I Wanted To Die Today…My life with Lupus.

It is May 20,2017. I was literally looking up assisted suicide this morning when one of the kids found me in my bedroom crying in bed with the phone in my hand. I had enough. I had no more fight left in me. It started a few months back when social security decided to dock me until August of this year for giving my son who lived with me at that time money to fix the only car we have and to buy food and move out as he is in college. The money I “gave” my son did not belong to the government. I had sold a piece of property that was bequeathed to me by my late aunt who passed away from breast cancer. I have always been honest with social security and I have always told them if I came into finances or not. I was advised by social security that I was not permitted to keep the money past a certain limit or they would not give me my social security disability back and that would also mean I lose my medical insurance the second I lose my disability income.

The action of giving my son money was deemed via my case worker as “untraceable income”. I had also provided bank statements of my account and my sons bank account to show social security where the money went. My son called my case worker for me as I did not have a phone at the time due to my income being cut off. I could not pay my bill. My son commenced trying to speak with my case worker after I personally gave my case worker permission to speak with my son. My case worker told my son she was not permitted to speak with him about my case. The only thing she could say was the reason I was denied my income was because I did not use my bank account to fix my son’s car and buy the food we needed and pay for his moving expenses. I was in shock and befuddled as to why this was a good enough reason to cut my income that ultimately cut my medical.  I am sitting here like “You mean to tell me…”. (Face palm to the max.)

I am sure by now other than reading the title you are wondering what my disabilities are that are so bad I wanted to die today. I have lupus. I also have approximately fourteen herniated discs in my spine. Five out of seven discs herniated in my neck alone. I have permanent nerve damage. I have diabetes type two. I have a thoracic aneurysm and am in need of imaging and open heart surgery to repair my aneurysm. I have high blood pressure along with other problems as well like asthma. The list continues. The latest problem my body produced landed me in the hospital yesterday. It had been three days that I was out of meds.  (Remember I lost my disability that in turn automatically negates my medical coverage. No medical, no medicine. ) I was not able to eat or drink for three days. I was constantly vomiting with severe headaches, eye pressure, head pressure, earache’s, muscle spasms and uncontrollable shaking. By the time I got to the hospital I needed two bags of fluids because I had dehydrated kidneys. I was told by the hospital doctor that it was from my lupus. My life is constantly in need of care by my physicians and medication. Lupus is incurable at this time. Having it hit my organs the way it did has taken down the quality of my life even more.

I fully rely on my medications to give me some form of relief to even remotely function on a daily basis. I have ten different medications to keep my body even remotely functional. Without these medicines the quality of my life deteriorates drastically. It came to a point where I was unable to control the shaking in my hands long enough to even sign my name or fill out a simple form. I had lost a lot of my hair from lupus and I continue to lose hair. They call it “Life of a spoonie”. I had started to sell everything I own to afford the basic needs like food, toiletries and pet food for my animals. I started strong as I had a supply of meds to last me for so long. My house is up for sale as well. I thought by now someone would have made an offer to buy it but this house is such a dump I spent over four thousand on the plumbing and septic alone. This house needs a roof. There is no flooring in this house just base cement. The pool was swamp green until it was drained. shortly thereafter the walls inside the pool just started falling down from a lack of water pressure to keep them up. Whoever did the last resurfacing job really took someone for their money. The interior of the house has not been updated for over twelve years and the bathroom in the hallway needs plumbing from the floor to behind the wall where the toilet sits. It is no wonder no one wants this house.

I was left with a huge job of cleaning out this house after it was bequeathed to me and my cousin. Yes, my cousin owns half this house with me. She however through the years has barely come by and rarely helped in any physical sense or financial form. The only thing she is waiting for is the final sale so she can collect her half. She told me flat-out she was not going to put a dime into this house. I asked her how much she wanted for me to buy her out. Her figures were outrageous to say the least. I was unable to financially oblige. I had begged for help from my family that lives nearby with no relief in sight. Everyone would rather see this house go up in flames. I have tried my best through these last three years to restore this house. I am financially drained.

When my income stopped along with my medical I was unable to continue the repairs on this house. What once stood as a beautiful home is now just a shell of its former glory. Someone even converted the fireplace into a pantry. I really have no idea why anyone would do that. Fireplaces are lovely. That is however besides the point. In the meantime of trying to do the best I can to stay positive and survive, my medication supply slowly dwindled day after day.  My resources followed not too far behind.

I diligently held yard sales meeting people in my community that had less than I. I gave more stuff away than I sold. Person after person. Story after story of hardships and heartbreak. In this day and age it has been hell trying to stay strong when everyone has a story of their own to tell. I bottled up everything inside and swallowed my pride. I did not tell my siblings how bad things really had gotten. I had went days without food just so I could buy my dogs their food. It was a minor sacrifice to me because I really love my dogs. As this continued and things did not go as planned I came to a road of no impasse. I had finally ran out of medicine and things to sell. The only one asset I have left is still on the market for sale with no one interested.

What happened? Where did I go wrong? I have tried my best but my best was not good enough. As I finally came to the point of three days with no medications and zero way of getting any I became very ill. That is how I ended up in the hospital needing fluids. I got home and I could not stop crying. What happened to me? I use to check for bombs under trucks. I use to do security at our very own ports in Tampa.  I use to work with the homeless on my own in the city many, many years ago before I had an accident that messed up the rest of my spine. I even had a sponsor to become a Florida Highway patrol officer. From building myself up I had been knocked down one body part at a time.

Being diagnosed with lupus was the most shocking thing I had medically happen to me. Trust me I have been through the gates of hell and Lucifer himself had a cake walk compared to me. (Whiny baby lucifer. #supernatural #fan ) I had cried in the ambulance wondering what had come of me. You know I even lost fifty pounds on this epic weight loss journey just to gear up for the open heart surgery to repair my thoracic aneurysm?. I joined the fitness community on Instagram after I found a few people on social media I was told about “MyFitnessPal” an app to assist with weight loss. (Please make a lupus friendly version as most of us will never meet a true daily caloric intake. Some of us are not lucky enough to hold down food. ) I reviewed my life and my inner strength that inner warrior was so beaten down and hurt I didn’t want to get up and fight anymore. That is what brought me to this morning where I was so done with my pain and saying to myself, “Why the hell should I keep fighting to survive when it feels like the universe is trying to kill me?”.

I took to social media basically saying goodbye to everyone as I was going to make it to a state were assisted suicide was legal. Death. Blissful old friend death. I longed for it now. Why bother to fight anymore? What was the point? I am in so much emotional pain with a never-ending medical cycle that has beaten the piss out of me. I survived domestic violence.  ( I still have a broken nose from the night my husband tried to kill me.) I survived a life of drug use over twenty years ago. I turned my life around and fought so hard for so long to make a difference in this world to pay back for all the wrongs I had done while I was a drug addict in my early twenties. I built my future off of a broken past.

My present day was shattered like glass the second social security took away my disability. Social security gave me the death sentence. I figured before this aneurysm blew in my chest since I can’t get the medical care I need or medication I was going to die my way. I was not going to allow my death to be that of a failed artery.  Here I am…do you know what happened next?

My son ratted on me to my siblings and he came running to my side. Tears in my eyes he stayed strong for the both of us calling and arranging between my eldest sister and my brother getting my phone turned on and my medications paid for. My family and friends networked like crazy to save me when all I wanted to do was go off and die. I am sitting here in tears grateful for such love that I feel I do not deserve.

My struggle continues. My story goes on but how many people out there that are like me never make it to the next page let alone chapter in their book of life? Suicide and the feelings of no hope are real especially when you hurt so much inside and out. The emotional to physical pain a lot of us deal with on a daily basis is so immense trying to describe the hurt inside would do no justice to the true pain we feel. I am here due to the love of family and friends. I want to make sure if you are reading this and you are struggling and hurting just as bad or even more than I to remember even though we feel alone we are not. I will give you a link to suicide prevention hotline if you feel you would rather keep this private. There is no shame in asking for help. There is no shame in being sick. There is no shame in being human. There needs to be acknowledgment to how the system works for those of us disabled and in need of care. My story continues as this is one more page in my book of life…Chapter… “I Wanted To Die Today…My life with Lupus.”

https://suicidepreventionlifeline.org/

National Suicide Prevention Lifeline

1-800-273-8255

http://www.iasp.info/resources/Crisis_Centres/

International Association for Suicide Prevention – Resources: Crisis Centers

Click on the continents, in the map below, to find crisis centers in Africa, Asia, Europe, North America, Oceania and South America.

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