My Top Ten What Not To Say…to someone who Lupus or an autoimmune disease.

Do you have Lupus or an autoimmune disease, and people say the most inappropriate comments to you about your illness?  It happens to me all the time. I am not sure if it’s just the lack of knowledge about your illness and what your going through, or maybe just innocently not knowing any better. Just in case you don’t kn0w what to say, here is what NOT to say….

2.”Whose handicapped? & Why do you have those tags?”  I don’t know if it is just me, but I would never just ask someone “Hey, why are you in a wheelchair?” or “What’s up with that cane?” Just because you can not physically see a disability does not mean that person does not have a disability. I get asked this question all the time, and even followed out to my car with a head shake of disapproval. Did you know that 73% of people with a severe disability do not use a device such as a cane, walker, wheelchair or crutches? Yes, that is correct. I think people have this false belief that if you are not using some sort of medical device or have a severe physical/ visual disability, then your not considered disabled. That couldn’t be further from the truth. You can not physically see the pain that someone is experiencing inside their body. You can not feel the fatigue, exhaustion, or weakness someone may feel just walking from the car into the store,  not counting once inside the store that person’s struggles continues. Parking up front is not a privilege, it’s pain.

3. “Why are you not getting any better?” or “Are you feeling better yet?” Autoimmune diseases such as Lupus, doesn’t get better or just go away. It is incurable. Meaning there is no cure, and it lasts a life time. Sorry, but that is the truth. The truth that took me 2 years to come to grips with myself. Yes, medications can help manage the disease, but not cure it. We all hope to go into remission, but for most of us that is not a reality. We struggle everyday and it never stops. Why am I not getting better? I have no idea why, but when you find out, please let me know, because I’m wondering the same thing. You don’t have to point it out as though I’m a disappointment.  Instead of saying “Are you feeling better yet?”  Just say “How are you doing today?” ” Is there anything I can do to make things better”. That would be nice to hear for a change.

4. “You need to force yourself outside, get some exercise” Force, I have a problems with force. Actually with Lupus and autoimmune diseases you want to do the complete opposite. You do not want to force your body to do anything. This can result in a hospital stay or a major flare up. I know with Lupus I’m exhausted everyday and require more rest than an average person. With my Myasthenia Gravis, being worn out or over doing it, means exacerbation, which leads to breathing problems, droopy eyelids, blurred vision, unable to walk due to muscle weakness. So no thank you, I will not force myself into a flare or worse, into the ER today.

5. ” You need to be more positive” I really dislike this statement.  I am probably the most positive person out there when it comes to my illness, or what my family is suffering through. Being positive is not going to fix anything. I am very honest and blunt about it. I am not trying to be negative, I am just being realistic. I’m always thinking positive thoughts. I try to look at the brighter things in life, but being positive 24/7 about what you are going through everyday can be exhausting and draining. Sometimes you come to the point in your life where this is it, and there is nothing wrong with being realistic about what you are going through. You only can fake being okay for so long. It’s okay to be honest with yourself and think “This sucks”. We are only human and for someone to suggest that you should be more positive or say “it could be worse” is condescending and demeaning. It makes you feel like your not trying hard enough or that you are being ungrateful, which makes you feel guilty for being sick.

6. “Your lucky that you don’t have to work” or “I wish I can stay home all day”. Do you think if I were healthy I would be staying home all day? No, I would not. I actually started having major panic attacks and suffer from anxiety especially when I first resigned from my job, which I loved. I worked ever since I was 16 years old and not having to work for the first time in my life was hard to adjust to. I hate laying in my bed sick, while my husband works 16 hour days without days off weeks at a time, just to pay our bills, which are mostly medical bills. My kids sometimes have to miss out on school activities, or functions, and I can’t always commit so volunteering for anything  goes out the window. Sometimes housework piles up, or its frozen meals for dinner because I’m too sick to get up and cook. My daughters sometimes have to pick up my slack and  I can’t help but to feel guilty because I can not always contribute, That is very unlucky.

7. ” Have you tried this..or have you taken that…” I am open to try anything at this point, but I am not going to try some gimmicky potion thinking it will cure me or replace the regiment that I am currently on. I already take herbal supplements, I eat healthy and I do everything I possible can. I have one body, and I don’t want to loose it. So you bet I’ve tried this or that.  I’m a firm believer of medications and herbal therapy TOGETHER…as long as it does not interfere with each other, and your Dr. is okay with it. Never try or replace your current therapy without consulting your Dr. first. Let’s just leave the medical advice to the experts please.

8. “You don’t look sick” I know, most of us don’t.  If only we can turn ourselves inside out, you may actually see something, right? You can not see our blood work , or our insides being attacked by our own immune system and how much damage it caused. You can not see the stress Lupus caused to my heart or the damage it causes to my kidneys.You may catch me on my good day, where I applied ten pounds of makeup to cover up the lack of sleep, the exhaustion or the amount of pain that I am in. I usually wear long sleeves to cover up my iv scars or bruising from my infusions. I comb my hair a certain way or wear a hat to cover my hair loss or bald spots. There are some days that I may look sick, but there are some days I don’t look the part, but it does not mean that I am well. You might actually catch me limping or maybe with my droopy eye and facial paralysis, but on those days, I tend not to go out in public; if I don’t have to.

9. ” I know someone with Lupus, and they died” What if I told you this while your battling a life threating disease? Not very encouraging is it? Yes, I have actually been told this by quite a few people or that they know someone with Lupus and well… they are not doing so great. This is not what we want to hear. I know the fate Lupus has for me, or what can or could happen, but I really do not want to be reminded of it. Every time I learn that one of my support group members lost their fight to Lupus, it really hits home, for all of us. It’s a scary reality that we do not want to be reminded of. We need more encouraging words, and support.

10. ” Are you loosing/gaining weight?” Yes, probably and why would you point that out? In my case I have been loosing a lot of weight lately, and no it’s not on purpose. I am very self conscious of how I look especially coming from someone who use to run 2 miles a day and was very actively fit. Some of us try so hard to stay fit, but our disease does not always allow us to have regular fitness routine. ( and those who are able I am jealous) Exercise can be very difficult, and the side effects of the medications can cause us to either loose or gain weight. At this point I just try to do what I can, when I can. I’ve come to grips that I might not have my old body back, but its okay what is important is being healthy.



My Daughter’s Story

1478981868988Nothing can prepare any parent to watch their child suffer, especially when you know what they are going through and there is absolutely nothing you can do about it. Not long after my Lupus diagnosis, my oldest daughter Hailey, became very ill.¬†Hailey was always very active and¬†healthy. Never in a million years did it ever crossed my mind that she could have an autoimmune disease until her Sophomore year of high school.¬†During softball season she started to complain of fatigue,¬†joint pain, swelling, and¬†she just didn’t feel right.¬†Hailey became so fatigued that she couldn’t even wake up to go to school the next day after a softball game. Later she told me she had several dizzy spells at school,¬†suffered from¬†hand tremors, muscle weakness in her legs, and¬†skipped her¬†menstrual cycle a few months. Her appetite was bigger than a teenage boy, and yet she was so petite and thin. Hailey also started having panic attacks, her mood was off and she couldn’t sleep at night. I knew something was terrible¬†wrong.¬†My husband and I¬†immediately took her to see her pediatrician to get a full check up. We thought “What is if it’s Lupus?” At the Dr.’s appointment, right away¬†Hailey had high blood pressure, weight loss, and abnormal fast heart rate. I also noticed that day she had this red rash going across the bridge of her nose like a malar rash. The pediatrician ran blood work and was a little concerned about her thyroid. The next morning the Dr. called right away and said her thyroid levels were through the roof and referred us to the Endocrinologist, coincidentally her sister was already a patient¬†with that¬†Endocrinologist for a different reason,¬†so we¬†were already familiar with the clinic.

¬†The Endocrinologist confirmed that¬†Hailey¬†had an autoimmune disease called “Graves Disease“. It is where your autoimmune system attacks your thyroid and causes you to have a high heart rate, high thyroid levels ¬† ¬†(Hyperthyroidism)¬†and slew of other autoimmune issues. Right away she was put on beta blockers for her heart and thyroid medications. We were in shock and¬†disbelief. Then not even a week later, Hailey and I were both playing tag team back and fourth to the ER. I was having my Lupus flare, and Hailey was having¬†thyroid level issues related to her Graves. My¬†poor husband was running back and fourth with both of us at the hospital at the¬†same time. To make matters worse our youngest daughter was recovering from surgery that same week.¬†It was a nightmare. Not even a¬†week after¬†Hailey was diagnosed with Graves, her Lupus panels came back and her ANA came back positive, as if being diagnosed with Graves¬†Disease wasn’t devastating enough. Her whole world came crashing¬†down, and it broke my heart. Within a week her liver started shutting down and her body was rejecting the thyroid medication that was used to treat her Graves Disease.¬†She then¬†became allergic to all the thyroid medication.¬†At that point we only¬†had¬†two options a¬†Thyroidectomy to remove her entire thyroid or¬†Radioactive Iodine¬†Therapy, to kill off the thyroid while it is inside of her.¬†Hailey had just tested positive¬†for a shrimp allergy a few months prior, before all of this happened, so we were concern with going the iodine route¬†because¬†people who are allergic to shell fish tend to be¬†allergic to iodine, and usually not recommended. The Endo reassured us that the Radioactive Iodine route¬†should be safe. The Dr. felt the Thyroidectomy was a little more risky¬†and preferred the¬†Radioactive¬†Iodine¬†Therapy because it was the safer option.
After a family meeting, and much research, we all decided to go¬†with the¬†Thyroidectomy. We felt that we did not want to risk the Radioactive¬†Iodine Therapy. ¬†I had this gut feeling telling me to go the Thyroidectomy route and so we did.¬†The following week we scheduled her surgery with her ENT Surgeon who supported our decision¬†and¬†Hailey went in for a full Thyroidectomy. While in surgery the surgeon discovered that one of her parathyroid glands (we have four that are located on your thyroid which is essential for life and controlling your body’s calcium and energy¬†levels.) was dying off and had turn black due to lack of blood flow.¬†He did a transplant of that imag1228parathyroid gland by chopping it up¬†into several pieces and re-implanted it into her neck muscle and main artery, which is called a parathyroid auto transplant.
¬†After surgery, while in the hospital,¬†Hailey was not recovering as well as we expected.¬† She¬†became so weak and¬†seemed to be getting worse by the hour. She could not maintain her own calcium levels with out a direct IV line¬†into her vein of calcium.¬†Her hands¬†became crippled, curling up and cramping. She could not feel her lips, or mouth, her limbs were going numb and in paralysis. She could not hold any food down, started vomiting and then her heart had an abnormal EKG reading. The pathology reports finally came back and it was confirmed that¬†Hailey actually lost her other two parathyroid glands in her thyroid when it was removed. She was born with two of those para¬†glands inside her thyroid which is very rare. Hailey now only had one functioning parathyroid gland that was still in shock from the surgery, while her other parathyroid transplant was still in sleep mode.¬†So her only two para thyroid glands were not working at all at that moment, causing more complications. ¬†1478981885608Then if that wasn’t¬†traumatic enough, another confirmation…the pathologist had also¬†found papilloma carcinoma¬† (thyroid cancer) in her thyroid, but contained. The¬†Hematologist/Oncologist did a full exam, by doing a biopsy of¬†her lymph¬†nodes and scanned her lungs to rule out the spreading of the cancer, which came back negative.¬†No radiation treatment was needed thankfully. The Dr.’s said we were very lucky we decided to go the Thyroidectomy route because they may have not discovered¬†the cancer¬†until later which the prognosis may had been different. I will never forget¬†what the Dr. said to me… “Good call mom”. which confirmed that yes, I did¬†make the right decision, and I’m glad I went with my gut feeling.¬†It took¬†Hailey a full week in the children’s hospital to recover. She encountered a few bumps and had complications here and there, but she recovered. Now we both joke about how we have containers full of medications at our night stands like geriatric patients. Hailey will have to be on medications for the rest of her life.

We can not believe all of this happened within a two month span, although the Dr.’s said she must have been suffering¬†for quite sometime. We were not able¬† to connect¬†the dots until later when her symptoms became more¬†obvious.¬†I honest1478981895238ly don’t know how she¬†manage to make¬†to keep up with her academics, play a sport, and be involved with clubs and Orchestra while suffering at the same time. It just amazes me how strong, positive, and determined she is. Now we are waiting to follow up with her Rheumatologist to deal with the positive ANA/¬†Lupus test, and now¬†Hailey will add Oncologist, to her long list of specialists. Hailey is still facing a daily battle with nerve damage and other issues that developed after her diagnosis and surgery. We still have a long road ahead, but she is so tough and brave. After all that happened, I truly believe we had angels by our side guiding us the entire way. For parents, always trust your gut. You know your child more than anyone.


Benlysta is the first FDA approve drug in over 50 years to help treat Lupus. Benlysta is a 4411268_lbiologic treatment therapy and it is required to be given intravenously (IV). There are currently studies and testing being done to approve a sub-q injection form of Benlysta which will cut down on the cost and also time that it takes to receive the infusion therapy.

My experience with Benlysta has been a little interesting and complex.  As my Lupus became worse which was soon after I was diagnoised, I was advised to start the Benlysta treatment. I was a little worried since I was already on Methotrexate, which is also a biologic, but later I learned this was not uncommon for Lupus patients to be on multiple biologics at the same time for the more severe Lupus. Severe Lupus Nephritis, or severe CNS Lupus are condition in which Benlysta is not recommended.

My first infusion I was terrible nervous. You are given the first 3 loading doses 2 weeks apart then after that, once a month.¬†I was given premeds of Benadryl and Prednisolone via IV then my Benlysta. I felt the effects of the Benadryl right away and I was pretty much knocked out and did not feel anything else until I got home. The infusion took me a total of 2 hrs.¬†Later that night when I was at home, the prednisolone made my heart race, I was jittery, like I wanted to crawl out of my skin¬†but groggy. My body was aching, I had a slight headache which I was surprised. One of the side effects are migraines, and since I’m prone to migraines I thought for sure I was going to get a severe migraine. Then I was so hungry, ¬†I could¬†have eaten¬†a cow. I was feeling pretty crappy and worn out for about 3 days after.

Then next infusion the Dr. decided not to give me the prednisolone anymore because how it made me my heart race. The only premed I received was the Benadryl. I did my treatments like that for a year. I eventually got use to it, and the only side effect that I would consistently experience, were the aches and bone pain for the next few days and feeling worn out. Of course I was groggy the day of my infusion because of the Benadryl so finding a ride to and from my infusion was a huge hassle. I could not drive back and my husband worked out of the town most of the time. Organizing a ride was very difficult for me since I really did not have any relatives or friends who lived close to me. The infusion center was also about 35 minutes away from where I lived.

After I started having cardiac issues, my Cardiologist advised my¬†Rheumatologist that¬†I was not to take anymore Benadryl or Prednisolone because it would be dangerous to my heart. I¬†have SVT, and I had issues with Inappropriate Tachycardia.¬†So then I started doing my infusions with just Clairton. It worked but I really felt the effects of the Benlysta. I had to also receive Phenergan ( anti nausea meds via IV) and Tylenol because I was extremely nauseated, then I had a splitting headache. The first time was rough. I felt as though I had the flu x 1000. But once again my body eventually got use to it, and the best part…now I don’t have to find a ride or have my husband try to adjust his schedule or miss work. I am still down for about 2 days. Everyone is different. I have seen some patients walk in and out like nothing and go straight back to work. There is no way on Earth I could ever¬†do that,¬†and I’m totally jealous! ¬†Then I’ve also seen some patients look as though they are not doing so well… and perhaps having a harder time than¬†me.

My Tips:

  • Drink plenty of water, the night before and the day of.¬†Hydrations is important, it will make it easier for the infusion nurse to find a good juicy vein to stick you with. Also the side effects from the treatment will be not as harsh ( so they say).
  • Bring a snack, water, and something to pass the time: Some infusion¬†centers will provide this for you, mine do not so I always pack a snack and water, sometimes a charger for my phone or something to read…if I’m not dying.
  • Pillow and blanket. My infusion center provides both, but I usually bring my own mini pillow to prop my arm up. Also for me I have Raynauds, and when I get any type of IV my hand will turn ice cold. So¬†I bring a glove or a mitt to put on my hand. My infusion center also carries heat packs, or you can bring your own if you have that hand going cold issue.
  • Plan to spend anytime from 1-3 hours. Sometimes I had to switch arms because my veins will blow, or I had issues with my IV drip, or I’ll just have issues period¬†and the nurse will have to slow down my drip. That has happened a few times due to the IV fluid burning and pooling around my arm or other random issues that occur.
  • You may not be able to bring a visitor so ask before hand. My infusion center will not allow visitors in the infusion room due to other patients privacy. So¬†if I have a¬†ride or visitor they¬†will have to wait in the waiting room outside. So if that is the case make sure you tell your visitor to bring something to pass the time. Again not all infusion centers are the same, some allows someone to be with you depending on the facility¬†.


  • Join a support group! I am on a wonderful support group on FB called Benlysta Buddies. It is a close group, so your questions and concerns are private. I found this support group to extremely helpful!
Here is a link to Benlysta’s website. You can find more information about the drug itself and also about the co-pay assistant program. Benlysta is also a very expensive treatment therapy and your insurance may not cover this treatment. You may want to contact your insurance provider for more information on drug coverage.
click on the link : Benlysta

Being Sick is Lonely

sad-girl-sad-silhouetteBeing¬†sick is¬†very lonely and isolating. I have lost friendships and even relationships with family members because of my disease. I am partly to blame for those lost relationships, but not entirely. When you have a disease that is unpredictable, like Lupus,¬†you¬†never know what tomorrow may bring. It can fluctuate day to day, hour to hour, which makes it¬†difficult to make or keep plans.¬†Those who you make plans with usually think of you as being¬†flakey, because they¬†do not quite understand how sick you really are. In turn this tends to make me¬†become¬†isolated, not wanting to be a¬†“Debbie Downer” and¬†just keep to myself rather than having to¬†make excuses¬†why I¬†can’t go, or¬†having to explain my illness. I believe it is hard for other people who we see as “normal”¬†to understand what it is like¬†to have an illness that affects your everyday activity and every aspect of your life.¬†Not that it’s¬†their fault, but it is hard for someone to understand what it is you go through unless they go through a debilitating experience themselves or¬†share a life with someone who does. I know it was not until I was diagnosed with Lupus, that I learned fairly quickly how hard and lonely this lifestyle¬†can be.

The way I wake up in the mornings or I end up by mid day will determine what I am capable of doing for the rest of that day.  The medications, or regiment, whether it is my chemo treatment, or injections, I may be out a few days afterwards.  My life pretty much consist of driving around to Dr. appointments with different specialist, treatments, hospital visits and stays , while trying to be a mother and wife. This is all I have the time or energy for and unfortunately it consumes my entire life.

I learned that after trying to speak about my illness with others, such as family members or friends,¬†they don’t always seem to understand, and I do not take this personal.¬†I do not blame those who don’t respond the way I¬†thought they would.¬† Trying to explain your illness to someone who is unfamiliar with it is like trying to explain color to someone who has never seen color before. It is just hard for someone¬†to¬†grasp,¬†especially if¬†they never experience it themselves. I¬†would love to¬†go¬†out and meet friends for dimag1249inner,¬†have a¬†margarita,¬†or¬†spend a day at¬†the park,¬†but my¬†disease doesn’t always¬†allow me to. The pain¬†and exhaustion I ¬†experience everyday is at times¬†debilitating¬†enough for me to throw most of those plans out the window. Not being able to stand, or walk for long periods of time,¬†being out in the sun too long will also¬†put an end to a fun¬†filled day outdoors.¬†Not to mention financially when most of your income goes into copays, deductibles, medical treatments, ER visits, hospital stays¬†and expensive medications,¬†your entertainment budget becomes almost non-existent. Being sick for life is financially draining.

This is where my life becomes lonely. It’s usually a fun weekend of Netflix and laying in bed, drugged up, just to cope with the pain and the disease I’m battling,¬†Not that I want to, but I have to.¬†My body will shut down and it¬†could lead to another hospital stay or a major flare up if I over do it.¬†¬† This¬†usually¬†¬†means canceled plans, and adjusting to the day according to how my body feels. I basically learned how to cope with how I feel, and make the most of the good days, even if its for a few hours.

I may looked put together on the outside, but on the inside I am not… not¬† by a long shot. That is why they call Lupus and other autoimmune disease the “invisible illness”.¬† Most of my friends now¬†are my online support groups and social media sites¬†where others like me can vent to each other because we can relate to one another. Sometimes we laugh at ourselves and how “messed up” we are because sometimes that¬†is¬†all¬†you can do is laugh…to keep from crying,¬† laughter¬†is¬†the best medicine. We also share advice and our¬†medical experience. I find comfort at home chatting it up with people like me, and sharing my experience¬†writing this blog, hoping that maybe someone can relate, and know they are not alone. ¬†I do¬†still enjoy looking on social media at my other friends and their adventurous lives they live. It’s like looking out a window at life from a different perspective.¬†¬†It¬†reminds me of the life I¬†once lived myself. There are times¬†that this makes me feel a bit sad because I can’t do those fun things anymore, but it is okay, we are only human.¬†I think it is only normal to have those feelings, especially when your sick and lonely. I will say the one thing I have learned from this awful disease, is to take nothing for granted, and everyday is a gift, even if your laying in bed looking out the window.


The Best “Cheapest” Homemade Lotion Recipe


16 ounces of baby lotion
8 ounces of  coconut oil (solid form/not liquid)
8 ounces of vitamin E cream
Empty these items into a large bowl and mix together with a mixer. Mix well for about 2 min or until the consistency resemble whip cream. After you are done whipping together, you can place in a jar, or a tight container. You can purchase all these items at the Dollar Store or at any Walmart /grocery store for under 7.00 bucks! This lotion last a very long time, it is not too greasy and it smell great!
Have fun and enjoy!


Medical Bills and Finances

Medical Bills and Finance

Medical bills, medical bills and more medical bills!

Here are some tips to keep some money in your pocket, and how to cover some of your expenses.

Lupus is very expensive. If you have medical insurance and you are diagnosed with Lupus, be prepared to shell out a nice chunk of change. Lupus is one of those diseases that you will have for the REST OF YOUR LIFE. Financially it starts to affect you especially in my case, both of my daughters and myself are fighting autoimmune diseases at the same time. Most likely you will either meet your deductible in no time or get your premium worth of what you pay in to it. But what really starts to kill you is when your insurance company does not want to cover certain treatments, medical procedures, medications or hospital bills.

There are a few options that you can do:

  • You can contact your hospitals billing department (if you have past due¬†balances or if you plan to be admitted for a future procedure)¬†and set up a payment plan. Most hospitals will work with you. I know on some major surgeries they may require a larger down payment, but they are willing to work with you. Now I am speaking from my experience and the hospitals that I have been admitted to. Other hospital’s policies and state policies may vary.
  • Double check your medical bills and coverage. I can not begin to tell you how many times I had to call my medical insurance company to confirm coverage on certain procedures, blood work, test, ect. Sometimes the Dr’s office would either code the bill incorrectly or not¬†obtain the correct information, then I would get billed. There also had been times where I had to pay a balance due at the Dr. office, so I would pay it assuming that was the difference of what I owed, to only later receive credits onto my account. I would preferred not to be credited and have that cash back in my pocket because I could always use the money. So I started to call my insurance 1800# on the back of my medical card, anytime my balance, or coverage did not seem right. Usually they are really friendly and it only takes a few minutes for the rep to tell you “yes” or ‘No”. Sometimes they will even be gladly to speak with the Dr’s office right there on the phone. So don’t be afraid to call and double check. Its your money, its bad enough our insurance rates are so high!
  • FSA / Flex spending account : If your employer offer this program please take advantage of¬†it! Our flex spending account helped so much when we did not have the money upfront to cover medications that were expensive¬† or for those emergency trips to the ER and your copay is required right then and there. Flex spending is tax free money up to 2,500¬†a year used to pay towards medical, health care or daycare¬†depending¬†on¬†how you have¬†it set up. You are given a FSA a card to use like a debit or credit card with the 2,500 limit, and payments will be deducted from your paycheck by your employer a month or pay period to pay back towards the balance. Look at it almost like a tax free loan or payment plan¬†with the money¬†upfront. But it is to be use strictly towards medical¬†, medications, daycare or senior care.¬†here is a link to a quick video that explains what is a FSA account more in detail.




What if  your told that your life would completely change one day, not by choice and not for the better? Welcome to my journey.

I am a wife, a mother, and a survivor who is taking one day at a time. I have SLE Lupus and Myasthenia Gravis along with other autoimmune complications that comes with the joys of having Lupus. I am sharing my journey in hopes to spread awareness, but most importantly to give others encouragement in whatever battle they may be facing.

Have faith, be strong, laugh a little or even cry, but never give up!

Little Bit Lupie.