Welcome SadSickTired to the forum

Welcome Trish!

 

I'm starting a new thread for you. Then everyone knows you're here. Let us know if you have questions or if you need support. We're always here .

 

Blessings,

Ginny

Hi Trish, I also want to extend my welcome to you!!! Hope to hear from you..
Debbie

Thanks to everyone! I am not sure what is going on with me. I am in diagnosis limbo. about 8 years ago I started with this terrible itch and sores on my scalp. And I had a red flush across my cheeks and nose. Since I was starting a new high stress job and was allergic to everything anyway I just assumed it was a combo reaction (oh and I was also in the middle of a looong divorce) to everything going on. I have always had a bag of issues so one or two more didn't seem to be a big deal. And so it went for a long time. Fast forward to now and a really bad cold/bronchitis. Nothing worked and I wound up in the ER unable to breathe. They gave me a breathing treatment that didn't work. I left feeling frustrated- even after I had my say! A couple of days later my GP gave me a script for methylprednisolone. I started to feel better right away. Except that my usual aches and pains (joints and migraines) got worse. But that slowly started to go away. I started to research what its used to treat and I came upon Lupus. It was like reading a history of my life- suddenly I felt a wave of relief (weird huh?) Suddenly my nasal polyps, kidney stones, hot flashes, scalp issues (which a derm looked at for about 30 secs and told me I had rosacea on my scalp and face- but nothing he prescribed ever worked) joint pain, migraines, upset stomach, sinusitis, FATIGUE (really bad). I always just thought that I was high maintenance. But maybe not. So I got with my GP and he agreed that it could be lupus. He wanted to wait until I had all of the steroids out of my system before any testing. In the meantime he sent me to the pulmonologist who was about to start clinical studies for sleep apnea. He was really selling the sleep apnea diagnosis until I told him that I didn't want to participate in the studies he told me I had asthma and allergies. He discounted all of my PFT results and the lung blockage that the other 2 doctors had been concerned by. He wrote me a script for Singulair and Azmocort and sent me on my way. So now I am waiting to take the tests. I hate being in limbo and being sick, sad and tired. On top of everything else whenever I try a new med I react really badly to a lot of them. Bright red color all over my body and nausea and congestion about 90% of the time. It takes me about 2 days before I start feeling better. So then I miss work (I am a manager in a warehouse for a retail giant) and I feel guilty. Really guilty because managers aren't supposed to miss work. We are supposed to be tough and set the example. Outside of several kidney stones (all operations) I haven't missed work in almost 9 years. But since I don't have a "reason" most of my co-workers seem to think I should just "suck it up". Its almost like I want the Dr. to give me a finite answer so that I can say "Here it is- on paper. Its not in my head. Dr. Mike says so!" People have actually called me a hypochondriac to my face. Like I don't have a hrad enough time getting out of bed in the morning- that makes me want to crawl right back in! Has anyone else felt this kind of pressure to "just get over it"? I am just so frustrated and scared. Because what if (and I feel it to the bottom of my toes that this is what I have) I do have Lupus? What if the meds make me feel worse? I have been thin for most of my life but I gained 60 lbs over the last three years since I am often in pain or tired or if the sun is out (oooh horrible rash and nausea being in the sun) which is why I work nights! I am so tired of being this "new" me- I want my easier life back. Anyone else sick, sad and tired (and scared)? And what do I do if they just don't know what's wrong with me? What do you guys do? How do I demand an answer? Thanks for listening to my crazy ramblings- nice first post huh? Please don't kick me out! :)

Hi Trish!!! You do sound like you could have lupus we all tend to be in limbo for sometime. I went threw a couple of rhumys and derm. I went to a teaching hosiptal where I was diagnois. The sun is horrible on us lupuies, in the mean time use sunscreen, wear long sleeves, and a hat. Don't worry about what people think I know that is hard to do, your sick and you have do what needs to be done. I feel for you belieave me it's so tuff to work and feel the way you do!! Nobody on this forum will kick you out that's what were here for, to help one another so you can vent all you want ask any question if we can answere them. Take Care
Debbie

Trish,

You said "please don't kick me out" and I say welcome back! Come as often and stay as long as you want! That's what this forum is for.

I hope you'll make an appointment to see a rheumatologist. Your pcp isn't trained to diagnose lupus. Lupus is a very difficult disease to diagnose because it's not all about lab work. Eight years is a long time to suffer.

Pat

P.S. I love your grandmother. I've always said, "it is what it is" because we must learn to accept the hand life deals us and keep smiling.

Yes, I do, though I wouldn't call it "huge" bursts of energy, but more like normalcy. When I get some energy and do too much (which means that I'm at 50% of my old self for about 50% of the time) I pay for it for a couple of days. It's hard, but I'm working on finding healthy limits.

hi again ... even with my pos dx i sometimes feel like it isn't real ... drugs make a lot seem 'unreal' ... but i am not on any now so it isn't just them.
burst of energy / burst of normalcy ... i tend to do myself in by taking advantage of the 'energy burst' & getting lots done BUT i have learned thru enough flares that pacing myself can get me thru longer peiods with less 'payback' ... it took years to learn to 'let things go' and get used to being the one to set my pace as i discover the 'new me' ... i am learning to listen to myself (which is the blessing here ... maybe)

... i don't know all that you have been thru but i agree 8 years of illness is a long time! no dx yet ... you are stronger than you think!

Jenna- I totally get everything that you are saying!  They say "how are you feeling"  they mean "Again??"  Its like when people are anorexic and really sick, and some stupid stupid person comes along and says "why can't you just eat?"  Sick is sick.  And just because someone can't or won't understand it doesn't make it less real.  Its especially hurtful when its someone you expect more from. 

I am rambling a bit because today I had my blood draw for a slew of tests.  I am not sure what to hope for: no conclusive results and more wondering or conclusinve results that point to something serious.  Either way the doc syas most of the results will be ready tomorrow.  I am really lucky because my GP is really great.  And appointments (even first ones) happen pretty quick even with specialists.  I got the referral for my pulmonologist on Friday and got an appointment on Wednesday.  I guess its one of the good things about living in podunk- not alot of competition!  In fact it takes me longer to get in to my GP (Dr. Mike is wonderful- of course that's just his first name to protect his identity and kee my competition down!)  He is sooo cute and really cares.  Plus he has that James Dean way of talking that is so sexy!  He is only 1 year older than me so all through school, jr high and high school I got to crush on him.  Now I really respect him and like him (his wife and children are of course beautiful!)  I wish he could just treat me and not have to see another doc- darn!  Well wish me luck with my tests!

Thanks for the tip Rosie!   I still have some painting to do in my house so I will try the dividing it up into breaks plan!  Well the bloodwork came back today.  The CBC came back okay, but the nurse at the GP told me that the inflammatory tests came back really high.  She didn't tell me which test was which (it was over the phone- I was okay with that) specifically, but she did tell me that since these tests are so generic, they couldn't really give specific information.  She told me that my doctor thought that it would be a good idea to see a rheumatologist because that way more in depth testing could be done to better pinpoint the specific areas or problem.  So basically the bloodwork was odd enough that my GP (who really is amazing) felt it would be better for me to see the rheumy.  And if I wasn't lucky enough to have a very responsible doctor- it turns out my specialist will be only 1 hour away (which is great here in smalltown, America) and my new doc is a chick!!!  I feel like I just won the lottery.  So the nurse told me that they will fax all of my info over to the specialist and make the appointment and get back to me early next week.  How messed up am I that I am excited about this appt?

Okay so here is where I could use some help- what can I expect to happen on my first visit?  What should I ask?  What information should I include?  And finally- how personal will the questions be?  My mom is coming so I just want to kind of know what could happen.  My mom, by the way, is the mom that everyone would like to have.  ANd I feel really lucky that she's mine!  Thanks again guys- its so nice to have this place to come with such great people to help me and listen!

If you check in the "Lupus Resources" thread at the top of the page, you'll see a post where we all pooled our thoughts together to make a list of what you should be prepared to answer at your first visit. Good luck!