Benlysta are you my friend or foe?

so, I got approved to start the new drug to see if it will help my severe lupus..I'm nervous but hopeful..the side effects scare me but if it helps get me off prednisone and gets me to feeling "normal" again and having energy I'm all aboard! If it makes my hair grow back my body not swell and my mind work again let's do this! I can handle joint pain I have all my life. Im praying for a miracle and I'm praying for a safe journey I'm about to endure. This beast hasn't seen anything yet!! Benlysta is the first prescription treatment in over 50 years approved for adults with active, systemic lupus erythematosus (SLE or lupus) who are receiving other lupus medicines. BENLYSTA is not a steroid—it's a biologic therapy, delivered through an intravenous (IV) infusion. It works by reducing certain cells in your immune system that can make lupus active. Studies have found that adding BENLYSTA to commonly used lupus medications can reduce lupus disease activity. In fact, in clinical trials, BENLYSTA plus other lupus treatments was superior to other lupus treatments alone in reducing lupus disease activity. It is not known if BENLYSTA is safe and effective in people with severe active lupus nephritis or severe active central nervous system lupus. BENLYSTA has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of BENLYSTA is not recommended in these situations. BENLYSTA history BENLYSTA is the first FDA-approved medication in over 50 years to treat adults with active lupus. It is the first in a drug class known as BLyS-specific inhibitors. In 1996, researchers identified a naturally occurring protein in the human body called BLyS (pronounced "bliss"), short for B-lymphocyte stimulator. Clinical studies showed there was a connection between higher levels of BLyS and lupus disease activity in some people. BENLYSTA binds to BLyS and prevents it from stimulating B cells. FDA approved BENLYSTA on March 9, 2011, providing an additional option to treat lupus. What Is BENLYSTA? BENLYSTA is a prescription medication used to treat adults with active systemic lupus erythematosus (SLE or lupus) who are receiving other lupus medicines. It is not known if BENLYSTA is safe and effective in people with severe active lupus nephritis or severe active central nervous system lupus, and it has not been studied in combination with other biologics or intravenous cyclophosphamide. Use of BENLYSTA is not recommended in these situations.   Important Safety Information The most important information to know about BENLYSTA BENLYSTA can cause serious side effects. Some of these side effects may cause death. It is not known if BENLYSTA causes these serious side effects. Tell your healthcare professional right away if you have any of the symptoms listed below while receiving BENLYSTA Infections: Symptoms can include fever, chills, pain or burning with urination, urinating often, bloody diarrhea, or coughing up mucus. Heart Problems: Symptoms can include chest discomfort or pain, shortness of breath, cold sweats, nausea, dizziness, or discomfort in other areas of the upper body. Mental health problems and suicide: Symptoms can include thoughts of suicide or dying, attempt to commit suicide, trouble sleeping (insomnia), new or worse anxiety, new or worse depression, acting on dangerous impulses, other unusual changes in your behavior or mood, or thoughts of hurting yourself or others. Do not receive BENLYSTA if you are allergic to belimumab or to any of the ingredients in BENLYSTA. Before receiving BENLYSTA also discuss with your healthcare professional if you: think you have an infection or have infections that keep coming back. You should not receive BENLYSTA if you have an infection unless your healthcare professional tells you to. have or have had mental health problems such as depression or thoughts of suicide. have recently received a vaccination or if you think you may need a vaccination. If you are receiving BENLYSTA, you should not receive live vaccines. are allergic to other medicines are receiving other biologic medicines, monoclonal antibodies or IV infusions of cyclophosphamide (Cytoxan). have or have had any type of cancer. are pregnant or plan to become pregnant. It is not known if BENLYSTA will harm your unborn baby. Tell your healthcare professional if you become pregnant during your treatment with BENLYSTA. are breastfeeding or plan to breastfeed. It is not known if BENLYSTA passes into your breast milk. You and your healthcare professional should decide if you will receive BENLYSTA or breastfeed. You should not do both. Women of childbearing age should use adequate birth control measures while taking BENLYSTA and for at least four months after their final treatment with BENLYSTA. Remember to tell your healthcare professional about all the medicines you take, including prescription and non-prescription medicines, vitamins, and herbal supplements. Possible side effects of BENLYSTA: Cancer. BENLYSTA may reduce the activity of your immune system. Medicines that affect the immune system may increase your risk of certain cancers. Allergic (hypersensitivity) and infusion reactions. Serious reactions can happen on the day of or the day after receiving BENLYSTA and may cause death. Tell your healthcare professional right away if you have any of the following symptoms of a reaction: itching; swelling of the face, lips, mouth, tongue, or throat; trouble breathing; anxiousness; low blood pressure; dizziness or fainting; headache; nausea; or skin rash, redness, or swelling. Tell your healthcare professional or get emergency medical help right away if you have any of these symptoms. The most common side effects of BENLYSTA include: Nausea Diarrhea Fever Stuffy or runny nose Cough (bronchitis) Trouble sleeping Leg or arm pain Depression Headache (migraine) Sore throat Urinary tract infection Decreased white blood cell count (leukopenia) Vomiting Stomach pain Tell your healthcare professional if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of BENLYSTA. For more information, ask your healthcare professional. Other Important Information In 2 of 3 studies, fewer blacks/African Americans who received BENLYSTA responded to treatment compared to blacks/African Americans who did not receive BENLYSTA. Therefore, caution should be used when considering BENLYSTA treatment in blacks/African Americans. It is important to discuss with your healthcare professional whether BENLYSTA is right for you. A clinical trial is planned to study BENLYSTA specifically in blacks/African Americans with lupus.

The little things....

Ok lately my life has changed drastically for a 28 yr old. I am going to let you all get a little insight of what I cannot do anymore and how my days are now. They are complete opposite of my working days and doing whatever that's for sure. The point of this particular blog is make you stop and realize what you have. I wish I appreciated these little things before as much as I do now on my "good" days. I cannot stress enough how important health and life is..how precious it simply is and hold on to it..cherish it please! Here goes I will start from head to my toes... Head..my memory sucks, my attention span is horrible, I have what they call "lupus fog" which is brain fog..I go in a daze basically. I have the horrible migraines, my left eyes almost blind, my eyesight sucks where everything is a haze and I'm not even high! Basically my vision is like when you put on bifocals and driving in the rain haha ok that's really not funny but it is. I have nosebleeds all the time due to sjogrens and no moisture. My mouth ughhh... I have thrush all the time, I get mouth sores, I have dry mouth, I get sore throats all the time, my teeth are falling out all from sjogrens! Heart..I have irregular heartbeats, my heart is enlarged and not in a good lovey way! When I lay down my heart beats like the pace of a train or if I just got done working out same as when I wake up. Scary yes! When I breathe it feels like it takes all of my energy almost th feeling of when you're sick and all congested well I'm like that all the time. Breathtaking! Haha Stomach..the meds make me.....well gas-y haha! So that's quite annoying but hey can't hold it in or you will explode haha :) Arms..they are bruised left and right from all the infusions they are weak from all the needle pricking. I mean I go to the dr 3-4x a wk and get stuck every time. I'm a pin cushion! A bruised one at that! Hands..I cannot write or type anymore with out my hands shaking uncontrollably or cramping up. So if I cannot write it is also hard to cook,hold objects, polish my nails, put on make up,hard to drive from holding steering wheel my hand cramps up so I have to pull over, talking on the phone,holding anything for a while basically...either my hands cramp up,shake, or I drop it..I drop glasses of drink all the time. My hand just gives out. Woman parts..lacking sensation hey it's the name of the dirty disease game :( I'm here to educate and inform. Plus I cannot have anymore children..getting tubes tied at a young age..blah ya get it.. Legs...they swell up, the joints hurt like someone is putting screws in my knees and ankles, my thighs burns like I just did leg exercises. I fall all the time! I have to get a cane at the ripe age of 28!! Just like my hands give out my legs just give out. I just collapse like my legs say lets sit down but my minds like let's go walk over here. I call myself Fiona from Shrek when I swell up..I mean it's some pancake ankles, knees,and feet action! Walking up stairs feels like I have heavy weights wrapped around my ankles I literally have to lift up my leg with my hands and move them to the next step..so I hate my parents house haha. I wanted a suv so badly for aiden but now I hate getting into it bc it's so hard to climb in. It's all a work out! Feet..they cramp up and swell up through out the night.. Things I cannot do... I cannot go to grocery store or any store for more than 1 hr before I swell up or my legs give out and get heavy like I have casts of cement wrapped around them. I cannot take a shower without falling, crying, or needing help. Basically when I am home alone which is the usual I have my 2 1/2 yr old son help me wash my legs and feet and help hold my hand to get out the shower. Yes I said I have my son help me. I have trouble taking and putting on my clothes one part from being so swollen and another from the joint pain and muscle pain. My body is so sore. I cannot wash clothes, fold them, and put them away ( well no one really does rt haha) but I get wore out from doing that vacuuming, mopping,cleaning, giving aiden a bath or the dog a bath that's like running a mile for me. Going down the driveway to check the mail I have fallen before..taking aiden to park I have to cut it short or take breaks I can't just play with my kid. I can't go out and have a drink or party or socialize without getting fatigued or feeling dazed. I cannot take my dog on a walk with out knowing for sure I can make it back safely. I can't be around sick ppl young old cute or not stay away I'm too weak already.your little cough you say isn't contagious and is just sinuses makes me have the flu basically and every other infection possible. I can't eat a lot of foods that everyone else enjoys on a daily basis. Eating out I cannot do as much do to them adding salt or other seasoning that I cannot have. So while you eat a delicious steak with potatoes and a dessert I can't have any of that! No salt no red meats no potatoes no sugars! No processed no packaged foods no snacks no candy no caffeine no alcohol no no no no! When I do "splurge" it's when I really feel I can handle the outcome. The outcome is swelling, pain, and fatigue..so I feel like poo all for a piece of cake or for a sip of sweet tea. Where before its like eat whatever drink whatever enjoy whatever. Party whenever. I cannot sleep at night. I wake up at 4 am every morning. I wake up 3x through the night to just pee..and when I pee it's like off of Austin powers its forever ! My kidneys are so messed up! I've gained so much weight from meds which makes me depressed a little. The swelling and weight gain makes me weaker I have noticed. The sad part is...I eat healthy I mean I juice,eat veggies, chicken,and turkey only, no caffeine, no salt, no sugars, etc and I try and walk the 30min a day they say I need why do I feel like I just ran a from the cops while eating 5 burgers?! So all in all my body is weak..it's a swollen, joint aching, muscle burning, cramping, collapsible,achey,tender, hurting infected body! Enjoy yours and treat yours with care! Yea you may be healthy and able to party all night and day and drink your sorrows away or do drugs and feel fine and drink cokes and caffeinated drinks and eat burgers like no ones business but stop and realize you are hurting your precious body regardless of you don't have a disease or illness. I never imagined I would be falling all over the place or not able to do certain things or go certain places and have certain foods especially not in my late 20's but look at me! Oh and I "look" healthy and happy that's the other bad part people see me and say wow you look great and your are all happy go lucky. Honestly..it's a front to get me through the day or that moment. I really just want to go home and sleep and ignore the world. My everyday consists of waking up at 2 am,4am to pee then at 6 am then i take my meds, then I'm up play on computer check all my emails and what not. Go over my calendar some don't forget anything like I always do. Then I clean the house make a smoothie take a cold shower to make swelling go down. Make breakfast for aiden lay down and wait until 830 to wake him up. But if it's infusion day I get dressed and go to drs to get treatment until 10:30am. Then aiden eats, we do a little schooling, and then play around. Then I get really exhausted around 11am everyday no matter what. I usually doze off in a daze while he plays around with Chris or whatever. Then Chris leaves for work I wake up and back to mommy duty. I feed him lunch and try to get him down for nap by 1230-130 so I can try and snap back out of fog..then when he sleeps I try and clean clothes or rest as much as possible. Then when he wakes up we go somewhere and I usually swell up and have to come back home to rest again. Or I meet with my family do they can have them while I relax. Then dinner bath reading a movie bed more meds and more relaxing. My days are BORING! I miss work so badly! I love cooking I love entertaining I love making others happy I love being active...so this life sucks bc it's not me at all! I'm used to having two jobs and staying busy me sleeping all the time bc I have to force myself to calm my butt down or else I will end up back in the hospital is annoying but it's what I have to do to take care of myself. Thanks for reading and once again enjoy your freedom health and life ;)

Am I 50 or something?!

Shingles..yes it is confirmed.. I can get a vaccination but it's usually for 50 and up. I have them going along my nerve on my neck on the rt side on my chest collar bone and starting on my shoulder and back..what the what! What's next man? It burns so badly and hard to sleep and turn my head clothes suck laying on my neck also so it being winter makes it unbearable. From all the meds and infusions I am prone to get more infections so if I keep getting shingles then I may have to get the vaccination they say just to relieve me of some type of pain..bc if I don't have one infection I have another. All to control this nasty beast...Lupus! They say with shingles kids can get chicken pox so I sorta want aiden to get it to get it over with young..but it has been 3 days and he has been all over me and no spotted aiden man yet ;( but I got my meds and hopefully I will get better in one week. Let's all pray I have one good week ahead of me my anniversary is Monday! I can't help but laugh at the fact that I got shingles and all the possible infections that come along with Lupus back to back..but I have been fighting them off one by one like the warrior that I am and they all last 2wk tops! So for a poor immune system I'm a fighter that's for sure. Plus I havent ( knock on wood and pray to the Lord above) gotten that nasty bug that has been going around that hmm mmhh my husband has and I have had to take care of him..makes me think my body is trying! I like that ;) HOPE and FAITH! I may feel like a 50 yr old being that I may have to invest in a pretty cane soon bc I can't keep my balance or that I have RA and my hands shake I def have days that I feel like my 28 yr old self and run around with aiden and my nephews. They love those days that's for sure. I cherish those days. I will get those days back....trust me! Xo

babies are coming& im getting tied up

The wk I am getting my consultation on getting my tubes tied is the rt around the time 3ppl I know will be giving birth to some beautiful happy healthy babies! It's a bittersweet feeling for sure. I have already cried and prayed over this situation and know things happen for reason. If we would have gotten pregnant in June like I wanted I probably would have either lost the baby or I would be extremely at high risk pregnancy and with a lot of complications where the baby would be preemie or not make it. I think back on how bad I got this past year and ending up in the er twice with high blood pressure and heart disease. I am on so much medicine and also infusions and constantly getting weaker by the days. I could not possibly be pregnant! I could not possibly be pregnant and take care of myself or a 2 1/2yr old?!! God, this Is when I thank you over and over bc months ago I was angry I was "defeated" I was broken to pieces I was torn I felt nothing bc I felt why me out of alot of ppl why can't I have kids why can't I have one more of my own why me why so many like me don't get the chance either?! But I prayed for understanding over and over and patience with it. To give me peace of mind..its not until now Lord that I can say I am at peace with it. I may cry about the situation all together but I understand..I physically,emotionally,mentally,and financially can't do it and getting my tubes tied will save me and chris from any "mistake"and "heartache" we are grateful and beyond blessed with an amazing son the son I always wanted! Thank you God thank you times a million for allowing me to be patient enough and wise enough to note greedy,bitter anymore,and grateful for what I do have. It's hard being a woman and being told your body just can't accomplish what it is made for. It's like I did something wrong but I didn't I did what I wanted I had a healthy happy baby naturally and safely. It's just that I only got blessed once while some of us get the amazing opportunity to give more loving to multiple ;)

New year..new beginnings??

It's the new year! And I'm sick ;( I have the shingles just got over Thrush,uti,and ear infection what next man! Well I notice I'm super swollen all the time now and weaker than normal. Headaches eye aches flares its all back. I go to lupus Dr and they notice all the above and that yes I have shingles and that I need meds for that ASAP..they also say that my body is super weak and I'm not doing well. So back on Solumedrol for three days out of the week. Mwf schedule 30 min process which is usually an hour. She also mentions that I will put on the list to get benlysta a fda approved lupus infusion. It's pricey but I'm willing to try I've heard great reviews. Only thing is its a 1hr infusion but a 3 hr process. I'm gonna be exhausted for sure. I also have to go to kidney Dr bc kidneys are back high. My thyroid is higher also so the meds have changed to see if that will help any. I'm on a lot of meds and I'm praying for a miracle this year. We cannot afford more bills that's for sure. I also have my big surgery coming up.for tubes tied. Sigh.. But this year will.involve more awareness and more positive reinforcement with fundraiser charity events and raising money for all types of charities. I'm getting active and aggressive about all this for sure!! It's taking.my life over but I won't.let it takw me..I'm having shirts made soon and a basketball tournament in Feb can't wait! Xo

his touch awakens my soul

When Aiden holds my hand every night before bed or rubs my cheeks and gives me nose kisses every morning and night or when I'm sick it awakens my soul and fills my heart with joy. He is the most amazing and special child imaginable to go through this situation. He handles it all very well and at much ease and confidence that it gives me confidence to push through. I thank you God for BLESSING me with him when you did and how you did. He's my miracle baby and forever will be! he may be my only child but man is he one AMAZING one! ;) Basically I woke up this am with him in bed with us at 7 am like usual and he always does the same routine rubs Chris arm then snuggles close to me rubs my cheeks gives nose kisses smiles and says hey ma..then turns over and grabs my hand to hold..then he falls back asleep and I wake up 30min later and him an hr later. It's one of our many bonding moments I love! But I also get sad to think what if he gets so used to this and he is a mommas boy he calls me his best friend ;) but what if..I have to leave this earth sooner than my original plan of 102 and I leave when I'm say 50? Not saying Aiden will be holding my hand still Haha hey who knows but I know as time goes on we will make new bonding moments..to see or know a child to have to go through losing a parent scares me.. I pray I am there to see him have a family of his own. To see all the amazing things I taught him flourish ;) I have to think of these things bc its reality its life..everyone dies! I can walk out my house rt now and die and it have nothing to do with my diseases..but its just that these diseases I have are scary no telling what can happen at any given moment. Kidney failure,heart failure,and crazy lupus you just never know! That is why I try to prepare my family and myself for whatever. I always say my thank you to God and to everyone. I say my I love you's and count my blessings along with enjoying every single moment. Im patient out in public teach Aiden to say hello and thank you everyone we see and to have a great day! Little things that make others smile will make us smile ;) I just want Aiden to always know how to respect others no matter how rude they can be. Our unconditional love to our ourselves,God,and others makes the soul warm and at peace! Now that's what Aiden brings me daily!

Sticky notes galore

Im losing memory that I have sticky notes everywhere, alarms set for everything down to taking my meds to calling my mom. Aye yi yi brain fog is no joke! I forget I make an appointment and end up setting it up at either the same time or rt behind each other that I am rushing. Or I forget the appointment all together and they call asking where I am. I need a nanny for myself haha