A HEARTFELT ACCOUNT: LIVING WITH LUPUS

"Elizabeth" is a very old and dear friend of mine. Ever since I have known her, she has had a zest for life, always making the very best of things and giving her heart and soul to her friends, family and co-workers. If you just spent five minutes with her, you would immediately recognize the amazing love she holds in her heart. She is the real deal- honest and forthright. I feel honored that when I asked her if she would mind doing a Q & A this week for Invisible Illness Awareness, she agreed immediately. She had been having health issues for a while and finally, in the wake of a stroke, a tumor in her kidney and having to have the kidney removed, it was discovered that she had Lupus. Thus began a courageous, uphill climb both physically and emotionally to get her where she is today working very, very hard to manage her illness. As I have mentioned before I have several friends with invisible illnesses. I felt it was important to give them a voice here as well if they wished, on their unique condition, in an effort to spread awareness and help others…

Q: What is your diagnosis exactly?

A: Systemic Lupus Erythematosus, Polycythemia & Hypo-thyroid are the three conditions in which I currently suffer from.

Q: Perhaps you would not mind describing how your condition usually makes you feel both physically and mentally?

A: Truth be told, my conditions make me feel like I’m an idiot. I have difficulty at times putting my thoughts together. Sometimes conversations, reading material… I am not able to comprehend or respond as I used to. I have the sniffles all the time, joints are achy and stiff. Don’t know if I’m catching a cold or if I’m about to go into a LUPUS Flare.

Q: And your so not an idiot trust me! When it became clear you had a condition, and it was real, how would you describe your reactions? How about the reactions of your friends and family?

A: I remember feeling so relieved at finally having a diagnosis. I was tired of the tests that would return inconclusive. I felt like an object or a lab rat, test after test after test… I didn’t feel like a person anymore. I felt like a Petri dish, waiting for something to happen. So when I was finally diagnosed with SLE, I was so relieved. I was able to breathe and move forward with treatment.

Q: I can so identify with that. How has your condition affected those close to you as time has gone by? Is it still difficult for them to accept? Have you encountered any particular difficult situations in this area?

A: My family was scared but supportive as best they could be. Looking back I feel for my ex-husband, he didn’t know how to deal. It’s so true in sickness and in health….well it turned out to be only in health. My mother is a pillar of strength, never gave up hope and prayed her heart out that I would get better.

Q: My Mom, too. I am deeply sorry your husband at the time was unable to do the same. I know that made the situation that much harder. How has your condition affected those close to you as time has gone by? Is it still difficult for them to accept? Have you encountered any particular difficult situations in this area?

A: During that time, once the diagnosis was given, the steroids came into play. If I remember correctly I started out at 80 milligrams of Prednisone a day and within a weeks time I had gained about 20 pounds. Shortly after that I had ballooned up to 320 pounds… wearing a size 26. Oh my God, I have tears thinking about all of this. Now four years later I am at 245 pounds, still not comfortable but getting to where I want to be. I’m doing this so that I am as healthy and strong as I can be in case I ever revert to feeling as badly as I once did. And I think certain family members didn’t expect for me to recover as well as I have. Now, going through a divorce and facing my health issues without my spouse has been a huge struggle. But, people’s expectations, well, thankfully I have come to terms that this is my life and these are the conditions that have chosen me and I have to do right by me. At times I often wonder if people preferred to see me at 320 pounds, struggling for breath, so swollen I literally felt I was going to pop. Tired, in pain, physically, mentally and emotionally beaten.

Q: That is the problem with all invisible illnesses and especially with steroids, which cause a unique kind of weight gain. And it does sometimes feel like you have to look sick to prove to someone that you really, indeed, are not feeling well. Some people just have a hard time taking your word for it. Would you say your illness also affects you financially? If so, how exactly?

A: My illness has affected me financially in so many ways. Now unable to afford getting divorced, trying to maintain a roof over my head and food on the table, it’s been a struggle for certain. Not having that person/spouse for support has been difficult. I recently went to the pharmacy and had some medications refilled, my jaw hit the floor to learn that my prescriptions had gone up and not just by a few dollars. I had to tell myself at least I have insurance.

Q: That is another thing people have a hard time comprehending is the financial aspect. In this economy those of us with health issues cannot save any money aside because between insurance premiums and deductibles, not to mention that percentage of the doctors bills and lab tests we constantly have to pay, we can easily go into debt. The “normals” really have no idea how this affects them if they or nobody else they are close to have ever really been consistently ill. What would you say concerns you the most about your illness?

A: The concerns I have regarding my illness are which organs will it attack next. From what I understand, when the Lupus decides to act up and I am in a flare, my body is attacking itself, it’s a war. Luckily in four years I have only had to go to the ER twice due to a LUPUS flare. And I have only one kidney; my left one is the only one still with me. My right one was engulfed by the nasty tumor, so I worry about keeping my kidney healthy and not having to endure dialysis. I was also diagnosed with pericarditus, a condition in which the sac at the rear of the heart fills up with fluid. At one point via a catheter I had to have the fluid extracted, which was EXTREMELY painful. And now that I no longer am with my spouse, I worry about being alone. At times I feel broken.

Q: I really cannot imagine. What words of comfort do you think you might be able to offer someone who has been diagnosed with your particular or another similar chronic illness? Would you be able to offer any helpful hints on how you have been able to help yourself to others with a similar chronic condition?

A: I don’t know that I have any comforting words. What has helped me is to never give up….. keep hope alive and all that good stuff. I look back at how I was and how far I have come. I’ve had to learn to live life simply and remove as much stress as possible. YEAH RIGHT!

There was an episode one day on a surprise remodeling show one day where the woman the surprise was for was diagnosed with stage IV breast cancer. She was such an incredible woman. Her spirit so positive, though I know that at times she must not be that way all the time. I found so much strength in her. I have had to learn to be patient with myself, take it easy on me and look at the brighter side of things. I am able to do cardio for an hour, lift weights, tie MY OWN SHOES (I hate slip-ons!) My attitude and determination has been everything to me. I’m not always a 100% and I can’t remember when I was last but I’ll take the functioning at 90-95% anytime.

Q: I, too, have found it so important to look to others for inspiration. And I know we just talked the other day about how we can exercise to a point, but when there are flare-ups, you HAVE to take breaks from it..sometimes several days. I think it is amazing your able to go to the gym now. I also think it has been really inspiring how you charted your progress with using the stairs at work for cardio on Facebook the past couple of years. 

A: (smiles happily) My Cardiologist mentioned to me one day he no longer had to see me, the fluid had not returned and my heart was strong and healthy. He mentioned I was his youngest patient and that he didn’t know what I was doing but he knew I was a very determined woman, because losing weight on steroids is EXTREMELY difficult. He sent me on my merry way.

I remember being at my rheumatologist office in the midst of tears because I had not lost a pound…. she and I have had numerous conversations, the decision to not have my own children and that the reality of it could and more than likely send my LUPUS into an utmost turmoil I would much rather not face. That one morning I was so disappointed, I was working out, eating right and doing all that I am supposed to be doing and yet the scale showed nothing, she held my hand and told me, more like reminded me as to how far I had come. She has patients that wait till the last minute when they are extremely miserable and in pain to see her, refuse to take their medications as prescribed let alone follow up as one should. She reassured me and commended me on how well I was doing.

Q:  You ARE a very determined woman! It is so important to have SUPPORTIVE doctors. May I ask what have people said to you in regards to your illness that has struck you the wrong way and how have you dealt with this?

A: Things that people say that upset me are, no you don’t have LUPUS, no you can’t loose weight and “it’s in your head”.

Q: Yes the famous “it is all in your head” thing. Pretty mind blowing how much of that we get. Would you be able to tell me what seems to help you the most on your worst days?

A: On my worst days what helps me the most is to rest, to relax and let things go….. that it is ok, my body needs rest.

Q: That is good. That is the one thing about these kinds of conditions that is so important. Despite your condition, is there anything on your list you want to be sure you can do some day, regardless?

A: I hope that one day I could stop all medications, but that won’t happen. I hope and struggle to regain my quick wit. That is something I struggle with all the time, not as bad as before but I do still struggle with it. Another big goal of mine is the ability to cross my legs, I am now able to tie my shoes, crossing my legs would be an amazing accomplishment.

Q: I have no doubt you will get there. What are your hopes for the future as someone who has a chronic condition?

A: I hope that in my lifetime there will be a cure for LUPUS. I hope to never feel another flare again and for people to take care of their bodies as much as possible. To concentrate on being better people and not so much on the outside. All the processed food, sugar, this way of life is affecting our health. I had vaguely heard of LUPUS in the past, but now I hear of it everywhere, and every case is different.

Q: I wish I had known more about the environmental factors that might affect me earlier like what is in food, etc. I would have paid a lot more attention to what I was doing. Still, it seems a struggle all over the world to inspire people to care for themselves better.

So…final question… What would you like people to know about invisible illnesses? In other words, in order to spread hope and support, what is important to you that you would like the word spread about?

A: The last 10 years have been draining, Graves Disease, Hypothyroid, LUPUS, Stroke, Pericarditus, Renal Cancer scare, hernia, obesity, IBS….. all I concentrate now is on how I was and where I am now. Today as I am here doing my job and typing away these answers, there is a discomfort in my joints. Sometimes the discomfort is greater and on really bad days the pain is sever and unbearable. I can only describe it as if someone has lit me on fire.

The mood swings are terrible, sometimes I find myself on a huge high and then I come crashing down and then I am either very depressed or very angry. At times, not as often anymore, I want to crawl into a hole and let life pass me by. Luckily this passes quickly.

As time goes on I have become more in tune with my body, I crave exercise, it helps me clear my mind and keeps me somewhat sane.

I do worry at times of the long term effects of the medicine I am on that makes me “comfortable”, and at times I have decided I feel so great I will stop taking it. OH WHAT A HUGE MISTAKE! Will I suffer from another stroke, if I do will I recover as well as I have? What organ will be attacked next? All of these thoughts make a pit stop in my brain on a daily basis.

I try and focus on the things I can do and not so much what I can’t do…. Have learned to make adjustments….. the best advice my sister gave me…. Focus on what you can do, and not on what you can't.

                        
            


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