View Full Version : Rob...
06-03-2008, 09:16 AM
I want to say I think about you often and read where you have been...
I am elated to read you are enjoying life...sailing, friendship with your dad. Sounds like a lot of love, pure good fun.
Just want to say hey..and give you a hug...squeeze...
I pray, wish with all my might and hope things will turn around for you and this round of medicine is the ticket for you...
Thank you so much. I love the new avatar with the plane dropping "hug bombs". I hope what starts tomorrow, goes quickly, and works. I know it will take time, and patience on my part. I wish some days, I wish I could be the person I used to be. I was never afraid of a challenge. I thought I was "10 feet tall, and bulletproof". Well, it doesn't work that way. My father and I came to blows after my diagnosis. It was ugly. It almost broke down into a physical confrontation between us. That, is not like either of us. We were both scared to death. I was scared of the Lupus diagnosis, and what impact it was having on my life. He was scared by the fact that he might outlive one of his children. We didn't know what was happening, and it got ugly for a bit. Today, in so many ways, my Dad is my best friend. we do so much together. My Dad is retired law enforcement, and a Marine. He's a card carrying tough guy. There are two things about him that I'll never forget. Once, I was with him when he arrested this guy who was really abusive, and a vulgar jerk. Insulting my Dad, and anyone who happened to be related to him. I was 14 years old, and I was P.O.'d at this jerk. When I asked my Dad why he didn't kick this guys butt, he looked at me and said, "Because I didn't have to". This "jerk", showed up at our house one day, and thanked my father for not kicking his butt that day, and for helping him get a job, and a place to live while on probation. I learned that he wasn't the first, nor was he the last. Years later, at my fathers house in Arizona, I saw my Dad out in the driveway early one morning, cradling something in his arms. I was a great horned owl, with a broken wing and ribs. We don't know how it got injured, but it limped over to the pond in his yard for a drink. This owl had almost a 7 foot wingspan. He gave it water, and comforted it the best he could until the game warden arrived. Long story short, that bird recovered 100% and was released into it's home, the wild. These things showed me who my father really is. I hope someday he thinks as highly of me, as I think of him. Sorry to ramble. I'm happy him and I are friends again. Thank you Oluwa, your words, are always comforting. I know you have been fighting a fight none of us would ever want. Yet, through all that, you still care so much about others. Thank you.
06-03-2008, 05:00 PM
Rob, your father sounds like a one-of-a-kind person. You are so lucky to have that in your life, and he is lucky to have a son who appreciates him and wants to share his life. I'm happy for both of you!
06-03-2008, 05:41 PM
Rob, your story of the big bad Marine dad who is really a pussy cat rings true. My son is a Marine ....well out now but once a Marine always a Marine ...and the same is true of him. He is outwardly the tough, no nonsense, in charge guy. Underneath he is gentle and caring. I think the Marine Corps produces some of our very best! Please pass on my Semper Fi to your dad and tell him thank you for all his service to our country.
How true it is, there is no such thing as a "former Marine". My big act of defiance as a youth was to join the US Army instead of the Marine Corps. We laugh about it alot. I read your post on your vacation. The St. Lawrence Seaway, sounds awesome. I've been exploring the coast here in Maine a bit. I love the ocean. Or in a pinch, any big lake will do! I know what you mean about dial-up. It's frustrating to say the least. Did you mention you are moving as well? If so, I hope all goes well. Enjoy your vacation!
06-03-2008, 05:55 PM
Nope I'm not moving ...have twin grandbabies on the way ...you couldn't pry me loose from here right now :-)
I think Maine is a lot like where we are on the Seaway ....cool weather and lots of water to enjoy. We have a new pontoon boat this year so I'm looking forward to long boat rides ...suitably covered in flowing garments ~sigh~
You'll have to forgive me, I sometimes mix up who is doing what, and when (I know somebody is moving). The weather here is cool, even in the heat of summertime. Near the ocean, the winters are mild compared to the weather they have inland. Makes for a pretty tolerable temp all year round, and the overcast days don't bother me a bit. My sister and her husband bought a pontoon boat. It's parked in the marina where my father's and my boat is docked. It's really a neat rig. Princecraft 22foot I believe. Rides really nice, and can carry a dozen people. Twin grandbabies on the way, wow! That's got to be exciting. Your son sounds like the typical Marine. Tough as nails with a heart of gold. Semper Fi to him as well. Enjoy your vacation!
06-03-2008, 09:34 PM
Bomb, bomb, bomb...
You are the person you used to be in heart and soul still. Sometimes when we are ill, we really enjoy the finer things in life..finer as in smaller. That is really all that changes, eh?
I am me, you are you...we are the same, we just do things different. We see things different. We can fill up on the smaller things instead of having an insatiable appetite for the huge things in life. Our scale changed, not us.
It is hard to see our parents vulnerable, with fear, unable to fix it..and when they are they usually replace the vulnerability with anger or authority. And sometimes the rough patch can make the bond, tighter...you become friends instead of just parent and child. But sometimes that relationship is nice too, being the kid. A big Dad bear head hug I always enjoy...
No matter what age we are, we are always their children...
I am a Squid...I did a stint in the Navy. Six years Air Traffic Controller.
My stuff I have going on is small potatoes. My fight is so small and your's is so large. I will have a little talk with Jesus tonight, tomorrow, through out the day... and the next day.
Worry not tomorrow, and as the medicine fills your body, meditate and see it healing you , touching each spot, each nerve, each blood cell....feel it making you well. Breathe deep..I am getting well, deeper...I will be well...see the medicine flow through you.....
P.S. I am the one moving....
All done with treatment for today. I'm very tired,but I'm ok. I'll talk some more after I sleep for awhile. Thank you guys for all you do to keep my spirits up. Off to bed for me. zzzzzzzzzzzzz
06-04-2008, 03:02 PM
Rob, I'm hoping today's treatment hit all the right 'buttons' in your body, and you can begin to feel better. Prayers for you.....and hugs, too.
06-05-2008, 05:40 AM
A new day, more treatments today? A guys gotta do what a guys gotta do, eh? Thinking of you, sending you wellness vibes, h-m-m-m-m-m-m-mmmmmmmmmmmmmmmmmmmmmmmmmm.
Good morning all,
After a rather long night of bad dreams and cold sweats, it's morning. Oluwa, you were asking how the meds affect me. I don't really know, as this is only the second time I've had IV methlylpred treatment, and only the first time having the higher dose/longer duration type. When I had the short 3 day followed by oral methylpred it gave me night sweats and weird dreams, like when you have a fever. Oluwa, you were an ATC in the Navy, I never would have guessed that! Very cool. I spent six years in the Army, I was a driver on an M-1 Abrams Tank. We were affectionately known as "Treadheads". My nephew is in the US Army Special Forces. He's stationed at the JFK Special Warfare School at Ft. Bragg, not far from you. He's a combat medic and translator with the Green Berets. I wouldn't say what you have going on is small potatoes Oluwa. I think what's going on with me is small potatoes when I read about all the challenges you face on a daily basis. Today, the nurse is going to set me up in a room with a view of the marina. The medical center is right on the waterfront. I'm taking my Cd player and headphones. I made up a CD with my favorite "ocean music" as I call it. Southern Cross by Crosby Stills and Nash, Edmund Fitzgerald by Gordon Lightfoot, Walk on the Ocean, stuff like that. Ought to make the time go quicker. Got a new book too to read. Gotta go get ready to go. I'll talk to you all later, have a great day.
06-05-2008, 07:33 AM
Wow Rob, Gordon Lightfoot? Not many people have ever heard of him let alone like him! I'm impressed!! We went to see him in a concert a few years back and he looked like he'd been rode hard and put away wet! Still great music tho :-)
I hope today goes OK for you ...thinking of you and sending healing vibes. You hang in there!
06-05-2008, 07:50 AM
Round two, going for a knock out. I was going to take a nap, but instead I thought I'd do a bit of research for you...
Have you been here...
Or read this?
Yes, me in the Navy. AC1. Actually I converted to AC. The first 18 months I was a HT, Hull Technician, Turd Chaser. I never did any chasing, nor fought any fires but I did weld on nuclear submarines. Hull Technician would fight fires, do damage repair from fires, attacks and nuclear attacks. And who knew I would turn out me be one of the best welders. I guess I looked at it like art. the arc blazing, the beads..the fluid flow...gas and stick...and of course I had my share of slag burns.
I enjoyed, met a lot of wonderful, fun people...who I think of often. I keep in touch with three of them.
Even my fellow Navy personnel didn't believe I was in the Navy till they had seen me in dungarees or whites, and those who did see me in uniform always didn't recognize me in civvies..crazy.
Can you redirect your thoughts before going to bed to prevent the nightmares that are medicine related? Like wearing ear buds with your ocean music or a music TV channel on while you sleep?
Waterfront, ocean music....close your eyes and you will be the island..
Hmmmmmmmmm..healing vibes for you.
06-05-2008, 02:05 PM
Sorry you're having a troubled sleep, Rob.
When I'm feeling anxious I ask my self am I dreaming. Sometime just realizing you may be dreaming is enought to turn it around. Waking up and going back to sleep just put me right back in the same dream.
Hope you are feeling better today :)
Another day down. Not a good day today. Got sick to my stomach, dry heaves too. Terrible heartburn. Common side effects. My mouth tastes like I've been chewing on a piece of aluminum foil or something, and everything tastes awful Got a chocolate milkshake, and it's tastes like dirty socks or somethiing. Those nightmares I was talking about are not really dreams, how ca I explain it. It's like you are semi-awake, everything is black, and there is no sound noise or anything. You just feel terrified, but you don't know what you are scared of. A feeling of total fear/panic. It does not go away if you wake up. It's a common side effect of the medrol (methypred). Anxiety, cold sweats right now. Have a few diazepam from the last treatment, going to take one later. This happened with the last treatment, but not to this severity. Gotta go for now, more nausea. I'll be ok, hopefully this will pass quickly.
06-05-2008, 03:00 PM
Hugs Rob, hope you get a good night's sleep tonight :) Just remember this will wear off eventually.
06-05-2008, 03:10 PM
I am so sorry you have to go through this. It pains me in my heart to know you are going through such nights...such days.
I wish I had an antidote. Can you use anti-nausea drugs like the ones they use for chemotherapy patients? Quick google... Anzemet, Kytril, Zofran , Emend and Aloxi. My Mum used one....
Dirty socks...icka...maybe warm club soda..may help with the belly too.
06-05-2008, 08:05 PM
Oh, Rob....I'm so sorry you have to feel lousy in order to try to get better. Just not fair....hope the doc can find something for you to take to ease the side effects. Hugs to you....and prayers for some relief. Remember, you'll be back on Against the Wind before you know it!
Gordon Lightfoot is getting a bit rough around the edges, but you're right Raz, he can still sing and play the guitar. My dad's old house was on the Carefree Highway in Arizona. It's a real road, that runs through some beautiful country, and Gordon wrote that song of the same name after traveling it. I love 70's folk/rock singers, or whatever they call them these days. Jim Croce, John Denver, Gordon Lightfoot. They all share space on my cd rack with Pink Floyd, The Eagles, Journey, and so many others. Had company the other day, my Mom's best friend. She thought it was interesting to see that I have everything from Van Halen and Rob Zombie next to Andrea Bocelli and Alison Krauss. I like good music regardless of genre I guess. Can't sleep right now. Listening to Alison Krauss and Union Station live. Such talent. Saw them live a couple years ago, as well as the Eagles live. Unforgettable concerts. Keeping my mind off of how crappy I feel @ 1 in the morning with music. Gotta go for now. Thanks everyone for all the encouragment, it means alot.
06-06-2008, 09:19 AM
So, did crappy finally leave you to sleep. I was prowling about at the same time you were up...
I had seen John Denver in concert in Hawaii. Excellent concert.
Another round today? Tummy aches...try to breathe in deeply and hold for a few seconds and exhale slowly. May tame it a bit...
In my thoughts and heart today,http://www.mysmiley.net/imgs/smile/party/party0007.gif (http://www.butz.org.uk)
06-06-2008, 10:10 AM
I haven't posted much in this particular thread, but I read it every day. I hope that you are feeling better and I wish that there was something that I could do to help you with these awful side effects. I am truly sorry that you continue to suffer from night terrors (my mother has them almost exactly as you do). I, too, have night terrors, but they are not as vivid and frightening as yours. I can imagine how frightening that must be, especially when it lingers after you are awake.
Short of being able to actually do something for you, I am just sending you my thoughts of care and hopes that you are able to get, at least, one night free of side effects and night terrors. I hope that this day brings you a measure of comfort.
Peace and Blessings
Guess what. I don't have to do anymore IV methylpred! It is doing exactly what it is supposed to do, and, the neuro was concerned about the side effects also. Two more days would not add anything beneficial, but it would be two more days of miserable side effects. It was going to be 5 days. Well The side effects have really been bad, but, I woke up this morning and my rt. eye feels really good, and the fuzzyness/optic neuritis pain is alot less. My constant problem I have with my jaw, has calmed down drastically. Many of my typical joint/connective tissue pain spots are noticeably less painful. I really can't believe it. The neuro told me that IV methlylpred can have a very rapid anti-inflamatory effect. It does. My blood work and various other tests look good, and I'm on oral methlypred for a few days to taper off. Gotta go in monday for some other tests, mainly an MRI and the nerve potential/conductivity test. Right now, my stomach is still bothering me, I'm exhausted and shaky, but I am so happy with todays happenings that I don't care about the nausea. It should clear up by tomorrow. Took a couple diazepam tablet last night and slept like a log. Something is finally working! I can finally feel improvement! I didn't think it would happen. So, I'm off to sleep some more for now. I'll be on tomorrow to get caught up on how you are all doing. Thank you guys, every one of you, for your encouragment, prayers, well wishes, and friendship. You guys have made these last three days bearable. I'm off to Zzzzz. I'll talk to you all soon.
06-06-2008, 02:03 PM
Such wonderful news Rob...wooohoooo! So awesome..absolutely fabulous..
Sleep, sleep well...soon the toxic drugs will disperse and tomorrow is a new day.
I hope you will be able to eat, may help with the exhaustive and shaky feeling. Eat small, probably start out with a bit of broth, cooked vegetables. You know, the type of light softy foods...
I just feel good you are feeling improvement so fast..really I do. It is a good feeling to know someone who was hurting so, is feeling better.
Head hug...wishing you wonderful dreams.
06-06-2008, 11:21 PM
Rob, I just read all of your posts and I am so sorry for what you are going through. That's wonderful that you are done with the treatments. I am praying that the side effects wear off quickly. I was once on a drug that affected my taste and smell. Everything tasted and smelled of rotten eggs and had a horrible metallic taste. I hope everyday gets better and better for you.
06-07-2008, 03:44 AM
Congrats Rob! Hope you had a restful night :)
06-08-2008, 06:26 AM
Rob, Thinking about you, this minute...
So how goes it...recovering from the drugs...sleeping deep?
It's Sunday morning, and all is well. My entire mission yesterday was to go to my youngest nephews high school graduation. The smile on his face when he saw me there, let me know I did the right thing, even if my body said otherwise. The kid is so smart. He's heading off this fall for college in Florida. His major is Astro-Physics. His plan is to eventually work for NASA. I remember helping him build model rockets. and his excitement upon getting his first telescope a few years ago. Who knew it would lead him to this amazing choice of study, and career. My sister, his mom, was on cloud nine last night. And his dad, like a lifelong fan, cheering for his favorite sports hero. It was a great night. Everyone is going out on my sister's boat today, but I had to pass on that. I'm feeling better, but I'm far from OK still. Stomach is getting better. Food tastes almost normal again. Sleeping with the help of drugs. Still have the shakes. But, the good part is, my eye pain from optic neuritits has subsided, much of my usual pain points in connective tissue areas have settled down as well. Those things alone, make this all worth it. I'll be getting a bunch of tests done tomorrow, and hopefully they will further confirm my belief that the treatments, as bad as they were, were beneficial, and helped in a measurable way. Enough about me. Oluwa! how are you? Has IT given you a respite, and left you alone for a bit? You were a welder. Now I would never have guessed that! Though I passed all my welding courses at tech school, I hired a professional welder at my shop, as it is very much an art form. You either have the touch, or you don't. You certainly sound like you have the touch. And you got to see John Denver live. That is a concert I regret never having the opportunity to see. The man went way too soon. I love the optimism, and simplicity of his music. Susan, how's all in Halifax? Have you had any good news from stink-face? How's the work situation going? Relief yet? Razzleberry, yep I'm a Lightfoot fan. Great music. Saysusie, you do so much to help me. This site, that you put so much care and love into, helps me everyday. And your thoughts and prayers give me comfort. Jody, dede, and anyone I am missing, thank you all. Every response I see here, gives me more strength to push on, and endure. Thanks, everyone.
06-08-2008, 03:39 PM
No, I dont think they have even interviewed yet, and my supervisor is going away on holiday so there wont be any interview.
Stink face is happy with my blood work and told me to stay on the plaquenil....fine....
My appointment with the dermatologistthingyperson was canceled and moved to the 24..so my rash continues to grow and my toe nails are now painted so I can wear sandles...I'll try to get the polish off for my appointment. My nails are very porous and tend to grab the colour.
I'll probably get in trouble but to bad...it was probably my only chance to wear my pretty shoes...so :P
The black flies mosquitoes and road construction workers are out and driving me nuts lol.
I put my peppers and my tomatoes in the ground. Hope the frost doesn't come back and nip them.
I got too much sun :( so I'm feeling a little crappy. But it was a choice I made. Long live my garden :)
How's your tummy today? I'm glad you got to your nephew's grad, sounds like he's quite attached to you.
06-08-2008, 05:12 PM
Hi Everyone -
Rob, what an inspiration you are - trudging through those meds! Im so glad you are feeling better, and your optic neuritis is calming down. You are all such a wonderful support system for each other...It truly wonderful to watch (or read!). Im really glad I found this site.
God Bless -
Pretti in Pink
06-08-2008, 06:52 PM
I can only imagine how not only your nephew but the rest of the family felt to see you there, what joy I'm sure it brought to their hearts. You should give yourself a pat on the back as well, because you whether the storm of pain and meds to make the graduation and knowing that you had a hand in the path that he chosen even if it was just by supporting and believing in him from the first rocket on. Make sure he gives you a shout out before lift off :crazyeyes:
06-09-2008, 11:06 AM
Ditto everything that everyone has said! And, I am so happy for you and your nephew! You are, truly, an inspiration!
Peace and Blessings
06-10-2008, 06:32 PM
Rob, I'm a little late, but wanted to tell you how wonderful it was to read your post about your nephew's graduation!!! I'm so glad you were able to make your family's day by joining them.
Sounds like you've turned a corner....after all you went through, it must be such a great feeling....I hope you just keep improving, Rob. You've got lots of friends here pulling for you!
06-11-2008, 06:27 AM
Still recovering or out sailing? It has been beautiful down here on the south part of the east coast..How about up north?
Yes, I was a welder..we learned on the worst stick. 6011...but I could work that bead. Dip, drag, dip, drag...7018..dip, pull, dip.. pull. Acetylene, brazing...I could weld a pipe with rows on it to look like a corn cob.
I converted to AC because I just couldn't see myself as a welder at 40. I was slide into, okay suckered by a recruiter to go for HT and he said I could change my rate in boot camp. Ha..they laugh me out of the office in Orlando. I cried. But I had to stick it out if I didn't want to go to a ship not designated. I did my time, then converted.
The instructor kept telling me I had to have been to welding school prior. Just couldn't believe I had a knack for it. The year I became an HT was the year when they first opened the rate to women. So they flooded it with us females...and most of them were suckered into like I was...
Funny, I was the only female in my division who converted...I left the burns holes behind.
When I saw John Denver it was when he came back from Soviet Union, with One World. Gee that was in '86 when I had seem him I think....Very nice outdoor concert under the palms tree, cooler full of treats and cocktail. Just, juts a really nice night...relaxing. My first time seeing John Denver. I like his music, but I wasn't a follower not did I own amy of his albums...waz dat... an album...?
Hope you have a skip in your step and that shake tastes just like chocolate...
I'm feeling much better. Ate some pizza, and had a beer yesterday, and it actually tasted like pizza and beer! Imagine that, no more aluminum/metallic taste. I'm on the last of my taper oral steroids. I was supposed to have a follow up appointment this afternoon to talk about my recent 2nd MRI, but my truck wouldn't start, and I live in the middle of nowhere. I left my headlights on after going to the store yesterday. It's state law that your headlights be on when it rains here. Put a battery charger on the dead diehard, so it will be OK tomorrow. I have a 68 Nova I restored a few years ago, but it's battery is dead from being stored all winter! Nobody within reasonable distance to give me a jump, so my appt is now Monday, oh well. So you took basic at NTC Orlando. I spent some time there as a civilian DOD contractor giving the .22 cal Pistols they keep on hand for training a full overhaul/rebuild. Spent 2 months there. Couldn't believe how cold Florida is in Jan/Feb. Brrrrr. I got my start in welding when I went to work for Smith&Wesson back in high school. I thought I was going to just walk in, and start assembling and test firing pistols on my first day. Ha! I spent two months TIg welding handcuff chain links! S&W is the largest US manufacturer of handcuffs. I did eventually get to do what I wanted, but I had to pay my dues first. It was all good experience. How is IT treating you today? Tolerable I hope. Have a great day, and an enjoyable weekend!
06-13-2008, 06:13 PM
Pizza....Did you pick the slice that had the most cheese and was a bit more golden brown than the rest? I love brown just on the verge of burning the cheese, cheese.
Metallic..That taste would be like sucking on a coin all day..ewww. Sorry you had to go through that.....icka. yes, I have tasted a coin here and there..even chewed on gum wrapper foil inadvertently. Yucka..
IT has been kind to me, actually the nicest in a spell. I had went down for a 36 hour nap, an early evening two nights ago. Ah, much better...
I was in Orlando in the mist of summer...July and August. Even the tops of my hands perspired and I never dew up..well, until IT made his presence unbeknown to me. Just appeared and decided to make me, my body IT's home..Squatter.
I've TIG aluminum...ever chase a ball around a sheet? LOL...like Mercury...Too hot burns a hole, too cold puddles like mercury...
Enjoy the weekend too...Let me know how Monday went...
You like pizza the same way I do! When I order a pizza, I ask for it "well done", meaning I love the brown almost burned cheese. Thin crust, x-tra cheese, pepperoni and bell peppers is my favorite combination. Welding aluminum. The welder at my shop was really good at welding aluminum, and titanium. I used to manufacture sound suppressors for the DOD. Those things are long tubes you see mounted on the muzzle of a firearm in the movies. The real ones have a couple dozen baffle discs that have to be welded inside the tube, all the way around. Lots of welding in a small space. Get it wrong, and you either get a bullet strike inside the tube (bad), or it explodes from the pressure (really bad). I built an electric device to hold the tube and rotate it so you could weld as it turned. I ended up patenting the thing and and selling a bunch of them. Funny how things work out. Did you know you had lupus while you were in the Navy? My diagnosis was about ten years after I got out of the Army. I think I had it then though. I always had weird symptoms and inflammation. Terrible shin-splints from running all the time. Constant plueresy and rib pain/costochondritis. Never could figure it out, it would come and go as it wanted to. Looking back now, it's all pretty clear. It's really strange that there is a cluster of people with lupus in the Arizona town of Sierra Vista. I was stationed at the Army Intel Center at Ft. Huachuca, next to Sierra Vista. Makes me think there is an environmental trigger, but, my mother has lupus, so there could be a genetic link for me. A big mystery. You mentioned you were Air Traffic Control. Is that a job you would do on a carrier? Or was it on land. We have a base here where they fly P-3 Orion Anti-Sub Warfare planes. There are a bunch of Subs based at Bath, and they run exercises all the time. Neat stuff. Gonna try to get out on the water tomorrow. Going solo with my Kayak. The weather is perfect here. 60-70 daytime, and a chilly 40 at night. I like cool nights, they make for good sleeping. Glad to hear IT is leaving you alone for a bit. Take it anyway you can get it! When do you get to meet your father in law? Must be exciting. Well, gotta run for now. Have a great day.
06-14-2008, 04:52 AM
I too am a veteran. I served 5 years on active duty in the Navy as a Corpsman. I was in the reserves right at the end of my tour of 6 years when I found out that I have SLE. I had a service break of several years before I went into the reserves. I found out that I had Lupus in 1996 and I had 6 months left in the reserves. Well thinking that I was doing the right thing I let the reserves know that I was diagnosed with the Lupus and they rifted me for it big time. I had symptoms the whole time that I was in the military and tried to get answers for all that was happening to me, but they said they could not find anything. I am now nearing 50 years old and the doctor tells me that he believes that I have had it since the age of 5 years old, but like you the symptoms would come and go and as time marched on they got steadily worse. I would be willing to bet that there are quite a few service members with Lupus that don't know that they have it. I have a younger sister with Lupus too. This makes me believe that it is inherrited. Well I just thought that I would share this. Good luck and hope that you are feeling better. God Bless.
There are quite a few veterans here. I was in the Army 2yrs Active and 4yrs reserves. I was a tank crewman on an M-1 Abrams. I later worked as a civilian for the Dept. of Defense. Had to retire far too early, and now I'm on full SSN disabillity. I still get residuals from a couple of patents, so I manage OK money-wise, as long as I budget properly. I was 36 when I got the SLE diagnosis, and I'm now 40. I think back to all the odd symptoms I've had in the past, and I can now see a pattern. Constant problems from joints to connective tissue inflammation, and painful breathing due to pain in my ribs and costochondritis. I figured all the aches and pains were form all my recreational/sports activities and from a few broken ribs earlier in life. But I started having terrible rashes, and lost a couple of patches of hair, alopecia arreatta, on the back of my head. Those patches and the rashes got me doing some reading, and bingo, Lupus just jumped off of one of the pages in a medical journal I was reading. My symptoms were consistent, my mother has Lupus, and sure enough, I had an ANA and others various tests, and got the diagnosis. I think I had symptoms all the way back into my high-school days. Hindsight is always 20-20, but at the time, it was just baffling. I'm thankful to have a diagnosis though. Too many of my friends here are in limbo with no diagnosis, but with obvious symptoms. I started having other, really alarming symptoms about a year ago. Weakness on my left side, optic neuritis, tingling and the worst case of dropping items I was holding. Found out two months ago that on top of the SLE, I also have MS. What a deal. Two for one! Well, I'm certainly not happy with the news, but I learned that with Lupus, getting pissed off and "stewing" in anger and questions of "why me", will help nothing. So, I just had IV methylprednisone treatment for the second time, and despite some nasty side effects, it is working. I'll take a little improvement over none at all any day of the week. So, life keeps on rolling along. Anyway, when did you first get your lupus diagnosis? What symptoms were the ones that told you something was wrong? I've done the IV steroid treatment, and plaquenil with naproxen for inflammation has kept things somewhat manageable. What meds do you use? Just curious. Always interesting to compare notes.
06-14-2008, 06:02 AM
I too ask for well done. I also ask for extra sauce for the leftover meal the next day. Keeps it moist. I usually do an olive oil, garlic base...cheese, tomatoes, spinach, shrooms, olives and sometimes a bit of sausage or pepperoni if I feel like a bit of extra grease and salt...
While I was in the Navy..I remember being overcome by extreme fatigue, absolutely no energy but I prodded on. Sought out medical help from Tripler aka Crippler and I was diagnosed as having Chronic Fatigue Syndrome and I remember in quotes on my record "eats little, vegetables only". I thought it was from my ED..
Nothing was given, no medication just the label...Every since then and to date I get that same run down, drained...exhausted feeling except now it lingers for months...known now as a flair without Escape perfume by Calvin Klein..
An inventor too....wow...cool. That would be a frightening weld job, too much responsibility for me...
AC can be land or sea. Me, being a woman there was only one ship that did CATC with women on board and that was the USS Lexington, aka Lady Lex. They reserved that billet for the ones who were in the process of making Chief..needed that experience for making that rank..
So, I did it on land only...but moving up the ranks to E-6 I still had to know CATC, so I learned by studying words only from our rate books and checking out information from the secret locker...
I welded on nuclear subs as an HT, and one of the planes I controlled, guided as an AC was P-3's with ASWOC....
Enjoy the water tomorrow...be safe. Me, today...plant scouting, lunch out. Being a domestic technician with IT I don't do too much...though I'd love to. I just play it out in my dreams...sometimes I can feel me twirling in my high heels dancing....
Have wonderful day too...
06-14-2008, 06:24 AM
I was diagnosed with Lupus at the age of 36 years old. I started having problems with mouth sores at the age of 5. At the age of 7 I ended up getting carbuncles all over my lower legs in the shin area. Those finally cleared up. At about the age of 10 I started getting sick from the sun. I mean I would get horrendous headaches and hurting joints. My family did not know anything about Lupus and unfortunately they did not take me to the doctor. The claimed that I was just faking it to keep from playing outside or to cut school. Time traveled on and at the age of say around 14 I developed a horrible skin rash on my hands and feet. It was a blistery rash. Time traveled on. The symptoms would come and go, so I would just think well maybe I am doing something to injur myself that is causing this. I went to sick call a lot in the Navy to no avail. Well finally at the age of 35 I contracted the chickenpox big time. It seems like right after I got over that mess, my health took a serious nose dive big time. That is the first time that the malar rash made it's first appearance, I had costal chondritis, pleuresy, reddened swollen joints, serious hair loss, I am taking major bad spots on my head, sores all in my mouth and nose, serious stomach pains like you would not believe, constant diarrhea, pain all up into my neck which was from my heart involvement is what they tell me. I had constant headaches and boy if I went out in the sun for more then 10 minutes I would become dizzy and sometimes pass right out. It was terrible. Made several trips to the doctors and finally got a doctor that would listen to me that had been a nurse prior to going to med school and somehow knew a lot about Lupus. He literally saved my life. He diagnosed the Lupus and immediately sent me to a good Rheumatologist. The Rheumatologist took a look at all of my labs and said that I had the most classic case of SLE that he had seen in years and that it was very well defined. The Lupus was attacking my heart muscle and causing me to have a heart arythmia. He put me on high doses of Prednisone, Plaquenil, Dapsone, Indicin and I forget right now what else he did, because it has been several years ago. My body eventually rejected the Dapsone, so he switched that to Imuran. He eventually tapered me off of the Prednisone. I am now on Plaquenil, Sulindac and Imuran. They seem to be helping me a lot. I have flares every now and then. I am in a flare now and just completed a round of Prednisone and antibiotics. I still get the rash on my feet. My hands have cleared up for the most part as far as the rash goes. I also have Sjogrens with all the mix. I have tried several times for disability, but I always get turned down. Well that is what is going on with me.
Nice to meet you and want to talk more with you. God Bless and hope that you get to feeling better.
I don't know if inventor is the right word. I prefer the term Creative Gizmologist. I used a gearbox, motor, and control from a Lionel Train Engine to make the gadget. My welder, being the guy who used it all the time refined it even further, and made more user friendly. It was noticed by a customer touring my shop who was in aerospace manufacturing, and could see many different uses for our gadget. We ended up building 6 of these things for McDonnel/Douglas Boeing. Someone there decided it would work in automotive/motorcycle applications, and it really took off. Lionel trains are too pricey to be tearing apart, so we ended up producing the gears in house, and got the motors and control systems from commercial sources. So it was really funny how it evolved. I split the rersiduals and various patent and other rights with my welder, as he was the one who made the thing marketable. It was all great fun. I miss those days. Oh well. Your pizza sounds good! I'd have to leave off the shrooms though. Not my thing. I love sausage topping, but it doesn't love me back. Heartburn city. You know, I was constantly exhausted in the Army, despite the fact that I was in top physical condition. I thought nothing of it at the time, because we were running 5 miles every other day, and doing all sorts of physically demanding stuff. But after talking to some old Army buddies, they always thought there was something odd about my symptoms. Like there was something going on health-wise, but they weren't sure what. Well, they were right. My C.O. mentioned to me more than once that the extreme fatigue he saw in me wasn't consistent with a person who is in shape, motivated, and enthusiastic about their job. I made no sense. Well, it does now. Oh well. Glad to hear you are having some good days Oluwa. I'm doing pretty good too. Talk to you later.
06-14-2008, 06:41 AM
I forgot mention in the previous post that I am also taking Vitamin B12 shots for PA (Pernicious Anemia) and viatmin B12 deficiency that presented itself by me having a very sore fire red tongue. That has finally cleared up, because of the shots.
06-14-2008, 07:59 AM
In reading your post just now I noticed how you got really sick after the chicken pox. I also started getting sick after a very serious virus that attacked my lungs while I was pregnant. I ended up in respitory failure, on life support - all at 8 months pregnant! But, it was a few months after that when I began to get symptoms. One of the theories about any autoimmune disease is that it is triggered by a serious virus. Ithink it weakens your immune system and everything goes haywire. Ahh interesting.....
06-14-2008, 08:29 AM
I firmly believe that any virus that hits you if you have any problem with your immune system will make the situation at 100 times worse. I know when I told my Rheumatologist that my health took a serious nose dive right after I had gotten over the Chickenpox, he wrote that down on his note pad and was very interested. I can't remember where I read it, but there was an interesting article about people with Lupus whose symptoms were exaserbated right after gettting the Chickenpox or other serious viral infection. It is interesting that is for sure. When you see the Rheumatologist you need to make sure that you let him know that you had a serious lung virus and what it did to you and how your symptoms got worse after that. Let me know what he says ok.
06-14-2008, 08:52 AM
Maybe you need a bit of Protonix for the gut? Shame not to be able to enjoy a bit of sausage now and then. My burning seems to have subsided a bit...times it feels like it is gone, then I burp...and then I sizzle a bit. I am almost afraid to say something is better, because something else erupts or falls off.
Yes, I dragged my feet many days one would think I would have worn the soles off my boondockers in the Navy...was fit, like you...others thought something was up. Think, I was a PT instructor on base. Now that is funny, I can only churn out 5 minutes on the treadmill, and tread water and back stroke for 20 minutes...
Before I went in the USN...IT related I would get hives, dinner plate size, rashes and the inner nose hole ulcers. Thought they were cold sores. Gawd, those were awful...couldn't see them but the were so painful my eyes would cross and tear. Felt like I looked like Lucille Ball when her fake nose caught on fire while lighting her cigarette...
I think as we get older, with IT or not...we always miss "those days"....and I suspect when we hit our 70's will miss these days like when we became an adult we missed the tree fort and pond swimming days..."Gee our old LaSalle (68 Nova) ran great. Those were the days." All in the Family.
We lived almost 40 years being crazy, living without thinking, taking our time for granted...now we can live the next 40 being crazy, but thinking..being aware...living in this day, this moment and really enjoying when we can. Just really inhaling, savoring it all....
It is going to be a beautiful day for you tomorrow...solo...on the water..puff clouds in the sky, sound of the water, the sound of your breath and the sound of your heart with each stroke...making its own music rhythm ...free, alive...enjoy.
Happy Saturday..it is Saturday isn't it?
06-17-2008, 07:08 AM
Are you kayaking around the Cape of Good Of Hope..
Hope you are having a delightful day..
Good morning Oluwa,
I had to turn around and head for shore after it clouded up and started thunder and lightning. Got my boat back up on the rack, and hopped into the back of my truck to wait it out. Ended up going home, and it has not stopped raining since. It's been really cold here for late spring. Only in the 40's at night, 50's during the day. Dad and I have been itching to get back out on the ocean with the big boat. I'm hoping for a sunny day this week. I don't mind the rain though. After living in Arizona, where it's sunny for 300 plus days a year, rain and clouds are a welcome change. Been trying to get used to the long days in summer. In Maine, the sun sets at 9:30 at night during summer because we are really far north, and right on the Atlantic time zone line. In the winter it gets dark at 3:30 in the afternoon. It feels like it's only 6 or 7 o'clock in the evening right now, when its actually much later. Messes with my sleep patterns. But, long days mean you can do alot too, so it's a tradeoff. How are you doing today? Is the weather nice down in your part of the country? Rather ironic that you were a PT instuctor. I was a land navigation instructor for awhile, that involves a whole lot of walking on top of all your regular Pt and runs. I find that rather ironic too. A ten mile hike, was nothing. Now, a single mile kicks my butt. Gotta go feed my cats, and give them their twice daily play session. They are sitting here staring at me. It's three against one, so I'd better give them what they want. Talk to you later, have a good day.
06-17-2008, 10:54 AM
Oh yes, we have beautiful weather. Yesterday was hot and humid..today is just right...uttered Goldielocks. I'll send my good weather you're way..we good use a bit of rain...
I swam, I read, I ate, I shopped so it has been a leisure and an enjoyable day. IT is behaving, keeping in the shadows but still letting me know s/he is behind me...
Yes, I was a PT instructor, for the ATC students and at my duty station the PT instructor for those who failed the PT. My very last PT before I departed took me 16 minutes to finish 1.5 miles...16 minutes and 15 seconds was the maxed. Before I was 10 minutes, give or take 15 secs...
I paced myself....and did the minimum, sit-ups. I think it was 25 and here I used to turn out 200.
I didn't get the outstanding blurb regarding my fitness on my discharge eval. I was just excellent... I remember because I remember the feeling... like a failure...
I petered out...
Then I was back in the game of life for about five years after I got out, had a few bouts where I would miss work to sleep. I started to melt completely and finally IT won and here I am, arm wrestling with IT another round...ding ding..ding..take that with Plaquenil, take that with sunscreen...and that with rest...
Enjoy the afternoon..toodles.