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.

Follow Up Phone Call

Well, the phone did not ring again, so I slept well!!! However I did receive a phone call on Tuesday September 29th from my actual rheumatologist, the first thing he asked me is if I was ok, have I been feeling faint, or like I have a fever, or anxious. I told him that my only symptom has been that I have been feeling exhausted, he told me that my white blood count was at 1.4 & that my immune system was basically shot. He also informed me that he would like for me to go back up to 5mg of prednisone & I immediately started to cry, & kept saying to myself, how could I be feeling so good & my blood levels be so low. He also told me to come back in Thursday October 1st for more blood work so he could see how my levels were, so he could make a decision on what the next steps for my treatment should be. I agreed :~(

I still felt tired for the next two days & could barely keep anything down, I didn't think that going from 1mg of prednisone back up to only 5mgs would make a difference. I was wrong I lost my appetite & could not keep anything down, to make my stomach feel better I drank beef broth & 7up. I went for blood work on October 1st that took 7 sticks & 3 phlebotomist to get 1 tube of blood (that was so frustrating) but hey I have horrible veins due to being on prednisone for so long, many lupus patients suffer from this. I received a phone call from my nurse Linda on Friday October 2nd letting me know that since the prednisone was increased my white blood count (wbc) went up to 2.8 & that my rheumatologist wanted me to come back in for more blood work on Monday October 5th & again for me to stay in the house & try to avoid sick people & if I went out to wear a mask (how do you know someone is sick enough for you to stay away from them?). I went for labs & am glad it only took 1 person & 1 stick this time. I received a call from my rheumatologist later that night informing me that my wbc wet up to 3.8. That was some great news to hear!!! he told me that he wanted me to come back again for labs on Thursday October 8th & after he seen what my wbc was, that we would discuss if I should be back on imuran/azathioprine or not but to stay on the maintenance dose of 5mg prednisone.

I at this point want to know why if I have been off of imuran/azathioprine for almost a month, why I would have to restart it now. Imuran is an immunosuppresive medication that obviously did not suppress my immune system. Once again I question why when I feel good does my blood levels go so low & when I feel bad why are my blood levels high again. Am I starting to feel bad........Yes, I'm feeling weak & exhausted........this is soo hard.

I went for blood work on Thursday October 8th & am thankful that again it only took 1 stick to get blood & I have not heard from my rheumy yet. Today is a holiday & yes he could have called on Friday, but to me no news is good news & the fact that I am starting to feel miserable again shows to me that my blood levels went up, if he does not call me by noon tomorrow then I will call him. I have been having things to do for Purple Healers & Lupie Hugs, but I have not had the strength to do much, all my body wants to do is be still.

Through all of this I have still found a way to "Smile Everyday" it has not been easy, but I am thankful for every breath that I take. I can only take this day by day & know that many other lupus patients go through worse then this sometimes. I just wish there was a way for it to be better for us more then a few days at a time, lupus along with regular life realities can take a toll on you.

Worse Phone Call Then Last Friday

I was almost sleep & received a phone call from an emergency room nurse, that my labs that I took today, were lower then they were before I was taken off of imuran/azathioprine last Friday. The nurse informed me to stay by the phone, just in case my rheumatologist says that I have to come in & be admitted into the hospital. The nurse also informed me, if Iam by someone who is sick or feeling sick to stay away from them, due to being a lupus patient without an immune system. I know that I dont have an immune system, but am thinking that it is extra low due to the decrease in my prednisone. I have actually been feeling pretty good, no new symptoms, I'm a little more tired then usual but that's about it. I'm on 1mg of prednisone, but I as well as all lupies know that when you start getting down on the prednisone, if you are not in remission then that means, your prednisone is going to be increased, until you & your physician figure out which lupus medications work best for you. Up until this point, I thought my combination of medications were working well enough to put me into remission, well going off of prednisone may not be an option, if you don't know about prednisone it is a steroid that has serious side effects that can cause different things to happen to your body. I was hoping to get off, but if my bodies not ready, then I'm not going to fight it just yet. I'm a pretty strong person & have faith that GOD will get me through all things, & never give me more then I can handle, it is just hard going through the process. This is one of the true reasons that I created http://www.lupiehugs.com/ to help with funds for research & for patients to go into those cold Er's or hospitals with warmth & comfort.

There has not been a drug approved for lupus in 50 years, its sad & heartbreaking. I will continue with my fight to help find a cure, with bad blood or not!!!

I was going to try & go to Chauncey Billups birthday party tonight in hopes of having a good time & seeing some old friends, or just some people I went to high school with, but Lupus always has other plans & my body wouldn't let me get the energy I needed to get dressed.

Be Thankful to GOD for all of your many blessings. the phone hasn't rung again, so I'm going to rest, not stress & try to get some sleep.

Disturbing Phone Call

Today I received a phone call from my new rheumatologists nurse, she informed me that my white blood count was at 2, which is very very low because it should be between 5-10. At my appointment, I had 12 tubes of blood work done. So today I was told to stop taking my imuran/azathioprine which is a medicine I have been taking since June 2007 when I was diagnosed with lupus. Stop taking imuran & continue to go down on the prednisone, I went from 20mg down to 1mg finally starting this Sunday. Wow, I'm nervous, a little afraid, & silently wondering, how my body is going to react. I am praying & know that now I'm going to have to rest, rest, rest & eat lots of fruits & vegetables until I go back in for another lab draw next Friday. That is the thing about lupus, you have to figure out what medicine combinations work best for you. It is not easy!!! I'm going to let GO & let GOD, but know that I'm going to have to pay close attention to my body, even more this week.

Currently Living Life with Lupus

Since the lupus walk in June, so many great things have happened. I will also say that some bad things have happened to. My motto is to "Smile Everyday" so I try to make that my reality each day, & it really helps. I still have my bad days, & my lupus struggles, but I try to get through them the best way I can. I have lost some meaningful relationships to lupus & my life changes but I figure if they were lost then they really didn't mean that much to the other person. The one thing that bothers me the most about lupus is fatigue, I'm constantly tired. I'm always laying around, at times I feel like my body weighs more then I'm able to handle, there are so many thing people take for granted, & so many things that I myself took for granted that I can not do today. Lupus will make you listen to your body & if you don't, you will suffer the consequences.

I explain to my friends how lupus affects my daily life by using the spoon theory (instead of spoons, I use cocktail straws) the spoon theory is explained on http://www.butyoudontlooksick.com/ its a great way of explaining & for others to understand what you go through. For the most part I have some great friends & family that have stood by my side & have been with me every step of the way. I did not know what lupus was when I was diagnosed, now I can tell you almost anything, even if I have not had that particular symptom, due to me having met so many great people through social networks, I frequent facebook, I have friends on myspace & I am always looking for great up dates on http://www.cure4lupus.org/, I am also a member of http://www.lupusincolor.com/ , & http://www.wearelupus.org/. I get the updates & support I need from all of these sites, & am hoping to find more.

Living life with Lupus is not easy, it is hard on me mentally, emotionally, physically, & spiritually. It is taking my family on an emotional roller coaster, because they can see that I'm not the same person that I use to be, I just tell them that I'm a different me, trying to get better!!!

There are so many wonderful things that have come out of me having lupus, I have met some great friends that know exactly what I'm going through & can understand, I have become a part of the lupus walk committee in my City & also walk for those that cannot. I have become a facilitator to hold support groups for lupus patients, family & friends. I have founded a non-profit organization called Purple Healers Inc that will thrive in raising awareness. I also created the luxurious "Lupie Hug" wraps @ http://www.lupiehugs.com/ I call them luxurious because any patient with a chronic illness needs something to make them feel warm, comfy, & special. I am proud of the design & taking time to help make these special products for others.

Now don't get me wrong, even though it may sound like I have alot going on, it takes alot for me to have the strength to do all these things, but I'm going to keep fighting. I right now am weaning off of prednisone, which is a steroid that can cause bone weakness & complications if taken for to long. It scares me to have been on this for two years, but going from 60mgs now down to 2mgs is a big accomplishment, but is taking some hard work, & more strength than I'm able to give sometimes. I have the strength of others that are off of this medicine to help pull me through.

Tomorrow I have an appointment with my third rheumatologist in a year. I have had to switch due to insurance reasons. I currently live with lupus & it is not easy, but my journey each week is well worth talking about, its hard to put things that are hard into words, but in many ways it helps to talk about it. My life is not the same, but I believe that life is what you make it, whether you have a chronic illness or not.

Complications since moving back to Denver, CO

I moved back to Denver, CO August of 2008. I was barely walking, felt weak all the time, & constantly slept. At this time I was on 12 medications but took 17 pills throughout the day. I was absolutely miserable, but happy to be back home. I started seeing a new rheumatologist & went to an appointment for blood work each week. During this time winter in Denver was coming & I could feel it in every inch of my body, my joints were hurting, I had pain & to top it all off I had gained 72 pounds & had insomnia. I didn't think that lupus could attack anything else, that is until I was informed that the protein in my urine was very high & I needed to get a kidney biopsy.

I was told that a kidney biopsy was no problem & an easy quick procedure that only required an overnight stay in the hospital. It is to see if lupus is actually attacking my kidney. I went in for this procedure on October 17, 2008 & was admitted into the hospital for 7 days due to complications. My kidney was punctured during the procedure & I internally bled, I lost conscienceness & was put on oxygen, it was what I call another close call. I was told by the physicians that only 1 in 1000 people have complications with this particular procedure & it was just my luck that I was that 1 person. I had difficulty with urination & my catheter due to blood clot build up in my abdomen, it was a horrible painful stay & when I finally started passing blood clots & urine after 3 days, I was so Thankful to God for seeing me through.

After that procedure I had a talk with God & myself & decided that I would try my best to stay out of the hospital, if I could help it. Granted that procedure was not my fault, but going through that was a horrible experience. To make a long story short, a few weeks later I was referred to a Renal specialist who at my first meeting with her, told me that I had stage 5 kidney disease.
For the life of me, I could not understand how in the world I could have stage 5 kidney disease (lupus nephritis) when I didn't even know I had stage 1 kidney disease. I'm a strong person, so I took that news with a grain of salt until it was suggested that I start cellcept, which is a form of pill that is used for lupus instead of chemo, therapy. I asked both my renal physician & my rheumatologist if I had to make a decision right then & there & they both said no, but I had to make a decision soon. I asked them both to give me a month & if I was still needing the medication that I would take it.

I decided it was now or never, so I changed everything about my life that was not good, & it started with my eating habits. I cut out red meat & went straight to salad & fresh fruit. The one thing that I knew was my biggest downfall was Pepsi, so I cut it completely out & started drinking fresh fruit juice & water. I went back to my renal doctor & the protein in my urine was down enough for me not to be taking cellcept. I am happy about the changes I decided to make!

I also again fought shingles in November 2008, if you dont know what shingles are......they are chicken pox that lay dormant in the skin & resurface when stress levels are high, they attack your nerves & are very painful. Many lupus patients but not all suffer from these. That is one of the big things about lupus, that no two patients have the same symptoms, but can all relate to each other. During my bout with shingles I was put on more medication & was taking 27 pills a day.

I will now say this that up until last week, I have made some extraordinary changes in my life & have been doing some things to get & stay as healthy as I possibly can. The first lupus walk hosted by the Lupus foundation of America was held on June 14, 2009, it was great & I am part of the walk committee. I have some great supporters, family & friends. I have also founded a non-profit organization called Purple Healers Inc, with some great mentors to help me along the way, & I also created "Lupie Hugs" wraps at http://www.lupiehugs.com/

I cant do much with lupus due to the aches & pains & the chronic fatigue, but I can do enough to help those who are unable to have the voice & energy that I have at times.

Lupus Tattoo!!!

I will never forget my 12th tattoo (my lupus tattoo) because I should not have gotten it anyway. I still did not know why I got it, but I am very thankful for the events that led to my diagnosis, its still hard sometimes to talk about, but it was & is my blessing in disguise. It is a island with a palm tree & a treasure chest, somewhere I usually imagine in my head often. My foot was swollen but I still wanted the tattoo (it's featured in the tattoo section on the cure4lupus.org website) Long story short the tattoo got infected & I started running a very high temperature & could not keep food down. For some reason everything I ate tasted awful & would make me vomit. I again went to the emergency room & was sent home with medicine for nausea & still with my slight temperature & my foot infection. I would feel hot all the time but just thought I was coming down with the flu. I was working at the local hospital in Tahlequah, OK from 6pm to 6am & taking classes at Northeastern State University from 8am to 1pm, leaving me with no sleep, stress & lupus to easily attack my body. During this time before my admission to the hospital I lost 12 pounds in a week, I was always swollen around my foot & ankles, it was a horrible transition. I have also suffered from shingles twice & fought through having walking pneumonia several times.

I was finally admitted into the hospital on June 12th 2007 & experienced a very long 22 day stay. I was initially admitted because the infectious disease physician thought the dark spots on my face (discoid lupus spots) were due to me possibly having HIV. When the test results for HIV came back negative, he decided that I needed to be tested for everything else. I was not diagnosed with Systemic Lupus Erythematosus (SLE) until the 16th day of my hospitalization. I had a bone marrow biopsy & a lymphnoid biopsy that removed four lymphnoids from my groin area to rule out lymphoma.

Finally the bone marrow biopsy & two days of determination from a panel of physicians decided my life change & my diagnosis of lupus. I look back on this now & am just grateful for the life I am given each day. I am on disability & have had to put continuing online education to get my bachelors degree on hold due to lack of concentration, memory loss & brain fog. I am unable to work full time & right now part time work would be difficult due to recent complications that are happening due to lupus activity. I was blessed to receive benefits my first time trying but pay so much for medications, surgeries & hospital visits that my income is very limited & I am barely making it. Through all of this I make sure I smile everyday, & try to stay positive, it is hard sometimes but this type of attitude helps.

I hope my story can help someone who may have some of the same symptoms in different ways. Lupus mimics many other illnesses, & is very hard to diagnose. My journey with lupus has begun & it is far from over, read on & see how I fight it!!!

The start of Lupus Therapy

I'm always telling my story about lupus to everyone I meet. I cannot go without telling someone all I know & have been through due to me being diagnosed with lupus. I feel my story as well as many people I have met all over the world are worth hearing. Up to this point my story is long & has been very hard. So I will make a long story as short as I can. Telling my story is like the therapy I need to get by, it gives me a reason to "smile everyday" Soon you will find out why, that is my motto.



I was diagnosed with lupus in June of 2007 at that time I did not know what lupus was or what caused it, I just know that hearing the words, there is no cure, scared me. I have had symptoms of lupus since the age of 19 that showed up through gynecology visits & my first lupus flare in 2004 at my cousins wedding reception. I was told by the ER doctors that I had food poisoning, now I wish that was all it really was. I had my first run in with discoid lupus in 2003 when I changed climates & moved from Denver, CO to Atlanta, GA, but because I did not know or my dermatologist did not test the tiny dark spot on my face, lupus was not a part of the equation. I did not have another episode of a lupus flare until January 2007 where I was told by a physician that I was being attacked by allergies due to my change of climates once again from Atlanta, GA to Tahlequah, OK. I was given a tapered medication called prednisone that immediately made me feel better & was sent home. This episode as well as prednisone tapering went on for 5 months straight until I was admitted into the hospital & I will give thanks to what I call my lupus tattoo.

Which unfortunately will have to wait until my blog for tomorrow, I am very tired & my night medication that I take for insomnia & pain has kicked in.