Tuesday, June 2, 2015

Surgeries and such....

     Four weeks ago today I had surgery on my sinus cavity and had stints put in my head and had my tonsils taken out. It's been a rough month to say the least. I wouldn't recommend either surgery to any spoonie unless you have no other option left.  My lupus has flared, I have had not one but two viruses, and my energy level is still at a zero.
     With Lupus it seems it's one thing right after another. I have to have an ultrasound of my heart next week, have to see my pulmonologist and my GP this week. I don't know about the rest of you spoonies but I am so tired of doctors and procedures. I am starting to feel like a lab rat. Last week it was my cardiologist and my ENT. My son came home from college and asked me if this is my life now. I told him yes. He said,"Mom this is insane!" He had no idea how badly my health had declined while he was gone. It happens in the blink of an eye it seems.
    Stay strong my little spoonies!!

Sunday, April 26, 2015

The Unavoidable

Looking back over the last year, my Health has deteriorated so much. I have known of people with diseases similar to Lupus and known a few with Lupus in the past year that have tried to commit suicide. Until recently, I couldnt fathom why they would take their own life. Why they would stop fighting. Well now I know.

It only takes me one hour of cleaning house or doing laundry or any chore until I am exhausted and sweating buckets. And this does not even begin to describe it. I am so weak I feel like my legs are gonna collapse underneath me. The sweating is not from being over heated, it is from over exertion and extreme exhaustion. I can only clean one room a day. And by the time the week is over and I go back too the first room, it doesnt look It has been cleaned in weeks. I feel like I never get anything accomplished this way. Like my house is always dirty. I feel like a failure.

I have fallen three times in the last week. I dont have the energy to wash my hair every day anymore. I could go on. And on. I know I should be thankful for the fact that I am not in kidney or heart failure yet. I am aware that things could be worse. But I am tired of struggling every single day. I just want one good day. Just one. I am tired of the doctors appointments and medications and shots! I am tired of trying to act like I am fine and give off this persona of being "normal" to anyone who is not family.

I wanted this blog to be inspirational when I first started it. But here's the thing. There is nothing inspirational about this disease right now. This is real. This is true. This is my life. And the only way to raise awareness is to start being real with everyone all of the time. Whether they want the reality or are ready for the reality. I have had this nasty disease for 15 years, and only about 75% of the people that know me even knew I had it. I have been ashamed and afraid of what people would think. I didnt want the pity and I didnt want to be treated like I was less of a person. There comes a time when you cant hide it anymore. It's inevitable, it's unavoidable.

Tuesday, April 14, 2015

Seasons Change

     I am sorry it has been so long since I have posted. As the title states, seasons change. And I do mean that metaphorically. Since my last post, my brother died. I have been diagnosed with degenerative disc disease, osteoarthritis of the spine, and a rare autoimmune pituitary disease. To add insult to injury I have to have surgery to reconstruct my sinus cavity on May 5. It seems like every time i go to the soctor i recieve a new dx, new meds, and a new speciaist. To say the least, i am getting depressed. The only thing holding me together at this point is the fact that my kidneys seems to be doing fairly ok. It just seems like it something new every week. I am exhausted. I am tried of this disease. I am tired of what its doing to my family. My son keeps having nightmares that i die. I keep trying to tell him until i go into renal failure he has nothing to worry about. I sont know how many lupies read this, but I am hoping my fifteen years experience will help someone not feel so alone and maybe being ore lupus awareness out into the public. I am still being asked after fifteen years what lupus is. It never ceases to amaze me.  I have been going to a chiropractor daily to try to get some relief from the osteo and DDD. It seems to be helping. I would highly recommend it to anyone! I am going to try to start to post daily again. This is my outlet. My place where I can bare my soul and try to help others in the process. For those of you who read this, thank you. Amd I hope you find something helpful in my experiences. Please feel free to ask questions and I will respond!!!
Much love and hope you have extra spoons tomorrow!!!

And a warrior's fight is over.

     Today, this world lost another Lupus warrior. A warrior not much older than myself, with a son younger than my own. When something like this happens it always saddens me, depresses me. Makes me question my humanity and just how much longer my body will continue to fight. With the new diagnosis of a pituitary disease (am awaiting an appoinent with an endocrinologist) it makes me wonder how much faster this disease will progress. One never knows when there time is going to be up. I could get killed in a car wreck tomorrow, you just never know. But it is a little disconcerting to constantly be faced with ones own humanity. I feel the need to make more people aware of Lupus and its affects. I get asked all the time, "what is lupus?" We need to make it our goal to get lupus awareness out there just like they did breast cancer awareness! We need to fight for a cure!!! But more importantly we need to fight for our lives! Fight each and every day to get the most out of that day you possibly can!!! Don't give up, don't give in! Lupus robs us of enough of our lives without us just giving it more pieces! Wear those butterflies proudly and say "I am a lupus warrior!"

Tuesday, April 7, 2015

Seasons Change

    I am  sorry that it has been so long since my last post. My brother died and I have been out of sorts lately. It seems every time I go to the doctor I get new meds, new dx's and new specialists. I have recently been diagnosed with DDD, osteoarthritis of the spine and a pituitary disease. As if I didn't already have enough diagnosis's as it was. I am going to a chiropractor daily to try to help my spine. I am exhausted. I am hoping this blog will help someone to not feel so alone with this horrible disease. I have been fighting it for 15 years now. Please feel free to ask any questions you might have. I will try to start posting daily again.
Wishing you all and day full of energy and plenty of spoons tomorrow!!

Monday, February 16, 2015


     I have been reflecting a lot about my life and my illness and my family over the past several days. I have lost a lot of friends and family over the last fifteen years. I had a lot of what i call fair weather friends. As long as things were going well they were along for the ride. Bit as soon as things gig bad, they disappeared. My feelings have been crushed repeatedly.
      My mother is the worst culprit. Example, i had two spinal taps three weeks ago along with a battery of other testing. She never pucked up the phone or texted me to find out if i was ok and how i was feeling. Then yesterday she calls wanting to know when i ho back to get all the test results andsays she will meet me there. I just flat out asked why. I do not understand this and I never will. Iif she cant be a mother any other time I do not want her showing up for the doctor visits she picks and chooses!!! 
     I hate this disease and what it has done to my life. I am sorry I do not have an i spirational post tonight, but this is real life and how i feel. Maybe tomorrow I will feel like kicking Lupus's ass!! Who knows? Til Then.....

Friday, February 13, 2015

How do you decide what is right??

     I am a photographer. When I couldn't work in the healthcare field anymore I had to reinvent myself. I needed something to feel like a productive human being. I have been very careful up to this point to keep my Lipus quiet, to protect my business I am trying to get off the ground. My thoughts were that if people saw me as a sickly person they wouldn't hire me, wouldn't trust me to do their portraits. This week a lady in my state was wrongfully accused of being drunk at a medical office before she was ever seen by a doctor. The receptionist took it upon herself to call the police and turn her in and request assistance without even talking to the lady first. She was given a sobriety test, which she passed and was humiliated in the process. I spoke my mind on facebook which sparked an argument with someone who is not really even a friend, nor does she know what it is like to deal with a debilitating disease like this. Now I wonder, will this affect my business? Do i keep my mouth shut for sake of dignity and professionalism or do I stand up for what is right and deal with the consequences? I am so tired of being the quiet one and trying to keep peace all the time. I am tired of not speaking my mind and standing up for what I believe in. So what do I do? And at what cost? Til next time.....