I got the following blog post in my in box today. I was in the process of searching for medical news for today's blog. I had decided I would try and avoid lupus stories, you know, investigate things I don't know much about. Not dwell on my illness because there is so much out there that needs to be studied and cured.
But then I got this newsletter from the Lupus Foundation of America about love and lupus. Since it is the month of love I thought it was a good time to do some sharing.
I have had long winded discussions about what it is like living with lupus. But sometimes we forget what life is like for the people who live with people with lupus.
I was 35 when I was diagnosed with Systemic Lupus Erythematosus and Lupus Nephritis. It was a crazy year!
That was the year I married my soul mate. It was the year I went through the worst pregnancy - filled with complications, 6 months of vomiting all day, medications, hospitalizations, low hematacrits - and then an emergency c-section at 28 weeks to a 2 1/2 pound, 15" beautiful baby boy! He was in the hospital for 10 weeks before we could bring him home (I remember the day we brought him home, we were afraid they were going to arrest us for taking him out of the hospital - and then we swapped off sleeping because we were afraid to leave him alone without having the machines to tell us he was breathing). When he was in the hospital I went back to work so that I could have the time off when he came home in September. When he came home, I would work from home 3 days a week and he came into the office with me 2 days a week.
I was exhausted. I had been since the day I realized I was expecting. But then the day came that changed everything. I had fallen asleep on the futon in the living room and I woke up with my eyelids swollen shut. We had just brought the futon out of storage and I thought maybe there was some kind of mold or something that got in the futon and I was having an allergic reaction (I laugh now because the biggest worry at the time was how we could afford a new couch if we had to throw out the futon).
So I went to the allergist - no allergies. But some odd blood work - my hematarcit was really low, but I was not iron deficient. He mentioned autoimmune and said I should contact my primary care physician.
I then did the one thing that no one should EVER do when a doctor mentions a diagnosis in passing. I looked up autoimmune disease on the Internet. There are over 100 Autoimmune diseases and when you look at the prognosis of a lot of them it isn't very good .... words like renal failure, fatal, death. But I was optimistic and called my doctor.
She had no idea what was wrong with me. And that is ok. We have this illusion that all doctors know all this about every medical condition known to mankind. But I am ok with a doctor who says ..... your test results infer something I am not familiar with, here is the name of a specialist who can better treat and diagnose you. So, I called the rheumatologist. She was not taking new patients, but said she could see me in a month. I thought, this is good, it can't be that bad if I can wait a month for an appointment. She told me to have some bloodwork done so that she would have a clear picture of what was going on and I scheduled my appointment for a month later.
Two days after I called the rheumatologist I got a call at my office. She had gotten my test results and could I come into the office that afternoon. Now I was worried. My husband and I started talking about what we would do if ..... if it was cancer, if I had to take time off from work, if somehow it was still the futons fault.
The rheumatologist told me I would need to see a nephrologist since the test showed my kidneys were not filtering the way they should. So, three days later I was in the nephrologist's office. Up until this point I had no idea what a nephrologist did ..... I am not even sure I had ever heard the word. At this point I had so many blood tests taken that my arm was black and blue from my elbow to my wrist and they had to use butterfly needles to get any blood (again, I had no idea until this process started what a butterfly needle was).
To say I did not like the nephrologist when I first met him is an understatement. He was very gruff and matter of fact ....... your kidneys are not functioning, you need a kidney biopsy, your blood pressure is too high for a kidney biopsy due to the edema so you will be in the hospital for several days, make child care arrangements, you will be admitted tomorrow.
And I sat there stunned.
Once all the tests were done and I was home I got the phone call .... you have stage 4 lupus nephritis ..... very aggressive ...... 2 years chemo therapy ..... prednisone until the chemo starts to work ..... we will start next week ..... have more bloodwork ..... very serious. And behind all of this, how am I going to tell my husband. What am I going to tell my kids?
My husband's mother died from complications of lupus before people really knew what lupus was. So for all the conversations we had about what could be wrong with me, we never mentioned the "L" word. I vaguely remember how or what I told him when I got off the phone with the nephrologist. What I remember was his response "Are you dying." And my response "Not today." And then he said "I can work with that."
I gave him the option at that point .... you can walk away, no hard feelings. He reminded me of the vows we had taken only 7 months earlier ..... in sickness and in health. It has no doubt been hard on him. I wasn't the easiest woman in the world to live with before I got sick .... I am even worse now. When you finally realize you have no control over your body, no control over your illness, you try really hard to have control over everything else in your world - and being that I was a control freak before lupus this does not bode well for the men in my house!
But my husband stuck it out .... 5 years later my kidney disease is in remission and I only have to deal with the SLE (which I refer to as my annoying lupus). And my husband takes care of me .... when I am tired or in pain or just worn out and fed up. He cooks and cleans and takes care of the kids when I can't. Tries to console me when I cry for no reason or understand when I am just angry.
We live a good life and I am grateful. But loving someone with a chronic disease can't be easy. So for Valentine's Day I am going to try and do something special. But there are no guarantees that will happen .... I could be asleep by 6:00pm.