View Full Version : New Comer

02-15-2009, 08:00 AM
Hello, I found your wonderful forum while searching online for a support group and I must say I am excited to become part of it. I guess i need to start off with the history of my dreaded disease and how I got here. Up until the year 2000, my health was great, that all changed in 2000 when I was 30 years old. I developed pnemonia and was hospitalized. I had developed a respiratory infection, it was going around that the doctor said progressed to the pnemonia. After that I developed pnemonia again in the same lung a year later in 2001, this time the doctor ran a slew of test to figure out what was going on. A Ct revealed a mass that the doctor suspected could be a tumor. He sent me to a pulmonary specialist, who told me that it was a foreign object that needed to be removed by bronchoscopy. After removing it, the doctor couldn't tell me exactly what it was except that it wasn't a tumor or cancer. My husband jokes that I was abducted by aliens who implanted it there!!! Then in 2003, I developed a blood clot in my lower right calf. The doctor asked if I had any recent trauma and I did have a bike pedal plow me in the calf (which I couldn't remember which one, but assumed it was the right one), so he chalked it up to that. After one year passed in 2004, I got ANOTHER clot in the same leg, the doctor ran a slew of test because he suspected cancer. When the results came back, he said he suspected I had SLE and anticardiolipin antibodies, but needed to see a rheumatologist to confirm it. the Rhemmie he sent me to was an idiot and said he didn't believe i had SLE, he wouldn't listen to me, so I gave up and didn't go back to him. I stayed on the coumadin that the admitting doctor gave me because of the anticardiolipin disorder and just was in denial about the suspected SLE. Shortly after this, I started developing joint pain and fatigue and muscle soreness. After a couple of years of dealing with this and it getting worse, I decided to find another Rheumie to go see in 2007. She told me the same thing, I don't think you have this, but I want to run test, unlike the other doctor who didn't even suggest this. So when the test came back, she was really surprised, but said, "Yes, you have SLE." My WBC was low 3.0 and my ANA was 277! The sjogrens Ab, Anti-SS-A was high as well at 277. So she told me that she would mointor me and see me in 6 months, but that she didn't think I needed meds at the time. Well, I didn't go back like I was supposed to, once again, I was in denial and thought I could just deal with it on my own, besides, I thought it must not be that bad if she didn't put me on any meds. But it did get worse since then. My joint pain is so bad and I have been in a constant flare for the last year. I can only remember the days I have felt good as a few. I am tired all the time and my muscles are sore along with the joint pain, and I have chest pain and often I get sore throats, everything feels inflamed. I can visibly see the swelling and redness in my joints especially my fingers, ankles and knees. So I decided it was time to stop being stubborn and face reality and return to her about 2 weeks ago. She put me on Plaqueil and prednisone and so far i feel alot better. I am so scared about all of the possible side effects though of the medications, and hope that i can take it. The depression I have experienced as a result of living with this chronic illness is really bad. I used to be such a outgoing fun person, and now I am basically a recluse and don't want to be around anyone. This is hard for my husband as well. I work full time and the doctor told me that I could consider disability. I don't want to be disabled,are any of you members on disability because of this? She says that if I am ready to be compliant with her then she thinks she can get me better. My faith in GOD is what is helping me through this. My husband has gotten better about supporting me now, that he understands my illness. At first, I think he thought I was just wanting attention or faking it. I hope one day they will find a cure for this horrible illness. I am really scared about the future and what it holds. Will I get organ involvement? I go back to see my rheummie in a couple of weeks to get results from last testing done 2 weeks ago. In the meantime, I will keep the faith and enjoy the feeling better part. I look forward to being part of your group! Thanks so much!

02-15-2009, 11:44 AM
Welcome! I am a relative newcomer who isn't dx yet, but I do have the APS for certain.

Your denial sounds so familiar to me, as well as many others on here I am sure. I too, have blown off MDs and sort of avoided the Lupus DX, and funny because my whole agenda of going to a specialist next week is to get him to rule it out I realized!

There is lots of information, support and most of all a ton of understanding here on this board. It has helped me so much already!

I try to tell friends, but they just don't understand.... Here everyone understands, and understands about others not understanding!

I hope the meds keep kicking in and improving your health!

02-15-2009, 12:35 PM
I hope everything goes good with your specialist appointment and he tells you that you don't really have lupus. That would be great for you.

Being in denial doesn't stop the reality of it, as I have come to realize. I really don't think that ANYONE fully understands what we go through except us. I am learning to deal with my illness now instead of denying it.

It will be very helpful to talk to all of you in this process. Thanks for the encouragement!

Talk to you soon,

02-15-2009, 12:45 PM
Hi JennM..

Welcome to the forum...I'm glad you decided to join us. :)

What a long, rough road you've had the last few years. You've really been through it. I'm sorry you've had so much to deal with. The pain and suffering part is absolutely no fun. And the denial and fear is very normal to experience. I'm willing to bet everybody has gone through that when they first find out about a diagnosis of Lupus. I remember wanting to just not believe it, so I kept on doing all the things I had always done. I kept going out in the sun and stressing myself out trying to do too much, burning the candle at both ends. I did all the wrong things and kept making my more and more sick.

This definitely takes some time to learn about Lupus and learn how to live with it. It doesn't come all at once...you have to take it one day at a time. If you don't, you can easily get extremely overwhelmed. One of the best places to start is to educate yourself as much as you can about the disease. I'm not saying go out and read everything you can about it...that can sometimes be too much information all at once, and can sometimes just cause you to worry more. A good place to start would be to look in one of our forums, 'Lauri's Lounge', I think. You'll find a 'Sticky post' that has been posted by one of our members, Oluwa. I believe it's called 'Homecare 101'. It has great information about some of the things you need to do to take care of yourself with this illness, and how to be a good advocate for yourself. Actually, there are several 'sticky posts' that are really good information for someone new to Lupus, you should look through all of them.

Another very important step is finding a good doctor that you can team up with to follow the course of your illness and figure out what treatment or treatments will work best for you and your body. It sounds like you've already found one that is working with you. Make sure you keep your appointments. That is crucial! It's really important to stay on top of this disease. This is a tough illness because every single person's case is different...we all have some of the same general symptoms, like the joint pains and fatigue, but we each have our story of the other things that we've experienced. It's easy to get overwhelmed with this disease, and worry about the 'what if's'. We've all done it. But if you try to take things one day at a time, just taking care of that day, and try not to worry about what's next, you're going to be treating your body and your mind to a lot less stress.

The loneliness part is another thing we all experience...the part about feeling left out because we aren't fun anymore and we're sick all the time. That, too, is normal. It is life changing to go from being a fun, outgoing person with friends and a social life, to the complete opposite. I'm sorry you're having to go through that. You've found a place though, in this forum, where we all understand your feelings and we're willing to listen and support you, as well as share our experiences. You don't have to feel so alone...there's always someone here to listen. And sometimes it helps to just let it out and vent or cry, or throw your hands up and say I can't do this alone.

I'm glad your husband is trying to be a good support for you. That can be huge. Not all of us have family or friends that are willing to do that. You should help your husband to learn to understand this disease right along with you. There's a forum on here for family and friends of Lupus patients. You might mention it to him.

Lastly, in answer to your disability question....yes, I am on Social Security Disability. I fought it very hard in the beginning, but eventually couldn't work, so it became a much needed resource for me. However, just because you go on disability, doesn't mean it will be permanent. I was on it for the first few years after my diagnosis (at age 18), and then was able to go back to work full time for about 8 or 9 years. I was transitioned off of the disability for a one or two year period to see if I was able to work. Then later, down the road, when I wasn't able to work because I needed my hips replaced, I went back on Social Security. I am now a stay-at-home mom of 2, and find that it works very well for me at this time.

JennM, I hope I've provided a little help for you. I have to tell you my heart breaks every time I read a post like yours. It takes me back to exactly what I went through 27 years ago. All the same feelings, the fear, the frustration, the deep loneliness and feeling that know one understands what I'm going through. I didn't have a forum like this to go to back then, so it was even more lonely. There was no internet and not really any way to connect with others that had Lupus too. My heart goes out to you, and I wanted to share some hope with you, so you don't feel so alone.

Please know that I care, and I'm sending you gentle hugs of comfort, from someone who truly understands.

Please keep posting and letting us know how things go.


Lori :)

02-15-2009, 01:08 PM
Gosh, I really appreciate your kind words and words of encouragement! You made me cry! I seem to be crying alot lately. I hate that, but can't seem to help it. I am going to take better care of myself I promise. My job is very stressful as a Asst. Administrator for a hospital. Basically I babysit adults and it isn't fun. My Rheummie says I need to get stress down in my life and unfortunately, my job is the biggest part of the stress. I want to start exercising like she suggested, but I know this will be a very hard thing for me, since sometimes I can barely walk normal. I used to mountain bike and was very active, now 25 pounds later I haven't done a thing. I have an elliptical trainer that my husband and I use as a coat rack, maybe it is time to get it dusted off and start using it. I stayed up half the night reading the board and now I am so exhausted, I need to go to bed, but know that I will be up again at 2am and I have to work tommorrow. I just started taking the predisone about 2 weeks ago, and it is affecting my sleep. I see another doctor for the management of my coumadin for the anticardilipin sydrome and he informed me that I would gain weight and not be able to sleep.
Great I said, then he prescribed Ambien CR, which I haven't filled yet. I can see that I am only taking a few drugs now compared to some of the people on here. I am taking 9mg of coumadin, 400mg of Plaquenil, and 15mg of predisone so far. Anyway, once again, thanks so much for your support it means the world to me.

02-15-2009, 02:45 PM
Your welcome, JennM...glad I helped even a little. :)

You go get some rest. The prednisone will mess with your sleep, so grab any rest that you can when you're able.

I just wanted to share that you made me giggle reading about your 'coat rack'. Very funny. When you do start any exercise, just make sure you take it very, very easy. Even some very light stretching and breathing exercise at first. That's sometimes a good place to start. It can help with your circulation and joints and muscles. Be really careful though, you don't want to overdue, or you'll end up paying for it the next day.

I completely understand the work stress thing, my husband 'babysits' adults on his job, too. Not fun! Wish everyone could just grow up and work together for a change. :)

Jenn...I hope your meds continue to help you and that there will be some good days ahead for you.

Rest well so you can tackle tomorrow....

Lori :)

02-16-2009, 12:59 PM
You've already met and been welcomed by some of our members and seen how understanding and compassionate this family is.
I am sorry that you are suffering so much right now. But, I agree with your doctor. If you follow her instructions, make appropriate lifestyle changes, take all of your medications as prescribed, then it might be possible for you to manage this disease and maintain some form of a reasonably normal life. At best, you might even be able to achieve a state of remission. But, you have to be diligent in all of the above if you ever hope to do so.

The denial that you experiences is so familiar to all of us. No one wants to have a chronic illness that could affect every single part of our bodies. But, we are here to help you manage you Lupus, to provide you with answers and information, to help you whenever you need it and, especially, to let you know that you are not alone.

Once again.....Welcome
Peace and Blessings

02-16-2009, 02:30 PM
hi jenM

welcome to the group. Rastagirl provided a tremendous amount of "great information". I think we all agree that we must team with our drs. to best battle this disease. It is important to have a dr. that you trust.....You are your "best advocate". There is nothing wrong with changing drs. if you don't feel there is a click with him/her. You are not to blame if you must change drs. Hopefully your new rheumy will be wonderful, but if not, do not hesitate to search for another.

I agree with Lori (rastagirl) it breaks my heart each time I hear these stories....I was in such a lonely place before I found this group.

Welcome, and keep us informed, we all love to provide our support.

share a smile today,