Introducing DesertCactus

Hello! I just joined the site. I have many times read, (and heard), that it typically takes years to get an official lupus diagnosis. I have had many health problems for years. I had my gallbladder out at age 15 and have had liver problems since age 16. I remember having joint pain for quite a long time too. In 2010 I noticed swelling in my wasn't painful unless pressure was put on it, but it was uncomfortable. My doctor ordered an ultrasound which came back normal. That same year I had a few visits to the ER for very extreme abdominal pain. My liver was found to be enlarged and I had fluid built up in my abdomen. The liver pain came and went off-and-on. Then again in 2012 it really started getting back. My doctor had me do an MRI of my abdomen which showed abnormalities. I was put on an extremely strong antibiotic and given prednisone. I also was referred to a liver specialist. At the time I didn't even think about the possibility of lupus being the main culprit for all my health problems. The specialist even seemed to rule it out which put my mind at ease...for the time. My ANA was normal and so were most of my other blood tests. I started struggling with extreme fatigue around that time as well. My eyes just didn't, and still don't, want to focus. Kind of like when you are watching tv, the main focus of the picture can be clearly seen but the background is unfocused.

I had been an A student and made the Dean's list many times. I graduated in 2011 with my A.A. degree with highest honors. I then continued on pursuing a Bachelor degree. However the health problems started affecting my academic performance. Where a few years prior, I had been able to handle a extremely full load of credits...18 credits, I now struggled with only 6. My grades slipped as well. Eventually I had to quit college.

I needed a fresh start and made plans to move out of state with my best friend. I had lived in Minnesota and hated the cold and dreary clouds. Then I found a nice affordable apartment in Nevada and my friend and I set out in early 2013. A difficult trip in and of itself. From then on out my health just got worse and worse. In the fall of 2013 I was put in the hospital for scary high liver the 800 and 900s. After prednisone therapy and other iv medications I was able to go home. I struggled a lot with many different health issues. I also got extremely low blood sugars that caused me to almost lose was just a good thing I had my best friend/roommate, otherwise who knows what would have happened. Anyway I had to see a neurologist because of weakness in my legs and numbness felt throughout various parts of my body. The doctor was very good. After the initial exam, he ordered a series of tests and such. He had suspected MS but the brain MRI ruled that out. A nerve and muscle test resulted in finding out I have peripheral neuropathy in my legs. I also found out my blood test results and was stunned. My ANA had came back positive and although he had to do further testing to determine what the exact cause was, he suspicioned lupus. After my dsDNA came back positive he told me I had lupus but in order to "officially" be diagnosed I would have to see a rheumatologist.

In the meantime I also had another serious complication arise. My doctor was concerned about what some imaging I had done showed. I had to have a neck MRI (it was a Friday afternoon). That following morning I, and my friend's phone had a message from my doctor telling me I had to see a neurosurgeon ASAP. My cervical spine was putting pressure on my spinal column and disrupting the flow of spinal fluid. Because of extremely difficult insurance issues, it was a huge mess and lots of stress before I saw the neurosurgeon and months later. When I saw him he did say I would need surgery and that I would have to wear a neck brace for approximately 6 months. However, after he got the DEXA results back, which showed my bones were very weak, he said before he would even attempt surgery I would have to take a bone building medication...he said Forteo, for at least 6 months. Then I saw the rheumatologist who confirmed the lupus diagnosis but he didn't want me to take Forteo. Thus I haven't dealt with neither of the bone stuff...neck or low bone density. I just get too stressed out with all of it.

Well, my symptoms are still getting worse. The rheumatologist prescribed me Plaquenil but ordered me not to take it until I had a complete visual field eye exam...the eye clinic told me it is actually called a Plaquenil exam. Again insurance complicates that too. Last month I was again hospitalized for a kidney infection. There was lots of protein, hyaline casts, blood, etc. found in the urinalysis. Thankfully after a week, the doctor deemed my okay to go home.

My family and friends want me to take the Plaquenil but I rather not hassle with it. I admit that the depression plays a part in my decision too. Things in my life are just too chaotic and uncertain. I plan on moving again in 6 months or so. Thus although my family and friends disagree with me, I am putting all of it on the back-burner so-to-speak, until after I am settled again.

I have good days and bad. More bad than good. I try to focus on the simple and pleasant things in life. I am not able to do what I used to. My hips are bad and so I cannot walk as far or as long as I used to. I miss being active. But I have at least been able to find other activities to help me cope. My sweet little toy poodle also brings joy to my life.

Anyway, sorry this was so long. I am glad I found this site. Thanks! :)

Hi Desert Cactus,
I am happy that you found this site also. I agree with you, I don't like to take my meds either ( my dog doesn't want to take hers either) but they are necessary to combat our illness. Whenever I don't want to take mine I think of how sick I get or being in the hospital and that is so much worse. You have been through soooo much, you need to do what you can to take good care of yourself. Your health will not wait until you move in 6 months. Make sure your rheumy knows about your spine issue, this sounds very serious and your doctors should be communicating with each other to give you the best care.
Tons of hugs,