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.