I AM NO LONGER A CANCER PATIENT! (and beware of the blame game)

When my doctor called a few days following my surgery to give me the good news that I was cancer free my Mom told me something I had not thought of. “You are no longer a cancer patient. That should make you feel better psychologically.” She was right. I am now a survivor.

I wanted to take some time out today to just write about some thoughts I am having. I have been putting together my “experience piece” slowly here and there as promised in addition to thinking lately about the other blogs I want to write here about autoimmune, art and life but for now…I guess I am just checking in. I find that a lot of people are unable to leave anything in the comment section here so I often get tons of emails and FB messages instead. And the main message I am getting lately is of love and it leaves me speechless. So again and as always, thank you. Thank you from the bottom of my heart.

It has been exactly one month today since my procedure and I am overjoyed to report that I am doing very well. I am still tired and have some moderate discomfort, but with Fibromyalgia that is expected anyway. Since I had my first expander fill yesterday I will be definitely taking it easy this weekend. My amazing family worked tirelessly the past four weeks to ensure my healing in every way possible and I feel quite blessed. I cannot imagine what it would it is like to be going through this without a lot of support or none at all which has me thinking in all matter of different ways for the future.

But meanwhile, here is what has been on my mind…

This past week a rash of recent medical studies came out by whoever and whomever that there is little link between environmental factors and breast cancer. That a healthy life style and maintaining the proper weight, etc. etc. etc. (YAWN) are the key to prevention. I am not going to bother posting any links because it is simply to me the latest “duh” buzz on the subject. Naturally maintaining a healthy lifestyle can certainly stave off such things or make them not as bad. But it is frustrating that so many women, including myself, who HAVE had healthy lifestyles most of our lives still got caught with the little bugger. And here is what I believe and have even had top doctors admit it to me…we really do not know what causes it. Personally I think it is impossible to rule out anything environmental (which could be anything from the air you breath to the ingredients from over the years from foods thought to be healthy and were not) in playing a role in any kind of illness. There is so much we do not understand yet. And “studies” may just simply not have the right know-how and tools to even uncover what they need to in order to find the link, so they spread this nonsense in the media. For those of you who have followed my blog since the beginning, you probably remember a piece I did earlier on how our society is set up to sort of blame ourselves for our health problems. Grant it, I highly believe people have a responsibility to take care of themselves best they can to ensure they and their planet are as healthy as possible, even with the already done damage. Sill, someone gets cancer and suddenly such a study might make them feel guilty they indulged in the occasional pastry. How absurd. And me? With the issues I experienced following radiation I looked back and decided I should have never done it. But had I not I just know I would question…did my cancer come back because I did not? I know I would play the blame game. And it is not right.

The fact of the matter is the blame game helps nobody, especially the one dealing with disease. So when you hear this stuff in the media, take hints from it, but take it with a grain of salt. I can guarantee that sometime next year another study could link breast cancer to something in like…um…who knows…a certain kind of paper towel. And a year from that finds that false. So breath easy. As an autoimmune patient I was told we tend to get cancer a little more easily, too. And I imagine there are a lot of people out there with autoimmune conditions who maintain healthy lifestyles who are not even aware they have an autoimmune condition. Health is complicated enough. You can only do the best you can do. The bottom line is, be good to yourself. Always. 

A VERY THANKFUL THANKSGIVING

So I wake up in recovery and my beautiful Mom is there at my side as always. She said I looked at her and said, “I had the most wonderful dream.” And she said, “You did? What about?” And I said, “I don’t know.” She cracked up. Apparently I am famous for making people laugh when I am waking up from surgery and I am always glad to oblige. Not long after I was transferred from recovery to my room my Mom informed me that she had finally eaten at a Panera Bread while I was in surgery and that she thought it was pretty good. “But”, she said, “We ordered the green iced tea and it was way too sweet”. To which I replied, “You should have had the Greek salad. It is not so sweet.” Thus presenting my brain on drugs. I do, however, remember dreaming about hiking in Mount Wilson with my husband and visiting our carved log with our names on it which we did years ago when we were first dating. Then as dreams go, Mount Wilson turned into Kauai, our favorite Hawaiian island. I told him this when he was the first wonderful face I saw in recovery. 

All things considered, it has gone extraordinary well. Well…that is putting it mildly. The words blessed, lucky and loved come to mind. I am not saying it was all without incident, it definitely was. But the following Wednesday when my doctor phoned me it was the first time I heard excitement in her voice. A happiness in her tone I had never heard considering every time over the past two years I have spoken with her it has been that of very concerning news. But this time I could almost see the wide smile on her face as she spoke. “Good news! The lymph nodes are clear. There is no more cancer. I do not think your oncologist will recommend chemo at this point. Congratulations!” There have been many great days in my life. This was one of them. 

Grant it this surgery is a major life-changing thing to be going through. And it took me several weeks to get used to the idea of what I had to do often joking that I was going to catch the next flight to Hawaii. Of course, you cannot run away from something scary inside you. I do not regret my decision with my doctors to do this even with all the pain, discomfort and inconvenience to my family and myself it has brought on. Knowing that the cancer is gone and had not traveled beyond the original area has left me with a new sense of peace and relief I only wish upon others who have had the misfortune of it to have spread and have to deal with the tough treatments that follow. When diagnosed the first time in January 2010 I honestly thought the lumpectomy and radiation would be the last I would have to deal with it. When it came back I decided I wanted to make it so I would not always have the idea of it coming back hanging over my head. So I decided on a double mastectomy instead of just a single where the cancer was. Besides, there were benefits to the reconstruction phase when choosing this option and insurance was required to pay for both. 

Although I will talk about the entire procedure and recovery in a more detailed blog later in an effort to help other women facing the same surgery, I will attempt to quickly share the reality of this adventure in short for now. I cannot lie. I have had many surgeries, but this has by far been the most painful and invasive. I awoke after almost six hours of surgery to four suction drains going into raw, open holes two underneath each arm as well as a tube going into my chest from an OnQ pack providing numbing medication to the surgical area. This was in addition to all the other usual IV's, oxygen and connections needed in any major procedure. The pain required me to have my own morphine pump to at least take the edge off. Pain radiated, and still does, across my chest and down my right arm and searing all the way through to my back. My arm feels like it constantly has a terrible deep sunburn that goes all the way into my bones. The skin is literally sore to the touch.This is because of the lymph node surgical area which often causes people to also have pain and numbness down their arm and in their hand. Since these are symptoms I already deal with on a daily basis with fibromyalgia anyway, I am not alarmed but mainly just very uncomfortable. There is no way for me to sleep but slightly sitting up on my back. Laying on my side is impossible due to the drains. I was lucky enough to have two of the drains and the OnQ pack removed this past week which has brought a tiny bit of relief, but the remaining drains are still bringing a lot of discomfort. I am unable to lift anything or even try to twist a cap off a bottle as it immediately becomes painful. My job right now is to basically let others help me as much as they can as I stay on track to heal and become strong enough to enter the second phase of the reconstruction process. I have been blessed with an amazing family and support system who has been caring for me. This I can assure you has made all the difference in the world. 

I honestly believe all the things that I have practiced for so long now in the way of diet, special supplements, and chiropractic adjustments made this a lot better than it probably would have been. When I had major surgery last year, I was not avoiding gluten or taking the right supplements and I had very difficult time restoring my system to some sort of normality for months. I am happy to say that even though I am still far from complete recovery, I am recovering much better than I have in the past. I sleep a lot and the pain requires I rest a lot, just keeping my arms propped on special pillows to allow it to subside. Despite my trial and errors, I have had to continue with strong pain medication mostly due to the spasms, deep irritation and pain that continues as I heal, especially where the drain tubes go in. 

But even though right now there is no escaping the discomfort, I am happy. Today when I snuck out for just a few minutes (I have to be driven everywhere, will be a while before I can drive I guess) with my Mom to do a few errands I put  my arm around her and said I was happy and felt lucky and at peace. She said that I definitely dodged a major bullet. I have never been so grateful in my life. 

So this Thanksgiving, my family and I have a lot to be thankful for. And it is my wish that those of you reading this little blog find hope in my story. For those of you who are healthy, be thankful for your health and never take it for granted. For those of you fighting for better health, I wish you all the strength and good karma you deserve in getting there.  

For now, I wish you a peaceful, loving and healthy Thanksgiving however you choose to spend it. I will be writing real soon in detail about my procedure so I can try to throw some helpful hints out there and share my stories to those who might find it beneficial. I am thankful for my positive outcome from this surgery, my amazing family and friends and for life itself. Blessings.

...A LAST LITTLE BLOG BEFORE THE BIG DAY AND MY LOVE TO ALL

It is quickly closing on the midnight hour the night before my surgery. Which if I have not been specific enough about now is a double mastectomy and an attempt at reconstruction, first surgery in a possible series. The past month has been surreal for both my family and I. Surreal because as those of you who know who might occasionally follow this blog, is another major step, or should a I say a “side bar” of sorts to an already complicated and sometimes challenging daily health puzzle.

The long appointments, the research, the shopping for the right items is one thing, which has been both time consuming and strange. Getting used to the idea is the big part. When my doctor first told me I needed to have this done to save my life, she wanted to do it “in the next few weeks”. But I made the call. No. It would be a little later than that. I needed time. Not just to get organized…but to properly absorb best I could the adventure I was about to embark on. Work, both in my studio and at the natural healing office I work at a few hours a week, was my solace. As was spending time with my family; my husband, my parents, a lovely lunch with close friends. With fibro, a lot of “me” time had to be factored in as usual. Rest. Eat right. Take care. Enjoy the fall weather and walks with my sweet dog. Peace. Live in the present. I am not saying it was all calm and serene. Not by a long shot. I had a few meltdowns. And I’ll have a few more I am certain of that.

The lovely lady who phoned Wednesday from TOSH confided in me she had had the same procedure a while back and I could ask her any questions I wanted to. Thanking her I asked the big question…the one I had read so much about. Tell me, I said, just how bad is the pain. Please be honest. Without hesitating she said she was a pretty tough cookie..but the two nights she was to be in the hospital turned into four because frankly..the pain was pretty bad. And she could not get a handle on it and needed the morphine pump longer. I appreciated her being so candid. I am not the type of person who goes by what the doctor says about pain. They usually underwrite it. This was not to scare myself, but to give myself a possible picture of reality so I would know what was not right pain wise to go home, and what was. My items arrived yesterday from the American Cancer Society. Beautiful camisoles with drain pockets. And a patient’s right sheet…that I had the power to do the best by me. That is what I and my family will try to do. I am not scared of pain. Not that I am looking forward to it, mind, but I know…I know pain. I know it passes. I know the body, despite my condition, will heal. I know my doctors are good. I know I am going to an excellent place. It may take three times longer than the average woman with my medical condition, but I’ll get there. One more season of patience while I do what is best for me-as best I can.

But my main reason for writing this little blog tonight before a sign off for a while is to thank and give my love to all of you who have been so supportive through this process. My not being able to have the time to return notes and phone calls the past week has been bothering me-but I really have had zero time to return the lovely gestures and words I have received from not just my amazing close family and friends, but childhood friends who took the time to contact me to give me their love and best wishes and prayers and people who do not even know me. I am the type of person who when I phone someone, I want to give them my full attention and enjoy speaking with them without the distraction of multitasking because that is just who I am. I feel very, very lucky and honored to have such an incredible support system. I even have a candle now all the way from Bosnia via a family through her family in my honor and prayer. A lovely Faithful Angels pocket token arrived from a dear friend via mail today who I have not even had a chance to visit with in over a year. And the comforting things from those close to me...soft blanket, new robe, things to read. Emails, texts, messages of support and love on my phone, in my email box, on FB, and my voice mail. Forgive me for not being able to reach back out to every single one of you, but I will in time, I promise. It is something I look forward to doing. Just know I love you all back. And I love life. And I plan on hanging around a long time. 

My hope is the little girls I know now…Sydney, Juliette, Samantha, Maddie, Holly-all of them out there…when they get old enough…they will never have to worry about having such as surgery. That the burden of breast cancer will be greatly lowered. That the discomfort and major life transition that saves your life will be so much less invasive and simple and kind. That is my wish. From the bottom of my heart…my blessings and prayers and love back to all of you.

I’ll write soon….♥

DOCTORS, COUTURE & CHOCOLATE

So I mentioned in my previous blog that the good doctor who broke the news to me said a few choice stupid things when giving me the "not sure what it is but we recommend another needle biopsy" news. Now, I do not wanna be too hard on this guy because the first time I was diagnosed he happened to be the one who called me and was very supportive. He was also the one who very kindly and with respect performed my first needle biopsy. But we all have our days and I can only imagine in such a profession it is never easy to give anyone "possible bad news". But that day he was in rather rare form. I have blogged here mostly about my invisible illness and of course he could not resist telling me that "I looked great" after he mentioned the autoimmune diseases I have on my chart. I cannot fault him for this. Like I said before, I just genuinely thank people and get over it now. After all, who wants to "look" sick, right? So I let that slide. Then he mentioned Venus Williams as if I should be happy to share her disease diagnosis as one of my own. Again, poor man was grasping at straws as he was about to tell me I may have cancer again. But then...."Needle biopsies are not so bad." This is where he should have quit while he was ahead. Of course there is me, standing there, speechless, shaking and without one ounce of wit in me at that moment for if I had I can guarantee you it would have gone down something like "Oh, so you have had one? In your breasts? You were a woman before you had a sex change into a man?" or "You have had one...in other areas?" Now to be fair, maybe he had "in other areas" but what a stupid thing to say to a woman. All I managed was an "uh-huh." Now..having had a needle biopsy previously to that I can say that no, they are "not that bad" compared to a lot of other stuff. And I have had a LOT of other stuff. But they are not that fun, either. And some of us, I am one of them, do not respond too well to the good numbing stuff they give you. Thankfully, I purposely requested another doctor at the radiology staff to do my needle biopsy this time who put the clip in the morning of my first surgery. Ladies, pay attention to this as it can make a difference. Write down who does what. Guess what-this guy was better, made no silly comments, and I had a lot less pain and bruising. He was just damned good. I am glad I remembered him. 

Moving on....what to wear. For the past three days I have spent a lot of time online doing research, in chat rooms, message boards and emails with those going through my situation on just what the heck to expect clothing-wise after this big procedure. At first it seemed I would have to hunt down light weight button or snap up tops (uh...not easy to find by the way unless you want fancy blouses and plaid shirts) but thankfully, not so. Turns out there is a store right near me that measures, finds special camisoles with drain pockets and even fights your insurance company (as these items are not cheap..and which reminds me...need a new t-shirt..."Cancer Not Only Sucks, But It Makes You Go Broke")  so you can wear them under whatever zip up and button up things you already have. I am kind of picky about clothes, so the thought of having to buy ultra-dork looking stuff I would wear when I was 95 years old was not gonna settle well with me. So I am happy there are solutions out there. However, there are not enough of them. I am thinking...maybe some day I will design stuff much cooler and nicer than what is available right now, at better prices, for women undergoing breast cancer surgery and treatment. Who knows!

In conclusion to tonight's little blog I have to tell you what is getting me through this tough time. I have received a lot of heart warming comments about how brave I am and what a great attitude I have about this whole thing not just here in the comment section but in my email boxes. First I want to say, from the bottom of my heart, THANK YOU. But the truth is, I could not do it without the support of my husband, mother, father, family, friends, FB friends, work friends, my sweet little dog (who was a gift from friends during my radiation therapy in 2010) etc. Everyone has been amazing. I know that there are many, many people out there without the kind of support I have and I am saying prayers for them every day. But even I have my bad days. I have had days where I am so terrified of this surgery and the recovery and how it will (and yes, it will) flare up my autoimmune problems I am just depressed. I am angry because it will take so much time away from my life, which has already been quite limited the past four years. That I will miss pay and work time in my studio. I saw this disease take my Nana's life as she suffered through treatment and I have always loved and honored the pink. But beside my incredible loving support system...there are three things that help. One is serious, the next is helpful when I can remember to do it and the last one is true but humorous. 

The serious one first. This is not the worst thing that has ever happened to me. Not. By. A. Long. Shot. Those of you who know me..know. So I have a lot of perspective some may not be able to have, and that is ok. But that does not mean it is not still an important fight. By all means, it is. And some day, when I have the mental strength, I will blog about that so again, I can reach out and help others because it is so near, dear and close to my heart. 

Secondly, staying, as often as I possibly can, in the present moment. Do I think about what they might find in the nodes from time to time, allowing my mind to wander into a sea of outcomes? Sure. But as each day goes by, I find myself doing it less and less. Grant it, my ability to focus and concentrate is worse than usual. Autoimmune patients like myself have a constant brain-fog going on as it is but lately this really takes the cake (putting the dish soap in the fridge, blanking out at work, stuff like that). But today I felt a bit more normal. Maybe it helped that I got the very uncomfortable MRI behind me yesterday and spent a lot of time with my Mom, which I needed. Focusing on work this morning also helped, even though I drove my poor co-worker crazy toward the end there =). But I came home and really enjoyed an hour long walk and several sit downs in various parks to take in a beautiful early fall evening. I think knowing that for several weeks I would not be able to do these things made me appreciate it more. Every day will not be like this, but I was thankful today was a better day. Who knows about tomorrow-it is not worth focusing on. The saying "all we have is the present" is not only true, but comforting.  

And lastly...chocolate. No idea in hell what I would do without a few Dove chocolates in my desk drawer or the box my husband picked out especially for me...See's Dark Chocolate scotchmallows..my number one favorite candy of all time. Or the gluten free Belgium chocolate pudding I scored at Trader Joe's this evening. Small doses, of course. My stomach is rather picky and as I head toward surgery day I will have to really make my diet bland for weeks to come to handle the medication and antibiotics I will be needing to take. But seriously...chocolate. Best invention of all time. 

Anyone have any tips on post-surgical clothing? ♥

GIRL INTERRUPTED...AGAIN.

"The doctor wants to see you in his office" the nurse said as I sat looking at a ludicrous display of fashion in an Elle magazine in the little side-bar waiting room with the little tight dressing rooms for the oversized cropped pink bib "gowns", for lack of a better word. A gown should at least go to your knees in a medical setting. I do not care how easy it makes a technicians job these things are a disaster and I would not doubt they are part of the whole sorted picture that turns women off from coming in let alone getting their boobs pressed down like a pancake in a freezing cold room because "the machine needs it to be cold." Yeah? Well I say the machine needs to grow a pair. But anyway, there I am, and I was hoping that this would be my last appointment again for a whole year and I would be "in the clear". In January 2010 I was diagnosed, thanks to the icy cold machines, with breast cancer. There was the needle biopsy, the surgery and six weeks of radiation. So, the icy machine and the amazing staff of doctors and technicians who treated me 100% of the time with appreciated dignity and respect, saved my life. 5% chance it was to come back. I heard stories...women like me. They had it at the earliest stage, and it never came back. They were fine. 

But there I stood in the doctor’s office staring at three very large computer monitors of every mammogram picture that had been taken of my innards since 2009. The doctor started to talk but all I could hear was "See this one? It looks good." "Ok, now see this one?..." I started to shake. I can tell you that I shook like that for a whole week before it went away. I heard him say "recommend another needle biopsy", "we cannot tell the difference between normal calcification or if it the cancer has returned"...I remember being escorted into the once again kindly woman's office who set up the needle biopsy last time and the amazing nurse technician that told me to take deep breaths and drive carefully home. I also remember the doctor saying a few stupid things...bless his heart...one of them being "Now do not let this ruin your weekend or anything." 

Idiot. 

Thus followed the appointments and the blood tests and the needle biopsy... and the weekend where I basically turned into a mad woman just wanting to get "the phone call" over with one way or the other. I tried with all my might to think positive. "It is just normal calcification." 

The next morning my surgeon phoned and reluctantly said, "It is cancer." News I am sure that is never easy to deliver, and never easy to receive. Diagnosed again the morning of October 3, 2011. At the beginning of National Breast Cancer Awareness Month. 

Most of you familiar with my blog know that that since September it has focused primarily on my autoimmune condition as a way to reach out and help others as well as help myself. And I had actually planned on blogging a few times for breast cancer this month to tell my story from 2010 as well as my Nana's. But alas my adventure continues. And so the fact is when something "extra" in the health department like this comes along it can feel like trying to move mountains. Surgeries that take what us spoonies call a "normal" to recover from could take four to five times longer for someone like myself. And I have had quite a few surgeries and hospitalizations the past four and a half years. Set back after set back after set back. I was just getting to a nice point where things were a bit more managed. Enjoying my part-time job, spending more time in my studio creating for my business and so on. So this time, I am pretty grumpy. Oh I know that there are blue skies ahead and "this too will pass" and "stay strong" all of that good stuff. That I am lucky they caught it early and there is so much they can do now, etc. etc. But I was thankful to find that this was exactly another woman's reaction in one of the brochures the doctor gave me which included some personal stories of women and how they felt. "This cancer is just a nuisance." she states. Because just how many time-consuming, energy draining nuisances can you put up with before you cannot help but say really? Seriously? Now??

BUT....cancer made a mistake knocking on my knockers again I tell you. Thus the photo. Because I have been knocked down plenty of times. If this sucker thinks it is going to win, it has another thing coming. I may lose a lot of time to surgery, recovery and possibly even treatment but letting it win is not an option. I know this deep inside, although I tell my husband I am tempted to cancel my surgery, max out my credit card and go to Hawaii with him. But you cannot run away from something dangerous inside you. The ticking time bomb needs to have the right wires cut. Oh but goodness lets not use the word "cut". The surgeries will be tough. The recovery will not be fun. But I plan on winning. And if even one person is helped by this blog, or one person can help me who has been there, I am grateful. This disease touches so many people that is why we are bombarded with pink stuff now. I have always been a great supporter for the cure. In the past I did a breast cancer walk to honor my Nana. Now I look forward to another t-shirt in my future.. "Survivor".  After all, I am small but mighty. 

More to come....♥

MR. HE RECOMMENDS A LITTLE REST....

Well, today is the last day of Invisible Illness Awareness Week. I had planned two more special blogs, one for Saturday and one for today to conclude the week off right before continuing on. Unfortunately, I had something come out of left field on Friday and it greatly waylaid me. I still plan to eventually write those other two pieces and I will also continue to blog about this subject from time to time, but I am also looking forward to blogging about other things, too. 


So for now, I wanted to stop and thank the people in my life and the people who have responded to this blog from the bottom of my heart. I was really surprised at the response, to be honest. Apparently trying to make comments here on the blog itself is a bit tricky sometimes (darn those blogger software people hee hee!) but my email box was often full from people who really appreciated what I have decided to do here, and that made it all worth it. So thank you all, including my very loving family and friends, for sticking with me on this. 


Each day with an invisible illness can be a challenge, even when you have the good days. Being told we are "strong" is not always something we want to hear when we are feeling at our worst and still trying to do the best we can. So just know you are not alone. That your condition is unique. And it is ok to talk about it and be honest with people and most importantly, yourself. Because what you think is what matters most. Be good to yourself.


Wishing my spoonies extra hugs and spoons and love to my family, friends and online friends. See you real soon....

Mr. He recommends some extra rest right now......

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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