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Posted 10/29/2008 1:51 PM (GMT 0)
Hi, everyone

I'm really struggling today.  I told my husband this morning.  "It hurts to pee.  It hurts to poop. My heart flutters all day long.  My leg muscles are weak.  I get nauseated every day of my life.  I take Darvocet just to sleep at night.  I'm so tired all the time even though I take all the Plaquenil and prednisone I'm supposed to.  The thought of exercising is laughable when  it takes Herculean effort just to go to work every day."

I'm not sick like people with organ involvement.  I'm not sick like my friend with breast cancer.  I don't have the lymphoma they first suspected.  But....I sure don't feel great either.  I wore a heart monitor two days last week and hope to hear from my pcp soon.  He also did bloodwork.  I'm fairly certain I'm anemic, but my pharmacist said iron pills would negate my steroids.  I had a hard time taking iron two hours before or after prednisone, so I quit.

I'm a teacher who can't give to my students what they deserve.  I'm seriously wishing I could quit and make way for someone healthier to come in here and do a better job.  I need the money to pay for own kids' tuition.  I don't take sick days unless I have a dr appt.  I feel like I'm drowning.

Sorry to dump on you guys.  I guess I'm just looking for encouragement.  I'm chugging cranberry juice all day today...hoping I can get to the bathroom in between music classes.

Posted 10/29/2008 1:59 PM (GMT 0)
Hello. I am so sorry to hear that things are so rough for you right now. Your description sounds so much like me - EXCEPT - I don't have to teach children all day long. I have no idea where you get the energy.
Do you take an anti-anxiety? That helps with the overall tired feeling. Also, I noticed dramatic improvement once my allergist started me on Ambien CR. He insisted I take it every night and the difference is amazing. I wake up refreshed and more ready to start the day than I ever was before!

Sending hugs and good thoughts your way. Hope you feel better, soon.
Posted 10/29/2008 4:13 PM (GMT 0)
Heartsong,
My heart goes out to you. I do have organ involvement, but to be perfectly honest with you, i've found the fatigue to be the debilitating thing. It's something that people just can't grasp until they've experienced it. I really know how you feel. I tried so hard, like many others here, to hold on to my job as long as I could, mostly out of desperation. I wish I had a magic cure or solution for you. I will be praying for you. Judy
Posted 11/1/2008 5:33 AM (GMT 0)
Heartsong, I feel for you and I know what you mean. the bladder pain I'm very familiar with and it helps to see a urologist. I had an infection (I always get one on pred) and I had polyps and some chronic autoimune bladder stuff that was mild. Changing to an Interstitial cystitis type diet (well, just following their restrictions on soy and oter foods and beverages) helped, even eliminated the problem most of the time once I treated the infection. Pooping, well, what I'd give to take a normal poop. I started drinking whey protein smoothies and I add bene fiber and probiotic yogurt, along with V8tropical juice and some frozen fruit and sweetener. I make double batch in one blender jarand water it down sine it is sweet. It has improved my health tremendously by giving me the vitamins and fiber and probiotics and protein that is digestable. It also gives me energy. Some protein powder formulas have extra b12 for energy.

I try to stay off prednisone as long as Ican because I know that while it gives me relief there is also the posibility I will get sick and become sicker if I am infected with an illness. There are some promising therapies like low dose Naltrexone that might be worth talking to your doc about while you are working, if yuo just get too worn out.

I'm looking at alternatives to steroids for many reasons, not he least of it is that I always get sick on them.

I wish you strength andgood health and a reasonable and effective disease treatment. Sometimes I wonder if the the steroids doin't help in the short term, but make things worse for me in the long term by allowing sme undiagnosed underlying illness that is ultimately responsible for many of my autoimmune problems to get worse and worse because I just keep going downhill despite the steroids. Thegood thing about plaq is that it has a disease fighting component to it as wellas an immunosuppressant.
Posted 11/1/2008 3:22 PM (GMT 0)
Hi Heartsong. I'm so sorry you have to go through this. Like Judy said, many of us here held on to our jobs long after we should have quit. Many of us are educated like you and had jobs that were at one time rewarding. I was diagnosed Oct 2005 and quit work August 2008. I worked at CDC. A few months after my diagnosis, my rheumy put me on methotrexate which was a great help, so you might consider taking it. During the last year at work, the methotrexate no longer worked. I never left my cube unless I had to and then I walked like a zombie. I kept working to support my daughter while she was in cullinary school. BTW, at my home I keep Imodium, Gas-x, and arthritis tylenol both upstairs and downstairs. I have prescription promethezine for nausea because I hate nausea. I know exactly how you feel Sweetie. Since you need to keep working, talk with your rheumy for alternative medications. I recently "discovered" acupuncture and it really helps with the pain. Please let us know how you're doing. (((Hugs))) Love, Butterflake   

Posted 11/1/2008 5:20 PM (GMT 0)
Hi Heartsong, I am sorry you are going through all this but glad you are reaching out for help and support, that is very important especially with a disease like lupus, ra, etc.

I have organ involvement, my intestinal tract. My rheumy put me on Imuran in 2005 and I could tell a difference right away,it helped all the symptoms that I had for over 2 years, but we have also had to increase my dose. I stated in 2005 in 50mg (1 tab) now I am up to 2 1/2 tabs 125mg. The very first med I was put on in 2004 before I actually got my dx in 2005 was Plaq and as the years have gone on we have added more and more, most recently Methotrexate for my horrible joint pain. I also have to take Flexerill every night which helps me sleep and wake with minimal morning stiffness.

It may be time to add more meds to control your disease. I know none of us want to take these meds but I know from experience if one it taken away I feel it and the pain is 100x magnified. All my meds allow me to function each day and hold down a 32 hour a week job and keep up with my daughter that takes Tae Kown Do.

I hope you find some relief soon, take care and God bless you.
Posted 11/3/2008 6:10 PM (GMT 0)

Thank you so much for your encouragement.  My latest bloodwork reveals that I now have something called a low glomerular filtration rate.  It's a 78.  Normal is 90.  Evidently my kidneys aren't working well.  I don't see my rhemy until January, but I'm thinking my pcp's bloodwork results may warrant an earlier visit.

I may ask him about the methotrexate.  I want to quit work so badly, but I cannot do that to my sweet husband.  He has been fabulous throughout everything.  He does housework, laundry, shopping, whatever needs to be done.  He never complains.  He says, "That's what love does."  I am so blessed.  As tired as I am all the time, I just can't saddle him with the entire financial burden for our family.  I'm sure that I'm not sick enough for SSDI.  I feel weird about that, too. 

In an ideal world, I would get to stay at home, go to the doctor whenever I need to, rest when I need to, and eat and drink all the weird stuff I need in order to make my plumbing work.  It's SO hard to drink enough when you're a teacher.  You just can't go to the bathroom whenever nature calls.  EVERYTHING is carefully scheduled. 

Posted 11/3/2008 11:15 PM (GMT 0)
Hi Heartsong.....I do not have organ involvement but am in your shoes with many other symtoms.

I was working full time as well. After being dx with lupus, I was then dx with lyme so my head was spinning. I finally had to leave work last nov for 3 months, then went back. Then had to leave again in June. I'm still on work disability
Can you get disability through work or take some time off unpaid to get well?

I live alone and have no other income so I know how tough it is, but it's important to take time off to heal.
I don't take any meds but made a routine for myself that has helped and I'm about 95% functional now. I could not have done this had I still worked daily.

As for being anemic. The best way to get absorable iron is with food anyway. Iron suppliments are not safe. Do you have a healthy diet?
Posted 11/4/2008 2:19 PM (GMT 0)
You guys are great.  It really does help to have someone out there who understands.

My pcp gave me antibiotics and an analgesic for my UTI yesterday.  He also told me that my heart monitor confirmed frequent premature ventricular contractions of my heart.  He ordered an echocardiogram that will be done Monday. 

I am pondering the idea of a leave of absence from work, but I am a music teacher (elementary music, middle school and high school band).  It's a strange combination and hard to find people to sub for me, much less handle an extended leave of absence. 

There are many days I think I should just rally and get over it and force myself to walk on the treadmill when I get home, force myself to do more around the house.  I hear about other people with lupus who go to the gym after work every day or manage the disease with no meds.  I just can't imagine it.

Posted 11/4/2008 4:57 PM (GMT 0)
HeartSong, everyone is different in how they respond to treatment. Don't be so hard on yourself

You can force yourself once you've got your body stronger. I now work out (I'm doing a fitness challenge actually) 4 days a week and do not take any meds, but it took me some time to get here.

I thought like you in that I wanted to continue working and work out after work, well one day I fainted while on the highway driving and I knew it was time.
I made myself much sicker by pushing. Maybe it's time to consider a leave to care for yourself.
Posted 11/4/2008 5:00 PM (GMT 0)
Hi Heartsong,

 

Wishing you well at your Echo today.  Listen to your instincts. If you think taking a leave from work is necessary, then do it. I learned the hard way and didn't listen to my body.  Now I'm paying for it. Be good to you ((((hugs)))).

 

Blessings,

Ginny

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