít mean that I can do the same today. With a lot of diseases youíre either paralyzed, or you can move. With this one it gets more confusing.

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what LUPUS does to you.

-Please understand that LUPUS is variable. It's quite possible (for me, its common) that one day I am able to go to work, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying "But you did it before!" if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, it this happens please do not take it personally.

-Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me I need a treadmill , or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct....if I was capable of doing these things , don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do.
Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously LUPUS deals directly with the immune system, and because our immune systems don't work the way yours do this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, LUPUS may cause secondary depression (wouldnít you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

-Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now...it canít be put off or forgotten just because I'm out for the day (or whatever). LUPUS does not forgive.

-If you want to suggest a cure to me, don't .It's not because I don't appreciate the thought, and it's not because I donít want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with LUPUS then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the Internet) between people with LUPUS, and if something worked we would know.

-If after reading that, you still want to suggest a cure, then do it, but donít expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In may ways I depend on you....people who are not sick....I need you to visit me when I am too sick to go out....Sometimes I need you to help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . ...and, as much as it's possible, I need you to understand me.

04-09-2008, 03:38 PM
Thank You so much for sharing this letter. It is very "on-point" and covers everything that we deal with. I am going to add it to my library (along with "The Spoon Theory").

Again, Thank You
Peace and Blessings

sick n tired
04-09-2008, 07:54 PM
Oh my goodness,

That letter was so on-the-money!!! I actually think that I might take it, tweak it to fit me, and then send it to ALL of my family members and some "friends", too.

Thanks for sharing that lcasnyder, ....I hope that the writer is doing ok, today.



04-09-2008, 08:11 PM
You are more than welcome. I just couldn't let that one go by without posting it here. I thought it was wonderfully written and explains a lot of what daily life is like. I have felt really awful lately. Today I think/know I over did it. I had housework that was driving me crazy that I did. Now as I lay here tonight I wish that I hadn't done so much. I have had a headache that I can't get rid of. It just will not go away. I started the medication today. I know that it will take time for it to kick in, but I hope that it does help. I just don't know if I can feel like I do to much longer without it affecting my personality. I am usually a very upbeat person and like to be social and I just don't have it anymore. I feel bad for my kids, because I feel they are suffering because of the way I feel. My daughter who is 3 tells my son who is 2 that when I lay down that mom is sick and that they should leave me alone. It breaks my heart. The one thing that I wanted more than anything was babies and now I don't feel like I am doing for them the way I should or would like to. That is the hardest part of this for me.

sick n tired
04-09-2008, 08:47 PM
Hey Linda,

I used to have those same feelings when mine were young. It seemed that each pregnancy took something out of me and was hard to "get back to 'normal'"

I believe that second-guessing and/or guilt goes along with the territory of motherhood, but I found that if I did the best that I could do, then that was ALL that I could do. Try not to beat yourself up. One thing that is positive is what you said about your 3 year old. How smart and compassionate is that? They will grow up more in-tune to others pain. Many teens just go throught the terrible two's again but worse....yours might be able to temper the "me,me,me" thing with caring and compassion. I had a friend years ago who was totally blind, since birth. Her daughter was unreal what she was capable of at the age of 5. I was sooooooo impressed.

Just some words of encouragement....

Take care,


04-09-2008, 10:48 PM
Thanks, Karen. I appreciate the encouragement. I feel I do the best I can, but sometimes you wonder if it is enough. I stay home with them so they have me everyday all day. I hope that they don't look back and feel like they missed out as they get older. I just don't want them to feel like I wasn't able to do for them. I want them to be happy and I think they are. It is just hard knowing how I feel inside and to put those feelings on the backburner. Thank you again.

sick n tired
04-09-2008, 11:10 PM
Hey Linda,

You need to not be too hard on yourself....

I have some bad news, though....no matter what you do with your sweet ones, when they are teens...there will be something that they thought they should have had and didn't...... :lol:

Not trying to be a downer, but I have many kids and all except one are either teens or early adulthood....I stayed home with them and homeschooled them....my younger ones are in school, now, because of my health. A few years ago one of my older ones complained that she was homeschooled and the next day I had one of her younger siblings complaining that I had put her in school... :roll:

My point is they all go through something like that...The good thing is that they get older and then know why sometimes...the both in turn have since understood and said that they are proud that I hschooled them :D .

Your precious ones will realize that you did the best you could,


04-10-2008, 09:26 AM
You were the ray of sunshine that I needed today. I did to much yesterday as far as housework went. I paid for it all night last night. My legs, back, and arms just ached all night. I have the headache still, I have had it for like 3 days now. It is much worse at night. I didn't get to sleep until 4:15am and then took my daughter to pre-school this morning. I appreciate the time you take out of your day to give me the encouragement I need. I look forward to a supportive friendship with you. Your kids are right to be proud of what you did. Wishing you the best. Linda

sick n tired
04-10-2008, 08:29 PM
Hey Linda,

We could have talked...I didn't get to bed until 3:30 am. That was when the tornados blew all the power out for 8 hrs. :(

At any rate, I have been there, you feel like you have some extra strength. Perhaps you are coming out of this problem and there is so much to be done. I was there today, only running some errands and browning 6 lbs of meet really did me in. I didn't have enough energy to cut up the broccoli. :(

I am ready for blue skies...oh yeah...thats what we had, today...it was the "hurt-your-eyes" blue. A beautiful day....of course all of the snapped trees littering the streets weren't nice to look at. The good news is that noone was killed in the storms last night.

Have a great day,


04-11-2008, 02:53 AM
I am glad to hear that the sky was blue. We had beautiful weather here yesterday. The sun was shining and it was warm. It is to be warm again today, but with clouds. I worked in my yard a little yesterday (in the shade). The Rheum. office called me yesterday and said that my urine and blood work looked good. The double stranded dna still showed lupus, though. Which didn't surprise me none. I don't know what to think about my urine though. I urinated twice all day yesterday and I was drinking a lot. When I do go pee I feel like the is some irritation. If it persists I will just go my primary doctor and get them to check my urine, instead of calling to the Rheum. office, wait to get in and drive an hour to get there. When I can just go to my primary physician and be there in 10 minutes. I am still having pain in my right side (flank) though. It is not persistant, but it is still there. I didn't sleep for anything again last night. I don't know what to do to be able to sleep. I layed in the tub last night trying to ease my joints, but it didn't seem to help. Do you have problems getting and falling asleep, or is this something that us lupies have to deal with? I made my appointment yesterday for my eye exam. My parents are taking my daughter tonight and keeping her over night. She will be gone most of the day on Saturday. That will give me a little bit of break. My son and I will have sometime together. My husband has to work all weekend. So, it will be a quiet weekend and I am looking forward to that. Hope that you have a good day and weekend.

sick n tired
04-11-2008, 10:42 AM
Hey Linda,

I am glad to hear that you don't have kidney involvement, but it is confusing considering your other symptoms. :? I would go to the general doc, too....in fact because my insurance pays for my GP then I might stay with him and go in extreme emergencies to the rheumy. We are snowed under with bills from my daughters recent hospitalization/surgery/emergency room fiasco....and they still can't say what is wrong with her :mad: ...grrrrr.....

A quiet weekend might just be the ticket for you... is your son in the terribles? I mean the Terrible twos. I have a friend and mentor 20 years my senior who corrected me once and said, No, Karen it is the Trainable twos" The only problem was when she was telling me that, I was literely dragging (sort of) my son who decided he wanted to play at church rather than go home...he was screaming at the top of his lungs, too.
All I managed to say to my friend was, "you call this trainable" :lol:

That son is now going to Liberty University to be a pastor :lol: I guess Mrs Gitchel was right and he was trainable.....it is sure hard to see whilst still grubbing in the trenches, though.

Well, hope you have a great week.


Oh...go to the store and get something called Melatonan...Ask your doc if it is all right, it should be...maybe that will help with the sleep problem..I am told that insomnia is part of the package. I got to bed at 4 am again. :(

04-12-2008, 06:48 PM
What is going on with your daughter? If you don't mind me asking. That is funny how that worked out with your son. My kids both were wonderful at 2. My son is 2 now, but he is just so much fun. My daughter was great at 2 also. I enjoyed her so much. As soon as she turned 3 it was down hill. The temper tantrums and big mouth. She is getting better now though. She will be 4 next month. She wants to have an Ariel birthday party. I do their cakes for them for the parties and she wants Ariel, Sebastian, and Flounder on her cake. I said nothing like taking it easy on you mom. The weather has been so nice all weekend. I couldn't stay inside. I guess it is cabin fever. I did some more yard work, I am hoping til the end of next week I will be done. My daughter is singing in church with her preschool class tomorrow. She is so excited and quiet frankly so am I. Well I hope that your weekend has been a good one and that you were able to get some sleep. I still haven't, but I will address my dr. on you suggestion on Monday. I will try anything to get some rest. Thanks again. Linda.

sick n tired
04-12-2008, 09:51 PM
Hey Linda,

There is another post on this forum that is entitled "my daughter has a mass in her chest" at least that's what I think that I put....

in a nutshell...she was very ill starting the end of February. We were in and out of the emergency room trying to get someone to take this seriously and not like the flu.( she was sick last November, too)
Finally the pain became acute and we rushed her in, again(3:30am) this doc did more than conjecture. He checked her blood and after that he got serious. He did a CT Scan and it revealed a mass. They thought it was lymphoma but it is not after biopsy....they still are unsure what it is and are waiting to see if it shrinks or grows to tell what to do.

Most of my daughters met the terribles in their mid twos and by the mid threes they were better. The boys were in their terribles in their late 2's and went to their fours....four is a lovely age for both sexes...they are so sweet and loving.

I am having real trouble with my stomach lately. I need to be scoped again. yesterday I believe that I was bleeding.

How special for your daughter to be singing. I loved every moment of that. We went to Barnes and Noble to hear our youngest daughter sing a number from High School Musical...the school was doing a promotional and they were called to do part of it....it is still special and I had tears in my eyes..So enjoy....

Have a great Sunday,


sick n tired
05-15-2008, 08:48 PM
Hey Linda,

Have you gotten back on the site? I am posting this in hopes you will see it. So how are the party preparations going for your daughters birthday?

Hope all is well with you,


06-02-2008, 07:51 PM

All is going well. I have been feeling really well lately. I can say I almost feel like myself. I feel like I should knock on wood, though. You just never know when it is going to hit again. How are you? How did your vacation go? Good I hope. I hope that the sun was not too much for you.

The party went really well. Her cake got really good I have to say. I was really impressed with myself again. I am watching the hockey game right now. GO PENGUINS!!! I hope that they can pull it out. I don't know if you are a sports fan or not.

Well I hope that things are going well and that you are feeling good. Talk to you soon.