[CHUCKX53]

I have been a “Lupie” since age 26.…During that span, over half my life, I have had a variety of disorders…..Anxiety, Pericardial Inflammation, Migraines, DDD, GERD, Palsy, Joint Pain, Swelling, Vertigo, Fatigue, Numbness, Brain “Fog”, Sleep Disorders, General Inflammation, CNS Involvement, and a host of smaller aliments…..I do not take Steroids, Plaquenil, or other so-called Lupus drugs, as I have drug allergies to all but a very few drugs….for me they have never been the answer…

I have a family history of Lupus…My Father developed Discoid Lupus at age 37, and full-blown SLE late in his 50s….I have never had the skin form of Lupus, but am sensitive to sun exposure…Too much time in the sun will make me feel sick…I was not Dx until 1986, after my father went into the full SLE stage, and those lesions attacked his brain, making him an old, old man practically overnight, reducing him mentally to the level of a 6-year-old…He died in 1994.

I would like for any other long-suffering guys to post here and relate their experiences….Yes, it seems the Men-Women ratio is skewered, but, as my family history proves, Men can, and sure do, get Lupus.

 

[KarolH]

Hello Chuck and welcome to the site.

I am not a man however wanted to jump on and tell you that I am sorry for what brings you here but sure glad you found us.

We do have some male members and your right, they do get Lupus but obviously the male/female ratio is 1-10.

I am sorry that your Dad suffered the way he did and that you were relatively young when he died. I was 22 when my dad died and that is a tough pill to swallow.

I hope you find support here from a great group of people and please join us in the chat room sometime.:wink2:

 

[Katharine]

Hello Chuck

Again, I'm not a man, but welcome to you.

There has been a recent thread about the men with lupus in this section. We do have quite a few male members but they post less often (and then there's the ratio - it's not all down to us women talking more :lol.

You say that you can't take any lupus drugs. I hope for you that your lupus has stayed under control without? Do the docs have any suggestions if it doesn't? Or have you had that problem in the past during a flare?

Bye for now,
Katharine

 

[keebler]

Hi Chuck,

Welcome to the site.

Once again :lol: I am a female. Although my brother has SLE like I do. I guess we always have shared everything so why not sle.:hehe:

I have a friend that is allergic to most meds. I know how much of a pain in the bottom that is.

Take care,
Lyn

 

[CHUCKX53]

Thank you ladies, for your welcome…..

Karol, I was 40 when my Father died…He had had Discoid LE from about 1960...It destroyed most of the skin on his face, scalp, upper back, and upper arms….I can remember as a boy never watching Dad shave, but Appling make-up every morning to cover the scaring….He would never discuss any of his health-related issues with me (Children are seen & not heard)….So much of this I found out later, as an adult…When he developed SLE, no one really knows…He had been living alone for several years…But his descent into **** was swift…On the way to work one night, he drove into a ditch…Was hospitalized for two months….Lupus had turned on him with a vengeance….Multiple Brain Lesions, reducing him to the level of a 3-year-old…We (the Family) were told to take him home, nothing more that could be done, He had 2 months to live…..

That was in 1985.…And he lived almost 9 more years….I should mention that my Father was a Pharmacist, and that he had been most likely been self-medicating for years…Using whatever he had available to fend off the symptoms…And he had a lot available….

What about dispensing protocols, you may say ?? Wasn’t that not legal ?? Well, there’s ways, and ways…I know, see…He would get drugs for me anytime I needed them…Antibiotics, Anti-Inflammatory, PP Inhibitors, even Pain Pills, any time I needed them…No scrip was ever necessary….So I’m sure he did the same for himself….

At the time, I had been dealing with the onset of what would prove to be Lupus for 5 years….I had made the trek to more than 20 doctors, countless ER visits, many drugs that didn’t work (Most made things worse)…The year after my Father’s crash, I mentioned to the new PCP I was going to about my Father’s Lupus and his condition…And then learned the genetic nature of the disease….And it was off to the races…I now had a partial answer to what was bugging me…Full answers would be years in the making…If at all…I’m learning new things all the time, still today….As Lupus has slowly expanded and mutated in me over the years….

 

[KarolH]

Your a excellent writer Chuck, journalist by profession??? Just curious.

Anyway, it goes to show that genetics do play a important role in auto immune health issues. Such a shame for a smart man like your dad to be reduced to what he was before dying.

I have brain lesions too but nothing near as severe as your dad. I was diagnosed with MS in 2005 and it was not until 2008 that they finally got the dx right.

It takes a long time for things to show up in our blood work that help to paint a clear picture and the journey to get there can be frustrating.

So happy you joined us here. I think I will enjoy reading many of your posts.

Enjoy the holiday today. Hope your weather is better there then here on the East coast, cloudy, damp and not very nice.

 

[CHUCKX53]

I took Journalism courses back in school (Even ran the school paper), but never went into it as a profession …I do creative writing for a non-profit that I belong to, though…

This was only the first part of my journey….I have about another page or so to tell, to answer Katherine and Keebler…not a pretty story, to be sure…But I am getting Fatigued, and will have to finish another time…

So again ladies, I thank you for dropping by, and for your welcomes…

Until next time………..Chuck.

 

[Katharine]

We'll look forward to that Chuck and yes, too much time at the PC isn't a great idea for fatigue

Katharine

 

[lup92]

Hi Chuck. I actually am male Just a quick note to say glad you found this site. The people here are nice, straightforward and very helpful. Sorry to hear about your experiences but look forward to more of your story when your not as tired.

PS your sig: Star trek fan or just your preferred outlook on life?

 

[debatat]

Hi Chuck and welcome to the site. I am sorry you have experienced first hand just how tough lupus can be. I have also lost a family member to lupus. I am a female as well, but I understand how hard it is to watch someone you love fighting an incurable disease.

I hope yopu find the support you need on this friendly board.

Take care

Deb

 

[CHUCKX53]

Deb, and Lup92, thanks also for your Welcomes......

And as far as the Sig, Lup92...The answer is....Both.

To continue the story.......

Katherine and Keebler…Where to begin ?? I worked in an Industry around very dangerous chemicals for just about 5 years in the mid-to-late 70s…..In 1974, I was nearly killed in a nasty Industrial accident, and as a result, lost my Spleen….In early 1980, the Lupus first manifested in me via Anxiety Attacks, rapid heart rate, and chest pain…I did not know at the time, but my Lupus had been activated, the gene had been turned on….And there was no escape….Within a few months, I discovered I had become allergic to aspirin and caffeine, two drugs that I had used my entire life with no problems…and the same went for the chemicals I was around, in particular TCE (a de-greasing agent)….And so I left that job behind, and opened my own shop…Did I mention that during this, I was working and going to school full time, with a family of my own to support ??

Throughout the early 80s, I attempted to quell each symptom as it cropped up…I still thought of these as separate things, you see, and begin my parade to this doctor, that doctor, on and on…Applied for SS disability at age 30, was denied, applied again, was denied, went before Administrative Law Judge, was denied a final time…it was over….I was done, waiting to die….

Then, in the summer of 1984, I begin to remiss a little…then a little more…I had given up most all drugs…They either didn’t work, or made things worse, or I became allergic to them…and I felt that I could beat this, whatever it was….And for the next 4 years, I bumped along, still having the Anxiety attacks and Killer Migraines, but not as often…I was adapting….My body learning how to cope…In late 1988, I jammed a small piece of metal in my thumb….It became Infected, and at the ER I was given Codeine for the pain….And to my surprise, It took out my Joint Pain and Chest Pain….So off the PCP I went, and got a scrip for Codeine, and was on it for more than 3 years, everyday….Until I weaned away from it in early 1992.…

The next piece of the puzzle was solved in early 1993...The chest pain…I got bad enough for me to have to hit the ER in lots of pain…I knew it wasn’t my heart, I been hooked to scores of EKG’s over the years…And the old doc in the ER told me what I wished I could have known years earlier…”You Have
Pericardial Inflammation”……What ?? For all these YEARS ??? Yep, it was so…No doctor, or anybody, had ever caught this….I was given a specific anti-Inflammorty, and within a few days, the chest pain was gone….The only successful Drug treatment I ever received…Even now, though I occasionally have mild chest pain, it has never returned to the level it once was….Thank God for that…

More to follow...Next time....

 

[SoCalEric]

Hey Chuck,

Male here with Lupus. My story is a common, long one. Years of unexplained troubles, doctor rolling his eyes when he'd see me. After a few years of this things got worse and Nephritis led to me being diagnosed (I'd never heard of Lupus). Started chemo not long after diagnosis. The chemo worked wonders and turned things around, but Nephrits did return a few years ago...more chemo knocked it down again.
These days I'm doing pretty well, got my troubles but I'm pretty used to them and it's become part of life.
Welcome to the board. I'm not in here as often as I used to be, but I pop in every now and then!

-Eric

 

[lin]

Just wanted to say hi chuck, and welcome ,i know im not a guy either

take care Lin xxx

 

[CHUCKX53]

Eric and Lin, Thanks also for your Welcomes......

To Continue the Story.......

With that, I entered another remission phase, and for the next few years, Mid-to-Late 90s, I bumped along with just joint pain bring the most bothersome aspect…Always the Fatigue, had been around since the beginning, but I could deal…1999 saw the rise of Migraine activity, The harbinger of CNS Lupus, although I didn’t know at the time…These evolved into what I found out later were “Cluster Migraines” -- That is, they would cluster around a certain time frame of 4-7 weeks, and the leave, only to return later…By 2002, they had settled into a seasonal cycle of Early April - Late May, and Mid September -Early November….That year, I had a nasty run of them, 23 in 30 days, and the base of my skull begin hurting as well…This drove me to a Neurologist, who took his sweet time about getting me in and having an MRI done…and at the last of it, the cluster had passed, there was no help when I needed it, other than trips to the ER to get Demerol Shots, the only Injection that would knock out the Migraine for a few hours….(Hospitals mostly stopped giving out Demerol after 2004 because of the addicts who would come in to get high)….In it’s place, I was shot with Tordil once, a nasty drug that I had a real bad reaction to…And once, I was shot up with a Steroid, that locked up my muscles and literally made me want to kill someone….So, after that, I just stay at home with the Migraines and let them run their course….
Another ugly aspect of the Migraines during the late 2002 run, was the increased upper neck and base of the skull pain…Just about like having a Migraine in your neck !! It didn’t take me long to realize that the nerves at the base of my skull had been spawning the right sided Migraines all this time…I could now feel every nerve track there throbbing in sick, electrified pain, just like the pain in the temple, forehead & right eye….But only later would I find out about the CNS and how It was there all along…It had just decided to rear it’s ugly “head”, so to speak…and another thing crept in slowly…Twitching and palsy-like shaking of the right shoulder, arm and hand….When under stress, or distress, the shaking would start in….very slight at first, but increasing over the next few years…..

When I turned 50 in 2003, I entered another remission phase for about a year and a half…Joints still ached, clusters still came and went, But I remember this time best for the lessening of that devil Fatigue that has always plagued me…But, the good times don’t last, we all know that…From early 2005, I felt my lifeforce decline, slowly, once again…by 2006, it became exhausting to keep up with some of my activities, and I could no longer keep up with the tough demands of what I had done for more than 25 years…So I closed my shop, for the last time……

---All for now, will continue later.....

 

[lup92]

You know what chuck? You should write a book. I know there are issues with energy, but seriously, you should think about it. Some famous author (I can't remember who ) once said he became an author because he was frustrated that he couldn't change the world and the things around him, so he decided to write about it as therapy instead. I think it could work for lots of us on here...

Good luck and awaiting the next part.....

 

[CHUCKX53]

Actually, I am writing a book, but on a totally unrelated subject...Has been 10 years in the making, and I still have a mountain of research to go...My hope is to finish by 2011, but I don't know...I have had to travel quite a bit in conjunction with what I am doing, and the money pot is running dry...Hoping it all pans out in the end, it is something in my life that I am passionate about...

Lupus may run how I have to schedule my time, but it doesn't run my life or who I am...I have many other Interests and as long as I am able to move, The Bad Wolf is not going to ruin it for me....The best advice I could give here is, Don't give in and Don't give up....I know it will get me in the end, But I will give it one devil of a fight along the way.....

I don't even know why I'm spewing out the story, I don't like looking back on my cruddy experiences, and I have left a lot out, some I remember and some I forgot...I wouldn't tell or post this anywhere else, people usually aren't interested in this sort of thing....And putting my pain on public display is something I have to avoid in the real world.....I just started putting this here in response to a question, and it stated snowballing...But I will finish...Just not now...

There's a quote, and don't ask me who said it, I don't remember...But I always found it helpful....

"Do not go gentle into that good night -- Rage, Rage, against the dying of the light".

 

[Bobbi]

Hi Chuck,

I think it's good to get it out in places like this board. It helps us to put things in perspective and where else can we go that we are understood? I find myself doing the same thing. I like that lupus doesn't run your life. I don't want it to run mine either. I find myself getting depressed and irritable lately. Even kind of angry about my diagnosis. But I have to stay busy, if not physically, then mentally to keep my mind occupied. I don't think it's the lupus that is going to beat me. I think it's going to be the drugs they give me to fight it. But that's down the road and all I really have is this moment. So, like you, I am trying to fill this moment with interests other than this disease. I can't change the fact that I have it, but I can change the way I deal with it.

I can't wait to read your book when it comes out and I love the quote!!!! It's good words to live by in our situations.

Peace and take good care,
Hugs,
Bobbi

 

[Clare.T]

Hello Chuck

I am pleased to meet you
Thank you so much for sharing your story with us. The wonderful quote is from the Welsh poet Dylan Thomas's (1914-1953 )very moving poem to his old father losing his feisty spirit in old age, approaching death, and about loss and grief. It is about not giving up easily, especially appropriate to many of us.

All the best
Clare

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light. Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.
Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.
Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.
Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.
And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.



Dylan Thomas

​

 

[CHUCKX53]

Thank you, Clare....I probably kew that, some time in the distant past...Just forgot....

Odd conjunction that Dylan Thomas died in my birth year....Wish I could leave something insprirational behind for those who follow me like that....

I see you're a "Hitchhikers Guide" fan....One of my favorite series reads...I've often left this note behind to confound people......

"So long, and thanks for all the fish"

 

[Douglas]

Howdy Chuck,
Welcome aboard.
I was diagnosed about five years ago but it is now obvious that I have had SLE (or whatever) at least since the early seventies with some symptoms from much earlier. After a not totally unsuccessful career I was forced into early retirement by the autoimmune problems.
And it was one of the best things that ever happened! My wife Kathryn had said that if I did not retire then I would never live to reach 65 or 72. So at 59 we bit the bullet (lower pension) and everything has been great. I rest a lot (without feeling guilty) and, with the help of very conservative MDs who know that there is no magic pill for Lupus, life is very good.
Glad to have another male on the forum
Douglas+