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.
Friday, September 25, 2009
Friday, September 18, 2009
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.
Monday, September 14, 2009
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.
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.
Sunday, September 13, 2009
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.
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.
Thursday, September 10, 2009
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!!!
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.
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.
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