Lupus Living

It has been a little over a year since I have posted & although I waited so long. Its ok because Im back. This lupus patient will never let much keep me down. So much has been going on, There has been alot of life changing events going on. I had a baby everyone, he is healthy & happy!!! He put me in remission, but gave me some other symptoms. Once you are diagnosed with Lupus, no matter what is going on remission or not you will always have some type of Lupus symptom. Im healthy & of course happy about my new bundle of joy, who is five months now. My son was born on April 10, 2011 at 8:17 p.m. I went into labor early and he was born 5 weeks early. As with all lupus patients when we find out we are pregnant, my first thought was fear & many questions. I was told not to get pregnant & actually the last time I blogged August of last year, my egg was being fertilized. I wrote a book about living with lupus & being pregnant & it will be released & ready to be purchased next April when my son turns one. I named my son after my father who passed last year & after his grandfather. His father picked his first name. My sons name is Chance O'Dan Al Richardson & he is a precious gift from God. I want lupus patients all over the world to know that it is possible. It was not easy & it was scary, but I made it through & so did my son. I had many other lupus patients with children help walk me through the fears & questions & I have some great physicians. Be on the look out for my book which will be updated on my website April 2012 www.lupiehugs.com Speaking of lupie hugs, everyone I am back to Purple Healers, Inc business & lupie hugs products will be available next month.Life changing events will help make you stronger. Thank You for continueing to follow my blog on my lupus journey. I will make sure to keep you updated on my lupus blood levels, my lupus nephritis (kidney disease) & the growth & development of my son.

Lupus = Limits

2010 has been a year of heartbreak hurt & unfortunately new lupus pains. Everybody who knows about lupus knows that stress, surgery & infection cause lupus flares. Well while taking a break from blogging I have experienced alot in just a few short months. My father passed away & although stressed, upset & angry, my lupus blood levels stayed at their best during that difficult time. I have also taken on alot more that has to do with lupus awareness, it is in me to keep raising awareness & let everyone know just how serious this illness is & can be. Purple Healers, Inc. is a non-profit organization created by me & is directed at auto immune illnesses. Through this non-profit the products called "lupie hugs" were created. My direction in doing this is to keep patients & America warm. The website is www.lupiehugs.com & I am working very hard to make sure one day a cure will be found. Lupie is a term used by lupus patients.
My direction is to keep going, I will not let lupus get me down. I have been fighting with my body each day to live as normal a life as possible. Lupus = Limits & I hope & pray that every lupus patient can find out what theirs are. I will continue to "Smile Everyday" even through all the struggles of keeping lupus under control. It is like having a full time job & feels like I'm coming down with the flu everyday. I am still on the same medications, not much has changed, however I am more focused on getting & staying off a few of these medications. I'm determined to stay healthy & I know it is not going to be easy, however I'm a fighter & we need & deserve a cure for lupus. I will make sure we don't suffer in silence any longer.

New Lupus Medication, going into the New Year!

Today, I can honestly say that I am feeling like a million bucks.....the shots have really helped me!!! I will make sure I get these every three months. I also have been on the new medication (Cellcept) for several weeks now, & have not felt much of a change. I have also started drinking alkaline water "magic water" as they call it in Japan & it is great. Im not the type of person that will just take or do anything that someone suggests, however if I beleive that it is good for my health after some good research, I will try it. I went for blood work yesterday & my rheumatologist called me today & let me know that my blood levels are looking good & to go ahead and start taking 1000mgs of the cellcept which will now be two tablets a day. Im not happy about this, however I will try it, I guess with lupus medication it can be trial & error. I just dont like playing a guessing game. I dont go back for bloodwork for a month & dont have another doctors appointment until February. Im happy about this. Im going to keep eating right, sleeping as best I can, but will be resting much more. I feel that going into the new year, Im not going to let lupus take over even more of my life then it already has. I love me more then lupus & I will continue to "smile everyday"

New Lupus Medication

On Tuesday November 10th I went in for blood work & a urine test. I had not heard from my physician this week, so I waited until my appointment yesterday On November 19th to talk to my rheumatologist. I feel like having lupus is like having a full time job, each and every week I am going up to the hospital for something. My appointment yesterday went better then I thought considering all that has been going on. I have been off of the Imuran for about three weeks now. I have several friends with lupus & many of them tell me of their pains that they have in the joints, & muscles. I had never experienced the pain, so I could not fully empathize with them......up until now. Since being off of Imuran I have experienced so much pain. At times it can be unbearable. I have joint & muscle pain & when I move my bones make popping & cracking noises. My ears, neck, shoulders, arms, wrists, fingers, hips, thighs, knees, ankles & even the bottom of my feet have been killing me. A few days out of the week, I have cried myself to sleep right after I have said much needed prayers. It is to hard to talk to my family about the pain, because the first thing they want me to do is to go to the ER. When I was first diagnosed with lupus I stayed in the emergency room for every little thing I was feeling, including some of these pains. I do not like taking pain medication & the few times I have, it has not helped. However this time I have to talk to my doctor about what I have been dealing with since he took me cold turkey off of my Imuran.

At my appointment I seen the Physician Assistant & I was fine up until my physical exam, he touched my shoulders & immediately I busted out in pain & tears. I realized there were spots on my legs that hurt when he touched them, that I didn't even realize were hurting. My rheumatologist came into the room shortly after & sat down with me to discuss what is now my new lupus medication. It is called Cellcept & Iam not happy about having to take it. I say I am not happy about having to take it because I have heard some terrible stories about this medication. Yes I know that no two lupus patients react to medications the same, but my other question is there are so many of us on the same medications, so I may experience what some else already has. I do not have a problem with change, but I do have a problem with a medication that I am taking, not working well for me & after two years of being on Imuran, which has not helped....I now have to take a stronger medication that I am going to dread taking. After my appointment I decided not to go get the medication due to fear.

Today November 20th I woke up in prayer & decided to let go of my fear & go get my new medication. I have them right here by me, but decided not to take them today. I will start anew tomorrow it is late in the day & I would like to take this new medication when I am feeling at my best. I will take it tomorrow afternoon.
Funny how this medication happens to be purple......my favorite color & the color for lupus. I faced my fear & bought the medication, but I did not take it??? I go back for blood work in two weeks to see if this medication is working well for me or not, until I take this medication tomorrow I will do some more research on it & say some more prayers. I almost forgot to mention that I got a shot in each hip with prednisone (steroid) for my pain. Today although the shot sites are sore, I can say that I feel like running in a few circles, and am feeling like a million bucks!

Blood levels & Imuran

I went for my flu shot on Friday & did my weekly blood work. This time it was more then one tube. I was also supposed to do a urine test but for 30 mins I was unable to go, so I will have to take that another time.
I woke up to a phone call this morning from my rheumatologists nurse Tina informing me that my blood levels from Friday went back down again. My wbc is back down to 3.1 not close to the 1.4 but still set off an alarm. I am to hold the Imuran once again & go back for blood work on Monday. If after my labs on Monday my blood levels go up, then I will only start taking 50mgs of imuran instead of the 100mgs I have been taking.
I am very thankful for a physician that is doing his best to have me as a patient as stable as I can be, I just feel like this is a true struggle for me. I struggle to get up everyday with the little bit of energy I am given. I have to plan my days each & every day, it is mentally draining to try and figure out if I'm eating right or sleeping right or trying to figure out why my blood levels keep going up & then dropping. I will be smiling today but there will also be tears. I am emotionally drained & am trying to make it not become physical.......so another day of resting, seems like all I have been doing lately.

My First MRI was no fun!!

During my life adjustment of living with lupus, I have had many tests, blood draws, lab tests, medication changes, mood changes, body changes, physician changes, & even changed states that I lived in. I had my first MRI (magnetic resonance image) done yesterday. Let me first explain why this just happened yesterday.
While living in Oklahoma, which is where the ethnicity Native American is highly recognized I was diagnosed with Systemic Lupus Erythematosus. (SLE) or just lupus as you may know it by. When I was diagnosed it was June of 2007 & my long hospital stay was in the Indian hospital which for me being 1/4 degree Indian blood was free, my stay, procedures, & medication were all free. After my diagnosis my physician visits & medication refills were free.
Upon moving to back to Denver & receiving Social Security Disability Benefits (SSDI) & not being able to work & being back to a city where it doesn't matter what ethnicity you are, if you do not have a job with insurance, it is hard to get the things you need. I have worked since I was 15 years old, so having lupus & not being able to work is a true shock to my system. No job = no health care benefits, I however was able to apply for a program that is offered through the state of Colorado, that pays half of most of the things a patient with a chronic illness needs. I can say now that it has been a year & I have payed out of pocket well over $4000 in medications, visits & procedures.
Which brings me to my first MRI, I have avoided getting this procedure done for several months due to the co payment of $600 & for fear of it revealing that the lesions that have been seen on my liver, really are something else that I have to worry about. As a lupus patient, hearing the worst is not always good at the times where you are already feeling horrible. I am, just now getting my kidney disease under control. Needless to say my renal specialist made the radiology department contact me for this appointment, because it is way overdue. I have been blessed enough to be put on my mothers insurance & have a better insurance plan that will save on procedures, medications, & visits.
My MRI experience was not the best, I didn't know that I was claustrophobic until I had to squeeze into that machine, I just remained as calm as I could & lay still. I know that this needed to be done. So now I am just waiting for my renal doctor to call me. I was also scheduled to go & do blood work to see where my levels are (hoping they went up), but here in Denver it has been snowing non stop & my whole body hurts. So until the weather clears up, I wont be going anywhere.
I often feel like I am lazy, knowing that I'm not, but lupus makes you feel like your body weighs twice your weight, I'm always laying around to avoid losing all of my energy. Tonight I broke down in tears.......I feel that I have lost what is the best of me, the fun & energetic part of me. I use to be able to get up & go, travel, exercise into a deep sweat, dance all night, go without naps. I had never been admitted into a hospital, I could eat what I wanted & go where I wanted. All of that has completely changed.

My life with lupus right now has LIMITS I have to watch what I eat, try to save up as much energy as I can & realize that my whole life has changed. This is one of the hardest things I have ever had to endure, it hurts me mentally & physically & is very heavy on my heart at times. I know God will never give me more then I can handle, at times I am stronger then I am able to be. I'm going to take time for me to get to a place where I can keep taking lupus over without so many limits......it is a work in progress & I know that I will find ways to challenge myself.
My motto is to "smile everyday" so there is no reason not to right now!

Back on Imuran

On Wednesday Oct 14th a nurse from my rheumatologists office called me & told me per his instruction I am to stay on the maintenance dose of 5mgs of prednisone & to restart the imuran today & go for labs in two weeks which will be Oct 28th. He as well as myself would like to see how my blood levels will do with me being back on imuran. I was initially on 200mgs of imuran when I was first diagnosed & last year was decreased to 150mgs when I moved back to Denver. I have now been instructed to only take 100mgs. Medication changes & maintenance is a part of living life with lupus, it is not fun it is scary & you just never know what side effects if any will occur from changes, that is why as a patient it is always good to listen to your body & always add any input you feel should be discussed with your physician. I know my body reacts in different ways to certain medication, so I try very hard to not overdo it. I was also instructed to keep my appointment for the middle of November & that I will have to do blood work once a month from now on. At this point all I can do is live life & be happy that I get this chance each day. It snowed here in Denver today & I felt it late last night, I have been sore & achey & on top of all of that, I did not fall asleep until 6am after being awake since 8am yesterday. I woke up at around 11am & am now feeling very very sluggish. I have raynauds syndrome, which can occur with lupus often, its where your fingers & hands change different colors in the cold & yes.......it does hurt. I have some very thick gloves that help but not for long periods of time, so I try to avoid the cold weather when I can.
Right now my hands are starting to hurt & I am tired, but know I need to find something quick to eat before the little bit of energy I have is gone.