One Week [check]

The first week of treatments are done. Bam. The beginning was rough. I was sick all day after taking my A.M. doses. By the time my P.M. dose came around, I’d just start feeling better and have to go through the whole vicious cycle again. One Week later! I still get pretty nauseous a couple of hours after I take my medications, but I’m not actually hanging my head in the toilet. So I find that a huge plus! My body is adjusting fairly well. Its hard for me to explain what I’ve noticed physically without me explaining “the before.” This is my thought process when I leave the house. I dread getting the children ready, I dread getting myself ready. Everything I do feels as though I’m walking through mud, and so I take a lot of short cuts, and need a lot of assistance to get simple tasks done. Its very frustrating and I end up not wanting to leave the house because I’m so tired, and I know the pain of doing these tasks will just be worse later. Tonight my husband helped me get the children ready, and I got my self ready on my own. Granite it was just a t-shirt, jeans and hat kind of day but I left the house feeling light. Like after all I’d done today hadn’t weighed me down. Each task wasn’t gathering at my feet like mud. We took our daughter bowling. Normally I would have been so exhausted all I would have been able to do is just sit and watch her play. Tonight, I Alisa, got off the chair and bowled with my daughter. Squatting at her level, and cheering her on! I was able to squat down, and get back up again. This is a task I never thought I’d be able to do again. Granite it hurt like a sun of a gun, but the point is I had the energy to be a mom. A mom that could almost keep up with her baby. I didn’t notice until half way through her game (which was only a couple of throws) that I didn’t feel the need to stop and rest. I didn’t feel the desire to sit down to catch my breath, or try to shake some of the mud off. During the car ride home, I gazed out the truck window in complete awe of the tiny task I’d completed. At first I was super stoked that maybe something was working. I can deal with the pain, but the energy is what I miss dearly. Then that awe turned into anger. Complete volatile anger. This is what I’ve been missing out on with my children. These simple every day moments. I wanted to come home and write the angriest letter to my former doctor for all those years of being told I was crazy. I wanted to literally punch her in the nose for all the days I’ve missed out. All it took was a doctor to listen to me. I know that anger won’t fix what has been done. All I can do is keep moving forward. One day at a time. One week at time. By the time I got home I was tired. Medicine time, and sick time, and time for the pain to begin from all the exertion I’d endured of playing with my children. It was beyond worth it. I have hope.

Thoughts on my RA apt.

Yesterday was a roller coaster ride of emotions. I think I hit every single emotion possible. I didn’t talk much about how I felt or what was running through my mind. Before I met the doctor I was scared. Nervous to the point I was shaking. I have a horrible phobia of white coats… on top of the fear of them telling me all this pain, all these symptoms were in my head. Like they had been telling me for 15 years. When I’m nervous, the only thing I can do is joke around, and it relaxes me. As I said yesterday, he isn’t a joker. He got straight to the point. He asked me questions no other doctor had ever asked me before. Simple things. He said “may I see your shoes?” I thought, what an odd person… I held up my foot. I was wearing my slip on boots. He asked why I picked those today. I said I hate bending over and tying shoes because it hurts, so I wear slip ons. He said yup. He didn’t ask my “why are you here today?” he said, “ I bet your here because…. And he listed all my symptoms.” I said yup… So I immediately relaxed. There really are others like me lol! Then we discussed Which joints I had problems with. Then he asked me to strip to my undies… of course I thought, once you have kids, anytime you go to the doctor you might as well go naked. I sat waiting on him in a paper gown shivering so hard it was hard to sit still. Why on earth…would you have the AC blasting in a rheumatoid arthritis office???? I was so stiff from shivering I couldn’t move well. He left for a while. By the time he came back I was literally purple. Maybe there was a point to that procedure. He went through my range of motion. He left and came back with a stack of drugs for me. He asked if I wanted to do this a more natural way with vitamins or if I wanted to choose a more medical route. He told me all the things I would have to take if I took a natural route. I don’t do well on vitamins. I get very sick, and they have an opposite affect on me. Most of the time. So we discussed Pills. It made me feel better he had two options for me. That he wasn’t objective to thinking out side of the box. He wrote down all the vitamins and times I would have to take them. He said if I couldn’t tolerate the affects of the medicine he was going to put me on, we would go alternative. The First medication he prescribed is actually an anti-malarial drug. Hydroxycholoroquine. Which I will be taking twice a day. This medication is suppose to help with my fatigue arthritis, rashes, and my unexplained fevers. While taking this medicine for the next 13 weeks, I will have to routinely see the eye doctor every six months, to watch for a calcium build up in my corneas. Or I could experience blurred vision. He also said I would probably notice it get difficult to distinguish between the colors of blue and green. This is the most “serious” of the medications he prescribed. He also put me on a muscle relaxent to be taken at night to help me sleep. However I don’t feel comfortable taking that every night. I may do it when I need it, because I hate being incoherent when the kids get up at night. Like I said before, I react very easily to medications. Which is why I’m usually prescribed what they call the “granny Doses.” The other medication I’m on is the same thing I’ve been taking, but with a coated covering to help prevent stomach ulcers while taking it. We discussed what to do with my mouth sores. He told me that my mouth sores were caused by acid reflex, I was absolutely perplexed by this because I never have an issue of an upset stomach. Especially after the gall bladder came out. He said I did, I just didn’t feel it, and gave me some suggestions on tooth pastes a more natural kind. Grreat… After all that he sent me to the lab to get all my blood drawn…again. I sat reviewing and dissecting all my emotions. The greatest feeling I felt was relief. Relief that someone in this world believed my symptoms and gave me complete hope that I can beat this. I’m a little nervous about how I’ll react to all the medications. I’m just hoping the next 13 weeks go by easy and quickly. Then I began to think about all the prices on each medication. Which put me in a “why me” mood. How are we ever going to afford this? I have to get better! But can we really stretch our budget that far? Why do I have to be “sick?” I’m not scared of the diagnosis of Lupus. You can either let a disease live you, or you can live it and beat it. That is my take on it. I’m not mad that I’ve been diagnosed with this. I guess it makes me appreciate good days, and sunshine and good weather more then most people. I know there is no cure, and I’ll probably have to deal with this the rest of my life, but I plan on having a hell of a lot more good days. I plan on being the mom I want to be, but can’t. I think I’m just happy to know I’m not crazy. I felt sadness. I realize now, that I’m just in a little pain compared to what I could be in. Compared to how normal lupus patients are diagnosed. I can’t imagine the pain being any worse. I can’t imagine the blood work showing any more inflammation then there was. I can’t fathom that there are more people in more pain than I am with higher levels of inflammation in their blood. It makes me want to hug every single person that has ever been diagnosed with this disease. I have a great deal of respect now. To know my lupus is so simple compared to what most are going through. I can’t wrap my head around it. We got to find a strong cure. I wouldn’t wish this on anyone. Also the hardest thing for me to change right now is my diet. I love carbs. But more then that... i have to change how i eat and when. I have to start eating when i take my meds to protect my stomach. Which means i will have to eat breakfest, if you know me i hate breakfest. I usually don't eat until lunch time. So today i sat and ate breakfest with the kids, forcing it down my esophagus bluuuck. I think that will make me sicker then the actual meds LOL

One Small Step in a Big Journey

FIRST OFF THANK YOU EVERYONE. YOUR SUPPORT WAS FELT TODAY. I don't know where I’ll begin for this.

I'll just start at the beginning. Me arriving an hour early to my appointment do to nerves. and jamming out to Phil Collins.

My appointment was at 1:00 and i went inside at 12:30 The receptionist welcomed me and asked for my insurance cards. They did not except my secondary insurance, and my primary insurance the cards or the group number has not yet been processed. So i don’t have those cards, but i had the name of the place and other important items. The receptionist firmly told me I would not be seen today with out those medical cards. I said well I’ll sign a paper stating I’ll pay in good faith. She said sorry ma’am we don’t do that here. You will have to pay $370 up front before we can let you see the doctor. I had to leave and regroup. All my nerves just left. I told her I’d be right back.

I went out to the truck and cried my eyes out to Jeremy blubbering like a big fat baby. Jeremy regrouped me and I marched back in.

I leaned over her desk and I said nicely but firmly.

“so you’re telling me, that because you don’t accept my secondary insurance and that because my primary insurance is slower then moses, I can’t be seen today unless I pull 370 from my ass?”

“yes ma’am”

I leaned a little farther over the desk. “do you realize I’ve been waiting 15 years to get to a doctor like this? Let alone had my heart set on this appointment for 6 months, and you’re telling me, that because you failed to mention this critical detail, I can not be seen? Is the correct?” I leaned farther.

“um, well, um… let me go talk to my manager right quick.” *waiting, still leaning.* “Mrs. Green, please have a seat, the doctor will see you shortly.”

*I smiled*

The doctor came in and looked through my chart and sat and stared at me in disbelief that no one had figured out my illness. He evaluated my joints and said that my hands and ankles have suffered the most. He could barely touch a spot on my ankles with out me yelping.

Then he torched a spot in my back that sent me straight up off the table. And I yelled

“YO! LETS NOT GO ALL KARATEE HIII -YAA on me k!~” he dryly laughed.

My new doctor has absolutely no humor. And didn’t like some of my jokes. But I did make him laugh when he touched that spot, maybe he is sadistic. Eek.

He put me on two new medications that should take about 13 weeks to help. I’m worried about some of the side effects, but he said ya gotta feel worse before you get better. I felt relief that he instantly saw what was wrong with me, didn’t question me. He spent an Hour and a half discussing all the possible side effects of my new medications, and the possibilities of the lupus getting worse. But he says he believes we can put it into remission as long as I do what he says…I said uh oh. He said first…. NO MORE CARBs. I said …..ok….. He talked with me about all my concerns and made me relax. So the next few weeks may be rough….

But hey I got the support and we got this

My Story

I first realized I was different from other kids my age when I was 9. While others skipped, jumped and ran with out a care, I was always two steps behind them holding my breath; so I wouldn’t cry out in pain with each step. At night when my mind wasn’t focused on who I was going to chase next, I was reminded of the pain that washed over me. I would cry through the night, and at times my mother would soak me in a hot bath to help ease the pain. Sharp pain in my ankles and throbbing aches in my knees were to blame. After many reoccurring nights of this, my mother sought the opinion of our family doctor, who promptly diagnosed me with growing pains and reassured us both that I would soon grow out of this “stage”. That was in 1995.
At age 14 my feet began to ache. Every morning I dreaded putting my feet onto the floor, because the slightest pressure on my feet felt like a thousand nails stabbing the soles of my feet. I knew if I limped to the shower I’d find some relief. My joints would loosen up and I could begin my day.
I ignored the pain and continued playing my favorite sport. Soccer. After soccer practices I usually felt frustrated with my self because I knew I was the worse player on the team, and the harder I tried the more my body would let me down. When I would take off to run, my joints would sometimes freeze, or my foot felt like it was going to shatter after kicking the ball.
During this time I also noticed smaller things, such as, buttoning my shirts, zipping my coats, or even holding a pencil, were becoming more trivial.
Age 16 approached and the pain worsened. I began to not want to play soccer any more because of the pain I experienced during and after a game. Cold weather became my mortal enemy. During the cold months I felt like my whole body could shatter. I also began experiencing swollen lymph nodes under my arms. They would swell to the size of a golf ball.
I finally decided to talk to my doctor about all the pain I felt. Her diagnosis was I was a very depressed anxious person. The pain I was experience was all in my head. Depression can make you think you hurt.
I couldn’t believe that all this pain was in my head. It felt so real. She dismissed all my concerns I couldn’t put my finger on what I was so depressed about. I really did like my life. I was happy with my friends, and my home life. The pain was the only thing I could think I should be depressed over. That was in 2002.
I’ll fast forward a few years to 2007. I’d dealt with exhaustion for a long time. However working behind the service desk at Toys R Us, I was happily cleaning the front desk and greeting customers when the worst exhaustion spell I ever had hit him. I was returning a customers item when I felt like my blood had drained from my entire body. Everything grew extremely dim, and I broke out in a cold shaky sweat. I remember the customer telling me I should sit down. I held on to the desk for support. I couldn’t pass out here. Everything felt far away, the voices around me, my eye sight. Luckily someone took over the service desk to allow me to retreat. I began shaking hard. My breath became fast, and I felt like my heart would literally jump out of my chest. I told my boss I had to go home. He excused me. I don’t remember the drive home. But I can tell you I slept for 14 hours straight after that. When I woke up I felt fine.
I’d had several attacks like that before but none quite as scary and bad as that one. So I decided to go to an electro physiologist. I wore a heart monitor for a month, and caught a few of my episodes on the recorder. He diagnosed me with sinus tachycardia.
With that diagnosis, he still didn’t know what was causing my sinus tachy. So I took a daily medication to help keep my heart steady. I still had a few more episodes after that.
2008 I began working in a nursing home. To get me through an 8 hour shift of lifting patients I would consume more then 8 Motrin a night. My Body would ache, and the episodes became more frequent the more hours I worked. After a few months of going like this I took a month off to regroup. During my break I found out I was pregnant.
My pregnancy was very hard. I turned toxic for unknown reasons. I managed to deliver a beautiful healthy, 6lb 7oz baby girl. After holding her I realized I had to find what was wrong with me. I wanted to be the best mother I could be. I couldn’t talk to my new doctor just yet about everything I’d endured with my former family doctor. I couldn’t endure being told it might be all in my head…again.
2009 I gave birth to a beautiful, healthy 8lb 9oz baby boy, after a very long difficult pregnancy. Again I turned toxic for unknown reasons, but endured the bed rest to become a mother yet again.
After my second child, things took a turn for the worse. The pain became intolerable. I was exhausted. Actually exhausted really isn‘t the best adjective to how I felt. I became lost again. I was so happy to have my two beautiful babies. However, I felt disappointed in my self. After watching other mothers play with their children, running, jumping, standing. The frustration would set in. I spent many times crying on the way home from the park, because I felt like a bad mother. Why couldn’t I do the things other moms could do. I wanted to get on the ground and play too. I wanted to pick up my children and swing them and feel the carefree laughter.
I got brave. I wanted to be that mom, who could do anything. I wanted it so bad. I broke through my fear of being told I was crazy and told my new doctor how I’d felt for years. Showed her my charts. She stared at me in disbelief. Her first words were “Why on earth did you not tell me this?, did you know this was why you turned toxic during your pregnancies!” I just looked at my shoes and said “because I thought you’d accuse me of being depressed, and I worried about people thinking I was one of those crazy depressed mothers.”
She ordered a special blood test immediately. One I’d never had before. It turned up positive for Rheumatoid arthritis. She then further ordered another special blood test, which shows the antibodies created during a lupus flare up attack. She told me, I believe you have Lupus. Lupus? What the heck is that? She never explained to me fully what lupus involved.
I loved my doctor, but she was not aggressive. She didn’t tell me what could or would happen with out treatment. I never took it seriously. I continued to struggle, and again I lost hope. Until I met someone like me. Someone who had the same types of bad days. The same types of aches. It sparked my hope. Hope that I would find an end to the pain. To be the mom I wanted to be.
I began again, with a new more aggressive doctor. She immediately agreed I had lupus. She went through the check list, swollen lymph nodes, loss of hair, pain in chest, red soar joints, rash on chest, rash on hands, mouth soars and so on. Then she took her wooden stick to look at my tonsils, but she stopped, and looked at my nose. She traced the outline of a butterfly, the faintest little butterfly rash across my face. She asked how long I had had that. I shook my head and had no idea what she was talking about. She held up the mirror, and I said oh that’s just my complexion, I’ve always had a hint of redness to my face. Everyone always asks if I’m wearing blush. She said, I’m afraid its another symptom to your lupus. My rash on my face only hurts during a flare up, and only turns slightly red. She has made an appointment for me to see a Rheumatologist. I see him for the first time March 21st 2011. I’ve waited six very long months to see him.
This year I am walking for lupus. I’ve finally found a name for what I have, most would be devastated to hear the words lupus. For me, it was a relief. I wasn’t crazy. In fact, I have a whole team of friends who are just as lupie as I am!


Chronic bruisings

Mouth sores i get every flare up

My hands normally My hands swollen during a flare up

Rash i get across my chest

What Is Lupus?

I can give you a medical definiton about what lupus is.

This information was curtsey of www.lupus.org

Definition of lupus:
Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

What may trigger Lupus:
Genes
Environment
Hormones

Symptoms of Lupus:
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
5. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
6. Kidney disorder – persistent protein or cellular casts in the urine Neurological disorder – seizures or psychosis
7. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
8. Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies Abnormal antinuclear antibody (ANA)
9. Hair loss
10. Fatigue

What Living with Lupus is like for me:
* It prevents me from being the best mother I can be.
* small daily tasks are hard for me to accomplish
* skipping out on dates with friends and family
*daily naps are required for me to function
* I have to ask my husband for help…a lot.
Every day is a constant never ending battle. I fight extreme Fatigue, and at times I feel like the pain I suffer from is just too much. I’ve learned the only way to do battle this disease is to stay positive, rest a lot, and cherish the good days.
During a flare up I read inspirational quotes, hug my kids more, and try to laugh as much as possible.

Lupus is REAL

I had my feelings hurt very badly this evening. I have to remember that people who are healthy don't understand what i'm going through and don't know what to say. However when stupidity comes from those you trust or even family it hurts a little bit more.

I've been taking a new medication, it makes me very sick to my stomach. When i get to the point i start to feel better its time to take another dose. This shouldn't last for to long. My body should adjust quite easily after a few more days, i hope :)

Any way, I was speaking with a family member, and they were asking how i was feeling, and i told them the truth out of trust. They asked me what i even had. I explained to them Lupus. Their reply was, Lupus isn't a real thing. The doctor should have just diagnosed you with stupiditis. I'm sure the family member was joking with me. However it hurt. People honestly don't know enough about lupus. All they know is from what they see on sienfield or House. Hopefully one day lupus will be more understood until then, i guess we fighters just have to hop over these negative comments.

This is my first blog. I wanted to go into detail about my story and my life living with lupus, but this was something i had to get off of my chest, it really stung. I don't want to dwell on this conversation when i lay down so i had to vent. i'm still working on my site.