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View Full Version : I just need to vent. PART II



Cami
03-21-2008, 08:21 PM
I posted the thread "I just need to vent." in January and I received such tremendous support which translated into mental relief for me. I hope you will indulge/forgive me for another venting post.

I had a follow up visit with my rheumatologist last week. All of the results are in from my tests. She tells me that I have a lot going on.

She told me that I have advanced arthritis in my lower spine, also where the spine joins my pelvis and in my hips.

Then she talked with me about managing the pain from the arthritis. I looked at her and told her that I feel great! The symptoms which she is describing are my everyday aches and pains and I can deal with them, no problem. But the symptoms that I came to her with in January were debilitating. At that time I felt like I was just waiting to die. THOSE symptoms are gone now. But I know they will return, they have before. I saw my doctor's body physically jolt when she heard me say this. I think she heard me.

I told her that one night in February I awakened because something seemed odd. I realized the pain was gone, it was just gone. It was wonderful, I rolled over and over in bed just because I could! I told her that since then my hair has stopped falling out. The sores in my nose are gone. And the fatigue, oh my goodness, the fatigue is gone.

She told me that my blood tests did not indicate Lupus, but my symptoms certainly sound like it. Then she told me that she believed what I was telling her and that we are going to make a game plan because she sees that I have these reoccuring symptoms usually during a 4 month period in the winter (sometimes, but more rarely at other times). I could have hugged her. I'm not sure what the plan is but I have an appointment 2 months prior to my usual bad months to begin the strategy.

She said that she does not want to label me with Lupus unless there is proof positive. She told me that the label of a disease can affect health insurance, life insurance, etc.

OK, so I thought I could do without a diagnosis. But I find myself hunting for information. Studying and reading, trying to learn more and trying to identify with something, with somebody.

And now I have questions. If anyone can address some or all, I would really appreciate the feedback.

Does the malar rash only appear on the cheeks and across the bridge of the nose? I sometimes have a little bit of the same rash on my chin and between my eyebrows. But it is always on my cheeks and across my nose, sometimes worse than others times.

I always get cold sores on my lips which sometimes extend into my nose from sun exposure. Could these sores be associated with Lupus? I have never associated any of my other symptoms with sun exposure, but then, I have not paid attention to this.

Is it possible for the flu to affect somebody with Lupus for longer periods of time and with an increase of intensity?

I'm editing this post to ask a couple more questions.

Can Lupus go into remission for decades, like 35 years?

Can menopause affect or even trigger Lupus?

Thank you for hearing me out again.

sits_inthe_corner
03-22-2008, 02:15 AM
cami

In the Forum index portion of this site there is an area called lupus web links. Owula has a post in there about the rash. Brace yourself there are photos of the rash. I took a look and found the one similar to what I have been getting. But that could answer your question. These rashes are sever and are the full example of what these can manafest as.

So far I have not had full break out like they show in those pics. But enough that I do recognize the rash.

I'm glad you doctor is finally hearing you. As for the arthritis no matter what the cause of the arthritis ... it does need to be treated. It will just get worse. So if your doctor is recommending medication for this as long as she realizes that lupus may be involved as well....you should take the medication.

About arthritis medication....a word of advice...be patient. There are alot of drugs out there for different types of arthritis....most of them take a few weeks to build up in the system. And most of them wont work for you hahahahaha....oh the joy.

Having said that....give the medication the recommended amouth of time...if it doesn't kick in, go back to the doctor...she'll be expecting you LOL and tell her if it's not working so she can take the next step.

I tried 4 different medications before I found the one that works the best for me. I was depressed when the first one didn't work and even worse when the second one failed...untill my doctor told me what I just told you.

It takes time....but it's worth it. And if ignored....you'll pay the price. So follow your doctor's advice.

Soft hugssss
Glucosamine and omega 3 fish oil vitamin D and calcium should now become part of your daily routine ... if it's not already :)

K I'm going to stop nagging now :)

Soft hugs

Cami
03-22-2008, 06:59 AM
sits inthe corner,

I looked at the links that Owula posted to the various rashes, oh my goodness. My heart goes out to those who are suffering.

I was able to identify with some of the images. I have to admit though, I see images of rosacea and malar rashes that look very similar.

I made an appointment with a dermatologist but was seen by the assistant, which leaves me with doubts. She identified my rash as rosecea. My rash is responding to treatment so I am not unhappy with the results. It is much quieter than it used to be with less frequent flare ups. But it is always present, that rash on both cheeks and across the bridge of my nose especially after I shower. Will a malar rash responds to treatment?

Sometimes I feel like I am just looking for trouble. But then, I don't think I am, I just want answers. It's very frustrating. I have so many symptoms, it's like playing dot to dot. I don't want to miss any of the dots or the picture will not be complete.

My husband actually got mad at me last night when he saw me reading and posting on this site. He insists that I do not have Lupus. I know that he doesn't want me to have Lupus. His translation on what the doctor tells me and my translation on what the doctor tells me are at about a 180 degree angle. It's not that I want to have Lupus, believe me, I don't. He manages not to hear some of what the doctor says. He just thinks I need more exercise. But I can't ignore what is happening to me. I just want answers that I might never get, I don't know. Sometimes I wonder if I'm just crazy.

I'm editing this post because I forgot to mention that I found answers to my flu question in another thread on this site.
Lupus Erythematosus Symptoms/Lupus and the Flu.
Thanks!

sits_inthe_corner
03-22-2008, 12:01 PM
Hi cami

One of the rashes I'm dealing with is rosecea. It's on my face. Across my cheeks, my nose, my chin, and even up to my forehead. Its very visable after a shower. Never ever throw out the cream .... you will need it again and again. It keeps things under control but it will come back. It will always come back. BUT if you dab a bit of the cream on when you see the small wee spots...they fade off before they become a nightmare. I had to convince my doctor to give me the medication for rosecea, she suffered under the delusion that only alcoholics got rosecea! She knows better now.

The malar rash was on my arm....it was just starting and my doctor took the whole thing for a biopsy...so far it has not reappeard there or anywhere else. It tested possitive. So I cant answer about the treatment for it, but I'm sure others here can.

As for this site. Well...I'm not fully diagnosed...and who knows maybe I dont have lupus...I'ld be very surprised if I dont but ya never know. The folks on this site are dealing with alot of the same issues I'm dealing with and they are gracious enough to allow me to hang out with them. So I either my family can listen to my endless questions and worries or they can hush up and let me spend a few minutes a day surfing this site :)

Then I can hang out with my family and every one is happy snappy :) My feelings have been hurt many times by family and friends who do not understand what it's like to be me. The only person who truely gets it is my sister. But we have always just accepted each other and have never placed demands on the other. We are just there for support. She has a good heart.

Others are always wondering what's in for them. Or expect me to just carry on as I always have. For the most part I do...but there are days or moments when I just need to stop and regroup. You do what you have to do.

This has been going on long enough and I have stopped trying to hide the physical signs of what is happening to me. So for the most part they are starting to realize that there is something wrong. Well DUH! lol

-make sure you meet your own needs or you wont be able to be there for others.
-keep busy, keep moving...move it or lose it as they say and they are quite right.
-practice saying "Let me think about that and I'll get back to you" STOP saying yes right away....give your self some time to think about whether you really have the time and the energy to help others out or do favors.
-eat well, rest well, and move your body :lol:
-get your but into the doctor's with your concerns and dont give up till ya get the answers you need :)

I love my family dearly...but I'm the one who know's best what I need and one of the things I need is the comfort and support of this site :)

mnjodette
03-22-2008, 07:00 PM
Great questions, Cami!

I get a rash in the usual spot (across cheeks and nose) but have never had a biopsy on it. I also get the rash across my check (like I had on a v-neck shirt and got sunburned.)

The sun is often the 'enemy' and can cause sores (like cold sores) or can aggrevate other lupus symptoms for many of us. Not everyone has the classic definition of 'photosensitivity' but most of us experience some negative response to a lot of sun exposure. Long sleeves, hats, high SPF sunblock - and shade!

I've read about people who go into remission for years and years. However, I also read (on the Lupus Foundation of America website) that only about 5% of lupus patients go into long-term remission. My understanding is that it's generally an 'ebb and flow' kind of thing. It flares, it's quiet; then it flares again...all in varying degrees. My rheumy describes it that way, too.

There is some research about hormones and their relationship to lupus - but I'm no expert. I'm sure there's info out there. Maybe when Saysusie gets back from vacation, she can answer the one about menopause and lupus.

Glad you're doing your own research....it's good to be informed!

sick n tired
03-23-2008, 12:34 PM
Hey Cami,

I'm not sure it menopause can actually trigger Lupus, but any great change seems to sometimes trigger a flare. I guess it is just the hormones acting up.

I hope the flu symptoms are better, today.

Keep Warm,

Karen

Cami
03-26-2008, 05:59 AM
Thank you mnjodette, sick n tired and sits in the corner, for your responses and concerns. My flu symptoms are mostly gone and I am feeling better. That was quite a bout with illness for sure.

I appreciate the information which has been offered. It's helpful to hear other's experiences and thoughts.

I'm thinking there just might not be answers to some of my questions. I've been researching but I am not finding the answers either.

I had constrictive pericarditis when I was 16 years old, resulting in surgery and the removal of my pericardium. I recently had a neurologist suggest that perhaps that incident is related to my current Lupus-like symptoms. If that is the case, I will have been in remission for 30 years. I have a work associate who tells me that his sister was diagnosed with Lupus at age 16, she is now in her early fifties and has been in remission since she was a teenager. Is this really possible?

At the onset of perimenopause/menopause my life changed. I no longer know my body. Some of the symptoms of menopause parallel Lupus symptoms. I assumed that everything which was happening to me was related to menopause until doctor's started using the word Lupus.

I really wish I could settle my mind and be ok with no diagnosis.

sick n tired
03-26-2008, 09:23 PM
Hey Cami,

I thought that it was menopause or at least peri, also. That is the only reason that I list 11 years ago. I had and emergency partial hysterectomy and was never the same. Some of that is because I lost a son that year too. (1997=very bad year) You could say I was never the same again.

Anywho....I thought the problems that I was having was hormonal. went from dr to dr to have them test my hormones and thyroid. All kept telling me that I was fine and then in the same breath they would say "here take this antidepressant". Like I made it all up.

I can understand your frustration. On my part, I never thought of Lupus. I was very shocked when a new dr tested me for about everything and the ana and hep came up positive.

Karen

Cami
03-29-2008, 11:24 AM
I love Robert Frost.

Thanks Karen.

sick n tired
03-29-2008, 07:34 PM
Hey Cami,

Yeah, Robert Frost is one of my favorite poets and "Stopping By Woods on a Snowy Evening" is my all time favorite poem.

There are many truisms.

I hope that today was better than yesterday for you.

Take care,

Karen