By Scott Servoss, Indianapoli Indiana
My wife Amanda was diagnosed with Lupus six years ago. That is when life became real. She had symptoms prior to that but that day her agony was given a name. She was quickly put on several medications and we tried to learn as much as possible about the disease. As a husband, I naively thought that the medication would magically cure her pain; as it were strep throat or some minor illness. As you probably know, I was immensely wand unequivocally wrong. Over time, her symptoms got worse. She struggled with severe joint pain, which consistently attacked the different joints in her body in a very inconsistent manner. Lupus would attack her elbows one day and then move around to her other joints with no apparent regularity. We always seemed to be one step behind the pain. Physical pain eventually mutated into attacking her mind and spirit. This was not the same woman I married. I could see the pain in her eyes and hear it in her words. She always looked defeated. As a husband, the disease attacked me as well but only mentally. It is so hard watching her in pain everyday. I tried not to think about it. In fact, when she was hospitalized for five days in intensive care, I could barely go to the hospital because I did not want to accept it. I was scared like a boxer dodging an opponent. At that point the disease had captured my spirit as well. I wasn’t laughing or communicating with anyone, I was existing but I wasn’t living life It was hard for me to accept the fact that there was nothing I could do to make my wife better. In the past couple years, we were told we couldn’t have kids naturally. So we underwent five IVF treatments with no success. In the end, the diagnosis was the IVF was not working because of the Lupus. We were both devastated because we wanted so dearly to have a family. With each failure from the IVF came more disappointment. This was when we hit the bottom of existing and so we lived in stillness for about two years.
I am not sure what happened next or how it happened, but in the last year we stopped letting Lupus control our lives. We have turned to more natural remedies and activities. We do a lot of meditating, relaxation, and positive activities. This did not happen overnight and it continues to be an ongoing process. However, I am now facing this disease head on instead of ignoring it. When my wife is in pain, I lay next to her. When she is sad, I make her laugh. When she has no energy, I tell her I will give her some of mine. When she cries, I let her. It was scary for a while especially in the hospital as I I knew it was serious when the usually spunky nurse couldn’t tell me it was going to be ok. I had to dig deep in my soul and scrape the strength to face this fight. It has taken a while to gather each ounce of courage for it to make a noticeable difference but I have done it and it has made a difference in both of us. Now we have hope, courage, and love that will fight this fight. Recently, we were told there was one treatment we could try to combat the Lupus in regards to the infertility. We were told it was very expensive but hand in hand we just calmly looked at each other and said, “we will find a way” without words. So now we are raising funds to try this treatment and I don’t know if we will but I am willing to try because more than anything in the world, I just want to be a dad. With faith, hope, and love I think it will be ok. Rather I know.
I don’t know if anyone survives Lupus but rather we have learned to manage it. It was a steep learning curve but I would consider us Survivors. Last week we planted some vegetables, flowers, and herbs, and it is exciting to see if they will grow.
www.gofundme.com/makeamiraclehappen
My wife Amanda was diagnosed with Lupus six years ago. That is when life became real. She had symptoms prior to that but that day her agony was given a name. She was quickly put on several medications and we tried to learn as much as possible about the disease. As a husband, I naively thought that the medication would magically cure her pain; as it were strep throat or some minor illness. As you probably know, I was immensely wand unequivocally wrong. Over time, her symptoms got worse. She struggled with severe joint pain, which consistently attacked the different joints in her body in a very inconsistent manner. Lupus would attack her elbows one day and then move around to her other joints with no apparent regularity. We always seemed to be one step behind the pain. Physical pain eventually mutated into attacking her mind and spirit. This was not the same woman I married. I could see the pain in her eyes and hear it in her words. She always looked defeated. As a husband, the disease attacked me as well but only mentally. It is so hard watching her in pain everyday. I tried not to think about it. In fact, when she was hospitalized for five days in intensive care, I could barely go to the hospital because I did not want to accept it. I was scared like a boxer dodging an opponent. At that point the disease had captured my spirit as well. I wasn’t laughing or communicating with anyone, I was existing but I wasn’t living life It was hard for me to accept the fact that there was nothing I could do to make my wife better. In the past couple years, we were told we couldn’t have kids naturally. So we underwent five IVF treatments with no success. In the end, the diagnosis was the IVF was not working because of the Lupus. We were both devastated because we wanted so dearly to have a family. With each failure from the IVF came more disappointment. This was when we hit the bottom of existing and so we lived in stillness for about two years.
I am not sure what happened next or how it happened, but in the last year we stopped letting Lupus control our lives. We have turned to more natural remedies and activities. We do a lot of meditating, relaxation, and positive activities. This did not happen overnight and it continues to be an ongoing process. However, I am now facing this disease head on instead of ignoring it. When my wife is in pain, I lay next to her. When she is sad, I make her laugh. When she has no energy, I tell her I will give her some of mine. When she cries, I let her. It was scary for a while especially in the hospital as I I knew it was serious when the usually spunky nurse couldn’t tell me it was going to be ok. I had to dig deep in my soul and scrape the strength to face this fight. It has taken a while to gather each ounce of courage for it to make a noticeable difference but I have done it and it has made a difference in both of us. Now we have hope, courage, and love that will fight this fight. Recently, we were told there was one treatment we could try to combat the Lupus in regards to the infertility. We were told it was very expensive but hand in hand we just calmly looked at each other and said, “we will find a way” without words. So now we are raising funds to try this treatment and I don’t know if we will but I am willing to try because more than anything in the world, I just want to be a dad. With faith, hope, and love I think it will be ok. Rather I know.
I don’t know if anyone survives Lupus but rather we have learned to manage it. It was a steep learning curve but I would consider us Survivors. Last week we planted some vegetables, flowers, and herbs, and it is exciting to see if they will grow.
www.gofundme.com/makeamiraclehappen
Chichi3841
I was diagnosed with Lupus unofficially by my doctor a few months ago. The pain is very much real and it started out with a deep ache in the bottom of my left foot that months and bills from a podiatrist could not figure out. I thought I was going crazy until my blood test came back. Then the specialist visits are non stop. The fear of not being there for my daughter to see her grow up is eating me inside and out and I cant for the life of me understand why her father who is somewhat healthy wont step up to the plate. He is going through his own storm. Neverless I have a allergy to pineapples so this was effective to a certain extent. Fresh Pineapple that is ripe and organic slice long and wide and eat at least 2 slices per day. It almost completely took away my pain. I was speaking to the rhematologist and she let me know that her patient that juices from the caribbean is on the least pain meds for her disease. I would suggest to look into juicing and see if her health improves. Just know that once you do have a child that new fears and issues will come into play. Lupus is a unkind disease and can attack any organ so each disease is triggered and unique in itself. praying for you to be able to conceive and thank you for sharing your story.
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