Author information:

Name: Sandra

Lives in: Connecticut

Age: 55 years old

Diagnosed with lupus: 2004

Share Your Story: Sandra’s Diagnosis

On May 10, 2010 I was climbing the stairs after a long Mother’s Day and heading upstairs to bed. As I climbed the stairs, my heart started winding up and my breathing got much labored.

When I finally got to the landing by my bedroom, my heart got faster and kept beating faster and was not rewinding or slowing down. I got very afraid, grabbed my jacket and drove myself down to the bottom of the hill to the William Backus Hospital. I just told my husband and my kids, I had to go somewhere. I did not want to worry them.

9 Months before this happened, I was having the following symptoms before being diagnosed with anything:

• I could hear my heartbeat in my head like a mantra. (Scary)
• I lost my appetite.
• My fingers and toes were getting numb whenever it got cold. Even today the toes are hard to warm up.
• My stomach, although empty because I didn’t want to eat, got bloated and uncomfortable. But, my clothes started getting loose.
• I got tremendous pain in my legs, thighs, knees and pelvis. The severe pain in my hips made walking excruciating. I pushed through the pain because I didn’t want to lose my job.  My job required a lot of walking (Security Officer/Casino).

I went to a physician, who really could not care much, because he was about to retire. He did blood work on me and never called me back.

Three weeks later, it was Mother’s Day and after going to work for almost a year, barely being able to climb stairs or do any kind of activities without the fatigue making me want to fall over, I went home and fell over.

Each day leading up to this, I made it through my 0830-1630 work day, came home breathing hard, barely able to get out of my car because of the pain and went directly to bed. The only comfort I felt was being in my bed where I did not have to move or do anything.

My kids suffered because of what I was going through, but I didn’t have the energy to do more than my body would allow. Sometimes it felt like I slept for days. Food wasn’t even thought of. I felt like I was dying.

So there I was on May 10, 2004. I drove myself to the hospital and they admitted me immediately.

My hemoglobin was 4.6. The doctor told me that I was lucky I didn’t have a stroke or heart attack. The first thing they did was pump me with 80 mg of prednisone.

I stayed in the hospital for 1 week.  I called it the Backus Hospital Spa because I got more rest in that week than I have since I had my first of four children in 1983. My last child was born in 1990.

It was at the hospital after constant blood work and tests that I was diagnosed with Systemic Lupus Erythematosus (SLE) and Hemolytic Anemia.

Although my life will consist of a Hematologist and a Rheumatoid doctor for its remainder, I am flabbergasted to still be here today. I never thought people could suffer such horrendous pain that they could end up getting used to it. I don’t know how I continued to take steps some days and make it through my day.

The Prednisone and the Cocktail of Pills that my doctors all arranged for me to take over the years have worked and I want to end my introduction with this important fact. I don’t want to get long winded.

If I don’t share anything else with fellow Chronic Illness and Autoimmune disease sufferers, I want to share this:

Learn about your illness, keep track of all of your symptoms and communicate with all of your doctors.

Make sure that your doctors communicate with each other. When you get bloodwork from one doctor, send a copy to your other doctors or have your attending fax it to them.

Learn the language of medicine as it pertains to your illness and more if you have the inclination. I was fascinated with medicine before I got sick, so I read a lot and learned terms that doctors might call “Shop Talk.”  Whenever they explained something to me, sometimes I could finish their thoughts before they finished and what I gained from them for that was Respect.

Make a Journal.

Educate your children about your disease. When something isn’t happening to a young person, they don’t get how sick you are because they are so used to you taking care of them. I went through so much with different ones of my children. I taught my kids the Spoon Theory. Some understand that my illness limits me, and sometimes I went through times where one of my children was so wrapped up in their own struggles, that they didn’t want to hear the word Lupus anymore. Well it’s here to stay so, get used to it.

So thank you for listening. My husband died three years after I was diagnosed with my illnesses. I had one other relationship and when that one ended, I kind of gave up on love, but I am an introvert who cherishes alone time. So I go to work each day, take my cocktail of medicines and keep all my doctor appointments which are many. But I am leading a good life which is moderately painful, but as I stressed above, if you have good caring doctors, which I do, you can live with Lupus. I wish I didn’t have the Anemia too and could get off of Prednisone, but alas, they haven’t found anything that can control my Hemoglobin deficiency yet.

A good month for me is if by some Miracle, my Hemoglobin reaches a 10.  Prednisone has been a part of my life for 13 years now. Today, I take Cellcept from the Rheumatoid, which I despise, and three milligrams of Prednisone a day. I wish I could throw them both in the garbage. I’m supposed to take 1500 mg. of Cellcept, but I can’t bring myself to swallow three of those pills a day. I also take other meds daily (Atenolol, Lisinopril, Folic Acid and Meclizine as needed for vertigo).

But I’m surviving. God Bless you all.

–Sandra

Share Your Story (SYS)

Welcome the SYS – a new series where the lupus community can share their opinions on a range of questions about living with lupus. Be sure to join our email list so that you can Share Your Story with the community. Posts featured in articles are always anonymous. And, if you want to contribute after reading the article, add a comment below!

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Share Your Story

 

Question: When starting a new relationship, when should you share with the other person that you have lupus?

Marqus Z.

“I was diagnosed in 1975 while I was in the Air Force. I believe you should tell [a person so they can] see how far you have come. Why? [When you are] able to encourage someone else, there is hope and the ability to build faith.”

Helena F.

“You should tell the person once you realize this might be a long-term relationship; otherwise, it’s not any of his/her business. I’d wait because a lot of people don’t understand the condition, so I wouldn’t want to waste time explaining it to someone who isn’t going to be in the picture anyway.”

Caroline

“I am 76 years old. It’s very important that whoever you go with or marry should know the truth and all the information about lupus. You need someone who will stand by you and understand what is happening to you, and will help you through it. My husband reads up on everything about lupus and has pulled me through a lot of bad times.”

Anonymous

“As soon as possible. It’s a huge part of your life, unfortunately, and you need a loving, supporting person involved because it will become part of their lives as well if the relationship were to continue. I am lucky because I do have a wonderful supporting husband who has gone through many tough and good times with me and my unfortunate illness. I let him know about it right away.”