Hello All who may stumble across this. I decided to start a blog about men, and for Men who are LIVING with APS. I am going to use the word LIVING instead of 'suffer with', because like many, I am determined to live my life the best I can without being completely defined by my illness. I am destined to co-exist with this disease. So I accept that fact, and make the best of the good days. I started this blog because I don't believe there is a place for MEN ONLY. No offense to women with this disease, I just wanted a men's locker room. A place where we can parade around as just the guys. A place where men can express their experiences, and their frustrations. There are several other sites and most dominated by women. Mainly because the largest percentage of this disease is with women. Men are quite the minority. I think the number is.... men compose 10% of those with APS ??. I wanted a place where guys deal with guy stuff. In our society, Men are expected to be strong & dependable. This is part of our male identity, as well as an expectation of our children, spouses and other family & friends. Making a living and providing for our families are a big responsibility, and we are counted on by many. We feel compelled to honor these expectations in the face of dealing with this disease. Some days it is difficult to place one foot in front of the other. Most days we hit the wall with debilitating fatigue. Add any other health issues on top from a cold to the flu, clots, and the battle becomes even more dire. Women are welcome to visit. Maybe in reading our thoughts, you will become even more supportive of the Men you love. -Sincerely, Carson.
Note: Posts are listed in chronological order. If you want to skip down to the most recent post, hit your "end" button on your keyboard if you have one, or just scroll down.
I am 44 Year old Married man living in Washington DC. I was diagnosed with APS a couple weeks ago after suffering with a DVT of the right leg for well over a year brought on by surgery. My doctors told me I had this and then said there was not much they could do toher than continue me on Coumadin. I have found very little on line and I could use some help getting my head wrapped around this. There seemed to be no real concern from my doctors. This is perplexing since I work in a very high risk field. My impression was that they diagnosed me (after 18 months), I should stay on coumadin, and go home. I am afraid to tell my employer because I worry my career will come to an abrupt end. I am very active and I know what you mean about living in a fog, so what next?
ReplyDeleteDave
Dear Dave, I had a whole detailed message, then lost it trying to get my password changed. I'll try again. First, welcome as the first other man with APS has found me. We are the minority. It's late, so I am going to be brief, but will come back this weekend with more energy and brain power. I have been living with this for about 8 years now. I know how you are feeling. I know it is a bit unsettling right now. But you too will find your way, one day and one step at a time. APS is now a life companion, like it or not. And you will find a way to co-exist with it. I have come to be thankful that I have this, and not some cancer that will take my life in a not too distant future. I am going to go for now but will be back. Leave me a note if you get this message. -Carson.
ReplyDeleteHi Carson, I'm Mike.. stroked in July and November 2002, diagnosed at that time... but that's another story. Stroke effectively took my vision, ending my career, and after the third stroke, doctor wouldn't let me even work part time. I've had a total of 6 now, but have been "stroke-free" for two years, think that's a new record for any sort of APS related neurological activity for me. I am an avid motorcyclist {now ride on the back seat), love to travel, and in VA blind rehab I was taught how to make/turn custom writing instruments (pens and pencils) from wood and other materials. I live in Phoenix, but was just up your way in August... well, Portland, OR. Before this turns into a book, I'll close for now... but say I'm glad to see a guy set up a place for us to talk.
ReplyDeleteHi Mike & Welcome. Boy, you know how they always say that there is always someone with more challenges than yourself? Well, it is true. For me AND for you. I really am finding myself Thankful that I have what I have left. As we both know we are even lucky to be here. And unfortunaetly, with APS, we don't know what tomorrow will bring. Maybe that is the hardest part for me, not knowing will I stay at this level now? Will I continue some improvement, and how much? OR, will I face complications of the rare catastrophic case of multi-organ failure. The more research I do, the more I become aware that I am so lucky to still be here. As frustrating as here can be, it is all I have. So I'm going to hold on tight to it, and give thanks for another day. 8 years under my belt this month. I think I'm going to make it. Thanks for the response. You are #2 to my blog. Please come back, kick it back, and rest a while. Your kindred spirit, -Carson.
ReplyDeleteHello...My Name is James (Jamie) R. Colombo.
ReplyDeleteI live in Lake County, Illinois. I am a 53 year old male. I was diagnosed with APS in March 2002 after suffering 2 strokes. I also have Polymyositis, Vasculitis, and Arteritis all being attributed from APS. I am on 6 mg of Coumadin. Not currently working have been on SSDI since this past March. It is so great to have other men in the same boat as me. Take care....Jamie
Hey J.R. Colombo !! I really dig your name. Some new info for me. Have never heard of Polymyositis or Arteritis. And 6mg coumadin? Whoa, that's a high dose. Stay clear of sharp objects, or any accidents. I was going to tell the group I do still work full-time. It isn't easy, but I somehow do it. Luckily, I have about 5 weeks vacation a year, and use it up a day or 2 here and there when my health acts up. It coincidental that most of those who posted were diagnosed around 2001-02. Wierd. I'm really glad I got this blog going. I already feel less alone out there. Knowing there are other guys who deal with this also. Come on back and let's all unload here. When we have a good week, or a bad week. Let's all know we can come here and vent to other guys who completely get it. I am so pleased to see the participation here. Brothers in arms, -Carson.
ReplyDeleteTo all fellow men, has anyone got the H1N1 vaccine? Does anyone have an opinion? Most Dr.'s would say that we definetly qualify because of our condition. I am planning on getting it when my Dr. gets it in. I always get the seasonal flu shot, and have dodged it almost every year. 3 years ago I caught something and I was seriously ill. It started with flu like symptoms, and then into pnemonia. I was off work for 14 weeks. I was in the hospital, released, then re-admitted after 2 weeks sicker than ever. I came as close to biting it as I care to get, until my time does eventually come. They thought for a time I had Legionaires, but testing finally came back negative. So, they never knew for sure what I had. They then proceeded to bombart me with every antibiotic known to man thru my IV, and something finally took. They didn't know what I had, and then they didn't know what drug finally took. Way long story short, I don't ever want to go there again. It is too close to the edge, and it is such a steep hill to climb coming back from it. I am a maniac handwasher these days, scrubbing on every break like a surgeon going into surgery. Lets keep our finger crossed, and sterilze everything to death. Good luck, -Carson.
ReplyDeleteHere I am, it is my Thursday night of my work week, and I have run out of steam. Even though I work full time, I never make it all the way through without crashing physically first, and then mentally. I like to deny my reality, and push, push, push. But it always comes up to bite me in the butt. By tomorrow night Saturday, (which is my Friday, I work Tues-Sat), I will be a complete pile of crap. I will then spend most of Sunday in bed, then on Monday I will get up and get something done around the house. Then the grind will begin again. How I wish I could work 5 or 6 hour shifts, 3-4 days a week. That would be my perfect world. I would balance work, home duties, play time, and not be completely wiped out. Maybe someday. -Carson.
ReplyDeleteOk then !! Where are my APS bro's? If you come back & visit, leave a short message and let us know how it's going. Good or bad, this blog is for us to be able to vent if we need to. We all are in this same damn boat. Some of us are sailing in a troubled sea. Others are coasting on smooth waters. Let's be here for each other. We are a select few. And only us can fully understand the challenges, and triumphs we all face from day to day. Personally, I'm having an ok week. After 2 nights of only so so sleep, I'm going to turn to pharmaceuticals to make sure my 3rd is smooth sailing zzzz's. That has become my pattern. No more than 2 crappy nights sleep, or the fatigue can bring me down. Best wishes brothers. -Carson
ReplyDeleteHello Guys. Hey, I was wanting to ask all of you a question. Does anyone else get flareups of horrible body aches. Off and on, I will ache in every joint of my body. From my feet, knees, hands, or anywhere else it crops up. It comes on suddenly, and goes away just as fast. I'm not sure what causes it. Flare ups usually last about 24 hours or so. Feedback please !! -Carson.
ReplyDeleteJust a 'visiting note' from Tim in the UK. When I get a moment I'll add some comment about my experiences of APSL (Hughes) over 30 years or so.
ReplyDeleteI am up way too early, checking for new input & so far a little dry streak. Thats OK.... I decided to go ahead and post anyway. An online diary of sorts! I am off for 5 days, Sun-Thursday. I spent my usual Sunday in bed all day. I find I really need a completely down day after a 40 hour workweek. I give it to myself because.....well I am working full time while managing a chronic disease! I am wiped out by Sunday 99.999999% of the time, so I have given myself a day of rest every week. I always have a list a mile long that NEVER gets finished anyway. So I have learned to take care of me. I have to. If I push it to far, like yesterday, I start to get vertigo, and that feeling when you feel like you are coming down with something. Patty & I came home after doing too many errands, and she shoved me into bed. Sometimes she is my only voice of reason. She is so supportive of my condition, with the exception...of wanting to strangle me when it comes to my brain issues. Hey, a loved one can only take so much !!!!...I understand though. I know if my compromised brain condition drives me nuts, it must REALLY, REALLY, drive her insane sometimes. Patty, I love you honey. Thank you for taking care of me, even though you have health issues of your own! I am commiting to getting going on an exercise program. I have been so bad this fall. I started to DVR Gilad Bodies in Motion. I can commit to a half hour a day. I have to, because I know I need it and it will make me feel better. Going to put the blog down for now. Osta-la-veesta baby. -Carson.
ReplyDeleteTo answer your ealier question, I had the swine flu vacine this week, the seasonal a few weeks previously. I've had the seasonal one for many years. Did wonder about both this time around as I have very recently had a heart op procedure wghich involved inserting what is known as an Amplatzer occluder device (check Amplatzer through Google) to close hole in the heart (Patent Foramen Ovale - PFO)Medics were happy for me to have the shots despite the recent surgery .
ReplyDeleteThe PFO condition is something I've had for 62 years by all accounts and until very recently, despite all the examinations known to man, it had evaded diagnosis. It was found this time following investigation because of a number of TIA's a year or so back. I took a lot of advice about having the closure done because the combination of PFO and Hughes is not a common one. That said, having had an appointment with the Prof Hughes as part of my decision making, I think it will turn out that a good number of Hughes patients who have strokes/mini strokes, will turn out to have a hole in the heart!
It may make some feel better knowing that there is at least one male with Hughes who has had it and been on warfarin (coumadin to many of you) for over 30 years. Yes it has obvioulsy affected my life but I still have a pretty good one.
Wow Tim, some pretty interesting info you have there. Hole in your heart? So you have actually seen Dr. Hughes over in the UK? That is pretty cool. What year were you actually diagnosed? Sounds like you are living proof that "Living with APS" is what we do. Hit me back when you have a chance. If you have a chance, give Dr. Hughes this blog address. Maybe he would have some input for us. -C.
ReplyDeleteHope all my APS brothers have a great, relaxing TG day. "Don't sweat the small stuff- and it's all small stuff." Love the book. -C.
ReplyDeleteHi Carson,
ReplyDeleteA diagnosis date is a bit difficult as my first experience of what would now be called a Hughes or APS sympton was in the early 70s before it was put together and knownby either of those names. I suspect the first sign was a Raynauds sympton of cold feet and a black toe but within a year or two I had a very serious bout of Pulmonary Emboli which was close to being fatal as nobody knew what they were dealing with or how to teat me. In those days you ended up taking lots of steroids (and ballooning) I didn't hear of Hughes Syndrome until about 9 years ago when a new nurse doing my INR asked why I took warfarin to which I replied Lupus Anticoaguant. I was due to see a new consultant the next day and I asked him if Hughes was the name of my condition and he confirmed that it was.
Previously I had lived in Oxford and had an exceptionally good consultant and he had seen me through many difficult times with what I always thought was a bit of a mystery disease. Learning that it had been given a name was a major development for me as I had something to research. I found that practically everything I had experienced in terms of symptoms, was a known feature of Hughes. It was such a relief. I wasn't imagining things or a hypochondriac! The few other things that weren't explained have recently been largely explained by an additional diagnosis of Sjogrens syndrome.
When I did see Prof Hughes as a patient (I had seen him twice at Hughes Syndrome Foundation events at St Thomas Hosital London)he was delighted that I had my own Coagucheck machine (my second) as he considers close monitoring of one's INR as essential. I check my blood every other day.
By the by, In the twenty odd years that I had 'Lupus Anticoagulent' as it were, I had never met or heard of another male with the condition. Once I joined the Hughes Syndrome Foundation I heard of another couple and indeed met two or at one of our then annual meetings.
We are a very small special group!
Hey fellow men! I finally got a call from my Dr., my number was up to come in for the H1N1 shot. So, I went in before work, got the shot, no big deal. Felt pretty much like the Flu shot. At first anyway. I tried to keep my arm moving to keep the soreness at a minimum. I worked all day, and started feeling the symptoms as the day progessed. I increasingly felt more and more flu-ish as the day went on. I drank some sprite to help my stomach and had no appetite. Now in bed tonight I just ache everywhere, but especially in my hips for some reason. I did expect to feel a little crappy from it. I understand it is different than any innoculation I have ever had, so it makes sense my body might react. I also understand it takes about 2 weeks before I have any real protection from H1N1. Anyone else had the shot? Let us know. -Carson
ReplyDeleteH1N1. My body might react? OH YEAH, it did. I continuosly felt worse. By morning it was no question, I was calling in sick for work. This morning I still didn't feel great, so I called in again today. I called in at 7am, went right back to sleep until almost noon. Back to the grind tomorrow though!
ReplyDeleteHey! Where are my APS peeps? Come back. Where ever you are!....anyway, I went to my Doc today to update my FMLA paperwork. For those who do not know, it stands for....Family Medical Leave Act. In other words, It keeps me from losing my job due to APS. I still work full time, and luckily have about 5 weeks vacation per year. I end up using 3/4 of it a day here, a couple days there, when my APS or an illness complication (flu, vertigo, exhaustion....) hit me hard. If not for FMLA, I know I would be on Disability, and I'm sure someone could tell me how that would be. Everyone enjoy the Holidays! -Carson.
ReplyDeleteHi Carson,
ReplyDeleteA couple of comments about Sjogrens. It was a relatively short time before visiting Prof Hughes that I started having trouble with dry eyes, maybe a couple of years or more but not a longstanding issue. Ironically they were particularly bad when I saw him, maybe the London air didn't help. They are also bad after any lengthy drive. I now use artificial tears to help. I have experienced a dry mouth for many years and did think it was a consequence of codeine phosphate but now realise it is more likely Sjogrens. Of late I have also had a real problem swallowing at times because of the dry mouth. My GP (general practitioner) thinks this is also Sjogrens and has given me the foul tasting artificial saliva to use.It helps but what next I wonder? (I now think my dry ears are probaly down to it as well)
I would have been in my late 20s when I first had problems that I would count now as part of Hughes.
Since last writing I have now been seen at St Thomas' in London, the unit that Prof Hughes worked in and which houses the UK NHS centre of excellence on Lupus and Hughes/APS.
I have come away from there having been seen by a consultant who understands where we come from, a doctor who doesn't need to be convinced that we experience various symptoms but knows they are part of the APS package.
A letter has gone from St Thoms to my surgery setting out suggested courses of action for certain situations (like Clexane injections if my INR falls below 2.0) and another drug to try (name gone for the moment) if the Sjogrens gets worse. I on't have to argue the case, St Thoms have made it should it needed. (It also helps GPs understand APS and its treatment)
Over the years I have had a number of strokes and quite a few TIAs. (I'm told the difference is that its a stroke if the symptons last more than 24 hours) A couple lasted for several days (the worst occured on a flight from Greece) and I ended up in hospital, others were quite minor and I wouldn't do much about them. They can sometimes tell from CT scans how many youve had - I had three in a day about 18 months ago. I have no residual mobility problems but they have certainly affected my memory and cognitive ability.(I used to hold a very responsible job which involved the rapid assessment of situations and deployment of appropriate responses- nowadays I sometimes even miss the obvious) I used to have an active and enquiring mind and got a couple of degrees quite late in life (including psychology so I understaood how the brain works)but struggle a bit with some things these days. It is particularly frustrating when one is having a reasoned debate with a bit of to and fro going on - I think of the challenges too late to use them!
Bess wishes to all for a happy and healthy Xmas
Tim
PS> I've had the H1N1 jab with no side effects - though now, many weeks after I'm suffering from a heavy cold followed by the usual chest infection
Those who do not suffer from APS/Hughes may not understand that our thoughts can be muddled at times. I have just realised that I repeated myself about having had the H1N1 jab- and that I didn't make a couple of comments that I intended to!
ReplyDeleteI sympathise with the feeling of exhaustion Carson. There are many days when I feel like going back to bed as soon as I have got up. On others, doing just the weekly shopping or similar exhausts me. Today I was shattered just trying on the contents of my wardrobe whilst deciding what of it to get rid of.
I can do more when I'm tired but I end up paying for it for several days after. If I take my boat out (it requires a bit of manhandling by two to l aunch and retriecve) then I'm a knackered mass of bruises for three or four days.
I'm not seeking sympathy though, just hoping to show what might be typical APS/Hughes for some of you, and negating any suspicioins that you might be, damn whats the word?, a hypochondriac or imagining things.
I think I'm quite lucky really- especialy as the most recent consultant described me as 'surprisingly well' after listing my symptoms.
:-)
Tim, Hi! Thanks so much for coming back to get into even more detail. It is so interesting to read what you have written, because it is so much a mirror image of my experiences. It is so strange to hear it coming back to me from the outside, because I am, and will never be, around someone else dealing with APS. Starting with Sjogrens, I have never been diagnosed with it, or ever heard of it until reading it here. But I definetly have very dry eyes. Can in no way contacts. Tried, suffered, no way. Then it leads me to think, is this why I am constant thirst that no amount of drinking can relieve.
ReplyDeleteCognitive difficulty. Don't get me started. It is so absolutely frustrating. My wife likes to not give me an answer sometimes. She says, just think about it, it will come....and she is right. But I don't want to wait and strain my brain for 5 minutes or more trying to remember something. But the more I do it, the more I improve. Baby steps.
TIRED. Oh man. Very seldom do I not feel tired, but I do push and push way too far at times. Then I pay. So I have learned pace. Never more than 2 stops after work, and usually only one. Then my first of 2 days off I spend in bed. Only the last few weeks have I got up on my first day of 2 off. Yikes. I am 49, so I am sure just the aging factor would be enough for most people. Crazy it is. I also consider myself lucky most of the time. Hypochondriac? No, far from it. Actually the complete polar opposite. I will push it too far. But my APS has a great system. I push too far, it pushes me down. I get vertigo so bad I become incapacitated. It's a great system. Thanks Tim for letting me vent. I don't usually , EVER! do it. Over and out for now........-Carson
Hi carson
ReplyDeleteMy name is Alan originally from N.Y
My story started in 1978 when I was 26 years old, I lost my speech
. The only clear word that came out of my mouth was God.
I was diagnosed with mental illness and send to psych ward.
they gave me HALDOL every time I opened my mouth.
This saga was going on for 3 month 3 different hospitals
. The 3rd hospital finely took a C.T and discovered that I had a stroke
Only in 1992 after 2 more strokes, seizures, Tia, kidney problem, and lung problem
A doctor in New England diagnosed me with ASL and prescribes cumdin.
Since then I had many internal bleeding including subdural hematoma
My last incident was 3 month ago when I broke my neck
. You see my life is not dull! my wife keep on telling me that I have “nine life’
PS It took me a long time to write this letter it not easy to come up with words.
I thank you from the bottom of my heart for starting the site for men only
Alan
Dear Alan,
ReplyDeleteThanks for contributing your story. I haven't had any vistors for over a month, but I was planning on an update entry. I must say, you have had quite a journey. I am amazed at the resiliency I have read among many of the entries. It does remind me to be thankful my health is as good as it is. As frustrating as it can seem at times, I feel lucky to be here. It is interesting to me that everyone's experience with APS, is as individual as each of us. I going to go for now, but please come back and vent your story. That was my intention when I began this blog. #1, a place for MEN with APS, among other's who know what we are going through. #2, a safe place to gather among our APS brothers. As I've said before, a minority within a rare disorder. Best wishes, Carson.
Hello all. I have had quite a couple weeks. I went down with pnemonia & spent a full week in the hospital. There were about 2 touch and go days where I wasn't responding to the mass mix of I.V. antibiotics. But I did finally respond and am crawling my way back. I got another whammy of news from the team of Docs taking care of me. I haven't quite got my mind around it yet. In fact discusssed it with no one except my wife. I was newly diagnosed with Lupus, on top of the APS I already dealt with. There. I said it for the first time. Lupus. I am trying to get my mind around it. What is means to me & my family for the future. I haven't even diven into researching it yet. I am getting myself a little time to absorb it. I know I will get through. I still feel lucky,(for some reason?)
ReplyDeleteI am confronted with this and not something instantly terminal. My future is a another big question mark ???? What will it mean for me? Any support is welcome. -Sincerely, Carson.
Hello Friends in APS. Here it is the end of March already. The grass is greening, trees budding. Slight warming here in Washington state between damp rainy days. And here I am at home still. I have not yet returned to work. From my March 1 post, you read I went down, crashed and burned. I was almost ready to go back to work and I crashed again. This time my renal system shut down. I was feeling worse not better and Doc re-admitted me to the hospital. I had seen my Doc earlier that day, and if I couldn't urinate by evening I was supposed to go to the ER. Of course I waited until 10 pm because I was determined that enough Gatorade or cranberry juice would do the trick......Nope. F---!....so my wife took me in, I think (if I remember right, and of course I don't so I'm going to guess !!)...let's guess about the 15th. I got to experience the male torture of the modern age....the CATHETER. I had never had one and I knew if wasn't going to be pleasant. It was worse than unpleasant. ADVICE: If you ever get one Insist on being sedated. I have decided that from this point forward. Ok, I admit it, I'm a weenie. But every blood draw, IV, or any other stick was tolerable compared to that. Enough of that. I got the repressed memory purged from my brain. Too long story short, I spent 4 days in and came home. I was weaker than when I was discharged before. I go see my Doc tomorrow for a game plan. I am getting up and around trying to gain strength back. Remember I still work full-time. I don't know how, I just do it. My plan is to transition a week half days, then back full-time. I also am convinced that I am living in a sick house. I think we have an unseen mold problem. I'm going to have a professional come inspect with their equipment. That is a whole other can of worms. That's my F-'d up spring in a nutshell. I'm going to go to a couple APS sights to remind other guys to come back and visit,(vent, gripe, whine..........share. That's what I started this blog for. A place to come and vent when everyone in your life has had enough of you. We men here understand each other. We are in a section of the same boat. Happy Sailing! -Carson.
ReplyDeleteCarson
ReplyDeleteYou have certainly been through it of late.Some of your comments made me, and I guess most fellahs, wince.
I hope thoug that you are through the worst and on the road to recovery.
Best wishes
Tim
Thanks Tim. Thanks for coming back around. When you have time, come back around and tell me and other readers how you have been lately. Yeah, I hope the worst is over too! -Kindred spirit...Carson.
ReplyDeleteHello all. I got good news today. I do NOT have Lupus. I am so relieved. Lupus on top of APS would have been a double whammy. I am so glad I didn't get too worked up about it until they knew for sure. I just wasn't going to waste the little energy I have, worrying about it until it was confirmed. I am slowly recovering from my latest APS, pnemonia and kidney battles. I not there yet but I am getting there. I'm starting back to work week after next, half days to start. Hope all is good for my fellow brothers in APS! Take care.
ReplyDelete=Carson.
Good news indeed Carson, and having a date to start back to work. As my Greek friends say, siga siga, (slowly slowly).
ReplyDeleteHow is everybody doing? I am still doing. Doing the sick thing that is. I started coughing again and getting a fever a night. Doc did another chest x-ray, and my pnemonia is starting to progess again. So I'm on my 3rd course of antibiotics. In fact I'm on 2 different ones. One of them I can't get down fast enough. The smell, taste....ugh. It must be the good one. This all happened last week. I am feeling a bit better. No temperature. I'm just taking it easy, and not over doing it. I vacuumed the bedroom today for exercise. whu-hoo. It took me 5 minutes, but at least I did something. I find it is too easy to over do it. And I don't know that's happened until I've already done too much. My Doc said another 4-weeks off. I guess I will definitely get some bloging done. Maybe some pittely tasks like organize my CD's in alphabetical order. Maybe go through my junk drawer. All be well ok? -Carson
ReplyDeleteOh yeah, I forgot. My kidney functions are all whacked out still too. Da. Like how did I forget that one? I'm being force-fed liquids by the taskmaster (I mean lovely wife). "You don't want to end up in the hospital again with that tube stuck up your D_ck do you? Ah....No. So I'm drinking like I'm drowning in it. Anyway. Hope someone will hit me back!
ReplyDeleteHi Carson
ReplyDeleteYour having a real rough patch it seems. Sorry to learn that.
Can sympathize with two elements, not knowing you've overdone it until too late, and having a stack of jobs to do!
Suggest that you follow the bosses instructions and keep taking the pills and fluids! I stopped arguing years ago!
Best wishes
Tim
Hey Tim,
ReplyDeleteBelieve me, I'm not arguing with the Taskmaster. She is on my ass every hour on the hour. I can't blame her though, she goes through a lot when I'm not well. Estrogen melt down, then gets on the phone with one of her sister's, then I hear tears. I am sure I would implode if something scary was going on with her. I'm just sick and tired of being sick and tired. Lot of computer time though!!
Thanks for the support Tim. I've been off work right about 2 months, and it feels like I keep going in circles. I sure hope the lastest meds take and stick. So far, so good. I went back to your post to me on Dec 19 to remind what you go through. How long have you been dealing with this? Got any wisdom for me, like good advice? Always open to suggestion. Take care. -Brother in APS, --Carson.
Well, hello all blog followers. I continue to be on the mend after about 10 weeks off work. Gaining strength every day. Thanks for the outreach. -Carson.
ReplyDeleteDear diary. I am considering my blog a seudo diary. Well. I WAS getting better for almost a week. After my last double whammy antibiotic tag-team. My cough is resurfacing as well as the searing feeling in my lungs. I do feel a bit better that I did. Still, something isn't right so I went to my Doc today to say....What the hell. My idea on the way there is I really need another chest x-ray. His idea is that I need a Chest CT scan. Ok, that sounds thorough to me. That's what I like about Dr. B, he is really on top of it for a General MD. He always refers to me as a challenge. So, I was planning to return to work around the 17th-ish, but now I don't know what is going on. I just want free of this damn crap. I think a lung-biopsy or another scope (had 2 in the past decade, they suck!)are just around the corner. Fun. I just need to be better. Please God. Just get me better. I don't need any bad news. -C.
ReplyDeleteHi Carson
ReplyDeleteChest CT sounds more useful than a simple x ray. Had one on my gullet a while back and incidentally seems to have picked up something on the lung which may account for my lower than usual lung capacity. If it ain't one tyhing its another. Hope yours is sorted soona nd you get some improvement.
Excuse the brief note- always too much to do.
Tim
Hello readers. Well luckily things are turning around and I am getting better. Slowly but surely. I start back to work next week. My Doc released me back for 4 hrs a day for 2 weeks, and then we re-evaluate. Slow go, but I am gaining strength. Just glad I am progressing and not regressing. Hope all is good with everyone else! -Carson
ReplyDeleteWell. I did 2 weeks back at work. Started getting more comfortable with new duties in the Marketing dept. working on the phone. I was just getting a groove going. Then this last week, my 3rd week I could feel my body going downhill. My lungs feel ok, but my stamina just dropped through the floor. I stayed home for 3 days, then went to my Doc. My kidney functions may be a bit screwed up again. My Doctor took me out of the game for the next 4 weeks. I feel relieved, because I was dragging and could feel my self going down. So we will see what happens. Hopefully I can bebound and get back in the game. -Carson.
ReplyDeleteIt's been almost a month since my last post. I am starting back to work on Monday, July 5th. I have definetly improved in the past week, and ready to get back to work. My Doc is keeping at 4 hours per day for a month. I really have to get back to full-time to keep my benefits at work intact. VERY IMPORTANT !! So here I go again. Wish me luck. -Carson
ReplyDeleteI am hoping a new brother in aps finds me (us) here. Steen from Denmark, if you find this, give this blog address to any other men with aps you may know of. Back to work, week #2 since my return. Damn, the weekend went so damn fast. One benefit of being sick, time goes more s-l-o-w-l-y !! -C.
ReplyDeleteI'm going to take the liberty of posting; Steen from Denmark posted on my Facebook page. I think he is the most distance I have communicated with another APS brother. Always remember we are NEVER alone in this. It just feels like it sometimes....
ReplyDeleteBetween You and Steen Jeppesen
Steen Jeppesen July 6 at 12:17pm Report
Hi Carson.
I saw your comment on facebook and discovered that there also are other men with APS. Though we are very few as far as I know.
I had my diagnose in 2003. Took a while for the doctors to find the cause of my problems.
Since it has been up hill for me, as the illness takes new turns. Like you have seen, it does take a huge effort from your closest family too.
Best whises
Steen Jeppesen
Denmark.
I read this joke on an APS site on FB. It's horrible, but I'm twisted enough to find it funny.
ReplyDelete-Here is a joke to hopefully make you laugh:
Three old ladies walking down the street,
A naked guy walks by and jiggles his goods for them ...
The first lady upon seeing the obscene gesture had a stroke
The second lady upon seeing the obscene gesture had a stroke
and the third lady couldn’t reach.
I'm so bummed that visits from my APS brothers has dropped off. I guess I have had a lot of visits and comments, so I am happy with that. I am continuing to work 4 hour days at a desk job at Costco. At first, 3 weeks ago, I could barely get through the day, then maybe shop for a couple things, and get home. Then CRASH. I know I wouldn't be doing this well if I was standing like I did previously. I see my the Doc again on the 2nd, & he told me last week he wanted to keep me at 4 hours for now. As much as I want to push myself, I know he's right. He is always right. I am really lucky to have a great Dr. like Dr. Banjanin.
ReplyDeleteI have a hard time posting, I have written comments multiple times only to have them vanish when I tried to post them. Let's see if this goes through, then I'll post up more...
ReplyDeleteHey it worked! Guess the gmail account helped. I am "gearing up" to head to D.C., I leave here on Saturday night. Taking the bus, I arrive Tuesday morning... Spend the week there for Blinded Veteran's Association national convention, then to Ontario to visit an APS friend, my "lil sis" for the following week. Then back to D.C. and then home, getting back here on Sep. 7th.
ReplyDeleteBTW, been fighting with stabilizing my INR the last 4 months after it being rock steady for about 2 years. Now it keeps climbing, they reduce my dosage, 6 weeks later it's up again. May get my third adjustment if it's high on the test they do on Friday.
Hey Mike. Welcome! You are a new vistor right? It's good of you to stop by. I had a dry spell for a while, of no vistors. So, give me some particulars. How old are you? When were you diagnosed with APS? How did you find my site? Just curious! I have had problems keeping my INR stable. I do try to stay away from those "green" foods that tend to create havoc with your INR level, because I have a really hard time keeping mine stable. Really low, then bleed to death high. My Doc gets kind of freaky trying to keep me stable. I take a butt-load of RX that tend to screw up my INR. How is your health? Are you able to work? You may have read I had quite the year. I was full-time, then my health went downhill in Feb. of this year. Finally got back to work half days about a month ago. Anyway, Welcome APS brother. Hope to hear more from you. Know this is a good place to visit, unload your frustrations if you need to. A place where we all know how it feels to have the APS monkey on your back. -Best wishes, -Carson.
ReplyDeleteHi there Carson...no, I'm not new. I first posted October 29th last year. Since then I think I tried about 4 or 5 times to post- I'd write it up and go to try to post it and it would vanish. Something about the account I was commenting as I'm sure. Since this works, we'll stick with it...
ReplyDeleteHey Mike. I went back to your orignal posts. Now I remember. 6 strokes, and vision loss. Oh yeah. Hope all is good. Come back around anytime you want to share, or unload on someone. All the best, -Carson.
ReplyDeleteHello followers. Well, Happy Birthday to me. Wow....50. This B'day feels different this year. Not just 50, but I could have very well not made it to this day this time. I must have more havoc to create on the planet.
ReplyDeleteA belated Happy Birthday to you Carson... hope your day was great! Settling back in at home, flew back Saturday instead of riding the bus. I was supposed to be home tomorrow, but Sheila didn't want me to ride the bus. Yesterday was my 9th Anniversary and it would have been our first time apart on the 5th of Sep since 2001.
ReplyDeleteHi Mike, Happy Anniversary to you & Sheila. We just celebrated 30 August 16th, I posted it on FB but it "slipped my mind" HA!, to post it here. Congratulations you guys, marriage is the biggest challenge to do it right. When we heard "for better or worse" did we ever really know what worse would be? The love of a commited partner who sticks it out through all the good, and all the bad, is a very special thing. I really don't know how Patty put up with constant stress of my rollercoaster health, and irritation of my forgetfulness. It drove me crazy, so it must have really drove her nuts. So is the journey of life.
ReplyDeleteI'm back and settling down from the Convention and Canadian trip. Sheila loved it up there, other than the weather. It was very hot and humid, hottest I've ever seen it there. Had a birthday a couple weeks ago, one more year and I become "senior eligible" for many things (55). On another note, also just celebrated Sheila's birthday, and right now I'm waiting for FeEx to deliver her R2D2 Droid 2 Verizon mobile phone, one of my birthday gifts to her. She is a HUGE Star Wars fan, and had been anticipating this phone's release for a couple months now.She was almost giddy Wednesday night when the order process finished and she knew she had one coming.
ReplyDeleteHey Mike. It's so cool to hear of an adult who can still get that child-like thrill over a new gadget. That is so awesome. Remember how amped up we could get as kids over just about anything? I am so jealous, but also so happy for her. U-2 sound like the coolest people. Thanks for stopping by. -C.
ReplyDeleteFriday night was GREAT! Her phone came in on Friday, when I went to bed at midnight, she was alternating between the phone and laptop (she got the laptop less than a week ago). I said "You coming to bed?"... of course she said "After a while." That's when I told her he was like a kid on Christmas morning. She agreed...
ReplyDeleteOn another note, I'm a Mac guy for the last couple years but am looking forward to the release of Windows Phone 7 next Monday. Sheila's son is a MS development guy, and has raved about it. He did about Windows 7 a few years ago and was right.If it's everything he says it is, I may be upgrading one of my phones in the near future.
Hey all. I've been a little checked out lately, so I haven't posted. A new APS brother found us and couldn't get his post to work, so he emailed me. I'm going to take the liberty to paste his message, and hope he can get his posts up. Welcome Brent !
ReplyDeleteHi Carson,
I wrote on the blog earlier but checked a few hours later and somehow it didn't go through. Do I have to sign up first?
Anyway, I'm a new blogger and found your site by doing an 'aps for men' search.
The stories on the blog are touching for the suffering the men are going through and the courage they show.
I had a blood clot in my left leg in 1968 at age 16, then again at 18 & 20 in the other leg and both lungs. That was 11-15 years before the good Dr. Hughes named the syndrome. Over the years I've had poor lung capacity, migraines, a leg ulcer and dry eyes that some of the other men have talked about. I didn't know I had a syndrome until I was 43 when a routine physical for a job showed aps related antibodies and a rheumatologist confirmed the diagnosis.
He said he should be putting me on meds but that since I appeared to be relatively symptom-free, to just keep doing what I was doing. The thing I was doing was the 'macrobiotic diet' and since I started it 23 years ago I have noticed better breathing and sleep, less dry eye, less blood sugar fluctuations, almost no migraines, normalized body weight and good and bad periods with the leg ulcer and almost no pain if I don't eat sweets. I almost hate to mention this positive stuff because of what the other men are going through but I also want them to know about it in case they want to investigate macrobiotics and maybe get some relief.
I will be glad to reply to bloggers with information if requested and I know I can learn lots too. I have never met, spoken to or exchanged writing with another aps human and am really just getting to know about this syndrome I have been living with for 42 years or more. (I'm now 58).
Thanks for creating this site. I appreciate your compassion, courage and humor in your writings.
Best to you and to all of our other aps brothers,
Brent MacPhail, licensed counselor in Asheville NC
Wow Brent. So glad you found us. Ok, let me see if have this straight. If I abstain from sweets (chocolate) that may help with APS symptoms? If that's the case, I'll have to think about that one. mmmm...chocolate,...aps symptoms...I sure do love my chocolate. I'm sure it's not that simple. On another note my friends, I've been dealing with some stuff lately. As you have probably read, I haven't worked full time since Febuary. I have worked part-time, starting at 4 hr shifts in a sit-down job at Costco. They have been more than accomodating trying to make things work for me. But I chewed through all my FMLA protection, tried to start back too soon, then went back out again. Started back working on July 5th and slowly building hours. I had just got up to 6-8 hrs a day (as tolerated), with 1 hr on my feet. This last week just about killed me. Every time I raised my hours per day, 4 then 5 then 6 then 6 to 8, it was killing me. Costco corporate policy came crashing down and they are not able to accomodate my health issues, so I have to go out on another 6 week leave of absence. I love my job, I am crazy about my Warehouse manager (awesome guy), I have worked almost 20 years for the best company in the world. I start sobbing in my Doctor's office today, telling my Doc I had no other choice than to go back out, and try to figure out what my future is going to be. Social Security Disability? Is that what I have to look forward to? I'm losing it again just typing the words. But I have to be real. It isn't about what I want anymore. I have been climbing this hill for the last decade, trying to life a normal life. But the more I climb, APS rears it's ugly head to knock me back down again. I admit with sorrow in my heart, that it may be time to accept what is, and not what I want it to be. My quality of life sucks trying to work full-time. I am left to just pray for the wisdom to do what I need to do. Life has always worked out before, so why lose faith now? Thanks for letting me ramble here. I'm just not ready to post this on my Facebook page. Pray for me APS brothers. -Carson.
ReplyDeleteCarson,
ReplyDeleteMy prayers and well wishes go out to you. Sounds like you've been a real warrior to keep trying to work full-time, pushing past the challenges. I admire your courage and spirit for life.
For what it's worth, for 12 years I shared an apartment with 2 musician friends in their 40' s who were on social security disability. One was still able to go out with me and make a few hundred extra dollars playing gigs, without being penalized by the gov't. Maybe you could get a part-time job as well to supplement the SSD? It's common for them to turn you down the first time you apply so be prepared for that. There is probably a state agency where you live that can provide case management to help guide you through the process for free.
Re. the diet, yes, it is a little more involved than what I said but it's not hard to understand when you read it. The basic principle is that the modern diet is an aberration and is responsible for many of our exotic illnesses today. A return to the diet of our ancestors that we have been following for 99.9% of our history, allows the body to relax and for the organs and systems to work at an optimum level and for natural healing to take place. I have met and known hundreds of people with cancer, heart disease, diabetes, arthritis, crohn's disease and many more, who were given little chance by western medicine and are living well today just by changing their diets. If interested, google 'macrobiotics' or 'kushi institute' in western Mass. and if you have further questions, ask me. I learned from a japanese couple for 2 1/2 years and taught at their school.
Also, since I'm a counselor, I have discovered something else that seems too good to be true but will likely reduce your emotional or physical pain considerably in a matter of minutes. It's EFT or 'emotional freedom technique' and you can learn it for free for yourself from 'YouTube' or other googled sites. Again, if you run into any confusion, I can help.
Your aps brother, -Brent
Wow Brent, my favorite word these days is Wow. Yes, I'm a little wierd. But not boring! Interesting stuff you have put out there. I am not against trying something new. I know what my current routine is doing for me. I had decided earlier this year, as I was still recovering that when I felt stable, I would open my mind to some "different" approaches than I am used to. I know what western medicine does for me. It is expensive, and I am a slave to it. I am on way too many prescription medications. Blood thinner of course, high blood pressure, thyroid med, + a half dozen other things. I guess I feel better if I compare it to almost being dead 7 months ago. But I am a slave to them. I really do want to open my mind to try new approaches. I'll take a peek at that EFT stuff online. I sat down at the piano tonight. I don't play so much anymore. My stroke took some of my ability, but more importantly, the spark that I had to begin with. I have some time this next month, so I plan to sit down a make some time to play. Well going to go for now. -kindred spirit, -Carson.
ReplyDeleteHello my fellow APS brothers. I haven't written for a few months, but I am still alive and kicking! I did go back on leave from work, but plan to return Feb 1. Gaining strength every day. Hope all is well with all of you. Happy Holidays & hope for a better New Year. -Carson
ReplyDeletehello
ReplyDeleteOne of these days I'm going to figure out how to make this blog recent pages first, followed by older entries thereafter. If anyone can give me hints please do! I start back to work 4 hour shifts, building back to full time in a month. That is the plan anyway. Wish me well, I'm hoping things go the way I want. I am applying for S.S. just incase they don't. -C.
ReplyDeleteHi guys want to join the club, I too have aps and have had two strokes that we know of. I was hoping to find information on stopping or at least reducing the dizziness and passing out that occurs. If anyone has had similar experiences I would like to know.
ReplyDeleteHi my name is tom and I live in Milwaukee Wisconsin, I am 53 years old and have had aps just over a year now. I have had at least two strokes that we know of and suffer from dizzy spells and passing out. I was wondering if any of your readers have these symptoms and what they did if anything to stop the dizziness. I plan on reading this webpage almost everyday
ReplyDeleteWell, I'm back at work. It's tough but I'm getting through it. I increased my hours each week, from 4, to 5, then 6, and now at 8 hours a day to full time. I actually suprised myself that I was able to get to this point. It isn't easy. I'm either at work, or I am in bed. Excuse my spelling here....but I started seeing an Endocrinologist, who had me try a cortocosteroid? Can't say it let alone spell it! Anyway, I think it has made quite a difference to help me with my stamina. Anyone had experience with this drug? My best to all my APS brothers, -Carson.
ReplyDeleteHello BIG T & welcome! I apologize for taking 10 days to reply. I had a spammer, so I added the feature to verify replies and forgot to check it. uh Da! Strokes cause me to forget way too many things. As far as your question about dizzy spells and passing out! Whoa, that doesn't sound good. Many of us with APS have to use blood thinner and I am sure you do too. Many things I've read about APS, we need to keep our INR between a 3 to 4 range.
ReplyDeleteI have heard of some even higher. I know I have problems with violent vertigo and/or temporary vision loss,( my sight grays over then slowly clears over 5 to 10 minutes) if my INR gets down to about 2. Most Doctors want our INR in the range of 2 to 3. I've never actually passed out before, but I have felt like I was going to. Anyone else in your family diagnosed with APS? Did your Mom suffer from several miscarriages? How are you coping? How did you find my site? -Welcome! -Carson.
hey Carson sorry to take so long to get back to you. do not know much about my family except my parents are both deceased, not taking warfarin, mayo clinic docs have me on fragmin injections.
ReplyDeletenot handling vertigo spells very well at all. came across your website trying to find answers to stop this dizziness and vertigo. good to know i am not the only one suffering, bad to know not much can be done about it.i just learned i have blood clots in my feet and need to see another doctor to see if we can do something about it. i am having trouble coping with the symptoms of aps. nothing is helping. glad i found you blog site.
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ReplyDeleteThis post is completely unrelated to APS, but I didn't want to put it on FB due to privacy. My coworker and friend at work, recently had to fly back to the mid-west because his Dad passed away. Someone at work told me, and I wasn't sure how long he would be gone. We are both 50, just a few months apart, and have some stuff in common. This last summer, he "made me" go to see a RUSH concert. I was still off work, and still really weak from my hell year of APS. It is one of my favorite groups, have seen them a dozen times, and was glad he made me go. On the drive down past Seattle to the venue, we had a lot of time to talk, and about stuff we hadn't in just passing moments and breaks at work. I confided in him that my Dad took his own life in 2002, with a self inflicted gun shot with a gun barrell in his mouth. Needless to say it screwed me up for quite a while. Anyway, he was back at work, and I come up alongside and wrap my arm around him and told him how sorry I was to hear he had lost his dad. I said, at least he didn't stick a gun in his mouth. He said, "yes he did." I said, "you're kidding right?" thinking he wasn't serious,.."really, he did." he said. Well, I lost it, to say the least. I have come a long way from almost 10 years ago. But I went right back mentally to where I was a decade ago. I was so sorry anyone else I care about would have to go through something like this. I'm at work, and I can't stop my tears for a good 10 minutes. This experience cured me of any selfish thoughts of taking my own life, that I had ever pondered in some of the low parts of my life. I never understood what a selfish act it is, until I lived it. I forgive my Dad now, and wished he had believed he had another option, but I guess he felt he didn't. I love you Dad. -forever, your son. -Carson.
ReplyDelete