My lupus story begins like most I suspect. Thinking back I believe my symptoms began around age 18 or 19. I had several odd symptoms that would come and go for years. Strange rashes on my back, and on my legs especially in the sun. Joint pain here and there. At age 23 I was diagnosed with having Shingles on the right side of my face. In 2009 I was in a car accident. I broke 2 ribs on my left side, that is when they discovered I have splenomegaly. At the time they assumed it was from the trauma of the accident and decided to “monitor”. Some time passed, still with odd symptoms coming and going. I began developing pneumonia several times a year. Again providers thought this odd but still could not connect the dots. My joints began to swell to the point walking was unbearable. My fingers turn purple and refuse to work when they are cold. When they are hot they swell and feel as if they might explode. Still no one could connect the dots. June of 2014 I had a case of pink eye, over night it turned into Ocular Cellulitis. My eye was swollen shut and the antibiotics were not working. The infection spread to my face and jaw. I have permanent nerve damage from the infection on the right side of my face. I ended up on two different antibiotics and a shot of Rocephin. The infection finally went away and blood work was done. They found my WBC was extremely low, my platelets were extremely low, neutriphils,esophils, etc all my counts were low, except the Monocytes were high. I was referred to hemo/onc ASAP and I was told that the blood work was low probably because I was getting over the infection. He said he would run tests again and expect the blood work to be better. The WBC jumped from 2 to 5. That concerned the Oncologist because it was too drastic of a jump and then I was diagnosed with pneumonia again. My oncologist sent me to Infectious disease and had me tested for everything possible including Lupus, Malaria and other exotic diseases. Several things came back abnormal but nothing that would have a definitive diagnoses. My oncologist finally decided I probably had lymphoma and did a CT w/contrast to prove it. The only thing it showed was my splenomegaly which because it is part of the lymphatic system made him suspect lymphoma even more. During this time I was diagnosed with IgG deficiency. This meant more specialist. In the course of six months I had seen 3 Oncologists, Infectious disease, my PCP, an Allergist, a Pathologist and all of them were stumped. My fatigue continued to grow, I dropped from 116 lbs to 98 pounds and no one could figure it out. The rashes became more pronounced and more defined. I developed a Malor rash (butterfly rash on my face). The depression and anxiety that came with it was growing with each blood test and specialist. Feeling like all of this was in my head and yet knowing the blood tests were all abnormal but no one knew why. Finally my oncologist decided a bone marrow biopsy was the only answer. If you have never experienced anything like this consider yourself blessed. There is noway to numb the bone. You feel the grinding and breaking of the bone with every twist of the instrument. The sucking of the marrow feels like they are pulling your hip through the little hole. You are sore for several days and walking is a challenge. Fortunately the results came back cancer free, which only put us back to square one. After that and all of the specialists say we don’t know lets run more tests I gave up. I was tired of being a guinea pig. Pathology set me up with IgG infusions every 28 days. This means every month I am hooked to an IV for 4 hours while I receive donor antibodies. The goal to this is to decrease the amount of infections I get. I went from being on a steady regimen of bactrim to only getting antibiotics once a month. I am now allergic to all sulfa medication because of the constant (everyday for 3 months) use of bactrim. Now my story becomes interesting. I was helping a friend look up her symptoms. All of her symptoms pointed to lupus. I became fascinated with researching lupus. She was sent to one of the top Rheumatologists in our state. She was diagnosed with Reynolds but nothing else. I decided one day to take a picture of my rash on my face when it was flaring. I took pictures of the rash on my back. I wrote down all of my symptoms and spoke with my pcp. She agreed with me that I needed to see a Rheum immediately. After one visit with my Rheum March 2016 she reviewed all of the tests and my symptoms. I was diagnosed with SLE and Reynolds. She started me on Plaquenil and and anti-inflammatory medications. I take a handful of medications every morning to combat the symptoms of my Lupus. My new healthcare team consists of my Rheum, My pathologist, PCP and now a sleep specialist. Because of the Lupus diagnosis and my fatigue it was recommended I see a sleep specialist. I have obstructive sleep apnea and per the specialist it is common among people living with lupus.
So there is my story. My brain and my body are two separate entities. I have all of these big things I want to accomplish and yet my body will not cooperate. Before Lupus I was always on the go, always smiling. Now it is difficult to even get out of bed to use the bathroom let alone do anything else. I push myself to do things which only causes more problems. I feel so helpless, I almost feel like what is the point. I do not feel like I am being the best mom or wife I can be because use all of my energy for work to pay bills, and there is nothing left when I get home. My husband say’s he understands but he doesn’t. He tells me staying in bed only makes depression worse but he doesn’t understand the activities he wants to do make my body worse. The swelling and the pain. My memory seems almost non-existent now. When I was first diagnosed I felt relief “finally there is an answer”, now I feel lost. I have no idea how I am going to feel from one day to the next. I just have no idea how to cope or what to do. Sorry this post is so long, I just needed to get this off of my chest and see how other people cope and if anyone else feels this way.
Hello and welcome to the group.
All of us lupus patients go through a tough time trying to get diagnosed. Your road to finally getting it was too. Unfortunately, we all come with a total different array of symptoms and we learn how to cope as we go along.
What do I say to you? That I understand how you feel. I am fatigue all the time. One day I want to get up and do things, others I just want to stay in bed. It’s hard for family to understand the life-changes we are going through. With time they will or Will not understand. It comes with the territory.
Hang in there. Keep taking your meds, go to your appointments and do only as much as you can. It’s not what we wished for, but I say to myself, at least I have a definite cause, I can afford medical care and there’s always times in which you will be on remission and feel normal again. So there’s that to look forward to. Hang in there dear. Hopefully soon, there will be a cure!
Thank you! I am sorry we are all suffering with this, but at the same time it is nice to know I am not alone. It is nice to know there are people who understand what it is like.