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serand4
01-27-2011, 06:38 PM
Considering Lupus is an AI disease, I just can't seem to get well -- EVER! I just spent the week with another sinus infection and chest cold that knocks me down completely. Okay, next stop, pcp, antibiotics and today I feel a lot better. Yeah! However, my body and mind go into this immediate recovery mode where I have to get the house in order and stock up on groceries because without a doubt, by Wednesday of next week, I'll be sick again! I've had two weeks without lung issues in the past four months which definitely settled in within a month of the onset of the Lupus. I see the lung doctor on Feb. 2. My last lung doctor diagnosed me at first with shrinking lung disease (horrible diagnosis) but then my rheum dr. tells me I don't have Lupus which apparently shut that lung Dr.'s brain down because I never got any explanation on why my lungs operate at 70%. I mean, he checked out of the process and honestly, when you're constantly sick, you just stop hounding these guys. My INR (blood thickness) never regulates so I'm supposed to go see a specialist since I have the blood clots and my blood stays funky (funky blood - great name for a rock band!). Apparently, while I'm thrilled I have medicaid, finding specialists that accept it is kind of tricky. Again, when you're sick you don't feel like spending the afternoon on the phone to find that one specialist.

But...on the lighter side, thank you Lord for a good day!! I started the Fentenyl patch last night (scary, I know) but my back pain and fibro pain had started to just own my brain! I was in so much pain after shoveling snow last week, I think I messed up my back even more. Probably time for another MRI, just not in the mood. But it helped so much. I slept so well and could control the pain today while actually getting stuff done and staying in a good mood. I made my son laugh several times tonight which hasn't happened in a long time and that made my whole week. Before I got sick,that was our favorite thing -- watch stupid tv and laugh. When I'm sick, I sit. The end. He actually got a hot meal and a happy mom all in the same night!

Tell me folks, do you guys go through these constant cycles of illness? Is this common? Perhaps I really am misdiagnosed? My pcp is absolute in this diagnosis while my rheum stays uncertain. I certainly have plenty of the symptoms but it just seems odd to always be sick. Well, I will wait for your input because you guys are living it and my doctors simply deal with the details.

Take care, God bless!

Saysusie
01-27-2011, 10:33 PM
Hi Serand4;
One of the primary features of Lupus is that it is a chronic disease. I think that, for most of us, this means that we are chronically and constantly ill. So, you are not alone: for a large portion of us, our disease means chronic, constant illness. When one symptom gets better, another one gets worse or a new one appears. We are beset with one thing after another and rarely do we have any prolonged periods where we are not feeling ill and/or pain for one reason or another.
Another unfortunate commonality is the reluctance of our doctors to agree upon a diagnosis (or to even commit to a diagnosis) and to keep us on a merry-go-round filled with frustration, dismissals, and uncertainty due to their incompetence and/or unwillingness to simply do their jobs.
You are in good (or unhappy, but understanding) company with us as too many of us have been where you are! I wish you the very best :-)

Peace and Blessings
Namaste
Saysusie

Angel Oliver
01-28-2011, 05:57 AM
Serand,

Yes is the answer! In November i got like a head cold.A week later i got a chest infection. A week later i got pleurisy hit bad Christmas Eve,wheezing around like a erm wheezer lol.Thought it had gone when yesterday told its still there,left lung especially at night fills up and sounds like a motor running,hurts like hell,yet to ease the pain i have to lie on the bad side.No sleep til early in the morning when that bird sit outside my window telling me stories in song lol.I too wear a patch unsure if its the same,to ease the rusty joints and jaw .
I am sorry to hear how bad you are and going through but many here are the same,you are not alone.I too watch telly.Found Family Guy to actually put that crease in my face to actually smile lol,Stewie is my favorite lol.
Hope today is a good day for you and hope your back eases up soon.Just rest and know people here understand how bad it gets.

Lots of gentle hugs
Amanda.xxxxx

SandyR
01-28-2011, 08:03 AM
Yes! I have cycles that seem to be running every 3 months right now. I was pretty sick most of December and based on the pattern April won't be fun. I also have a lot of lung issues, but I have Sarcoidosis. Have you ever been to the pulmonary doc for your issues? Did they ever run a chest CT for them? I know from my Sarc friends that there can be an overlap of the 2 diseases (which I've always suspected was my case).

serand4
01-28-2011, 05:19 PM
You can't imagine how much you guys help me! No matter how much I read about the disease, there's so much I don't "get". I'm definitely sorry that you all go through the same things. It just wears a person out!! But today was a good day (two in a row - hurray!) so I was able to get some much-needed errands done and get my son the food he likes - we were running really low! It was a beautiful day with lots of sun and mild temps but I had to laugh when the instant I looked in my car's rearview mirror and noted that my mylar rash wasn't as thrilled with the sun. It's back to the 80 sunblock!

My chest hurts like crazy today. All the way from front and center to the middle of my back. I'm still not sure if I need to see a cardiologist or if it's just more lung issues. And there's that one thing that makes the bone hurt between your lungs common with Lupus. Isn't it all just a crap-shoot?

But thank you all for your comments. Like I said, I'm still learning and I still say this is the best info site!

kim,l
01-28-2011, 05:57 PM
yes this illness is chronic and we are always cycling from one illness to another some are short some are long i find winter is hell for my lungs and chest and the heat is destructive with my pain and fatigue and stress just wipes me out we all know how you feel and i am sorry you are are feeling so bad right now many many hugs kim l