There are many diseases out there that are often ‘labeled’ as a “man’s” or “woman’s” disease.  When that happens, those who don’t fit the mold can find themselves in a gray area where their medical providers or even those closest to them minimize what they are going through simply because they are the wrong gender.  It is difficult enough for us to accept what is going on in our bodies, so to have the added scrutiny by those we reach out to help us get through our experiences throws into the equation some very stressful emotions.  When we are ill, we need to work towards healing and not spend valuable energy into meeting everyone’s expectations.

 I am pleased to say that Matt, author of the blog Matt and Lupus , has graciously agreed to start offering contributions that come from a guy’s perspective of having lupus.  Matt shares the belief that getting through some of our health challenges may not be easy, but is absolutely necessary in order to find our true potential and pursue important personal goals. 

Welcome him here and be sure to visit him at his blog, as well.

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Back in April of 2009, I was at work and felt a pain in my leg. I thought I just pulled a muscle and that it would go away after a few hours. By the fourth day trying to ease it, the pain got too bad and I had to call off work. I returned to work for another four days and then, once again, I had to call it off.  I finally decided to go to urgent care and see what was going on. I felt that if I kept calling off from work like this, I could risk losing my job. 

The doctor took one look at my leg and said that I had a blood clot and I needed to go to the emergency room. I had an ultrasound done and they told me that I had deep vein thrombosis and gave me a lot of blood thinners. After blood tests came back, I tested positive for the lupus anticoagulant antibody, one of the Antiphospholipid antibodies that cause problems in our blood’s ability to clot normally.  Then they did further blood tests and checked for full Lupus* .  I finally received a diagnosis and have been on blood-thinning and immune-suppression medications ever since.  I went through quite a bit recently, undergoing stent surgery  to open up the veins in my leg and finally ended up getting not one but two stents.  I went through blood transfusions, rheumatologists, testing out medications and was still able to return to work approximately one month after the whole crisis began.

I’m happy to say that I’ve been able to continue working full-time, four ten-hour days and, although I have had to make some adjustments to how I get through my days, I feel like I am now in a more grounded position in taking better care of my health. 

So far not too much of my life has changed due to this illness other than taking a lot of pills every day and not eating as many salads keep the vitamin K level low in my system** . I’m sure it will get worse over time my body feels every day, but I do not wish to stop living just because it becomes difficult or frustrating.  Sometimes I joke about getting full just on my pills a day that I realized that there are many others that have it much worse than I do and I am thankful that I have some understanding of what they go through.  

I am currently planning on returning back to college at least online complete my degree. I’m looking at a degree in business management with a focus on sales. I wish to become accessible working from home with affiliate programs, so that I can avoid being forced on disability from putting too much stress on my body at work. Although I may have pains every day is a big part of me that doesn’t want to stop. It might be my ego but I do not want to feel defeated. 

There is a point where we need to stop some things for the sake of our health, but I wish to push forward and continue to educate people on chronic illnesses.   I believe there is a great deal that I, and others like me, can still do. We just have bigger hurdles to jump over along the way. 

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*Lupus anticoagulant antibodies are one of several antibodies present in everyone.  Although it is identified with lupus, it does not necessarily indicate that you actually have lupus. 

**Vitamin K has blood-thinning properties and it is highly recommended that people who are taking medications to treat clotting disorders (including aspirin, Coumadin, Warafin, etc.) diligently monitor food in their diet with high Vitamin K content (such as dark, leafy greens).  Be sure to speak openly with your medical team about your daily diet and develop a plan for your particular situation. You can also learn more about foods with high Vitamin K content here .

“Hello,

We received an email from our National office about The Dr. Oz Show featuring men and lupus. It will be airing on Monday, Jan 18, 2010. In Seattle you can watch this show on KOMO4 TV at 3:00pm. In Portland, it is aired on ABC 2 KATU 3:00 PM and 8:00 PM on KATU-DT2 (DTV Channel 2-2) [Dr. Oz link has incorrect time]. 

Please check this link: http://www.doctoroz.com/find-station to watch show timings in your areas.”

After watching the show you have more questions or want to know about resources to learn more about living with lupus, the national LFA website does offer archived transcripts from their webchats on Men and lupus,  Men’s health and lupus and Lupus in men.  They also have community message boards where ongoing discussions and an Ask The Expert link.   Our PNW LFA Chapter will also field your calls and emails to receive further information or materials.  If you have more specific questions about living with lupus  in Oregon, contact us here and I will connect you with local resources to fit your situation.

Of course, there are many other amazing lupus organizations on the internet (for example, research and advocacy and education,community-building and diversity)  and several bloggers who also offer their suggestions and stories.  As always, recognize that nothing can take the place of your physician and we strongly recommend that you take all information you read carefully.

Researching and reading is important in helping us cope with our illnesses, but always speak with your medical professional before implementing anything you come across.  Best intentions can still do a great deal of harm.

We don’t often think about men living with an illness and it is important that we learn from their experiences, as well.  Whether you’re a fan of Dr. Oz or not, I’m just glad he’s putting the discussion out there, giving us more opportunities to begin asking the question:

What is lupus?  (Sorry for the ads, but the video is a quick and informative source to get the gist)