Hey everyone!! Sorry about the delay in posting this. If you read my last post, you would understand why I didn’t do this sooner. But I am feeling much better now so I decided to, you know, carpe diem!
I know that I did a “before video” and I really wanted to do an “after video” as well. Okay. That is a total lie. I HATE doing videos. I hate how I look and how my voice sounds in them and to be honest, I am NOT comfortable posting a video while wearing shorty shorts and a bikini top.
BUT I WAS GOING TO DO ONE, I SWEAR!!
Although I only received a few comments on my blog about my 4 Week (Not Weight Loss) Challenge (thank you so much to those who left comments! I truly cherish all of them), I have also received emails, private messages on Facebook, and have had some good old fashioned face -to-face conversations about my posts! I am truly touched by the support, the kind words, and mostly by those of you who have told me that I am an inspiration for you. Wow. I really wasn’t expecting that at all and what a blessing that is for me! You all rock!!!!!
So, although I loathe making videos of myself, I decided that I owe it to my readers to do a follow up video. But the G Damn, mother effing piece of shit crap that I own is determined to put me through a living hell today. I got all ready…put my hair in a ponytail, put on the shorty shorts and bikini top, even a little lipstick for good measure. I plugged in the NEW camera with the EMPTY 64 GB (or whatever size it is. You know, the big expensive one) SD card and the damn thing kept telling me, “the video section of the memory card is full. Can not record videos. ” I put the card on the computer several times to erase what wasn’t there. I dicked around with the camera to erase what wasn’t on it. The thing is still telling me the same thing. And since I can’t take a picture of myself very well, you are all out of luck.
I really am sorry about that. I promise you that I spent an hour trying!!
But! I DO have my results so don’t leave me!!
The very best thing I have gained from doing this challenge (aside from learning that I have been an inspiration to others because that is huge) is feeling healthier overall. My lupus symptoms have diminished so much! I still have pain and fatigue but it really is nothing compared to how I felt before all of this. I was THIS CLOSE (my thumb and index finger are almost touching right now) to either being put on Prednisone or increasing my chemotherapy in the beginning of July and the thought of either of those scared the shit out of me. But because of eating a cleaner diet and exercising 5-6 days/week, my meds were not changed at all and my doctor actually wrote on my “to-do list” he makes for me, “Keep up the exercise! Good job!”
For those of you who keep telling me, “Don’t lose any more weight, Nicki!” I want to say this. I truly appreciate that you are telling me I look good. I do. And I don’t feel like I need to lose any more weight. I am actually content with my body right now. However, if doing what I have been doing is going to keep the Lupus Monster under control, I will continue to plug away regardless of what I weigh. So, I want to thank you for telling me that I look good but please understand when I get defensive in reaction to those comments.
Some people have asked me about maintenance program for this diet and exercise regimen. My maintenance program is being mindful of how I feel and what the scale reads in relation to how I ate and if I exercised that day. If I feel good and the scale is kind to me, I allow myself a bit more of the healthy stuff or a slice of pie. If I feel like shit and the scale calls me a whale, then I am strict for the next week. Overall, I am allowing myself to have my little indulgences but for the most part, I am sticking to the diet and still waiting for Saturdays to cheat. I have cut out the 20 minute cardio before breakfast but I still do weights 5 days/week with cardio following.
So…here are the numbers!!
Start Weight (on 7/2): 136
Today’s Weight: 127.8 (Lost 8.2 pounds)
Pant size on 7/2: 8-10
Pant size today: Mostly 6. One pair I tried on had to be an 8.
Hips on 7/2: 39 inches
Hips today: 35.5 inches (Lost 3.5 inches)
Upper thigh on 7/2: 24 inches
Upper thigh today: 22.75 inches ( lost 1.25 inches)
Waist on 7/2: 30 inches
Waist today: 27 inches (lost 3 inches)
Bust on 7/2: 36 inches
Bust today: 33.5 inches (lost 2.5 inches…good luck finding a bra that fits that)
Saddle Bags on 7/2: 41 inches
Saddle Bags today: 39 inches (lost 2 inches)
I hope those of you who felt inspired stay that way! If you have setbacks (and you will), know that you can pick it right back up the next day! And, very importantly, remember that if you weigh yourself the day following your cheat day, you WILL be 2-4 pounds heavier than the day before. IT IS OKAY! Cheating after you are very strict with your diet and then resuming your strict diet after your cheat day actually boosts your metabolism and within 3 days, you should be below your pre-cheat day weight…if you stick to the diet and exercise. If it really bothers you, DON’T WEIGH YOURSELF UNTIL 3 DAYS AFTER YOUR CHEAT DAY!
Here is a laugh for you!
As always, I appreciate your feedback!
- Time For Another Challenge Update (thenlistblog.com)
- Weight And Size Update!! (thenlistblog.com)
- Sorry, No “Before” Pics (thenlistblog.com)
- Another 4 Week (Not Weight Loss) Challenge Update!! (thenlistblog.com)
I am on day 17 of my 4 Week (Not Weight Loss) Challenge and the benefits of doing this have surprised me!!
Here is a breakdown of how I have been doing:
This seems to be the hardest part (I KNOW it is a challenge in discipline! This is why I NEED such things). The funny thing is that I have not been over-eating or eating things that are not allowed…I have been UNDER-eating and it truly is a matter of time management. I should be eating 6 small meals per day. In order to get them all in, I need to eat about every 2 hours. Life has been so busy with my daughter’s graduation party that I have had about 3 days that I didn’t eat like I should. This may not seem like a big deal (eating less than I should) but it actually is. If my calories are too low, I will lose muscle as well as fat. If I don’t eat frequently, my metabolism will slow down. And if I don’t stay disciplined, I am losing sight of my goals.
BUT!!! Here is the thing….I will do my best to get back on track but regardless of skipping a few meals, I am soooo damn happy with the way this has been going!
Not cheating has become easier and easier for me. I TOTALLY look forward to my cheat day (when I eat anything and everything I want) but in-between cheat days has been so much easier that I remember it being when I was training for my bodybuilding competition. Sure, I still have the desire to eat the forbidden stuff (frosting off my daughter’s cake, the pasta salad just taunting me in the fridge) but it is more an annoyance than anything.
Exercise: I can’t tell you how happy I am with my workouts!!!! I really dreaded working out 6 days/week and to be honest, I am not crazy about it at all. I still push myself through but when I am done, I feel fantastic!!! I feel so proud that I spent all that time working out rather than eating. The endorphins really do feel awesome. But most importantly…
I AM KICKING LUPUS’S ASS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This was the benefit I didn’t expect. Yes, I wanted to prove that I could do things that Lupus seemed to be preventing me from doing but I never imagined I would feel this much better! My pain is practically non-existent in comparison to how I felt before I started this challenge and my energy has increased so much! Even my son commented on how much energy I seem to have now. I am worried that when I go back to school, I won’t have the time to work out and I will feel worse again but I will cross that bridge when I get to it.
Weights and Measures:
Starting weight: 136 lb.
Today’s weight: 130.8 lb. (down 5.2 lbs)
Right upper thigh: 23.5 inches (down .5 inch)
Hips: 36.5 inches (down 2.5 inches)!!!
Waist: 28 inches (down 2 inches)!!!
Bust: 35 inches (down 1 inch)
Ass/Saddlebags: 40 inches (down 1 inch)
MY PANTS ARE GETTING LOOSE ON ME AND MY BRA NO LONGER DIGS INTO MY STERNUM!!! SUCCESS!!
I am going to say something here that will rub people the wrong way. Some of you who I consider to be my friends (either in person or in Blog Land) will disagree or start to feel the rage build up inside of you and I am okay with that. Why? Because I am responsible for my feelings and you are responsible for yours. Also because I believe that there is truth to what I say and I would rather be hated for being honest than liked for being fake. If you know me personally, you know that I live by these beliefs every day. You probably even know this because you and I have gone toe-to-toe at least once and at times, it got ugly, didn’t it? But if you are reading this then it means that we worked through it and you still respect me (at least a little) and I can promise you that I still respect myself which is really all that matters to me. Keep in mind that I only speak for myself. I can’t speak for you or anyone else so what I have to say is all about what I think and feel.
I am NOT okay with being over weight. I know I am not obese but I at 5’1″ and 136 pounds, I am overweight. I am not okay with the way I look when I am overweight. I am not okay with the way I feel physically when the waist of my pants puts pressure on my gut and causes discomfort all the way up to my chest. I am not okay with how my digestive system acts when I am overweight. I am not okay with feeling like I am going to crap my pants in the middle of a meeting and then again an hour later while I am caring for a patient. I am not okay with my bra feeling like a bar is digging into my sternum. I am not okay with having indentations in my ankles an hour after I have taken off my socks. I am not okay with being short of breath because my body has to work harder to move me around and MOST IMPORTANTLY, I AM NOT OKAY WITH FEELING LIKE I DO NOT HAVE CONTROL OVER MYSELF. I am not okay with blaming my weight on a long line of family genes. Yes, my whole mother’s side of my family was very overweight. They were all that way because of poor diets and lack of exercise, not because of genes. I am not okay with saying that I can’t workout and exercise because I have Lupus. In fact, having Lupus just means that I have to work harder and more often so that I stay mobile and my heart can stay healthy. Lastly, I don’t believe that anyone that is over weight is okay with it. I AM okay with overweight people. I do not believe anyone’s character should ever be judged by what their body looks like. But I am not okay with people lying to themselves because that is not healthy mentally or physically. It IS okay for people to not like aspects of themselves because that can lead to healthy changes. I believe it is easier for people to try to convince themselves and the world that they are okay with being overweight than to suffer the emotional upset of admitting that they are not okay with it and push themselves physically and mentally to overcome it. I believe that each and every person who says that they are okay with being overweight looks in the mirror in private and feels horribly bad (if they even allow themselves to look in the mirror). I BELIEVE EVERYONE IS BEAUTIFUL REGARDLESS OF WHAT THEY WEIGH AND I BELIEVE EVERYONE OWES IT TO THEMSELVES TO BE HONEST AND DO THE WORK TO TRULY FEEL GOOD ABOUT THEMSELVES.
I have struggled with weight for most of my life. Although I am not anorexic (God, how could I ever turn my back on glorious food?) nor do I purge after my meals, I do binge. Binging in the absence of purging IS an eating disorder and I BINGE! I have to work every single day to not binge. I have to work every single day to avoid telling myself that I deserve to binge today because I did so well on my diet yesterday. People that watch me binge are amazed. They wonder how the hell I could scarf down 3 huge plates of pasta with sausage and meatballs all at once but I do it and I can do it often.
I can’t tell you how many times in my life I have set a goal to lose weight but I can tell you that not only did I fail each and every time, i I also gained about 10 pounds as a result.
My first true success at losing weight was about 13 years ago. I walked into the gym and the owner asked me “How much weight do you want to lose? What is your goal?” At the time I was a size 16 (remember, I am only 5 feet tall) so I understood his confused look when I answered, “My goal isn’t to lose weight. My goal is to build upper body strength and endurance for firefighting.” As a result, I got stronger, I had more endurance, and I eventually lost 61 pounds and placed second in a bodybuilding competition.
My bodybuilding days are long gone and in the 12 years since I have competed, I have struggled with my weight over and over again. I never got as heavy as I was before but when I started buying size 12 jeans, I realized something. I was back to my old habits and within a year I would be wearing the size 16′s again if something didn’t change. So, I lost 12 pounds and have yo-yo’d over and over again.
It has been so easy to blame my lack of exercise on Lupus. It is easy to blame my eating crappy foods on Lupus. After all, if I am too exhausted to go shopping, how can I eat healthy?
But I am a control freak and I HATE feeling out of control of my life. I hate when I allow circumstances to make decisions for me. And I realize that I DO ALLOW THAT. I choose to take the easy route as many of us do. I choose to place blame rather than accept responsibility. And I just won’t tolerate that anymore. When I really thought about it, I realized that my goal was NOT to lose weight, look hot, or fit into a certain size pants.
My goal is to be in control of me. My goal is to not allow Lupus to make the rules. My goal is to not blame my fat ass on my mother and her mother and her mother. Yes, the SHAPE of my ass is in my genes but the SIZE of it is under my control. A “fat ass gene” simply does not exist. I want to be autonomous. I want to be the author of my life, not despite my circumstances but IN SPITE of them. I have choices each and every day to make and I want to make the right choices.
When I started my 4 Week (Not Weight Loss) Challenge 4 days ago, I set an INTRINSIC goal rather than an extrinsic one. This means that I set a goal that comes from within me (intrinsic), not from outside of me (extrinsic). I set a goal that will feed my need to be autonomous and choiceful in my life (intrinsic) rather than a goal to look better or see a smaller number on the scale (extrinsic). And when I achieve this goal, you may or may not see me any differently. I may be more physically fit. I may look the same or I may even look bigger. Since I decided on a healthy way to achieve my goal, I am assuming I won’t look bigger and I am hoping I look more physically fit but either way, the benefits will be on the inside of me and they will last a very long time.
My goal is self-discipline; to be in control and in charge of me no matter what. This goal helped me a great deal yesterday. Yesterday was day 3 of eating and working out as if I were training for a bodybuilding competition. I felt exhausted and I wanted to pig out! I thought to myself, “Self, you did awesome for 2 days, you lost 2.6 pounds already, and you can totally skip 20 minutes of cardio today. Hell, you can even eat an extra spoonful of peanut butter. It isn’t going to kill you. It is still way better than what you were doing before this challenge!” Then I reminded myself the goal of my challenge. If my goal was to lose weight, I totally would have listened to that devil on my shoulder. But my goal is to be disciplined and listening to that devil would have proven to me that I really don’t take control of my life. As soon as that though entered my mind, I felt the energy to get on the elliptical and my craving for more food wasn’t nearly as strong. I woke up this morning and got right on the machine as I planned.
This challenge will not be easy. I know that. There may be times when I try to convince myself that my goal was stupid and I really am okay with being out of control at times. But that would be taking the easy route and I would be lying to myself.
I read a wonderful article that provides a brief guide to attaining your goals at the Healtdemystified blog. Click here to get this awesome information for free!!! I have to say that it is purely coincidental that I have many of the same points in my post as there are in his guide! I wrote my draft before getting caught up on some blogs and came across this one. I was floored that much of what I was saying in my post was said here!!
- Eating disorder behaviors and weight concerns are common in women over 50 (eurekalert.org)
- My (NOT Weight Loss) Challenge (thenlistblog.com)
- Fast And Easy Weight Loss Tips That Work (musclebodyfitness.org)
- Things I do every single day to keep the weight away (threev.com.au)
- How much can you save on life insurance by losing 20 pounds? (insurance.com)
- A pair of milestones, and some insights into how I am becoming fit and losing weight. (diaryofcalories.wordpress.com)
- Mind-Body Connection (everydayhealth.com)
- Childhood Overweight and Obesity (education.com)
- No More Lies (butterflywarrior.typepad.com)
- New study finds disordered eating among older women (newsobserver.com)
- Being Overweight and a Bit About a Wedding Dress from 1995 (redheadwriting.com)
- How Changes in Body Weight Affect GERD (everydayhealth.com)
- Watch The Weight Drop Off Your Body (musclebodyfitness.org)
- No Longer Obese! (dickstersrandomthoughts.com)
- Managing Your Diet to Keep Lupus in Control (everydayhealth.com)
- Parents ‘are scared to talk to their children about weight issues’ (itv.com)
- How to Get Into Shape (answers.com)
- Follow These Tips And Reach Your Weight Loss Goal (boldstate.com)
- Bulimia (prescribedperception.wordpress.com)
- Eating disorders can hit at any age, report (canada.com)
- What’s a Healthy Body Weight for Your Age? (everydayhealth.com)
- Bulimia Nervosa and Receiving Social Security Disability (socialsecurityhome.com)
- Eating Disorders Hitting Women Over 50 (health.usnews.com)
- Drop weight like Charles Barkley (foxnews.com)
- How To Lose Weight And Feel Great Doing It (musclebodyfitness.org)
- 2012 Olympics and Achieving Your Goals (startingwith.me)
- Competency One: I am determined (soberidentity.wordpress.com)
- Goal Achievement Quote – July 4, 2012 (goalhabits.com)
- Be Successful – Making A Personal Change – Part 5 Select Your Goals For Change (wisewolftalking.com)
- New Achievement Unlocked: Six Week Challenge Success! (thesnowfoxblog.wordpress.com)
- What I believe (poweredbymythoughts.wordpress.com)
- 9 Tips To Help You Reach Your Diet And Exercise Goals (stomachfatlosstips.wordpress.com)
- Why most people don’t achieve their dreams (thechangeyourlifeblog.wordpress.com)
Totally stuck to the diet and exercise plan today despite the fact that the fire department had a wonderful dinner of Italian sausage with peppers and onions, corn, salad, and SALT POTATOES for dinner. So proud of myself for not giving in!!!
I considered posting before pics for my 4 Week (Not Weight Loss) Challenge. Then I changed my mind because I really don’t take good pictures. Then some people said I should and I started to think that if I don’t, I will regret it, especially if I look super hot after this is all said and done. Then everyone left the house except for my 14 year old son and there is NO WAY I am giving him a camera while I stand before him in a bikini top and my daughter’s shorty shorts. So….I have a video.
God this is sooooo embarrassing!!! Sandra, this is for you!!!!
As I said, this is not a weight loss challenge but we all know that I will be pissed off if I don’t lose any weight!
I mentioned my “stats” in the video. I forgot to mention that I am currently a size 10. Just sayin’ to keep with the full disclosure crap. It doesn’t get any more transparent than this, y’all!
- Weight Loss Tips And Tricks That Lead To Success (musclebodyfitness.org)
- Check Out Paula Deen’s Weight Loss! See Before And After Pics! (now100fm.cbslocal.com)
I have been on a bit of an eating binge lately and I have not been exercising regularly. I have decided that I need discipline. Essentially, I am Cartman. Except even Cartman gets a workout.
When I trained for my bodybuilding competition in 2000, I was incredibly disciplined. I think I cheated on my diet 8 times total in my 16 weeks of hard-core training. And by “cheating” I mean that I only had ONE bite of something not on my diet. One extra teaspoon of reduced fat peanut butter or one teaspoon of icecream or 3/4 of an apple instead of 1/2.
People that didn’t understand bodybuilding (or me for that matter) judged me and they had no problem with putting their ignorant two cents in every single day. I was told that I was anorexic. I was criticized for eating only half of the apple. After all, apples are so good for you so why would eating a whole apple be cheating on a diet? I did my best to ignore them and persisted.
Now that I am not bodybuilding anymore, I don’t need to eat and work out as if I am training for a competition but for the next 4 weeks, that is exactly what I am going to do. Okay, not EXACTLY. My workouts won’t be AS intense but they won’t be taken lightly either. When you see the diet and the plan, you will most definitely say, “Why the hell would she want to do this, especially if she doesn’t HAVE to?”
I am doing it because I want to feel better. I want to feel stronger. I don’t want to be short of breath doing the simplest things. I want to BE PROUD OF MYSELF again. MOST IMPORTANTLY, I WANT TO PROVE THAT LUPUS DOESN’T MAKE THE RULES; I DO! And…if I lose some inches as a result? BONUS!
This is a 4 week challenge in DISCIPLINE, not weight-loss. And because I hold myself accountable more when I share my goals with the world, I will be documenting my progress for all of you to see.
Today’s weight: 136 lbs. I don’t have a tape measure yet but after today, I will be documenting my measurements as well because that is more telling than weight.
The Exercise Plan
After my first cup of coffee and before breakfast, at least 20 minutes on the elliptical 6 days/week and an abdominal workout 3 days/week.
After lunch or dinner (depending on the day’s schedule) Monday-Friday, a weight work-out then 20 minutes of cardio. No weight training on the weekends unless I skip a workout during the week.
The Diet (This was the diet I followed religiously while training)
Meal #1: 1 whole egg plus 2 whites with 1/4 cup of fat-free shredded chedder and salsa or Frank’s Hot Sauce
Meal #2: 1/2 protein bar, 1/2 apple (or 1/2 cup strawberries), 1 teaspoon reduced fat peanut butter
Meal #3: 15 large shrimp with cocktail sauce (or) 1 can plain Albacore Tuna with lemon juice, 7 baby carrots (or) 2 cups salad with fat-free dressing.
Meal #4: Repeat meal number 2
Meal #5: (Pre-workout meal) 2 ounces of chicken (two chicken tenders), 1 small yam, 7 baby carrots (no yam on non-weight training days)
Meal #6: (Post-workout meal) 3 ounces of ground beef, 1 cup cooked brown rice or whole wheat pasta, 1/2 cup of mixed vegetables (or) 1 cup broccoli (no rice/pasta on non-weight training days).
Unlimited water, unsweetened tea, coffee.
Condiments: Salsa, Frank’s hot sauce, ketsup, Splenda, cinnamon, non-dairy creamer for coffee, lemon juice, cocktail sauce, Pam cooking spray, and 1 teaspoon of olive oil for pasta.
SATURDAYS ARE CHEAT DAYS!!!!! ANYTHING AND EVERYTHING GOES!!! EAT WHATEVER I WANT AND AS MUCH AS I WANT!!!!!! This will not only keep me motivated but the carb-loading will jump-start my metabolism.
So there you have it. I will post my weight, measurements, how I feel physically and emotionally, as well as if and when (and how) I cheat on my plan. If I don’t lose weight or inches and I still stick to this plan, I have achieved my goal because again, this is a challenge in discipline, not weight-loss. But God, I hope I lose some weight too!!
- It doesn’t have to be all-or-nothing (babiesandbriefcases.com)
- Burn Body Fat Through Weight Training (projectswole.com)
- Eat and drink this when you exercise (snspost.com)
- Running for Weight Loss (projectswole.com)
- Weight Loss Update & Summertime Tips #grabaspoon (crazyadventuresinparenting.com)
- Exercise Tips For Weight Loss (e-prescribe.biz)
- Why are you not losing weight in your weight-loss program? (goldenrule.com)
- The Intermediate Exercise Enthusiast (fitnessgroan.me)
- WOW! Weight Loss Going Out For Canadian Business! (prweb.com)
- 7 New Weight Loss Myths Revealed (prweb.com)
- Fat Melting Workouts & Diet 1.0 (Android) (downloads.zdnet.com)
- Top Ways to Ruin Your Weight Loss Diet (prweb.com)
- BodybuIlding Tips for Faster Results (fitnesstipsforlife.com)
- Muscular Development Store Releases the Optimum Performance Workout for High Intensity Training (prweb.com)
- In love and in shape, a bodybuilding ex-Chabadnik (timesofisrael.com)
- How Jodie Marsh has transformed the life of Essex mum turned bodybuilder Ellie Hopley (thesun.co.uk)
- Fitness Focus (maidenhk.wordpress.com)
- Quick Weight Loss Diet Plans – Dieting to Lose Weight Fast (ezdiets4u.wordpress.com)
- Things I do every single day to keep the weight away (threev.com.au)
- A resume of the last 5 months (juliaproteina.wordpress.com)
- 7 New Weight Loss Myths Revealed – San Francisco Chronicle (press release) (sfgate.com)
- Eating Less Calories May Not result in Weight Loss-Part 1 (valerieberkowitz.wordpress.com)
- Obesity and the brain (economist.com)
- Diet Doc Weight Loss Announces the Only hCG Weight Loss Diet PlanThat Promotes Total Body Detoxification (prweb.com)
- Treat Yourself: Eating Dessert at Breakfast Can Aid Weight Loss (healthland.time.com)
- Video: 75-Year-Old Bodybuilding Grandma Proves Age Is Nothing But A Number (blisstree.com)
- Always A Runner-Up, Never A Winner (thenlistblog.com)
- Up Against Weight-Loss Difficulties. What to Do? (mariaslastdiet.com)
- Bodybuilding competitions to pump up Civic Center (savannahnow.com)
- Do You Know This Exercises Bodybuilding Guide (workoutinspiration.typepad.com)
- Eric Cartman (support233.typepad.com)
- Day 29: CAN WEIGHT-LOSS EXERCISES BE AN UPHILL ACTIVITY (muponisi.wordpress.com)
- Top 10 Weight Loss Smoothie Recipes (pushdumpfatbutton.wordpress.com)
- Goals Fitness Challenge. Week 6 Results & Winners! #NSnation (mominmanagement.com)
- Best Cardio Workouts for Men to Lose Weight (fitnesstipsforlife.com)
- The importance of striking a weight loss vs life balance. (weightlosshacked.com)
- Victoria Beckham Combs Her Marc Jacobs Muscle Man Doll (shoppingblog.com)
Thanks to the incredible heat we had last week and the stress I have been under the past couple months, I am in a doozie of a flair-up. My symptoms are not nearly as bad as they could be and I thank God for that every day. When I read blogs of fellow Lupus…?…onians? I feel like I am acting like such a baby for complaining at all. But, all I have are my own experiences to compare things to and this week has been tough.
On a good note, this entry isn’t going to be full of complaints. Complaints like how my back hurts so bad that it feels like there are knives going in my shoulder blades. Or complaints like I think I pulled an eye muscle from trying to look around because it seems my neck has turned to stone. Or complaints about how more hair is in the tub when I wash my hair or how I have 3…no 5 new lesions on my neck, chest, and face that make me look like I am battling puberty all over again. Complaints like how I can’t really hit the brakes in my truck because my feet are in too much pain or how I can’t carry anything because while my neck was turning to stone, my arms and legs were turning into spaghetti. I also won’t complain about how my hip has been having this amazingly painful electric shock thing going on and I feel like I am being intermittently tasered. Or how my GI track feels like it is on a loopy roller coaster and I am seriously considering seeing if they make Pull-Ups in my size. I will only buy them if they have Looney Toons characters on them though. Because without them, they are just diapers for big people.
Nope! You won’t have to read about any of that!! You are welcome.
Instead, I am going to tell you about how I managed to become mobile yesterday despite the pain.
I remembered the day my doctor quoted Newton’s First Law of Motion to me.
My doctor told me that people with chronic pain get themselves in a vicious cycle of which I need to be very mindful.
Onset of pain leads to decreased movement which leads to increase in stiffening of the joints and even more decrease in movement which leads to even more pain and so on and so forth until we turn into a big pile of hurting concrete. Okay, the concrete was my imagination…he didn’t say that.
So yesterday, despite the pain I was in, despite the lack of strength in my body, despite the fact that my joints seemed fused together, I picked up some dumbbells. I did a few bench presses with a light weight. I did some stiff-legged dead lifts even though it felt like my elbows were going to pop. I did 50 squats without holding any weights and I did 12 minutes on the elliptical. The workout was NOTHING compared to what I can do on a good day and it seemed like a waste of time while I was doing it. When I was done, I was 100% exhausted.
My neck moved!!!!! For the rest of the day, I was able to turn my head from side to side without pain. Some discomfort but no pain! It was totally worth it!
I decided yesterday that I need to do this every day. I need to do SOMETHING every day to stay moving. Even if it is just 5 minutes on the elliptical and nothing more. No matter how tired I feel or how much I hurt, I need to keep moving.
And I need to accept that the goal of my workouts is no longer to loose weight and get ripped. My goal is to stay mobile and not turn to stone. That makes me sad but it is a reality and one I am willing to accept.
- May is Lupus Awareness Month! (redefininggood.wordpress.com)
- Lupus Shoes (thenlistblog.com)
- upper left back lupus (duanesnodgrass1.typepad.com)
- Lupus Awareness Month (lohnniecakes.wordpress.com)
- Depression and lupus (butterflywarrior.typepad.com)
- Lupus and autoimmunity in 2 minutes (lupuschronicles.com)
- Lupus: My Blessing In Disguise (thenlistblog.com)
- Lupus Symptoms In Women & Coping Tips (e-prescribe.biz)
- Easy Ways To Keep Your Lupus Symptoms Under Control (e-prescribe.biz)
- Excuse me Lupus is real (butterflywarrior.typepad.com)
- Nutritional Diet For Lupus (e-prescribe.biz)
- My Self Esteem (butterflywarrior.typepad.com)
- Top 5 Reasons I Write About Lupus (Day 4 of #HAWMC) (butterflylessons.com)
- Lupus and a letter to my younger self (lupusadventurebetweenthelines.wordpress.com)
- Lupus Shoes (lupuschronicles.com)
- Reasons I Have Cried This Weekend And Will Cry Again Today; A Top 5 List (thenlistblog.com)
NO, NOT THOSE HAIRS! Get your mind out of the gutter!!
I have ALWAYS had a full head of hair. My mother had a natural afro.
One day (while my hair was short, mind you) I got brave and posted to Facebook what my hair looks like when I put a brush to it.
This is why I LOVED Gilda Radner!!! We had so much in common.
About a year after I was diagnosed with Lupus, my sister was diagnosed with Esophageal Cancer. Understandably, she was concerned about losing her hair.
I felt so useless during the time she was in treatment for cancer.
I couldn’t turn back the clock.
I couldn’t take the cancer out of her body.
I couldn’t endure the treatments for her.
I COULD pray for her and I PRAYED MY GUTS OUT.
(Thank you, Heavenly Father, for hearing and answering my prayers!!!)
And I could help her feel less alone.
When she lost her hair, I had her shave my head too.
I was surprised at how much I LOVED not having hair to deal with every day. It was incredibly liberating!!
Because of my Lupus, I already had plenty of bald spots and my scalp was polka-dotted. If it wasn’t for this issue, I would have stayed bald longer and I would have gone in public without my caps and scarves on.
I think Sinead O’Connor had something going there!
And now that I have THIS song in my head, you can too. You are welcome.
This post is for The 30 Days of Writing Challenge hosted by We Work For Cheese. Today’s prompt is “The Short Hairs.”
- Hair With a Plan (hartlove.wordpress.com)
- Beauty Hacker: A Genius Tip for Pinning Short Hair Up (theblush.com)
- Becoming an Esophageal Cancer Survivor (everydayhealth.com)
- Types of Esophageal Cancer (everydayhealth.com)
- Detecting Esophageal Cancer (everydayhealth.com)
I have been doing some thinking and I have come to the conclusion that none of my doctors know what the hell they are talking about. Luckily, I do know a thing or three about medicine. I have decided that I do NOT have Lupus (yayyy!!!). I am a vampire. I always suspected it because the sun is my kryptonite and I used to joke that my next coffee table will be a coffin. But now, I am sure of it. How you ask?
Well, I did some research on the Random Facts website (http://facts.randomhistory.com/2009/05/02_vampires.html). Here are the top 14 reasons that I am a vampire.
#14) A group a vampires has variously been called a clutch, brood, coven, pack, or a clan
I often refer to myself as the “leader of my pack” and my dog totally sees me as such.
#13) Probably the most famous vampire of all time, Count Dracula, quoted Deuteronomy 12:23: “The blood is the life.
I too, have quoted Deuteronomy…just not 12:23
#12) The Muppet vampire, Count von Count from Sesame Street, is based on actual vampire myth. One way to supposedly deter a vampire is to throw seeds (usually mustard) outside a door or place fishing net outside a window. Vampires are compelled to count the seeds or the holes in the net, delaying them until the sun comes up.
The Count was my favorite muppet character!!! I loved him way more than I loved Grover and I want to bash Elmo’s face in.
#11) Documented medical disorders that people accused of being a vampire may have suffered from include haematodipsia, which is a sexual thirst for blood, and hemeralopia or day blindness. Anemia (“bloodlessness”) was often mistaken for a symptom of a vampire attack
I have not developed a sexual thirst for blood (yet. I am a relatively young vampire…only 40) but I am anemic and my doctor always tells me that I need more red blood (cells).
#10) One of the most famous “true vampires” was Countess Elizabeth Bathory (1560-1614) who was accused of biting the flesh of girls while torturing them and bathing in their blood to retain her youthful beauty. She was by all accounts a very attractive woman.
I too try to retain my youthful beauty and I AM by all accounts a very attractive woman. Well, at least by my accounts and my boy dog who has a major Oedipus Complex.
#9) A vampire supposedly has control over the animal world and can turn into a bat, rat, owl, moth, fox, or wolf.
I have within my house or my yard (and I shit you not) 3 dogs, 2 tree frogs, 2 fish in an aquarium, 4 Koi in my pond, a baby bunny, a fox, a woodchuck, skunks, a few chipmunks, squirrels, ducks, deer, birds galore, the occasional wild turkey, and a mangy coyote. I have also had pet mice, hamsters, geckos, a parakeet, a cockateil, and a guinea pig.
#8) Joseph Sheridan Le Fany’s gothic 1872 novella about a female vampire, “Carmilla,” is considered the prototype for female and lesbian vampires and greatly influenced Bram Stoker’s own Dracula. In the story, Carmilla is eventually discovered as a vampire and, true to folklore remedies, she is staked in her blood-filled coffin, beheaded, and cremated.
My middle name is Carmela. Close enough!
#7) After the advent of Christianity, methods of repelling vampires began to include holy water, crucifixes, and Eucharist wafers. These methods were usually not fatal to the vampire, and their effectiveness depended on the belief of the user.
Although I was baptized Catholic, I never received Communion. Additionally, I am not Catholic anymore (independent Christian) and I do not believe the Crucifix is a proper symbol of Christianity.
#6) That sunlight can kill vampires seems to be a modern invention, perhaps started by the U.S. government to scare superstitious guerrillas in the Philippines in the 1950s. While sunlight can be used by vampires to kill other vampires, as in Ann Rice’s popular novel Interview with a Vampire, other vampires such as Lord Ruthven and Varney were able to walk in daylight.
I am able to walk in daylight but too much sun will kill me.
#5) The legend that vampires must sleep in coffins probably arose from reports of gravediggers and morticians who described corpses suddenly sitting up in their graves or coffins. This eerie phenomenon could be caused by the decomposing process.
I sit up suddenly while I am sleeping. Especially if I have to pee or I hear a noise.
#4) Hollywood vampires are typically pale, aristocratic, very old, need their native soil, are supernaturally beautiful, and usually need to be bitten to become a vampire.
I am freakishly pale for an Italian and I don’t tan; I burn. I feel very old, I have lived in the same town my entire life and I am even supernaturally beautiful. Well, I think I am kinda good looking and although my beauty may not be SUPERnatural, it is UNnatural. I had a tummy tuck.
#3) The most popular vampire in children’s fiction in recent years had been Bunnicula, the cute little rabbit that lives a happy existence as a vegetarian vampire.
PEETA???? For those of you who do not know, Peeta is the baby bunny I rescued, raised for 12 days, and I believe is the one living in my front yard now.
#2) A rare disease called porphyria (also called the “vampire” or “Dracula” disease) causes vampire-like symptoms, such as an extreme sensitivity to sunlight and sometimes hairiness. In extreme cases, teeth might be stained reddish brown, and eventually the patient may go mad.
I have extreme sensitivity to sunlight, the hair ON MY HEAD is very thick (even with the occasional bald spots), my teeth are stained a bit…always thought that was coffee but now I know better…and I am ALWAYS going mad. Hence, the Xanax.
And the #1 reason I am a vampire…
I had my fire department physical last night. The woman told me, “Your eyesight sucks but your hearing is incredible. I bet nothing gets past you! I can imagine that even the slightest sounds drive you nuts (YUPPP!!!). YOU HAVE THE EYES AND EARS OF A BAT!”
And now that I want to watch this movie again, you can too!
- Famous Fangs: Tales of Our Favorite Vampires (livescience.com)
- ‘Vampire’ corpses found in Bulgaria (thesun.co.uk)
- VAMPIRE SKELETONS: Shocking Discovery Made in Bulgaria (PHOTO) (blippitt.com)
- Anno Dracula ~ The Best Vampire Novel In Three Decades? (lilywight.com)
- V is for Vampires (nagzilla.wordpress.com)
- Bloodsucker Collection: Twilight, Dracula, True Blood, and The Vampire Diaries (digitalproductsonline.typepad.com)
- Opinion: Death, Sex and Vampires (nytimes.com)
- Will Hill’s top 10 vampires (guardian.co.uk)
- Why are so many vampire stories so weak? [Horror] (io9.com)
- ‘Vampire’ corpses found in Bulgaria (thesun.co.uk)
I’m feeling physically and emotionally beat up today. This song usually reminds me of why I shouldn’t just stay under a blanket in my bed all week and cry myself to a Xanax-induced sleep.
I am sure I am not alone today. I hope this song helps you as well. Keep your head above water and swim!
I recently joined a forum for people living with Lupus. I didn’t want to do it at first because I imagine these forums to be similar to certain “support groups.”
I support support groups. I think they can be incredibly helpful. I even recommend them. Unfortunately, I know that many groups are not run properly and they turn into a group of people who congregate to agonize. Without a good moderator, the group turns into a “woe is me” group and honestly, I have neither the energy nor the patience for Woe Is Me People.
Don’t get me wrong. I work to understand people’s struggles so that I can be a better person for them and my empathy cup runneth over. If you know me personally, you would certainly know this. You would also know that I do not have the patience for people who wallow in self-pity and are constantly looking to me to say, “Ohhhhh….you poor soul.” As my necklace says,
Some people don’t want understanding and empathy if it isn’t in the form of pity. Some people don’t want to hear that they make choices about how they are going to live their lives every single day. These people are stuck. They are stuck in the belief that it is easier to blame others for their problems, to seek pity, and try to get others to fix their problems than it is to look inward and believe that they DO have control over some things. They CHOOSE to live a life full of self pity instead of a life that is just plain full.
But Nicki, you insensitive bitch, I didn’t CHOOSE to get Lupus!
No shit, Sherlock. I didn’t choose to get Lupus either. Nor could I have done anything to prevent it. It is no more your fault that you have Lupus than it is mine that I have it.
The question is, what the hell are you going to do about it? Are you going to sit there and feel sorry for yourself and relieve yourself of all of life’s responsibilities or are you going to live your life to the fullest extent possible?
I want to live my life to the fullest potential but how can I possibly do that?
The good news is that ALTHOUGH IT CERTAINLY IS NOT EASY, IT IS SIMPLE.
SURROUND YOURSELF WITH PEOPLE WHO UNDERSTAND YOU AND THE DISEASE.
This may take some work at first. Again, it won’t be easy. You will find that nobody will fully understand unless they have Lupus which is why a GOOD Lupus support group and/or forum is encouraged. I have joined the We Have Lupus Forum and I believe it is a good forum. I have not read all of the entries but for the most part, the entries I read are not dripping in self-pity. The members are truly there to seek and/or provide information, support, and understanding.
If you have Lupus, you MUST learn about the disease yourself BUT DON’T OBSESS over it or you will just go insane and take everyone with you.
Go to The Lupus Foundation of America website and read! A bit of caution! You will find out how Lupus affects each and every system of your body. Use this information as a tool AS SYMPTOMS ARISE!!! DO NOT read the information then LOOK for the symptoms in yourself and panic. If you read something that sounds interesting or scary, TALK TO YOUR DOCTOR ABOUT IT! Which leads to my next point in surrounding yourself with people who understand…
Get a GOOD Rheumatologist!!! If your doctor seems to not care about your pain or other symptoms, if s/he doesn’t sound optimistic that your symptoms can be managed, if s/he doesn’t believe that your pain is real, if s/he is impossible to get an appointment with, FIND ANOTHER DOCTOR. It is YOUR responsibility to secure a good doctor!! If your doctor is shit, don’t just sit there and piss and moan about how s/he sucks. Do something about it. Switch doctors. I know good rheumatologists are hard to come by but if you do your homework, you CAN find a good one.
Educate friends and family about Lupus. Be cautious and vigilant in the way you do this. Your goal is to provide information, not to seek pity or to lecture. Keep that goal in mind. Many people are afraid to ask what Lupus is and what it does because 1) They don’t want to appear stupid, and 2) They feel uncomfortable asking you to talk about your illness. I have found that taking advantage of naturally occurring opportunities helps. For example, when my friends want to go out drinking, I say, “I can but don’t let me have more than 2 drinks. I am not supposed to drink because I am on Chemo for my Lupus.” This usually leads to them asking questions about the disease. This opens the door and invites others to come in.
Lastly, and quite possibly most importantly, PUT OUT THE TRASH! There will be people in your life (more than you care to imagine) who will never understand. These people WILL bring you down. They expect things of you that are beyond your limitations, they get pissed at you when you have to say “no” to an outing, event, or hosting a party, and rather than lending a sensitive ear when you need one, they say things like, “You think you have it rough? Well I…”
GET THOSE PEOPLE OUT OF YOUR LIFE. THEY ARE TOXIC!!!
Again, YOU are responsible for keeping yourself well. You must surround yourself with people who make you feel emotionally healthy for the most part. Sure, they are entitled to their bad days and reciprocity is crucial in all relationships but if they bring you down more than they lift you up, it is time to let go or at the very least, allow for some distance. It may hurt at first but in the long run, you will thank yourself. You will feel a weight lifted from your shoulders and your spirit.
Remember that stress leads to flares! By removing the stress inducers from your life, you will be physically healthier.
I AM SINCERE WHEN I SAY:
I know that learning of this diagnosis is heartbreaking. If you are newly diagnosed, know that you WILL mourn the loss of a life without chronic illness. This is natural and to be expected. This post does not in any way speak against that!! What I am trying to drive home is this:
Recognize that you have feelings about your illness, put a name to those feelings, allow yourself to feel them, and HOLD YOURSELF ACCOUNTABLE for those feelings and your life. After all, they are YOUR feelings and it is YOUR life.
For some people, it is difficult to name the feelings. This site has the most comprehensive listing of feeling words I have ever seen. Feel free to refer to it!!
- Prognosis and Hope: Lupus Fact #29 – Pregnancy successes with lupus (lupusadventurebetweenthelines.wordpress.com)
- The Missing Link (butterflywarrior.typepad.com)
- All In It Together (butterflywarrior.typepad.com)
- Living with Lupus: Fact #27 – Lupus is not contagious but is often invisible or misunderstood (lupusadventurebetweenthelines.wordpress.com)
- Prognosis and Hope: Fact #27 – Lupus is not contagious but is often invisible or misunderstood (lupusadventurebetweenthelines.wordpress.com)
- Strides Made in Diagnosing, Treating Lupus (news.health.com)
- Communication Gap- Part Two (jenlynn401.wordpress.com)
- Prognosis and Hope: Lupus Fact #30 – Working with lupus and ADA accomodations (lupusadventurebetweenthelines.wordpress.com)
- Define yourself (butterflywarrior.typepad.com)
- Lupus And Eating Healthily (e-prescribe.biz)
- World Lupus Day 2012: It’s Complex (queenofspainblog.com)
- Living with Lupus: Fact #25 – Cutaneous lupus may someday be more than skin deep (lupusadventurebetweenthelines.wordpress.com)
- Lupus: My Blessing In Disguise (thenlistblog.com)
- Depression and lupus (butterflywarrior.typepad.com)
- Lupus and the Central Nervous System (dominateyourdiagnosis.wordpress.com)
- Who’s at risk? (butterflywarrior.typepad.com)
- 31 Days Isn’t Enough (butterflywarrior.typepad.com)
- Lupus in Women (butterflywarrior.typepad.com)
- Don’t suffer (butterflywarrior.typepad.com)
- Isn’t Lupus Enough? (butterflywarrior.typepad.com)
- A Piece of Me (butterflywarrior.typepad.com)
- Lupus is not contagious (butterflywarrior.typepad.com)
Before I begin this post, I want to say a few things. First, this post will be long. I make no apologies. I tried to break it up into sections to make it more reader-friendly for you. You’re welcome. Second, May is Lupus Awareness Month so I will continue posting about this topic this month. And lastly (and most importantly), THIS POST SAYS EVERYTHING ABOUT THE DISEASE AND NOTHING NEGATIVE ABOUT MY DOCTORS!!!!!! I HAVE BEEN BLESSED WITH THE MOST WONDERFUL DOCTORS EVER AND I DON’T BLAME THEM FOR A SECOND FOR THE HELL I WENT THROUGH!! Lupus is a disease that is diagnosed based on RULING OUT other problems and is very difficult to rule in. There is not one test (that I am aware of) that can definitively diagnose it.
It all started about 2 years after I went back to school. This was also the year my mother died. Stress can do wonderful things.
I was working on my Associates Degree full-time during the spring and fall and part-time during the summers. This particular summer was very stressful for me. I always sucked in math and this summer was dedicated to taking (and acing) Statistics and Pre-Calc. My mom had also been sick again. By “again” I mean “still sick but now we need to get her to the hospital even though she said she would never go to the hospital again.” More on that in a later post.
Zits, Bald Spots, and Allergies
It seemed like out of the blue, I started developing these things on my chest that looked like zits but when they never cleared up, I started to worry that it was Psoriasis. My Mother-in-Law was sure it was Shingles and my Mom said Scabies (EWWWW, Mom!!! It isn’t bugs!) and when I spent any time in the sun, these zit-like things started to really burn. It hurt like hell and at first I thought I was allergic to the suntan oil I was using. Being the procrastinator that I am, I put off going to the doctor. I just figured that if I stop picking at them, they would clear up. They didn’t. They just turned into red, scaly spots that never cleared up and would sometimes scar.
One day, while I was hanging out at the firehouse, my friend said, “What happened to your head? It is all red.” I had just dyed my hair that morning so I told him that the hair dye must have stained my scalp. No biggie. He knew that wasn’t it but he also knew better than to argue with me and he dropped it. A few minutes later, we got an ambulance call. While I was tending to the patient, my driver said, “Nicki, what happened to your head?” JC, AGAIN??!! ”It’s hair dye.” He said, “No, it’s all red and you have a bald spot!” I was pissed that he had to announce this WHILE I WAS TAKING CARE OF THE FREAKIN’ PATIENT and although I started to get worried, I decided that he was exaggerating and I wasn’t going to worry while I had a patient to take care of.
I got back to the firehouse and went straight to the bathroom mirror. I had a bald spot the size of a dime and the skin was very red right on the top of my head. I freaked and checked the rest of my head. Because my hair is incredibly thick, I didn’t realize until then that I had several bald spots. Some were the size of a nickel! I started crying. My husband told me that it was nothing to worry about and I screamed at him, “Sudden, unexplained hair loss in a woman in her 30′s IS something to worry about!!” I called the dermatologist. Because I had never been there before, they told me I could be seen in a month. I cried again. The receptionist asked if it was an emergency and I replied that I seemed to have developed bald spots overnight. She told me to come in the following day. ”See Chris??? I TOLD you it was serious!!”
After I made that appointment, I noticed that the spots on my head were starting to hurt and by the time my appointment came, it felt like my head was on fire. I walked into the office crying and when the doctor asked me what brought me in that day, I blurted out through tears, “I HAVE LUPUS!!!” She asked me if I was given that diagnosis by my doctor. ”No. But I KNOW it’s Lupus. My aunt died of Lupus. My sister has Psoriasis. My mom has Scleroderma. We are the autoimmune family. Now I am losing my hair and I have this zitty-rash thing all over my chest, near my ears, and on the top of my back.” I was sobbing. Partly because of the pain but mostly because of the fear.
She assured me that she didn’t think I had Lupus. ”Let’s see what you are allergic to.” She did a Patch Test. Three days later, I had the test read and it turns out that I am allergic to a ton of crap. One of the things I am allergic to is in all of my shampoos, conditioners, and hair dye. That totally made sense. My breakouts on my chest, face, and back were due to the hair dripping. All I had to do was read the labels and avoid that ingredient and I would be all set. Thank God. She gave me a prescription for steroidal creams for my head, special shampoo, and lotion for my skin. It cost a fortune and of course, none of it came in generic form but I didn’t care. I didn’t have Lupus.
“You Have Alopecia Areata.”
After six months, the spots didn’t improve. They got worse. Although they no longer burned, I had several bald areas. Luckily, my hair is so thick that I was usually able to do creative things to cover the spots but at one point, it looked like this at the nape of my neck and extending behind both ears.
I looked like a person undergoing Chemotherapy treatments. And of course, I cried a LOT. Thinking back to the Patch Test, I remembered that I was also allergic to latex. I thought, “Nicki, you stupid ass. There is latex in the headbands!” I stopped wearing headbands but I still kept losing hair.
I started seeing the Physician’s Assistant instead of the doctor at the dermatologist’s office. I liked her better. She had much more compassion for me and I really needed to feel like I wasn’t being a drama queen. She told me that I had Alopecia Areata, an autoimmune disorder that is exacerbated by stress. The treatment is to limit stress, continue to avoid anything I am allergic to, and cortisone injections in the scalp to reduce the swelling around the hair follicles. Shots? In my head? Sure, sign me the fuck up!! I received about 90 injections that day. Again…you guessed it…I cried. This time the tears were because of the pain due to the shots and the despair I was starting to feel. How long was this going to go on? Would I have to deal with this for the rest of my life? Will I eventually no longer be able to hide the bald spots?
About a year later, I was STILL getting new bald spots despite the fact that I have been avoiding the allergens and I was STILL getting painful shots in my scalp every 6 weeks. The hair would grow back but then new spots would appear.
I also started having pain in my right big toe and both of my hips. My neck hurt all the time but more so in the morning so I kept thinking that I slept on it wrong. I went to the chiropractor and spent a fortune on pillows that promised me a good night’s rest. When the chiropractor checked out my hip, he told me that I have a swollen bursa. Great. Now I have Bursitis…like my grandmother had. Damn, aging sucks ass! He recommended ice packs and it really did help the pain a lot. I also went for regular adjustments for my neck and say whatever you want about chiropractors but I SWEAR by mine!!! It did help my neck feel so much better but I still woke up every day with a splitting headache and neck pain which usually wore off by early afternoon.
But the damned toe! It kept locking up on me. I never realized how much I need that damn thing to drive and walk until it would lock up. And the pain? Holy hell, it is just a toe! Why does it hurt so bad???
I Wasn’t Convinced
After about a year and a half since the start of all of this, I decided to talk to my primary physician about it. He asked me what has been going on.
“I have Lupus”
“Why do you think you have Lupus?”
“I have this rash all over my chest and back, I have a HOLE next to my ear, my hair is falling out, my hips hurt all the time, my neck hurts, and I have headaches and severe neck pain in the mornings. Oh yeah…AND (if that all isn’t enough), my aunt died of Lupus. My sister has Psoriasis, my mom had Scleroderma and I was told I have Alopecia. Autoimmune runs in the immediate family. AND MY TOE HURTS!!!!!”
“Your toe hurts?”
“I know…it sounds minor but it REALLY hurts!”
I told him that the dermatologist diagnosed me with allergies and Alopecia and the chiropractor diagnosed me with Bursitis. He looked at my rash, my toe, and the HOLE in my skin near my ear. He said he didn’t think I had Lupus but he ordered an ANA test.
“Now don’t be alarmed if it comes back positive. A positive ANA test doesn’t always mean you have Lupus.”
The test came back negative. He confirmed that I had Alopecia and Bursitis and added arthritis in the toe to the pot.
He told me to continue my treatments with the dermatologist and the chiropractor and to take Ibuprofen for the toe pain and to get good shoes.
Still Status Quo
Two year later (and still getting injections every 6 weeks), having no change in my symptoms, my dermatologist sent me for a complete blood work-up. She checked everything, including hormone levels, thyroid function, and even ordered another ANA.
“You are deficient in vitamin D. That doesn’t explain any of your symptoms but you need to take Vitamin D supplements.”
And so it went. Another 2 years of head shots (only not the glamorous ones), bursitis, arthritis, skin lesions, expensive shampoos, lotions, and foams with steroids. But at least I didn’t have Lupus!!!
During the summer of 2009, I started to get incredibly tired. This was the Tired-Zilla. I would walk outside all energetic and gung-ho to work in the yard and literally 5 minutes later, I was crawling inside, gasping for air. Too tired to even walk or breathe! I thought, “Shit, Nicki! You really have to get to the gym! You are a lazy douche!” I remember walking in the sun on campus one day and feeling such instant fatigue that I seriously considered laying on the sidewalk to take a nap. My body just fizzled out on me. I told myself that with a life that included crazy and long hours of studying, no exercise, shitty diet, and smoking, I have no reason to be surprised. But it wasn’t JUST tired. It was COMPLETE PHYSICAL EXHAUSTION and it came on so suddenly. Fine one minute, crawling and gasping the next.
I spent that ENTIRE summer in my bedroom. I felt happy and I enjoyed watching TV, cross-stitching, drawing, painting, and being around my family…as long as all of that could be accomplished in my bedroom. Most of it was. I have the paint stains on my carpet to prove it. But my family didn’t understand why I was hiding in my bedroom all the time. My husband decided it was time to set me straight.
“The kids and I think you are depressed.”
“I’m not depressed. I am tired.”
“That is what all depressed people say because they are too depressed to know they are depressed.”
“I am a psych major. I know depression when I see it! I am NOT depressed!! I am physically fucking exhausted! I am telling you that there is something physically wrong with me! THAT may be making me depressed…the fact that I am too exhausted to get out of bed…BUT I AM SICK, NOT DEPRESSED!!”
“Depression IS a sickness.”
“You are in denial about your depression.”
Back for more shots in the skull from the dermatologist. Only this visit was different.
“I want to do a biopsy on these two little guys.”
“Why? Do you think I have cancer?”
“No. I want to see if it is Lupus.”
“Didn’t we rule out Lupus like 4 times now??”
“We never did a biopsy. You had 2 negative ANA’s but a negative doesn’t always mean you don’t have it.”
Well what the fuck??? If a positive isn’t always positive and a negative isn’t always negative then why do we have this good-for-nothing test and why didn’t anyone tell me a negative isn’t always negative TWO YEARS AGO?!
“Okay. Should I schedule the biopsy when I pay?”
Crap. I wasn’t expecting to have my skin sliced, cauterized, and sewn today but sure, no problem!
I waited 8 days to get the results. Eight. Long. Days.
“You Have Lupus….and Sjogren’s Syndrome.”
When I went back to the dermatologist, she told me the news that I have known since the first day I walked into that office 4 years prior. I have Lupus. I will say that the Sjogren’s was a nice added surprise. Go me! She told me I definitely had Discoid Lupus and Sub-Acute Cutaneous Lupus. She didn’t think I had Systemic Lupus but I need to see a Rheumatologist.
He confirmed her diagnosis. (“I TOLD YOU I WAS SICK, CHRIS!!!!) Luckily, it wasn’t systemic…at the time. Last year, my doc told me it has progressed and is now systemic.
Finally hearing that diagnosis was bitter-sweet as you can imagine. I was THRILLED that 1) I finally had an answer and 2) that answer wasn’t “It’s all in your head.” I was so excited that my doctor told me that although there isn’t a cure, there are ways to treat the symptoms. I left the doctor’s office sort of happy. Then it started to really sink in.
I HAVE LUPUS. Oh yeah….and Sjogren’s.