About 2 months ago I went back to work 3/4 time. Although, I have really enjoyed teaching at Stevens Henager college it also has made my life just that much more stressful. The house is a complete disaster and of course it is spring so the yard needs some major work. So how does my body react but with a major lupus flare.
My finger and toes look like little sausages, my feet feel like I am walking on marshmallows that stab at me each time I move. And to top it all of I woke up this morning with a raging case of pink eye!.
Friday, May 2, 2014
Monday, April 21, 2014
Wishing for Cancer
As you read this title I am sure it will offend many people or even make you think less of me. Bur as a go from doctors appointment to doctors appointment trying to figure out was it wrong and often having to explain myself to the medical community I sometimes wish I had cancer.
No, I don't have death wish although there are times it seems more than I can bare. No, I don't think cancer is easy or a simple disease. But usually the way cancer works is you either go into remission or you die. After year of struggling with constant flares of my lupus sometimes I wish it would go one way or the other.
I also wish for a little understanding. This post is were I am not really sure if I will ever totally make this public. If someone with cancer isn't feeling well everyone accepts tries their best to help, they have fundraiser, huge events, society and even parades. Although, the lupus community is growing most people have no idea what it is or what a flare is or could mean. The general public just know it is the disease that "House" on the fox TV show first says every mysterious illness is. If I try and tell someone about my lupus it requires an explanation, and sharing this is hard it feels as if I am baring my soul. Should I tell them about the days that I can't get out of bed. The medication I have to take even to sleep, the medication I take to keep my own body from destroying itself. The hours it takes to clean my house as my joints cause horrible pain and my feet turn ghostly white and develop blood blisters.
But lupus has become my life. Lupus, killed my daughter, lupus affects my marriage, lupus has made me unable to have more children, lupus changes the way I can be a mother and my lupus is never going away. I am sure very few people will ever imagine how hard that is for me to accept, how much my heart hurt to think, will I get to grow old, will I see my grand children, will I see my children get married. How much more of my life will this disease take.
No, I don't have death wish although there are times it seems more than I can bare. No, I don't think cancer is easy or a simple disease. But usually the way cancer works is you either go into remission or you die. After year of struggling with constant flares of my lupus sometimes I wish it would go one way or the other.
I also wish for a little understanding. This post is were I am not really sure if I will ever totally make this public. If someone with cancer isn't feeling well everyone accepts tries their best to help, they have fundraiser, huge events, society and even parades. Although, the lupus community is growing most people have no idea what it is or what a flare is or could mean. The general public just know it is the disease that "House" on the fox TV show first says every mysterious illness is. If I try and tell someone about my lupus it requires an explanation, and sharing this is hard it feels as if I am baring my soul. Should I tell them about the days that I can't get out of bed. The medication I have to take even to sleep, the medication I take to keep my own body from destroying itself. The hours it takes to clean my house as my joints cause horrible pain and my feet turn ghostly white and develop blood blisters.
But lupus has become my life. Lupus, killed my daughter, lupus affects my marriage, lupus has made me unable to have more children, lupus changes the way I can be a mother and my lupus is never going away. I am sure very few people will ever imagine how hard that is for me to accept, how much my heart hurt to think, will I get to grow old, will I see my grand children, will I see my children get married. How much more of my life will this disease take.
Friday, April 18, 2014
Acceptance
Have you ever had one of those days when life seems more than you can handle. I think my life has felt that way for years and I have finally decided to "Cry Uncle"
The past couple of month I have come to accept that my life may never be how I imagined I may never be healthy enough to have another baby, and my arms may forever ache for want of one, a a piece of me forever lost for not having the opportunity to raise a daughter on this earth. I may never be healthy enough to return to school and get my masters degree and fulfill my life long of becoming a Physician Assistant.
I may forever struggle with an enormous amount of medical bills and financial stress that come with having a chronic illness. Over the last 4 years we have paid an average of 600.00 a month on medical bills. We have done everything possible to be able to keep our home and provide the necessities for our kids. I cut coupons, priced match, sold things, made things to sale, worked as much as my lupus would allow, Ed has done side jobs, sold real estate, mowed lawns, managed our rental properties just to try and keep up.
Last November, I think I hit an all time low. I went to the dentist and was told I would need complete month reconstruction. I needed to get crowns on 12 of my teeth. This pushed us beyond what we could even hope to pay.The cost for this is enormous. I sat down ran the number again and again trying to come up with a plan of action, we had a family meeting and explained to the boys that the money we had been saving for a trip to Disneyland was going to have to go toward bills. My sweet little boys handed over their nickels, dimes and quarter to help out. And I prayed and prayed and prayed some more to figure out how we would be able to handle another cost.
Over and over as I prayed I kept getting a feeling of "You are not alone, you have been blessed with amazing friends and family know is the time to ask for help." For anyone who knows me well this was not the answer I wanted. I wanted to be healed, I wanted to get an amazing job, I wanted to be able to have the life that I had planned for, worked for and dreamed of. Asking for help was not a "plan"
After months of a constant internal struggle, I gave in and followed the spirit and asked for help. Since, that time the trials have continued. Kaden, my 9 year old's appendix ruptured and we spend a week in the hospital. My husbands, insulin pump broke, my 5 year old has been schedule to have MRI every 6 months for a growth in he brain. I wish I could say after asking for help I feel at peace but at least I don't feel alone. I know I have family and friend I can call and ask for help who are able to understand and willing to assist in any way they can.
The past couple of month I have come to accept that my life may never be how I imagined I may never be healthy enough to have another baby, and my arms may forever ache for want of one, a a piece of me forever lost for not having the opportunity to raise a daughter on this earth. I may never be healthy enough to return to school and get my masters degree and fulfill my life long of becoming a Physician Assistant.
I may forever struggle with an enormous amount of medical bills and financial stress that come with having a chronic illness. Over the last 4 years we have paid an average of 600.00 a month on medical bills. We have done everything possible to be able to keep our home and provide the necessities for our kids. I cut coupons, priced match, sold things, made things to sale, worked as much as my lupus would allow, Ed has done side jobs, sold real estate, mowed lawns, managed our rental properties just to try and keep up.
Last November, I think I hit an all time low. I went to the dentist and was told I would need complete month reconstruction. I needed to get crowns on 12 of my teeth. This pushed us beyond what we could even hope to pay.The cost for this is enormous. I sat down ran the number again and again trying to come up with a plan of action, we had a family meeting and explained to the boys that the money we had been saving for a trip to Disneyland was going to have to go toward bills. My sweet little boys handed over their nickels, dimes and quarter to help out. And I prayed and prayed and prayed some more to figure out how we would be able to handle another cost.
Over and over as I prayed I kept getting a feeling of "You are not alone, you have been blessed with amazing friends and family know is the time to ask for help." For anyone who knows me well this was not the answer I wanted. I wanted to be healed, I wanted to get an amazing job, I wanted to be able to have the life that I had planned for, worked for and dreamed of. Asking for help was not a "plan"
After months of a constant internal struggle, I gave in and followed the spirit and asked for help. Since, that time the trials have continued. Kaden, my 9 year old's appendix ruptured and we spend a week in the hospital. My husbands, insulin pump broke, my 5 year old has been schedule to have MRI every 6 months for a growth in he brain. I wish I could say after asking for help I feel at peace but at least I don't feel alone. I know I have family and friend I can call and ask for help who are able to understand and willing to assist in any way they can.
Life Can Change in a Moment
After a wonderful trip to Vegas spending time as a family celebrating Isabel's birthday. I notice that my lupus was out of control. Through the trip I felt pretty tired and my joint hurt, so I pushed through the pain and made the best of the time I had to reflect and celebrate my daughter sweet life. Little did I know that weekend would change my life possible forever.
The year after she passed away as her birthday neared Ed and I decided that our way of remembering her and celebrating her short life would be to take a trip. I'll admit the first year it was more because we wanted to run away from dealing with her being gone. I was 7 months pregnant with Carter and my emotions were out of control, I didn't want to deal with anyone of anythings so we escaped to a hotel for a weekend with out worries.
As, the year have past and we have come to accept our emotions more and learn to grieve in more productive ways. Our trip for Isabel's birthday and been a small trip all of us look forward to and the kids talk about for months before.
In 2013 as our vacation came to a close, I was completely exhausted. Camden our baby was 6 months old, I was nursing but I felt like something more was wrong than just the normal new baby exhaustion. I scheduled an appointment with my Rhuematologist, and he gave me the clearance that everything was fine. My feet were huge, my face was starting to swell and I just felt horrible. I made an appointment with my amazing, Physician Assistant, Heather Leiasure, PA. With hours she had me in the hospital and with a diagnoses of stage 4 kidney failure, of lupus nephritis. In that moment my life has changed completely. In common term, due to my lupus my body had attacked my kidney's. For the last 3 year I have been on a medication called cell-cept that helps suppress my immune system. The side effects have been horrible, vomiting, nausea, fatigue, anemia. Over all it is horrible but makes my kidneys slowly start to heal and function properly. When we first started down this journey the doctors estimated 6 month on the medication then we could start going off 3 years later each time we try my kidney's start to shut down again.
Most people have moments that change their lives forever, being diagnosed with kidney failure has been one of those for me.
The year after she passed away as her birthday neared Ed and I decided that our way of remembering her and celebrating her short life would be to take a trip. I'll admit the first year it was more because we wanted to run away from dealing with her being gone. I was 7 months pregnant with Carter and my emotions were out of control, I didn't want to deal with anyone of anythings so we escaped to a hotel for a weekend with out worries.
As, the year have past and we have come to accept our emotions more and learn to grieve in more productive ways. Our trip for Isabel's birthday and been a small trip all of us look forward to and the kids talk about for months before.
In 2013 as our vacation came to a close, I was completely exhausted. Camden our baby was 6 months old, I was nursing but I felt like something more was wrong than just the normal new baby exhaustion. I scheduled an appointment with my Rhuematologist, and he gave me the clearance that everything was fine. My feet were huge, my face was starting to swell and I just felt horrible. I made an appointment with my amazing, Physician Assistant, Heather Leiasure, PA. With hours she had me in the hospital and with a diagnoses of stage 4 kidney failure, of lupus nephritis. In that moment my life has changed completely. In common term, due to my lupus my body had attacked my kidney's. For the last 3 year I have been on a medication called cell-cept that helps suppress my immune system. The side effects have been horrible, vomiting, nausea, fatigue, anemia. Over all it is horrible but makes my kidneys slowly start to heal and function properly. When we first started down this journey the doctors estimated 6 month on the medication then we could start going off 3 years later each time we try my kidney's start to shut down again.
Most people have moments that change their lives forever, being diagnosed with kidney failure has been one of those for me.
Tuesday, April 15, 2014
Diagnosis:
Most people lives change pretty significantly their first year of marriage and ours was no different. I remember growing up having my parents stress about medical bills and thinking I never want to have something like that affect my life, my dad passed away from heart failure when I was 19 and my mom had always battled health problems. My parent are amazing people, but as most young adults I wanted to do everything different then they did. Choosing your education and career choice just after your Dad has passed away at 46 years old makes a huge impact on your life.
With that in mind I set out getting a degree in health education. I am a planner, so when I met my future husband and he told me he had diabetes. I remember thinking okay, that is manageable as long he stays on top of things we will be okay. My husband on the other hand is not a planner so we balance each other out.
We were married in Feb. 2002 in May, I made a doctors appointment that would change our lives forever. It was finals week, I was stressed, a newly wed working full time and in my last semester of college, and I had some horrible heart burn. When I arrived at the office my blood pressure was super high, since my dad had just passed away the doctor decided to run some tests.I have no idea why he ran an ANA (one of the test for lupus) this is a horrible expensive test and not frequently run, but I am grateful he did. A few days later I got a call saying I needed to go for further testing for lupus. After a lip biopsy, some weird sticks they stick in my eye, numerous x-rays, about 100 vials of blood, urine cultures and even a test were I had to store my urine for 24 hours. I was diagnosed with systemic lupus. Funny how going in for heart burn can change your life.
With that in mind I set out getting a degree in health education. I am a planner, so when I met my future husband and he told me he had diabetes. I remember thinking okay, that is manageable as long he stays on top of things we will be okay. My husband on the other hand is not a planner so we balance each other out.
We were married in Feb. 2002 in May, I made a doctors appointment that would change our lives forever. It was finals week, I was stressed, a newly wed working full time and in my last semester of college, and I had some horrible heart burn. When I arrived at the office my blood pressure was super high, since my dad had just passed away the doctor decided to run some tests.I have no idea why he ran an ANA (one of the test for lupus) this is a horrible expensive test and not frequently run, but I am grateful he did. A few days later I got a call saying I needed to go for further testing for lupus. After a lip biopsy, some weird sticks they stick in my eye, numerous x-rays, about 100 vials of blood, urine cultures and even a test were I had to store my urine for 24 hours. I was diagnosed with systemic lupus. Funny how going in for heart burn can change your life.
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