New Introduction. New Diagnosis and Question for Athletes

[brandy]

Hi Becca,



Yoga really helped me when I was first diagnosed! It lessened my symptoms. Brandy

[Becca]

wow..what a journey so far since my last post... i refused Endocort and wanted to do this as natural as possible. the "D" had disappeared shortly after my colonoscopy and i am clear there...competely Normal! ...went through some crappy gastritis pain which was debilitating...and with flushing with tons of celery and veggies (i dont seem to have a problem with fiber at all) ...and stayed off red meat..went fish and up'ed my Fish Oil intake and started my Vit E again....about 2 weeks ago...even the gastritis subsided..and i was able to do some yoga...and then started feeling like my old self (aside from losing a TON of muscle mass..and gaining..not weight..but inches on my new "softie" body). Had not yet started back with Crossfit or lifting or cycling...but it was a start.....

...then i screwed up. :( on a trip to an alumni gathering... (and after the symptoms subsided..i seemed to be OK with a glass of wine)..i was stupid and had one of those sugarey cranberry juice vodka drinks and KABOOM! back down the next day with 3 days of gastritis symptoms....but then they subsided as i cleaned up my diet..but the chest pain did not. Now after a dr appt...this morning..I find out my oxygen levels went from 99% to 91%/headache..and what was a "small plural effusion" in my right lung has now taken over over half of my right lung...and they are bringing me back to drain it. my ANA had come out normal in previous test..but pulmonologist seems focused on exploring rheumatoid stuff...saying symptoms often come prior to blood test positives ..(but i still don't show the skin issues etc..of classic lupus-hich my Dad dies of) ....and really really think everything is connected to that drink..that put me back into a flare state...


uughghghghgh!! wish me luck..a needle in my back..scare the Cr*P outta me.

[Leah]

Good luck sweetie :)

Leah

[tex]

Hi Rebecca,

I wish you the best of luck.

And please remember that you have an inflammatory bowel disease. If not properly treated, MC/CC makes us very vulnerable to the development of additional autoimmune diseases.

Tex

[Becca]

.....they took over a liter out before i had gotten too uncomfortable. Oh My..that sucked. :( it's out for testing..and i am gonna take it easy for the rest of the day.

[ant]

Dear Rebecca,

Wow....hope things get better. Sending you positive vibes from afar )))))))))

Best wishes, Ant

[JeanIrene]

Rebecca, hope it gets better very soon.

Jean

[KD]

What is the cause of your pleural effusion? Have they ruled out pericarditis? Is your CRP (c-reactive protein)elevated. I also developed pleural effusions and pericardial effusions when I was at my worst. Needed to go on prednisone much to my dislike!!! It did make my MC for a short time till they started adding NSAIDs and Colchecine which Made my MC worse and I have still not recovered from 16 mos later.

[Becca]

..they don't know the cause of the plural effusion yet. Since my last "round" of tests (EKG, CTScan, cardiac blood work in the ER)..that was all indeterminate towards pericarditis (wasn't really showing anything) and we figured the chest pain may have simply been the ripping gastritis. THIS time, my EKG was better, my blood pressure stayed the same...however my O2..obviously stupid low, and my elevated D-Dimer 1000 went up to 2240. My chest Xray vs last time...was MUCH worst and i actually couldnt find worst one on the internet in my research. When i do things..i guess i just do 'em big! They send out the fluid for testing (takes several days) and from the ratios of fluid protein vs serum protein can usually place pleural effusion in one of two categories: Systemic (alike to trauma-impact on that side) or Local (which is wide encompassing viral, bacterial, rheumutoid/lupus, cancer etc.) which point to further testing. Dr checked for aches/swollen joints (none) and my skin (no issues) . Says she doesn't see any link to MC.(aside from coming almost IMMEDIATELY after that darn vodka drink)....so we're in "wait and see mode" She warned me that it could come back indetertimate...in which case we just see if it happens again.

I was in agony last nite (gastritis is back..along with the pleural layers being irritated without the fluid making all a bit worse-she warned me it might be)
Blasting the celery smoothies/salmon/broccoli and berries today. lots of fluids..and my last two "left over from root canal" Vicodens.

[KD]

I understand the pain!!!! When my pericardial and pleural effusions were at there worst I was begging for narcotics!! It was seriously the worst pain I have ever experienced!!! And I gave birth without any drugs!! I didn't know anyone could endure that much pain, keep in mind I do not tolerate narcotics at all. I just have to look at a Vicodin and I get nauseated!! The only narcotic I can tolerate is daludid and I needed it every 2 hours for about 36 hours. I have never been so sick in my life. Before the MC I was a fairly healthy 50 year old, in the last 4 years not so much luck. I surely hope they figure out your problems. I will say a prayer for you!!

[Becca]

Well.....talk about bad timing... but so far the tests are ruling out any rheumatoid issues/malignancy/ and lupus....and awaiting viral and bacterial test results in today..but with no fever..the dr seems to "not know" yet. With a cross country flight that i did on March 6th and another on March 12th ..even though i dont seem to have pelvic pain or deep vein thrombosis...my d-dimer and possible risk factor of bowel issue (Chrohn's and ulcerative are listed as a risk) all is pointing to possible pulmonary embolism...with no DVT and cause of the pleural effusion. (It's not just inactive people...but athlete's like Serena William's etc. Can fall victim..)....not QUITE connected with colitis..but colitis is put on the list of risk groups along with birth control pills etc.. More tests will hopefully be conclusive..and then i can work on treatment, management As my boyfriend said "yes...this IS a test"

[Zizzle]

Wow, what a scary journey you are on! I'm hoping for the best possible prognosis for your pleural effusion and some pain relief, STAT!

[KD]

I hope they figure this out soon!! Has your pleural effusion worsened since you had it drained? I know how frustrating it can be. They never came up with a reason for my pericarditis even tho I was tested to death. They just call it idiopathic and sent me on my way. The rheumatologist was pretty sure it was autoimmune which I think is a cop out just like idiopathic URGGGGGG!! Hang in there it sounds like they are at least working on it!! Good Luck!! KD

[Becca]

Pleural effusion came back to the same level (i had about a liter taken out) within 24hrs latr. Back SOB (short of breathe...although it IS a son of a B&*()^)..lol. by Sunday. Now it's just a waiting game...which with my ADHD..is killin' me. :)

[KD]

Becca,
Hang in there, thinking about you ans saying prayers!!