Let Loose (Comments and Forum)

Here is your chance to let loose and express yourself! 

No matter what stressful situation you may be in, whether it be living with lupus, living with diabetes (or any other chronic disease), having a crap day at work, or just not getting your way, I believe that we have every right to have “your moment”.

What does having “your moment” mean? There are many ways of expressing your frustration, anger, and the “this is just NOT fair!” feeling in the pit of your stomach. Every person has their own way (and right) for doing this. Personally, I call them my “queening out” moments. You are more than welcome to post “My joints hurt today… this sucks!” OR “I am tired of (fill in the blank)!

The second goal of this page is to give you a chance to ask questions. I am so fortunate to have a dear friend who is a lupus veteran  (Veero) who i can turn to when I have any questions and suggestions for coping strategies. It is always amazing how much you can learn from somebody else’s experience.

I want to provide a comfortable, non-judgmental place where ideas and questions can freely be expressed. Let’s be respectful of comments and ideas.

lupusecard_8

Just in case, here are some rules: 

1.  No discussion of any illegal activity of threats of violence.

2.  No use of explicit, obscene, or vulgar language or images and/or messages, including racist remarks. Trust me- I know it is hard to not say F*&$ this and that… but instead for the purpose of this page and for the respect of all let’s use terms such as “DANG”, “FUDGE”, etc. Be creative 😉

3. No posts that attack, insult, defame, or abuse others. Let’s play nice and respect other comments. Don’t belittle or make fun-of others. Decisions about health and well-being are highly personal, individual choices. Insults will not be tolerated. Agree to disagree. 

4. Absolutely no advertising or links to advertising or “Spam” is permitted. Advertising or Spam is defined as posting a link for the purpose of selling, soliciting, or promoting by someone that has ownership or other “vested interest” to the website involved. Links to helpful websites are allowed when they are posted by someone without any “vested interest” AND whose purpose is NOT to solicit, advertise, promote, etc. Links must be appropriate and abide by rules #1-3 or they will be removed.

5. No posts of an overtly political or religious nature! This forum is intended for offering mutual personal support. Debating controversial subjects should be taken elsewhere.  Limited religious references are allowed (i.e., “my prayers are with you” or brief quote as part of a larger post”) but this is not the place to convert others.

6. No posts of lengthy articles. Share the “bottom line” of the article and post the link.

7.  Do not post offline personal contact (i.e., home address, phone number etc).

8. If you are a medical professional, please remember that this is for patient support and not to be used for distributing professional medical advice.

9. Please help by reporting posts that violate the rules and guidelines. Do not reply to the offending posts as that typically only encourages the poster. Just ignore them.

10. Use good judgment! Never rely on information or opinions exchanged here to replace necessary, personal consultation(s) with qualified health or medical professionals to meet your individual health or medical needs.

11. Lend a helping hand. A bit of compassion can go a long way toward helping people with life’s challenge and reaching out can help alleviate feelings of frustration. At sometime or another, we all need or want help or simply someone with whom we can share our burdens or successes.

12. Don’t be afraid to share. Your experiences (good and bad) could be valuable to someone else.

13. Overall, have fun and play nice in the sandbox!

16 thoughts on “Let Loose (Comments and Forum)

  1. wow all the information on this blog is great I started researching lupus info when a close friend got dignosed with lupus and I wanted to know what he might be going threw, but as I kept reading your blog I came across the so called ex you mentioned “mr aguing” and its a small world because Im more than certain that I know him and the heathy woman you speak of which has been is girlfriend for five years, I know what he did but he didnt leave you because you were sick as you claim, but it doesnt matter, I honestly think not telling the truth is not very lady like of someone like you, hopefully you get your facts straight and be honest and not place first initials and last names as if people like me wont possibly know who your talking about, but on a good note your info on lupus has been very help for me to understand what my dear friend is going threw. Hope you get better and they find a cure very soon for my friend and you and everyone else who suffers from lupus too! And dont worry I wont ever post anything else on this blog since its suppost to be information for people about lupus not lies.

    • Please note the text of comment was not altered to maintain the integrity of the message.
      The comment deserves attention for the following reasons: 1) The comment was posted at 3 am with dire concerns regarding my personal experiences, and 2) accusations were made that my personal experiences are fraudulent. Therefore, as a favor to my new fan who seems to be loosing sleep over the impact of my blog, I am going to dedicate this post to address “her” concerns.

      Liar, Liar Pants on Fire
      First, thank-you my dear fan for your comment (as I bow and take in the applause). I strive to provide support to my fellow lupus patients and their family and friends, even in the narrative fashion of sharing my story. I share lupus-related themes that I have experienced. I tell the truth- and my truth is raw, filled with all the glamour, glitter, and includes the fabulous flaws of my life. These elements make me the diva that I am today, therefore, do not need to make-up these stories- there is no need to! My raw story is beyond superb and will get you to clutch your pearls. Sandra Cisneros, an award-winning author (House on Mango Street is a classic!), said it best when describing her style: “I try to be as honest about what I see and to speak rather than be silent.”

      To my dear fan: Excuse me? How dare you accuse me of not telling the truth!? Is it such a small world that you know me and my experiences? If you do know me, may I hire you to write my stories? (typing has become more difficult lately due to the pain in my lovely hands). Obviously, the content of my story concerns you, but interestingly, it is not because of its lupus-related nature BUT by the presentation of the characters in my autobiography. You seem to be absolutely sure that you know “Mr. Aguinaga” and the very minor role he played in my life. I only present him in context of how my story begins- he was around when I started noticing my lupus symptoms. How small of a world is it that you may know the SAME male who has cheated and lied? I mean really… WHAT ARE THE ODDS!!! If by the random chance, we know the same “Mr. Aguinaga”, then he has been cheating on his girlfriend of 5-years. <insert dramatic music> If by random chance, we know the same “Mr. Aguinaga”, then I will let you in on a little-(not-so)-secret: He has cheated on her multiple times throughout the five years (he loves to juggle more than one relationship). Lastly, if by random chance we know the same “Mr. Aguinaga”, then let me throw some more truth at you (this is a freebie- because I am feeling so giving at the moment): While “Mr. Aguinaga’s” five-year girlfriend was giving birth to their son, “Mr. Aguinaga” was at his other girlfriend’s place. Truth.

      In conclusion, dear fan:
      1. I don’t think the problem is that my “pants are on fire”. I think that maybe the problem is that you do not like the truth I am telling.
      2. I will always be classy and lady-like; that is what makes me the Diva.
      3. You’re welcome

  2. Wow! Wow! What a donkey! I am shocked by the unmitigated gall of Abby (who we all know is the “baby-momma”)!!! Instead of being a mother and watching her damn kids, she is up at 3 am staring mess on this blog and trying to give lessons on being a lady—probably because her “baby-father” is not in her bed! Wow!!! There is so much going on in her situation… Frankly, it is depressing… I see another uneducated woman having babies, putting energy into inconsequential mess, in denial, stuck on stupid and trying to “ride it out” for someone who is dogging her out. Pay attention to your kids instead of starting mess on the internet! Abby, please do better for yourself and your children–especially if you have a daughter because she is looking to you as an example!!! Stop having babies! Get your GED! Go to college! Get a job! Then you will have a life and not need to start mess on the internet giving incompetent etiquette lessons!

  3. As a 33 year old, old skool punkrawker just diagnosed with lupus, I stumbled upon your blog and I no longer feel so alone. I am confused with all this medical mumbo jumbo and barely know this doctor who is now disrupting my life haha. I was planning on running my first marathon in October, but the past few months of pain and frustration have backtracked my training. Thank you for making me smile, laugh and feel hopeful today that I can do anything I put my mind to.

    • You have certainly made my day! Thank you for the kind words. We all have our moments when we feel that we no longer have control over our lives. Although that may be slightly true, I have to constantly remind myself to just live for the day (even if that day was spent in bed… that means I liiiived that day by resting).

      Welcome to the club! I wish you the best of luck. The first couple of years is one hell of a rollercoaster (sooorry but so true). But I promise you this, you will amaze yourself everyday with the strength you possess to fight this daily battle. Yes, it bloooows but I have discovered myself (in my thirties) through this crazy battle. Just remember the following: it is still your life honey! Do you want to spend the day on the couch? Do it! Do you want queen out when someone complains about a papercut? YES!! Do it! Do you want to run? Do it! Just remember to listen to your body and know your limits. If you can’t make the October date, then damnit you run the next marathon. Your goals don’t need to change, you just need to alter how you achieve them.

      Today, I was feeling kind of blue. I, a thirty-something single chic moved back to my parent’s because it has become a tad difficult to live solo. But as I write this I am refueled with strength and hope that things will get better. Thanks for that! Keep me posted of your journey.

      You are fabulous!

  4. You truly are an ammaazzinng girlie! I’m sure you’re thankful that you have your parents home to go back to (alas I just moved my mom to her own place;there is no more “folks home” to retreat to) and I just moved into my own place with my boyfriend during xmas this past December. While we are getting to “know” each other, we are now faced with how to deal with me being a “newbie lupie” and of course I worry about if he can deal with the craziness I am bracing myself to face. I am a 12 year cancer survivor so I am trying to look at this diagnosis as just another thing I need to overcome (in theory!) in life. (I guess ultimately accepting that changes will have to be made in how I approach each day) I am also a psych major interested in addiction and brain physiology bracing to go back to school this fall. My bf travels a lot, so at least you will always have someone around and people that understand YOU. I have my cat, but she doesn’t talk back but is a GREAT hugger when I’m having a down moment! I’ll probably pick your brain in regards to all this medication mumbo jumbo that I am just not getting and thank god I have great insurance! I really am inspired and feel connected to you for some strange reason and seriously I am oh so glad I stumbled upon your blog, because the laughter I got gave me strength for a short run. You are awesome and just keep smiling, because you inspire people!

    • Oh Honey- I feel the same connection as well! YOU ARE NOW MY INSPIRATION! You obviously have incredible strength and I know you will rock and overcome anything that is thrown at you. Thanks for sharing your story because it has certainly brought me some perspective and motivation. Please ask me anything you want and I will most certainly do anything I can to help bring some clarity.

      Best of luck on this new chapter of your life. Keep us posted!

      • First of all, how are you feeling? Are the infusions helping? Are you working? And how is the moving back in with the folks going? I see my enemy tomorrow to find out a game plan, medication, etc. My pain has been so rough this past week and I’m uber frustrated because it’s been hard for me to get down my stairs (I live on the second floor of my apartment building) and I have had no energy to run, let alone get off my couch! Work is the only thing saving my sanity because at least I get out of my head for 9 hours! I’m sooo scared about the meds because the research I’ve been doing says almost everything causes fatigue and right now I work with the public so I need energy and I am more suceptible to infections. And I’m supposed to start back at school in august and how the heck am I supposed to do that if I have no energy? Some days are better than others, but the joint swelling and pain is taking it’s toll on me. I’ve been on prescription strength naproxen (880 mg a day) and tramadol for pain (300 mg a day) until they figured out my blood work. What have you found works best for break through pain and everyday pain? Is an anti malarial better if you can’t stay home from work or should I just suck it up and try methotrexate and see what happens? In your experience, have you had a break with the flares and had periods of relief, or does the pain always stick around? I know you’re busy and not feeling well, but I respect your opinion and input so any suggestions are welcome! Hope you’re feeling more spunky! Lots of hugs, glitter, unicorns and rainbows! ❤

  5. Oh and I started a daily pain/mood journal and I have a pretty tech savvy and hip rhemy so I am able to just send everything from my iPad to his. I’m hoping this is beneficial because I tend to forget EVERYTHING the minute I walk into my doctors office! Should I be documenting anything else specific? I am gonna be armed and dangerous with information and will be crazily proactive with my care dammit!

    • AAAHHH! I am the worst that ever did it! I am so sorry for not responding sooner. Things have been so hectic with moving, work, and getting flares (lol). How is everything going? I am glad that you are being crazy proactive with your health. FYI: Numerous studies say that patients who are heavily engaged, invested and active in their health management have better outcomes. So, I think you are off to the right start! Stay Fabulous Friend! Hope to hear from you soon.

  6. You are a true inspiration to me! I was diagnosed 10 years ago with Lupus & Ra in my senior year of HS. My sr prom weekend, I will never forget. Over the years I have been on Cellcept & Cytoxin, but my body didn’t tolerate it. earlier this year I started Benlysta, but had to stop because they found out I had Avascular Necrosis in both hips. I had my left replaced in june & my right will be done later this fall after my “walk for lupus” I have a true miracle baby named Enzie. Shes 3 & acts just like me & looks just like my husband. 🙂 I had a total hysterectomy last year so she is my everything. I started methotrexate almost 4 weeks ago & all I have notices is Im soooooo tired, my eyes are a bit yellow, blurred vision, nausea, & some tummy issues. Still same old pain all over. Thank you for sharing yoyr story! You are a rock star!

  7. I’ve lived with SLE & Sjogrens for one decade (diagnosed – two if you count the “borderline” years), survived two divorces and was gifted one miracle child I was told would never be possible. I’m on the benlysta/methotrexate train since I can’t take Imuran, and am now facing Stage 3 CKD (among other things too boring to mention). There’s probably not much I can say that the Diva hasn’t, just some unsolicited advice from someone about to exit her 30s and still tries to stay fabulous.

    – Be selfish! Find an indulgence that is entirely your own (shoes in my case: at least one frivolous pair a month) and never feel guilty about it!
    – Travel if and when you can: four countries for me this year and I’m not done yet – tomorrow and later don’t exist in my vocabulary.
    – Stay vital to yourself and others (within reason): I run two companies even when it feels like I am losing myself to the pain, because it gives me purpose – they are businesses dedicated to helping people, so there is always a reason to be well.
    – Keep those you love close and chuck the rest: Only those who allow you to be “sick” will support your recovery, and can accept the reality that relapses are not your fault
    – Be your biggest fan: Don’t expect anyone to understand the achievement it truly is to get up every day, just celebrate it in your own way.
    – Forgive yourself and your body: It’s not your fault. It’s not up to you to fulfill society’s insane expectations of women. If you give yourself permission to be at home in your own skin, it doesn’t matter what other idiots say.
    – Use these forums to support each other: It takes bravery to start and maintain a site like this. Please don’t cheapen it or the intent of its creator with the inane pettiness of banality (as in whatever coward posted that Jerry Springer BS about the woman who created the site. Seriously? You have nothing better to do?)

    I came on this site by accident, looking for a benlysta side effect – and with a broken arm that won’t heal with the meds, I wouldn’t waste time posting unless I believed in what staying fabulous can do for sanity when dealing with lupus. I don’t know if anything I say here is new to any of the followers, I just hope it validates what the Diva is doing and encourages everyone to believe in the power of personal integrity and conviction. Be proud of yourself every single day, and have faith that if you feel something, chances are someone here does too. Lean on each other, question everything and trust your instincts. Armed with these things, the disease will never truly win.

    Diva, thank you for starting and maintaining this site. I wish you all the best in your ongoing win against what challenges you. No matter what happens, you will never lose.

  8. Hey, I was diagnosed with lupus about six years ago. I am 42. I currently take prednisone, methotrexate, plaquenil, Mobil and just finished my load days of benlysta. My main issues are my joints. Over the past year I’ve gained 25+ pounds. I am pretty active in that I work full time and my husband and I have a fishing guide business on the weekend. I don’t exercise. I eat normal. The weight gain has really depressed me. My clothes don’t fit and my self esteem is in the tank. I’m frustrated. I even tried the hcg diet and I didn’t lose weight. My lupus dr says its the years being on the prednisone. So i decided to ween myself off the steroids. well my body hasn’t liked that and the pain ive been in has brought me to tears. I ventured out after work and went shopping today or I tried to anyways. I left, got in the car and cried. I just can’t buy the next size that my body needs right now. I finally decided enough was enough. I started back the prednisone today so I could start feeling somewhat normal again. I am going to start my day off with working out and eating healthier and see if I can get my metabolism to work a little. I’m praying the benlysta will have good results in a few more months. I’m very grateful to have found this blog. Thank you. This disease SUCKS!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s