View Full Version : I'm an enigma wrapped up in an anomaly....

01-25-2009, 08:07 AM
Well, I'm going into a big week for me. I've been dedicated the last couple weeks to chasing down the things that have not been going well with me in the hope of feeling better. I mean, I've missed more time from my job in the last two months, than I have in the last two years!! With the economy in such shape, this isn't a good time for this.

RECAP: For many who have been so kind to read and respond to my situation, forgive my recap. I feel I've been flaring for the last few months. Other than plaquenil, I'm on nothing right now. I was on prednisone, but prednisone for me, seems to trade one set of issues for another. But looking back, overall, I felt better on it I guess. My doctor seems to think that plaquenil is the wonder drug and I shouldn't be flaring while on it and tells me that although a couple blood tests are off, I'm not in a lupus flare. I can accept that, but then, let's find out what it is. My primary doctor tells me that although my symptoms are real, they have an emotional basis. I replaced that doctor because I have no respect for a doctor that pulls the stress card on me. My stress is with how I'm feeling, not the other way around. Not all symptoms are similar to what I've experienced in the past (pre lupus diagnosis). I haven't been running a temp. In fact, my temp has been running lower than "normal". It's like I can't run a temp. And my Blood Pressure, which generally runs high....especially at the doctor from so many bad experiences has been running 10-15 points lower than normal. Mention that to the doctors, the look at you like your an idiot. I just know it's not normal for me. Finally the unfortunate timing of the car accident last week (got rear-ended).

UPDATE: So, I did go to a new primary doctor. She ran some tests on me and then promptly went on vacation. When she got back, her office called and said that it "looks like your lupus if flaring"...interesting but not surprising to me. However, I don't have an appointment with Rheumatology until the end of February, unless I go to my old one, I have an appointment this Friday. I'm going to my old one to see what I see as another month of this seems an eternity, I'm sure you can all relate.

Last week I did a sleep study. Probably should have cancelled it, as it was the night after the accident and I was hurting. But it came up that I have sleep apnea...Funny, I didn't have sleep apnea three months ago...or if I did, it wasn't disrupting my sleep like things are now. I was told that getting that awful mask to wear at night is going to "make you feel tremendously better". I'm not trying to be skeptical, but is this Apnea a cause or an effect. It feels like an effect to me. Either way, I go talk to that doctor this week as well.

My heart skips are back. Again, it's odd, but the things disappear when I took antibiotics, but return shortly after. Had to wear a Holter monitor AGAIN, but I suppose it's a new doc, she wants her own tests. I did that and turned it in yesterday, so I'll hear about the results this week.

Finally, I've been having so many tummy issues. Wake up and it starts hurting and there is nausea. Grinds on and off all day. I seem to recall this being an issue periodically pre lupus diagnosis. But my doctor wants to scan my gallbladder...in tomorrow for that. Again, feels like an effect...we'll see.

For good measure, they are having me see my kidney guy this week as well. Haven't seen him in like 3 years. I'm so-so about him.

So you can see, I'm having a big week in the hopes of having some answers. Keep my in your thoughts and prayers. It's all coming to a head, partly because I want answers. If in the end, this is all because of a flare, I'm going to be really irritated (but relieved) as I seen this coming months ago. Thanks for letting me air this out... Not a great week for a guy who hates going to doctors....


Angel Oliver
01-25-2009, 10:49 AM

What a week and yes i'll be thinking of you and hoping you get correct answers. How are you since the car bump? Hope you are feeling better and not hurting.

It is nice (in a weird way of course) to see i am not the only one with not so much trust in what the ''many'' doctors tell us. I also read your piece on your heart skipping a beat. I have so many problems with mine mainly at night time.Each time the doctors pull out the shiny sticker for my forehead that says STRESS ALERT!!! lol :) My symptoms all started at the same time i took ill in 2004 and i still have it now.
I so hope they get to the bottom of your ailments and you come away with the answers you need to make you feel at ease. I 'll be thinking of you.


01-25-2009, 10:54 AM
Hugs to ya Larz77

You've got a full plate.

Don't you just love it when they find something in your blood work, but they either forget about it or lose it all together.

Good luck with your rheumy appointment...I dont see mine again till May 19th...woohoo :P

01-25-2009, 11:36 AM

You can't seem to catch a break. If it's not one thing, it's another. I absolutely hate going to my various dr./rheumo/neuro appointments too. And I hate hospitals. I hope you can find some answers, and some relief. I'll be thinking of you. Hang in there.


01-25-2009, 11:55 AM
Angel, SITC and Rob, thanks for your support. Funny how it helps to know you got some people in your corner of the ring!

Angel, I know what you mean about those pesky heart "skips". And you are right, when they pull out the "stress" card. Seriously though, do you think? It takes all I have to get through the work day. Today I think about the drain of the upcoming week, I cringe. But I tell them, "Chicken and the egg doc" what came first. Then they think I'm focusing on the heart skip thing. Well, I've lived with it since June and I don't see it getting worse. But when I take antibiotics for things that have popped up, woe...I feel better and the skips are gone! They just seemed connected to how I've been feeling. If I get to feeling better and they are still here, I guess I shrug my shoulders and deal with them.

Rob, you and I share our "love" of doctors. To Angel's comment about putting faith in doctors, I don't. I have faith in what I feel. I just need the doctors help to get to feeling better (and stop from feeling worse). I've truly done everything I can do...rest, sleep, etc. If I could order my own tests and medicine, I would. I think part of the stress this week is just having to go to these appointments. The biggest fear, that this time next week, I know about as much as I know now and nothing different is being done.

Regarding my accident, some young kid in a hurry and driving much too fast for the conditions, hit my car from behind while I sat at a stop sign waiting to turn. Back and neck hurt. Car is in the shop for repairs, took major damage to the back end (better than $3,500). No, I didn't need this right now. Not at all. But what do you do?


01-25-2009, 12:43 PM
hi larzz77

so sorry to hear about your brick walls. I know the feeling of a pin ball and hate it.

Please don't be hard on yourself if you do end up finding out that you are experiencing a really bad lupus flare. I know looking for answers is a two-sided sword, but so many times we just come home and accept it that this horrible little disease is at it again.

the words won't really come to me now, but just don't get down on yourself.

share a smile today,

01-25-2009, 01:44 PM
Good grief Larz, when it rains it pours! Sending hugs of support and a shoulder to lean on -

01-25-2009, 02:46 PM
Thank you Hat Lady and Dreamer!