[robinmik]

Hi everyone. I was just diagnosed with lupus this week. I was glad to find this message board because I have felt crazy, just like many others I have read.
I am having trouble with admitting something is wrong, because I have always been the strong one among my family and friends. Throughout my life, I have spent 6 years in the military and 10 years as a police officer. I am now an RN in an emergency room. As a woman, I have been proud to get over the hurdles of basic training, the police academy and an "action-packed" life. Now, I have a tough time putting on my jacket or taking a cap off of a bottle. I don't want pity, and I don't want to feel like I need help. Nevertheless, I am afraid I will never be myself again or do the things I am used to doing and that I like to do. I also don't want to tell anyone, even my closest friends, that I have something wrong with me.
After a couple of months of going for my blood to be drawn, I felt like I was in shock that they finally diagnosed me with lupus. Although I am a nurse, and I knew something was not right, I expected them to tell me I am just getting old! Ha!
My rheumatologist prescribed me Plaquenil, Mobic, and Wellbutrin. I guess I was hoping for a quick fix because I want to feel good again. Will I ever feel strong again??:worried:

 

[keebler]

Hi Robin,
Welcome to the forum.:welcome:
Finding out you have a chronic illness is a roller coaster ride of emotions. I went threw (still do) angry, denial, depressed and hoping my diagnose was wrong.

With the right mix of medications most people who suffer with lupus can lead a fairly normal life. We also need to learn to listen to our body. Lupus fatigue is a biggie.

There is no use pushing yourself to do things. You will only pay for it later. If I know that I need to do something that will take a lot of energy, I try to rest as much as I can before.

You have found the right place with caring members who will share their experiences with lupus. There is great information here. I learn all I can about lupus so when I go to the doctor I know what is going on. (I learn something new on the site all the time)

It takes time for meds to kick in. It is not a quick fix, I am sorry to say.

I hope you find the right mix of meds and you get to feeling better.

Take care,
Lyn

 

[Pink Pearl]

Hi Robin and welcome to the board.
Lyn is right, this board has people who have dealt with lupus for decades and those, like yourself, who are very new to the diagnosis.

Many medications with an extended half life, like plaquenil, take an equally long time to get a therapeutic level and to find benefit from it. While it is cliche', give it time. The inflammation didn't happen overnight, and relief won't either.
Hopefully you have a return appt scheduled with your doctor.

Something which has worked well for many of us is to take a list to the rheumatologist/doctor showing the gains, and the things which need to be discussed. When the brain goes "on vacation", it can be hard to remember everything we need to cover. A list helps. A symptom journal helps to keep track of things we are finding on a day to day basis. It also helps to give a marker of progress made with meds and just day to day living.

While at the beginning it seems a long, long road, in time, the road gets easier to travel. No quick fixes, but with time, it does improve.

As summer approaches, please remember that sun exposure can trigger a major flare. Even lightly sunny days, without sunscreen protection, can cause a symptom escallation. You will have to watch how it goes. No two cases are alike. Initially I could NOT be in the sun after 10 am til 4 to 5 pm. Now, 20 years later, I can be out there and just be careful if I start to feel the slightest "blip", I get for the shade. My old cedar trees are a godsend on sunny days. They let me be out there, but not have problems. This has only come on the last few years. Trust me, I savor it.

I remember when my hands got really bad with inflammation, I had to ask strangers at the gas station to unscrew the cap on my car as I could not take it off. Fortunately, that was on my old car, and this one has a much lighter touch cap. Don't feel bad, just ask for help. I told people that my arthritis was bad, and could they please help.... No one ever turned me down.
Sally

 

[x_claire_x]

HI Robin, I was diagnosed with MCTD last Nov and am still having a bit of difficulty getting my head round it..it takes time to adapt and time to alter your living habits to accommodate your health..infuriating!!:lol: It strikes me as quite significant the amount of people on here that describe themselves as the strong one for their family and friends, and the coping, very able types of personalities... may be Lupus and Lupus type illnesses go for this kind of busy busy type of person? just a thought! Anyway, don't feel bad about the diagnosis for too long, you need to remove stress as much as possible and that would include getting the support you now need from your loved ones.. I would be furious if my girlfriends didn't let me know they needed a bit more love and support and a little less being taken from them. I too am an (ex) nurse and have learnt a great deal since being ill. It is quite incredible some of the stories you hear on this forum, such a lovely bunch of helpful, informative people. Glad you have been started on some meds, the plaquinel can take months (up to a year) to kick in so time for patience and jotting stuff down. Be gentle with yourself and give yourself some time and space to find a better more comfortable place to be...I can now take the lid off a water bottle etc...whoopee, but it was frustrating when I couldn't, stirring sauces etc impossible, but now I can, so you will find a more settled place, hopefully soon. All the best.
Claire X

 

[LolaLola]

Dear Robin,
Many of us would agree that we were always the strong ones in our family, good people to have around in an emergency, mind like an encyclopaedia, knew everyone's shoe size, post code, wedding anniversary. There are many here who know how you feel.

It does improve but that is due to a combination of us adapting and getting the right medication. Little things like getting an electric tin opener, buying frozen veg. It all helps and no one is likely to comment on it. If you need specific advice with things you find difficult we will all share our tips with you. (I wish you had seen me struggling to drink a little bottle of juice yesterday, I thought I would need to take a hammer to it!)


Please think about making life a little easier at least in the short term.

Oh and of course a Big Welcome here.
x Lola

 

[Barb G]

Hi Robin,

Just wanted to let you know I understand how you feel. I battled sexism all of my life to carve out a career, then illness took my career away. It doesn't help that I have had what's considered a "female" illness either (I have been diagnosed with Fibromyalgia since 1991. The fact that I'm suffering from an autoimmune disease was discovered only recently.)

Because your disease was properly identified while you still have a career, it's possible that with treatment and some adjustments, your life as you know it may remain largely intact. Let others become stronger rather than relying on you so much and save your energy for taking care of yourself. Take the time you need to adjust to the changes in your life ...

Barb

 

[debatat]

Hello Robin,

I just wanted to say hi and that I understand how you feel. Diagnosis can be a huge rollercoaster as others have said. Acceptance takes time, and the adjustments we have to make can be hard to swallow. We are still the same person though and often others don't see us any differently, except that we now have an illness, if that makes sense. Once the meds have kicked in we can feel much better and things can improve, this is different for everyone. It can be frustating waiting for them to work. I hope that you start to feel better soon.

Take care

Deb

 

[Maia]

I just wanted to welcome you, and let you know that I do believe it is most definitely possible to get strong again. Furthermore, you may find yourself stronger in new and equally important ways as to what your strength was in the past.

Lupus can be a serious and disabling disease, but please realise that MANY people with lupus experience fantastic turnarounds with proper medication and live very full, very happy lives with minimal down time. Also keep in mind that those people don't tend to post on sites like this as they are out busy in their own lives with no need to post here So you will get a bit of a bias when you read the posts here... typically the people that post here are newly diagnosed, searching for a diagnosis, or currently having problems with their lupus.

Best wishes to you, and let us know if there is any way we can help as this must a difficult time for you. When I was diagnosed I was one of the quick dxs and it did come as a bit of a shock to me too. I held it together until I got to my car and promptly broke down there; I was scared. I did manage to work a few more years and complete my PhD while working full time... but then something changed for me and I'm unable to work at this point. I still hold out hope though - I have to!

 

[spellbinder]

greetings and salutations

:wavesmile:...well i can't add anything more than whats been said, i just popped in to welcome you to our sandbox....


:welcome:

hugs and kisses

 

[onetay]

Robin,
Hi and welcome to the site. It is wonderful that you have done so much so far. I don't want to say that you will never feel well again but you will not be able to feel the way you did before all of this. You will have to find a new normal for you. I understand your not wanting pity but help is sometimes nice. It took me a very long time to admit that I did need help and that people were willing to help not from pity but it was hard for them to watch me struggle to do things for myself. I can still do a lot but after I am so tired I have to sleep. It is nice to know that people will help you and not be full of pity. It does take some getting use to but I am sure you will adjust it will take some time but look at all you have already done with your life this will be hard but I am sure that you will do just fine. I hope you are feeling well and doing well.

 

[Jenkay]

Hi Robin,

So glad you found the site. I was a lot like you prior to being dx, very active. I was dx 3-4 years ago, it takes a bit to get through that first year, so many times I thought that I was back to normal and had a hard time as i kept thinking it was something else or just something I was or wasn't doing. Now it is definately lupus and you learn a lot day by day, rest is so important. Mobic has been a wonder drug for me, hope it works for you too.

Just want to say hi, welcome you and give you my support. Please feel free to message me if you ever need anything.

Jen

 

[KarolH]

Hi Robin,

Welcome to the best place on the net where you will get great information, support and compassion from a great group of people.

Know that your not alone. If I compared the person I was 6 years ago to now I would be hard pressed to believe it even is the same person.

We all have good days and bad, and this darn disease is so unpredictable that one never knows how we will feel from day to day.

Come here when you need to talk and we will listen. Most of us have lupus and we all support each other. Most importantly....WE UNDERSTAND!!!

Join us in the chat room sometime. We have great fun in there and it is instant replies to your questions or concerns.:wink2::wink2::wink2:

Sure hope you stick around here and hope to get to know you better.

 

[robinmik]

Thank you!

To everyone who has responded so far...thank you so much for the support. Reading all of the posts have already made me feel a little better about this, and I don't feel so alone!