Jennifer’s Lupus Story

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My story is a bit like a good mystery. If you keep searching, you will find the answers. It all started way back in the 1980’s. I was working at a local hospital on the night shift. I found I was napping during my breaks and when I would get home, I would sleep all day and up until going back to work. This is not normal sleep. At first, I thought it was because I was working the night shift (11 pm to 7 am). I thought my body was out of whack. On further review, I actually liked working nights and this was something that had developed after some time period of working nights. When my husband told me I needed to see the doctor I did.

I went to my family practitioner (who was out of town so I saw his partner, a friend of mine from school) and after examining me, he took blood work. I returned to find that nothing was out of order, blood work anyway, but the symptoms were still occurring. At this time I had extreme fatigue, low grade fevers and joint aches in my hands and feet. Since this doctor knew me personally, he knew I was really telling him the truth* and ran more tests. One of the tests he ran was the RA Latex test, which looks for rheumatoid arthritis. All of these tests came back normal except for one, the ANA (antinuclear antibodies). It was positive. He then told me he suspected I had lupus and wanted me to see a rheumatologist.

Ok, in the interest of not writing a book here, I will suffice to say that in the course of this diagnosing roller coaster, I have been told by several different doctors that I either have or do not have lupus. Funny but none of them can form a concensus it seems. For years, at least ten years, I had it, then I didn’t. It was confusing. I was still working so I went on pushing forward and when I felt good, I forgot about lupus. When I was not good and in pain, it would rise to the front again.

I will say that I have been diagnosed with fibromyalgia as well, and also raynauds, colitis, osteoarthritis, osteoporosis, corneal erosion, migraines, and neuropathy among the top contenders. I also have asthma and can on occassion whip into a mean case of pleurisy.

In the intervening years, it has been shown that without a doubt, I do indeed have lupus. The frustration of all the wasted time and energy is very real and sometimes can mean life or death to those of us with lupus. If the docs cannot figure it out in time, some have lost their battles. You can read my opinions of doctors at the bottom of this post.

In the end, I have had to become my own advocate. I have had to “fire” doctors and find the ones who were knowlegable and compassionate. I say, it is the patient who is in control here, not the doctors and if you do not advocate for yourself, you can find yourself in a mess of problems, especially when you have a disease like lupus. You are the team captain in the care of your disease.

So, now that I have been diagnosed for some almost 20 years now, I have found a team of doctors who meet my requirements. I am also needing them more lately so I am glad that I found them when I was not in such a need so I could rely on them now. For that, is the most important part of being a survivor, being in control of your care and getting the most care you can get when you need it. Being prepared is always a good thing, and in your health and care, it can be everything!

Footnote:

* In my personal experience, I have found that women doctors appear to be more compassionate to other women than their male counterparts. Some of the male docs I have seen (not all of them, there are good ones out there) have either said or implied that I am just a needy woman looking for attention. WRONG! I am a sick woman looking for caring doctors who can make me live longer and feel better doing it. If you ever feel like your doctor is condescending to you and belittling you, get up and walk out of there and find another one. Life is too short as it is to deal with incomptetent docs who think the minimum of care is acceptable and do not want to explore options or even discuss them with you. I call them GOD101 docs. They think because they went to school for so long, we are obliged to bow down to them. Sorry, but it is my body that is hurting, and my mind that is being challenged by docs like this. Like I said, stick up for yourself, and if the doc will not believe you do not give up until you find one that really listens! There are  many wonderful docs out there, male and female, who will do their best to help  you! Remember, it is your pain, your disease, and your money!

 

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