Accepting life with Lupus

April 30, 2016

Coming to terms with my lupus was not easy but I have always been a person who sees the glass as half full. Just about everything about my life had to be changed. I needed naps and took them. I had to cut back on a busy social life because I had no energy. I stopped shaking hands with people because it hurt too much.

Before getting sick i had grand plans. I was going to live in Chicago, have a career as a sports writer writing about the Cubs, go to all the Cubs home games, play tennis and eventually get married and have kids. Lupus seemed to have stolen all of that away from me. I had to move from Chicago because winters made me very sick. I was told by my doctor not to have children, it could trigger a massive flare-up that had the potential to land me in the hospital. I could no longer play tennis. I moved from most of my friends and my family and was forced to start life over. I’ve met some people who wallowed in self-pity. I saw it as another adventure.

In the 20 years I lived in Atlanta I worked, got married…. and divorced, made new friends and got involved with the Lupus Society of America – Georgia Chapter.  I started freelancing as a way to take better care of myself, and was never at a loss for assignments. I wrote about computer hardware and software, swimming pools and spas (and got to interview Esther Williams). I wrote about fences, security systems and shopping mall construction. I also edited publications in the HVAC arena and a couple of medical publications. At one point I saw an ad for a freelance environmental writer. I applied and within four months was promoted to freelance news editor. It kept me busy for more than six years. I got to tour such glamorous facilities as waste treatment plants and drinking water plants. I toured Lockheed where the big military cargo planes are built and a huge Budweiser facility in Cartersville, GA, to see how they were “environmentally friendly.” I also had a tour of the Savannah River Site facility in South Carolina. I got security clearance to tour the area where nuclear waste was turned into glass. From there it would be shipped to caves within mountains in the west. That was fascinating. I was meeting new people and learning so muck. I covered the environmental aspects of the Super Bowl when Atlanta hosted it in 1994, and also covered the environmental impacts of getting ready for the Olympics, which Atlanta hosted n 1996.

In 1994 there was great flooding in Georgia, just south of Atlanta. I had gotten a call to join the governor of Georgia in his helicopter to tour the most badly hit areas. As I was leaving for the airport I got a call that I had been bumped from the flight by then-President Clinton. Bill still owes me an apology for that! My position at the paper put me in direct contact with top Georgia officials from the governor and various city, state and U.S. officials, to the top officials for the EPA and EPD, (Georgia Environmental Protection Division). I was never at a loss for stories. These people called me. It was great fun, easy writing for me, though much of it was technical, and I ran myself ragged. But I kept going because I loved what I was doing.

It was during that time that my doctor asked me to take a class and get certified to teach a lupus self-help class. His theory was that I would be a great person to help newly diagnosed people and show them how I was living with my lupus. I took the class and met others who were living with much worse cases of SLE than mine. At least mine wasn’t affecting my central nervous system.

I enjoyed teaching the class and I learned a whole lot more about lupus and realized I really had accepted this awful disease. I learned that you do have major losses, which I’ve mentioned and you need to mourn those losses. Everyone mourns differently. Mine losses seemed huge to me but my mourning period was short because I had living to do. The most important thing I learned was that inherently I knew I had to prioritize my days. I would have students make lists of what they needed to do the next day and then prioritize what was on that list. I did the exercises with them. I realized I was already doing this subconsciously.

I found my passion for hockey reemerge and became passionate about greyhound rescue and cruising. That cruising passion led me to a job with cruiscritic.com where I was community supervisor, which meant I answered questions, made sure everyone was following the Terms of Service. I organized the first on-land cruise get-together and led the first Cruise Critic group cruise.

But I was always exhausted. Looking back on it, I was prioritizing my life, but still doing way too much. I’d feel like I could do things, like write three articles in a week for different publications, but then I’d hit a wall and couldn’t move. I never went out of my flare. I was envious of those who went into remission. I never did.

I became extremely good at predicting tornadoes. Tornado pain is much different from heavy rain pain or even snow pain. One night I felt a big tornado. The Weather Channel was showing it on the ground moving directly toward my house. I got the dogs (three greyhounds at that time) and half way down the basement stairs I felt the thing shift direction. I slowed down, let the dogs out and sat by my pool while I waited for the dogs. It was an eerie thing – very quiet and still but I knew I was okay. The next day the weather casters were talking about that tornado. It did shift directions and took aim on two huge apartment complexes. It demolished one of them – two miles from my house. My husband was not happy when he found out I let him sleep through it all, but I told him there was no need to wake him. I was sure and I was right.

For a while I was editor for the Alabama and Georgia editions of a magazine called “Nursing Matters.” Once a month I had to go into the offices to do the layout on their computers. We were owned by the same company that owned The Weather Channel and we shared office space with those employees. One day I was waiting for a fax when one of the on-air guys from the beginning walked in to send a fax. We were talking and I asked him the rain chances for that day. He told me less than 5 percent. I told him it was going to storm within the hour. He looked at me and looked outside where it was sunny and there were no clouds in the sky. He thought I was nuts. Forty-five minutes later he found me at my desk and told me I was better than their computer models. It was storming.

While living in Atlanta I also started a real estate investment company. I bought foreclosed homes and rehabbed them and sold them. I kept one as a rental and turned it into a Section 8 rental. I wanted to help those who needed help. I did very well with that company but it finally became too much for me physically.

It may sound crazy, but all of these things I did, and more, would not have happened if not for the lupus. Am I happy to have it? Hell no. But I never would have had the experiences I did if I’d stayed in Chicago. I just figured out how to work with the lupus. I thought I was able to take care of myself, but I was still getting really bad flares.

In 2002 things started getting really bad again. I was having problems with my left knee, and was falling. I was always tired and had no energy. I gave up the real estate and my position on the Georgia Real Estate Investors Association  board of directors. I had knee replacement surgery in 2003 on my left knee, and at that time had my right knee scoped. I was told I’d need that one replaced within a year. Well, that didn’t happen. I got divorced and got really sick. My house was way too big for just me, caring for three dogs and a cat was overwhelming. I was really sick again. I moved back to Chicago with the help of my family. I found homes for my three dogs (two greyhounds and a little mini-lab/beagle mix rescue) and brought my cat back to Chicago with me.

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Finally, some answers

April 26, 2016

I shall be telling this with a sigh

Somewhere ages and ages hence: Two roads diverged in a wood, and I,

I took the one less traveled by,

And that has made all the difference.

 

 

With the help of a cousin, I waited for a specific rheumatologist to return to Atlanta. My first appointment with him was in July of 1985. I was his first patient. After asking me many questions and listening to me – really listening – he told me he suspected I had lupus, but it was going to be very difficult to diagnose. His initial diagnosis officially was connective tissue disease. By then my hands were in pretty bad shape and I was dropping things all the time. My downstairs neighbor knew how bad a day was for me by how many things she head me drop.

I was sent to an occupational therapist and a physical therapist. We determined that I had no feeling my my hands from my fingertips to my elbows. I was given exercises to do at home and was fitted for hand braces to wear at night. When I think of those now I cannot believe I actually wore them. They were made of a very hard plastic molded to my hands, from just beyond my fingertips to about my elbows. This was to keep my hands open and hopefully keep them from cramping during the night. I ended up with many bruises on my forehead because I’d forget I had the braces on and I’d try to scratch an itch and bang myself in the forehead.

My doctor was so convinced I actually had lupus that he started me on plaquenil, and anti-malarial and mega doses of Motrin. Motrin was not hte answer. We tried just about all the non-steriodal antiinflammatories on the market and either they didn’t work, I had an allergic reaction or some other strange reaction. After exhausting everything , over the course of a few years, he gave in and put me on prednisone. I had heard that prednisone would probably cause me to bounce off the walls. It didn’t. In fact, I wasn’t even sure it was working, but it was.

As time went on, I developed more symptoms and more pain. My rheumatologist told me that if I developed eight of 10 symptoms he could make a definite diagnosis of SLE. It didn’t take long for two more symptoms to rear their ugly heads. I now had an absolute diagnosis of lupus. New blood tests that were coming out also started confirming the diagnosis. Basically, my body had developed an allergy to itself and was attacking my connective tissues, meaning my tendons and ligaments. The pain was always there, at times so intense I wanted to cry.

I plugged on. My boss was quite understanding of my situation and allowed me extra time for lunch so I could go home and take a nap. I needed to get out from under the flourescent lights, which were making me sicker. When I was asked to join a brand new magazine part of the deal I made was I would have flex hours, I would have my own lighting and if I needed to take a nap, I could do so on a sofa in the managing editor’s office. This worked out pretty well but I was still in a great deal of pain.

I asked my doctor about a support group and he told me not to join one. he was afraid it would bring me down. I was coping with the lupus very well and was learning on my own what I needed to do to make myself comfortable and less sick. One thing I knew I didn’t want was to listen to people complain about how sick they were and how awful their lives were. That would have brought me down. I was no longer able to do many activities I had enjoyed before getting really sick, but I never saw a dead-end. I saw a fork in the road. I could go one way and feel sorry for myself or go the other way and see what else was out there. I always chose to see what else was out there. In fact, had it not been for the lupus, I would never have become a landscape photographer or an avid bird watcher. For a while I carried around a copy of Robert Frost’s “The Road Not Taken.” I truly believe that I have taken the road less traveled and it really has made all the difference.

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In the beginning……

April 25, 2016

My mom and I have been trying for years to figure out just when I started having lupus symptoms. It could have been the convulsions I had after the baby shots I had. Who knows? It could have been showing up when I was taking ballet lessons. I’d come home with sore, red and swollen knees. It could have been in grammar school when I would get very nauseated and have to go home from school. My mom used to say I had 3:15 itis because a couple of hours later I was absolutely fine. I used to sit out in the sun – a lot. I always got sick, but I looked better with a tan. I’d also always burn, despite putting on sunscreen.

In college I was always tired but I studied hard and played hard. Isn’t that what college is about? One day I got back to my dorm room and was so exhausted I decided to take a nap. When I woke up it was confused as to why there was so much noise in the hallway at 6 a.m. Turns out it was 6 p.m. 24 hours after my “nap.” After college I was always tired and losing a lot of weight. I figured it was because I was working hard and playing tennis almost every evening.

One night I went out with friends and when I got back one finger was red, white and blue – very patriotic. Then this started to spread to all my fingers – on both hands. I was always cold and had no energy. I was diagnosed with Raynaud’s Disease. My fingers would get very cold and turn blue and white. The red would come in when circulation returned. It was very painful. I was told to move to a warmer climate. But there was more going on and we went searching for answers. Unfortunately, there were none. I was 24 years old and I kept telling doctors I was sick and it wasn’t in my head. Sometimes just a few steps to the bathroom from my bedroom wore me out.

After going one winter where my fingernails turned purple and the skin around the nails turned black, I knew I had to find a warmer climate. I was unable to play tennis because I couldn’t hold the racquet – and I had been playing five or six days a week. I had dated one of the tennis pros at the club, so all of them tried to help me figure out a grip that was comfortable for me. None worked. The racquet kept following the ball across the net.

For me, life has always been an adventure. That’s how I look at it. After college I spent seven weeks on Australia. It was incredible. I was there on my own, but I had a friend in Sydney and cousins in Melbourne, so I wasn’t really alone. One cousin who is one month younger than me had been to the States a few times and we’d gotten very close. As kids we talked about being at each other’s weddings. By chance, I was at hers! What a thrill.

So, when it became clear I had to find a warmer climate I made a list of criteria I needed in a city. It had to be a warmer climate. There had to be publishing opportunities. I wanted a city with a younger population for making new friends. The city also had to be a National League city so I could see my Cubs. I decided to take a look at Atlanta. For my 25th birthday, I took a three-week trip, kind of the long way, to Atlanta. I stopped to see a friend in Pittsburgh. From there, I went to Reading, PA, to spend my 25th birthday with my college best friend – I arrived on his birthday, two days before mine. I stayed there a couple of days then stopped to see friends in Greensboro, NC. I spent eight days in Atlanta driving around, looking at publishing companies (I was offered a job on the spot and turned it down) and I looked at places to live. It seemed to be the right place. On the way home I stopped to see a friend in Cincinnati.

I moved to Atlanta and eventually went back to the publishing company where I’d turned down the job and was offered another, better job, on the spot. I took it.  But I started having other issues. My hands were hurting from the Raynaud’s but also for some other reason. I was able to predict, very accurately, when rain was going to start and how heavy the rain would be. My knees started bothering me, as well. And, I was still so tired and losing weight. I chalked up the fatigue to a very active social life. But that wasn’t it.

I look back at all of these things now and the lupus diagnosis I finally received starts to make sense. According to WebMD, about two-thirds of lupus patients are sensitive to the sun and the UVA/UVB rays from other light sources. Looking at the list of symptoms on the Lupus Foundation of America site, getting sick in the sun made sense. But I also learned that fluorescent lights throw off UVA and UVB rays and THOSE were making me even more sick. My 3:15-itis was probably a reaction to the lights I was forced to sit under every day at school. To this day fluorescent lights are a real problem for me.

I’d always had allergies, but developed more, and developed food allergies as well as hayfever. Hurting hands, swollen fingers, swollen knees, fatigue, weight loss. It all started to make sense.

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What is this site about?

April 23, 2016

Originally I was going to have a site where I would help people be their own best medical advocates. This came about because of some medical issues I have had and continue to have, and seeing that people around me were not necessarily making informed decisions about their health care, they were just doing what their doctors told them to do.

This changed two years ago when I was diagnosed with Rheumatoid Arthritis (RA), Inflammatory Arthritis and Rupus. This was on top of a longtime diagnosis of lupus (SLE), fibromylgia, Raynaud’s Disease, lupus arthritis, severe osteoporosis, an ulcer, retina damage from one of the drugs that had been helping my lupus and more.

It was suggested that I start blogging about my experiences, which I’d already decided to do, but I will still try to help people advocate for themselves as I do for myself.

While I will share my own journey dealing with my lupus and RA, I will also have available, some time soon, pamphlets on diseases such as lupus, RA, diabetes, MS, various cancers and more, for a nominal fee. The pamphlets, in PDF form, will give an overview of the disease or condition and give very basic questions to ask your doctor, whether it’s a new diagnosis or not. More detailed questions can be discussed for a nominal fee.

I want to make it very clear that I am not a doctor nor do I have any medical training. I am drawing on years of experience with medical issues, and the writing and editing I have done in the medical field. I will share what I am doing for myself. The one thing I ask is that you remember that everyone is different and reacts differently to medical conditions, medicines and other treatments. What works for me may not work for you. What works for you, may not work for me.

My next few posts will start with my initial diagnosis of Raynaud’s Disease and how things progressed from there, what changes I had to make in my life and how I am dealing with these medical issues now.

I hope you will subscribe to this site and will find it helpful for yourself or perhaps to help you understand someone else going through similar issues.If you have similar issues and have had good results from a specific treatment, I hope you will share them on this site.  I welcome feedback and questions – just keep it clean. I reserve the right to remove any posts that attack me or someone else who has posted.

You can also email me directly at miriam.romain@gmail.com.

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