Hello from Mississauga, Canada

JohnnyBGood · Posted: Sat Jun 14, 2008 10:13 pm Post subject: Hello from Mississauga, Canada

Hi,

I have been diagnosed with having SLE since January 1999.

It all started for me one crazy day in January of 1999. We had just had an overnite blizzard and I stayed over at my in-laws for the night. When I awoke to see the tonnes of snow, I began shoveling my in-laws' driveway. Then I left for home... I got stuck a couple of times on sidestreets and had to shovel my way out... when I got home.. you guessed it.... I had to shovel my way into my driveway... I was, neeedless to say, very exhausted and decided to take a shower and go to bed... That evening I started not feeling so well. I wasn't sleeping well, I had lost my appetite and vomitted a few times... I wasn't sure what was going on. I let it go a few days.. and then I found myself very fatigued to the point I was falling asleep at my desk in my office... I couldn't understand it.. So I decided to go to a walk in clinic. The doctor listened to my chest and immediately sent me for X-rays... He found that I had one lung completely filled with fluid. He sent me right away to emergency and I ended up staying in the hospital for a month while the doctors tried to figure out what I had. It started with the pleural effusion... then I got pericardial effusion and I had constant fever. They first mentioned lupus and then for some reason ruled it out... thinking maybe it was TB... I went through many tests and even a bone biopsy and nothing came of them.. Then they sent in a rheumotoligist to review me.. He ran some more tests and discovered I did indeed have SLE. They put me immediately on IV prednisone and like a miracle my fever was gone. They then stuck a needle in my back and sucked out 3 litres of fluid from my lungs. It was crazy...

I ended up on the full dosage of prednisone for months and gradually reduced. Now I am on Plaquenil. My lupus seems to have been in some sort of remission until last year when the extreme fatigue and bone/muscle pains were constantly kicking in.... but now I think its back more than ever because I am suddenly developing the butterfly rash (which I never had before). I called my rheumotologist and explained this but he won't let me come in until September... not sure if I should be okay with that though.. I don't want to cause more problems..

I hate this disease as it has taken over my life. I now have a 4-month old baby boy and I can't spend more than 5 minutes at a time playing with him. I find it very difficult to even help my wife with him and to do basic house chores....

Hopefully spending time here will help me cope.. as it also seems difficult getting people to understand what I am going through.

Oluwa · Posted: Sun Jun 15, 2008 4:07 am Post subject:

Hi JohnnyBGood..Bwell...

Wow what a flurry of a day... outside and inside at your hospital stay. I am glad you are here, alive...and with a four month old son...ah...Happy Father's Day to you...

I, we know what you mean, we hate the disease. Sometimes that hate makes us dislike ourselves and we curse, grumble at what we have become and long for what was.

You will find your routine with caring for your son, in the things you can do. Feeding, napping with him, tubbing with him...folding a few clothes, washing his face..laying on the floor with toys on a blanket.

Sometimes we have to modify the domestic stuff...or do them in increments. Find shortcuts. Do what we can, but never feel guilty for what we can't.

I always say make a to do list for today then cut it in half for the day. Don't drain yourself, save some for tomorrow...and rest to recoup what you just used.

You won't have difficulty getting people here to understand...in real time, it can be a problem. For me, I decided it is better I understand them in why they don't get it instead of trying to help them to understand. They don't have IT...we can use many metaphors, relate to an emotions, a feeling and well, it sometimes, many times doesn't work....We can explain, they understand but sometimes by nightfall, it can be okay lets go.. whats ah, wrong...I just say It (Lupus) is doing ITs thing. I refer to IT as a separate entity...IT's own...He toys with me...

IT does what it wants, and I have to accommodate IT...and too I can manage IT a bit...you know, the usual....by

I try to....eat clean for the most part, avoid junk, anything in a colorful wrapper. Avoid preservatives, color red, artificial sweeteners, exercise a bit each day. Manage stress, breathe in deep...care for my spirit. Give myself a mental break...cover, protect from the sun. Be kind to myself and not talk bad about myself, in my head while in bed, while anywhere...

Butterfly rash..I have. Have you been in the sun, under stress? Mine use to come and go...for over 18 months it hasn't left. IT took up squatter's rights on my face. It goes from light pink, and when in a flair without Jones of NY it is red. Use your SPF. Handle your skin with care..maybe a little Cetaphil cleanser and lotion. No slap, slap with aftershave...

Be kind to you...especially today, it is Father's Day..again Happy Day.

Read about, chat about..not very many men, but the ones we do have are greatest, we cherish, we admire. I do.

Your posts, our posts...we all help each cope..so I do hope you post often. We learn, laugh...and sometimes writing about your day, your life will heal, release your woes, minimize the stress...and never apologize for moaning.

Gosh, if I did...there would be pages of..oh, sorry

Be well..
Hugs,
Oluwa

KathyW1958 · Tiger Joined: 12 Jun 2008 Posts: 810

Hi Johnny

Happy Fathers day to you. I am sorry to hear that you are having problems with this illness. This is not a nice illness to have. I have SLE and have had it for years. I am sorry to hear that your doctor will not see you until September. That seems like a long time from now if you are having symptoms. I hope that you can get the help that you need. Welcome to the forum. There are a lot of wonderful people that come in here and they can help a lot. God Bless.

Kathy
_________________
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

Medications:
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

Saysusie · Posted: Sun Jun 15, 2008 8:01 am Post subject:

Hi Johnny;
Happy Father's Day. As Oluwa mentioned, you will have no problem with the members here understanding everything that you've dealt with (and will deal with) due to Lupus. Also, let me just piggy back on her suggestion about not over doing, making a list of chores for the day and then cutting that list in half.
We all have had to make accommodations for our Lupus, in how we live our daily lives, how we go about our routine chores, and how we spend quality time with our loved ones. It is something that we find we must do, but it still allows us to enjoy those things that are very important to us. We just enjoy them differently and in smaller increments of time.
It is not unusual for Lupus to rear its ugly head after an illness, or an extremely stressful time in our lives, or after extreme exhaustion. Personally, my Lupus developed after a stressful time in my life (as did my daughter's), my best friend's Lupus developed after a serious viral infection.
I am glad that you decided to join us and I know that you will find that the people here are very open, understanding, informative, and supportive. I'm glad that you are here!

Peace and Blessings
Saysusie
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Look For The Good and Praise It!

JohnnyBGood · Posted: Sun Jun 15, 2008 8:28 am Post subject:

Wow!

Thanks guys. You guys are really nice. I think this is the most I ever talked to anyone about this, really. Family and friends just talk the usual...you know... "don't work", "take it easy" and the like and then that's it. This is certainly the most heartwarming response I've gotten. I certainly will try to visit often, even if just to get some stress off my back.

Thanks once again for being there for me and each other.

sits_inthe_corner · Posted: Mon Jun 16, 2008 3:16 pm Post subject:

Welcome JohnnyBGood from another Canuck.

I'm in Nova Scotia. I haven't been diagnosed yet. I've had one possitive ANA another boardline and a negative.

I've had some symptoms since I was 19, but I have rhuemy who thinks lupus is nothing but a bunch of hoowie. She did how ever put me on plaquenil, and I'm also taking arthrotec 75.

I manage pretty good for the most part. Today is not so good. I'm tired and foggy headed and swollen up like a puffer fish.

There's lots of things I've had to adjust my life style to. And every once in a while just for fun, some new weirdness gets added.

Family is caring and supportive, but they just want you to be okay so you try to put a good face on it. This is a place where you can take the mask off and say how you are really feeling Smile

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Oh look ... a cookie

Batch007 · Posted: Tue Jun 17, 2008 8:57 am Post subject: Welcome!

Hello JBG and welcome

I am also new to this board, in Canada, and have found lots of information and positive support from this board.

So far it is the only place I can talk about everything as because I don't have any exposed rashes or a malar rash, I look healthy and normal (although with the increasing pain I certainly don't feel it Rolling Eyes

).

Anyway, welcome to you.

Cheers, Batch007
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Life is a highway, remember, you choose your direction.