View Full Version : Need to vent...
05-11-2009, 11:13 AM
So, this whole weekend, I've felt so-so. Yesterday it hit the fan for me. Really spinny head and oh, so, so tired. This morning I decided to go in to see my primary. Why, I don't know...a need to do something I guess..when I miss work, I like to feel proactive like I'm doing something. I've been dealing with something pretty significant for 6 months now and a flare that dates back to last June. I feel like I having really "done" anything but grin and bear it this whole time (sure, went to docs, but to no avail...I might as well not have gone).
What's the hardest for me is the strain I see it putting on my family and in particular my wife. It makes me really sad, because she, along with my children, are everything to me. But I can tell that my not being myself is wearing her down. Then there is my job. I think I read on here some where that with work, you fake it until you make it....or something like that. Some days are easier than other...the last few have not been one of them.
So after sleeping forever last night, I get up this morning and call into work and go to the doctor...hoping to find something...anything. What do I get? Not much. Asked when I went to see my Rheumo. Ran a couple nothing tests. Asked about my emotional health because I teared up when she asked about my family and my job. Up to this point, the only two test that are off, with any signicance is my ANA is positve and my Anti DNA test is in the 20's with under 5 being normal. Dating back to the first 5 years I dealt with this, pre lupus diagnosis, all my tests looked good then too. Until my kidney's started failing. Of course they called it vasculitis then, not lupus, it would be another 10 years before they got the Lupus figured out. Anyway, the doctor is reluctantly considering putting me on Imuran. Worked wonders for me the last time.
But they fill me with doubts. Is it just mental health (although I think not). Apparently being depressed gives you all the symptoms of lupus. Is it an antibiotic (Levaquin) that I took back in November (that's when things got really bad and some believe that drug can do it...oddly enough, similar symptoms to Lupus). I feel like I need to take the Imuran to save my marriage, my life. But what if I"m wrong...sigh.
So, this is the battle in my life and I feel very alone in this battle...
05-11-2009, 01:22 PM
Oh i feel for you and sending you massive hugs. Have you actually spoken to your wife....let her know your feelings? Has she spoke to you....her feelings and worries? She loves you dearly i bet and is probably scared for you,worried for you. You are going through so much at once.....its cruel. Im not sure about the meds,but im sure someone will come along soon and help you out. Listen....you mention there depression can give symptoms of Lupus....well..i was told i had Lupus...then after bloods were done they said ive not. I suffer horrible depression with severe anxiety.To the point i sometimes dont leave the house for months.I tried to fake it at work,but i had no choice when i started hearing voices...due to severe insomnia...i had to stop working.
I understand the massive issues you are dealing with here,you have to work to get money,be well for the family.BUT if you are too depressed....just maybe you are thinking all the worst as you are so overwhelmed with all these things in your life are going on.....i hope this is the case. Im sure if you wife wasnt happy....would she still be there?
Hope you begin to feel better soon,get answers,help,support.You try and hang in a bit longer.You dont know what tomorrow will bring.Everyones luck in life and health does change for the better at some point....hope yours is on its way.
05-11-2009, 02:08 PM
Have you talked with your family, your wife about your sadness and what you see in them. Maybe the wear you see in them is empathy?
When we feel we are alone it can create depression. Our pain, our symptoms causes depression too. I would be surprised if anyone of us didn't feel depression. It sucks having it..the unknown, feeling we have no control..wanting things the way they were and they aren't...
I believe it is our symptoms that cause depression and not really the other way around. Gosh, who wouldn't be depressed...we change our lives, the constant dribble sick, sick is always roaming in our minds. Wanting to do and can't...
Then the depression increases all of our symptoms more...they grow with every saddening thought, with every motion our bodies take in pain...
It can be maddening because we seem to never be able to get a foot hold on it.
Maybe take the Imuran, maybe it can take you out of this flare..get your thoughts on track and see how it goes from there and maybe weam off of it..
Choosing wellness now and possible secondary sickness later is a tough one. Me, maybe I would opt for the Imuran. And ensure you have your blood monitor regularly.
Why did you come off it the last time? felt better? What happened when you stopped?
Have you spoke with your wife about your feelings about the medicine choices
What about Cellcept or MTX....? Cellcept has fewer short term side effects...
I found when I brought my mind to a calm and accept the fact I have this disease and not fought with it in my mind. A fight between Lupus and I....it decreased the stress and so did my symptoms decrease to being more manageable. I resigned to the fact, this is what I need to do..sleep if I must, takes pain pills if I must...showers to ease the pain if I must. I just try to envision myself caring for someone, me...
I find if I am open to my vulnerability and express my pain, my sad thoughts it also brings about a calm...well, not while in it but the hours that follow the good cry. Crying for ourselves, sharing that with our spouses does cleanse the mind....
How is your sleep..do you sleep sound, through the night? Seven hours straight? Have you been examined for Fibromyalgia?
How is your diet? Fresh, no processed foods. Have you had your iron levels tested? I started taking 65mg or iron on my own and I feel so much better. Took a ton of the fatigue away...the lethargic turd feeling.
Times when tests are on the high end of the normal range and having an autoimmune disease could be to us as though it was positive.
Like iron, a pinch over or just under could mean just the same to a healthy person who is yards over and would require intervention too. So have a look at that? Maybe supplement with a prescription Deplin...http://www.deplin.com/ I do...between tweaking my mental relationship with my diseases, the iron, the Deplin something is working.
I can't recall if I mentioned this before....do you take prescription pain pills. For me they create behavioral changes..I feel bleak, blah, tired, malaise. Maybe this could be a contributor in you too, Larz...
Do you stretch...really it does help....try it while in the shower...or while laying in bed. Stretch high and then sideways...arms over the head....keeps the blood oxgenated...
Have you ever had an allergic reaction to antibiotics before, especailly ciprofloxacins..it says if one has had a reaction to quinolones, such as ciprofloxacins not to use Levaquin..also you know about sulfa based, tetracyline antibiotics can cexacerbate Lupus, eh?
Do talk to you wife...and share what has been plaquing your mind...
05-11-2009, 05:33 PM
Your depression, fear, exhaustion, is so understandable. You should talk to your wife. Let her know you are fighting through this (as I know you are), and that you appreciate everything she is doing for you. Maybe you could have family movie night, or pajama party weekend...everyone just hangs out together, watches movies, heats up casseroles in the oven so no one has to cook...spends time together just relaxing and being a family. This gives you some much needed rest and gets everyone else to slow down a bit and just enjoy each other's company. I think we spend a lot of time feeling guilty for the things we just don't feel like doing anymore. That creates stress, which only exacerbates our flares. Then the depression ratchets up a notch...it's a cycle that we have to be creative in breaking. Give yourself permission to rest and do whatever it takes to be as healthy as you can today. If that means Imuran, so be it. Don't let those docs blame your physical symptoms on the depression alone...that's unfair to you and won't help you work through this. We are here for you.
By the way, on a lighter note...just how many arcade game championships do you need?????:)
05-11-2009, 07:08 PM
Your in my thoughts and prayers. I'm going though a lot of the same things right now. I go to the doctor tomorrow and hoping it won't be a waste of time.
05-12-2009, 02:12 PM
Just checking to see how things are with you, Larz? Hope the battle in your thoughts have lessened.
Wishing all good things for you...in your heart, body and mind.
05-13-2009, 11:35 AM
I found this read... http://www.antibiotics.org/resources/side-effects.pdf
I researched more on Levaquin today because my doctor was going to prescribe it to me today and I said noooooooo as I remembered your post and what little research I had done.
He reluctantly agreed, told me I shouldn't read the Internet...I said it must have been a sign, I read your post and he wanted to prescribe it two days later, eh. He laughed, I didn't. So instead he prescribed Biaxin, stomach killer though. ..My Protonix should be able to handle it...
It article states..Have you planned to take a quinolone antibiotic (cipro, levaquin, tequin, levofloxacin)
This drug is not recommended for those who have been diagnosed with autoimmune disorders, or if there is a suspicion
about one being present. It can cause conditions similar to, as well as worsen or release, autoimmune disorders like
multiple sclerosis, lupus erythematosus, rheumatoid arthritis, small vessel vasculitis, dermatomyositis, polymyositis and
The main symptoms of a quinolone poisoning resemble those of some autoimmune disorders because in acute intoxications they
cause a type of small vessel vasculitis with neurological dysfunction:
Many symptoms that resemble fibromyalgia, multiple sclerosis, lupus erythematosus, rheumatoid arthritis, reactive arthritis,
vasculitis, AIDS and other diseases.
and much more to read..check it out and use the find window and type Lupus on the PDF file....
Thanks for indirectly helping me, Larz...
05-14-2009, 03:49 AM
Just to say you are in my thoughts and i hope you are getting through life ok knowing we are all supporting you and thinking of you.I hope so.
05-15-2009, 09:28 AM
I am so glad that you found this information and posted it here for Larz. I hope that he comes back soon to read it and that it helps him!
Please know that you are in my thoughts and prayers. I cannot add to the information and advice that you've already been given. I just wanted you to know that we are always here for you!
Peace and Blessings
05-15-2009, 09:37 AM
Larz-you are not alone. I'm in a huge flare right now too. I'm so sorry you are going through this. Hope things get better.
Thoughts and prayers always.