My Lupus Story, part 1

I feel better as a 50 year old woman than I did at 38.

I wanted to share my lupus diagnosis with you to help any one else going through it or help you to understand what someone with lupus is feeling. This will be multiple post as there is so much to share. I will get into the things I do to feel better and actually have GREAT quality of life. I want to get into the relationship between stress and your illness and OCD (yes OCD), there is an amazing relationship between OCD and lupus! Holy Crap did I do this to myself?

I’m not sure how my life with lupus will resonate because I believe the fact that I ignored my symptoms which sent me into a full blown crisis is not how most people are usually diagnosed. My understanding is it’s years of quirky symptoms before someone figures it out. We are actually dealing with quirky symptoms with my 20 year old daughter who currently sees a rheumatologist because he states that it’s only a matter of time and she will test positive. She has worse OCD than me and I am so concerned for her.

So, my story was at 38 I had some quirky joint pain. I would wake up with right knee pain 2 hours later that would be gone and now my left hip hurts. I was losing hair and was very tired. I was a little chunky at the time, moved to a new home, new area, new job. Saw a Dr. He did a slew of blood work and told me he thought it was possible that I had lupus but nothing conclusive. My experience with lupus as a nurse with very little. I went to nursing school in the 1980 and they knew very little about autoimmune diseases. I took care of a lot of people with MS but not lupus. Unfortunately I thought that can’t be I would have been diagnosed in my teens years. IT’s NOT true! You can be diagnosed essentially at any age!

My husband has one of those corporate jobs that moved us all over. We had for a short time moved back home. I was never one of those girls that said”I can’t wait to leave here”. My girl dream was to be married and raise my kids in the area that both of our families were living. So during a brief period of marital problems we had the opportunity to move home. It was difficult for my kids but I was so happy. Looking back I feel a lot of guilt for my selfishness of wanting to live near family. It wasn’t important to my kids, They were happy where they were.

Within 6 months my husband was giving an amazing opportunity that I could not deprive him of. We all left for Atlanta. It was difficult for me and the kids. It was during the recession and never dreaming, but we had a double mortgage for years from that housing bubble pop. It’s important to know that all of this stress, resentment and true unhappiness lead to my illness. In fact my marriage was in such a bad place that I am convinced that was the trigger for my illness. The stress of a double mortgage, absolutely new geographic area, minimal support, a husband that worked 80-100 hours per week. I felt like everything was on me. My kids blamed me for the move. This was by far my darkest hours. I was depressed, incredibly exhausted, very overweight, didn’t care at all about too much.

I had seen a Dr she again did all the blood work and it showed I had an elevated ANA. That was June. I had a blood pressure 90/60. In August I started with hand pain. Every morning they were stiff, sore, swollen. Every joint in my hands hurt. It continued to get worse, involved my feet and I made an appointment with the rheumatologist. It took 4 months to get in. December 8 was my appointment. In that time I started working a full time job because of the financial burden of the 2 homes. I hated the job. It was such a stressful nursing job on a med surg type floor. I never got out on time, it had a ridiculous amount of charting. My symptoms got worse, I was so tired I could barely function. My hands hurt all day long, I started taking motrin and it did little to help me. I was awake multiple nights with chest pain and ignored it. Oh how I wish I had not ignored it! I was losing hair, had horrible annoying jaw pain (sign of lupus). My urine was dark. I didn’t care about my weight gain. I had swollen ankles( thought that was from Aleeve so I stopped it).

So my December appt came. My blood pressure was 220/120. I can not tell you how many times they took it and wouldn’t tell me. He told me I was too old for lupus(He was wrong, There is no age that is too old for lupus!). He told me he thought I was going to have fibromyalgia. I knew he was wrong because in that short 4 months I developed crooked joints, Fibromyalgia doesn’t do that. Soo he did all the blood work and sent me to PCP to manage my blood pressure. I went on bedrest and started on 3 medications. 3 days later my blood pressure was no different and I felt horrible. They sent me to the ER. I had pericarditis(fluid on my heart) I was pancytopenic ( all of my blood counts were low) I received 2 units of blood and neulasta (white blood cell booster shots that cancer patients get). That man that saved me Dr.Cohen, nephrologist, sat me down and said I think you are going to have rare form of lupus nephritis and disagreed with the fibromyalgia. I was set up with a biopsy  and a follow up with the rheumatologist. That was in the beginning of January 2009.

That January appointment I received the news that indeed I did have lupus and my double stranded DNA was over 400, normal is below 30 depending on which test your lab does. In the month that I was waiting for test results I continued to feel lousy, weak, heart palpitations and I started with a weird rash on my ears. The one reason why he didn’t diagnose me with lupus is that I had no rash, no issues with the sun , no mouth ulcers. Well let me tell you what that rash turned into!

I actually got admitted to the hospital because I developed flank pain from the biopsy and a 102 temp. In the hospital is when the biopsy came back and it was that rare form of lupus nephritis. I was admitted for a week, received more blood, tons of IV antibiotics, Iv steroids and yes started on Cytoxan ( breast cancer drug). That rash turned into this crazy full body rash where I must have looked like I had leprosy. Almost every one entering my room stopped and freaked out. that rash lingered for 2 months!

So my lupus like so many others attacked my kidneys. I have had 3 Drs tell me that I should be on Dialysis. That was 8 years ago and I am not on dialysis and not even close! Most Drs are amazed and stumped when they see those biopsy slides and all the damage. Stick with me and I will talk about what I do to keep my lupus in check.

First lesson from me is take this disease serious. I was in denial(nurses do that). People do die from this illness. I currently work with 4 woman with lupus, 2 of them have way more problems than their lupus( 30-40% diagnosed with 1 autoimmune disease will get another). In my last position 3 out of 4 nurses had an autoimmune disease, crazy! The very bad thing about an autoimmune disease is that usually when you see someone with it you do not sit there and say to yourself “Oh, they look like they feel horrible today” All of us at work with lupus are symptomatic and I believe that no one understands that. It is very frustrating because people don’t believe our stories.

. I am the first to admit I am very high functioning.Probably not the normal lupus patient high functioning, I have tons of energy and refuse to sit around. Do I have pain…yeah some, mornings are difficult, I can not get out of bed quick and expect my feet to function. I usually make coffee and sit on my heating pad in the morning  I wake with some degree of numbness which drives me nuts, and that goes away usually in the cup of coffee time.

My plan is to discuss further how I keep myself healthy along with some of the data I have found, It is a lifestyle change but some of the things are dramatic in the way that I feel. I am desperate to figure this out more than ever as my daughter is facing this and it breaks my heart. I was 42, she is only 20. I want her to have all the wonderful things in life that I have had. (Gratitude is essential to healing, I promise!).

It’s important to note that I worked very hard on my depression and being positive and reigning in my OCD. I promise you if you have an autoimmune disease and suffer from anything above you have got to reign it in and work on those issues. I was dumbfounded when I read some medical journals. I learned to take control of what I could and let some crap go, it’s just not worth it. More on that to come.

If you suffer from lupus does some of my story resonate with you? Share some of your thoughts, a lot of people are suffering and we need to acknowledge what were facing together and move away from lupus dictating our lives. I am not about whining at all,  I actually see that  my lupus made me a better person, better nurse, better wife, mom, sister, daughter.

I want you to all know I feel your pain but I promise with serious work and lifestyle changes you can feel better!

I say this from the bottom of my heart, I want every one to feel better, Lupus sucks.


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