Little Nervous

Tomorrow I will be admitted to Virtua Hospital in Mt. Holly for my kidney biopsy. I am extremely nervous and not looking forward to it.

I have to check in by 1230 and then get a bleed time test which is supposed to make sure my blood clots enough to perform the procedure.

The biopsy is scheduled with Dr. Vargas at 230. I am hoping they drug me up enough that – do not know what is going on. Otherwise I may panic. Wish me all the best of luck.

The results will be back within 2 days the doctor said and then we will be able to know which treatment we will be using to help battle this problem.

So hope for the best, and think of me tomorrow. :-/

Trying to keep it together

Well its official. I saw the Nephrologist, the kidney doctor, and she said my lupus has moved into my kidneys. I have protien leaking out in my urine. The doctor sent me for an ultrasound and I have to collect my urine for 24 hours so they can see how much protien I am losing on average in a day. I also have to get labwork done and I will be getting a kidney biopsy. I will have to stay overnight for the procedure so they can monitor me.

After the results come back, they will be able to see what stage my kidneys are at. This will determine the way that they will treat this. More than likely they will use chemotherapy drugs. There is the well known IV kind and a newer oral pill kind. The oral pill is supposed to be safer with less side effects.

For now I am trying to stay positive and not think too much into everything. There is nothing much that can be done until after all of the results are in, so no use worrying until I know exactly what it is I am coping with.

I will keep you posted on my progress and with any new findings. I appreciate all of the support. I couldn’t do this alone.

Bad News

So the results on the labs came back. The Rheumetologist is sending me to a Nephrologist. The lupus has traveled to my kidneys.

That’s all I really feel like typing now. Trying to deal with all of this information. I have an appointment early in the morning. Wish me luck.

Medical Mystery

So this blog was supposed to be a day-by-day journal of my life. I wanted to be able to write how I was feeling each day and be able to look back and see how many good days I could have in a week, month, or year. Well as you can see, writing daily has not been going well at all lately. That’s not to say I haven’t had anything going on.

Last I wrote it was the day after my birthday. I had just gotten over “the flu.” My eyes were a little swollen, but I thought it was just from being sick. Turns out I could not have been more wrong.

My eyes started to swell on my birthday, October 18th which was a Sunday. As the week progressed, they got worse and worse to the point that it looked like I was punched in the nose. My eyes were red and all around my eyes were bruised looking and very swollen. I got an appointment with a new doctor in my regular family doctor’s office. I went with my eyes almost swollen closed, yet I had no pain, no congestion, absolutely nothing else was wrong. His medical diagnosis was “I don’t know what’s wrong. Just go home and see if it goes away on its own.” THANKS A LOT!! The picture of me is from this same day too.

Needless to it did not go away on its own. Sunday, October 25th, I went to the ER since my eyes were swelling so much that I could not open my right eye. They told me they felt it was Bilateral PeriOrbital Cellulitis. That means an infection in the cells and tissues around BOTH eyes. They gave me antibiotics and eye drops and told me to follow up with my family doctor in 3 days.

October 28, I have been taking my meds from the hospital and am on my way to see the family doctor. My eyes are still very swollen and not getting better. My family doctor admitted me into the hospital for IV antibiotics. I spent 3 days in the hospital getting IV antibiotics. They sent me home on October 31st, Halloween, with a perscription for more oral antibiotics.

The swelling was still present and I was becoming exteremely frustrated. Thursday, Novemeber 5th, I went to see my rheumetologist. He told me that he feels that it was a flare from my lupus. He increased my steroid dosage up to 20mg. He also sent me to get bloodwork and a urinalysis. Also he wanted me to make an appointment with a dermatologist and the eye doctor, just to make sure nothing more serious was present.

Today, Monday, November 9th, I saw the dermatologist, who agrees that it is a lupus flare, and the eye doctor who thinks its a combo of my.lupus and thyroid condition. The eye doctor made me an appointment with an Endocrinologist to check on my thyroid. The Dermatologist had my results from my lab work faxed over. He came in to let me know that the protien levels from the urinalysis were high. He ordered a new test, just to see if on this one the level is still high.

I have my follow up appointment with the Rheumetologist tomorrow afternoon. I am going to see how he feels about the results. If it is at a level that is too high, it could potentially mean that my kidneys are not functioning properly. That would be bad. Also, it may explain the swelling around my eyes.

So I am a bit on edge right now. I just want an answer finally. Good or bad at least I will finally know what is going on. Wish me luck though and hope for the good.

I plan to update much sooner this time around. I am going to go lay down and try to sleep and not constantly think about what could be wrong. Goodnight!

It’s Going Down

So talk about a rough week. I’ve had the flu, and its been horrible! The first couple days I was just really sore and had a fever. Saturday was the absolute worst. I was nauseated and couldn’t keep anything down. I felt horrible and like I was dying.

Sunday, yesterday, was my 25th birthday. I spent the first half of the day feeling nauseated and laying on the couch. Later in the day I ate some food and drank some ginger ale, and they stayed down! It actually made me feel better to have something in my stomache.

So I awoke this morning feeling much better than I had in a week. I still have a slight fever and am a bit congested, but I will take that rather than the shit I’ve felt like the past few days.

I am hoping I am feeling great tomorrow since I have tickets to go to the Bruce Springstien concert at the Spectrum in Philly. My cousin, Kait, and I are going for our birthdays. She turned 21 on Saturday, and as I said before my birthday was Sunday. I am excited to get out of the house finally and have some fun.

I will keep you posted. Cross your fingers for me and hope for my health to keep improving. Also hope for no major flare ups! Thanks!! Ill update you all soon!

My Luck

So the other day I wrote about the horrible pain I had been in. I went to the doctor’s yesterday to find out I have the flu. They did a nasal swab and I am waiting for the lab to call with the results. I will find out if it is the regular flu or if its H1N1, better known as “swine” flu. I have been quarantined for 24 hours now and started on Tamiflu.

I’ve had a fever of 102 and cold sweats extreme joint and muscle pain as well as stomache discomfort and sore throat. All and all its been very uncomfortable and I’ve been in bed since Monday. I am hoping to be feeling better by this weekend since it is my birthday weekend and my cousin’s 21st birthday. Also I am supposed to be babysitting my good friend’s daughter Lana.

So cross your fingers and hope I get better quickly. I have plans for once for this weekend and I don’t need the flu to ruin it. I am sick enough with all of my flare ups, I would just like to be able to celebrate my birthday feeling good and flare up free. I am going to be 25 yet there are days that my flares are so bad and I am so achey and swollen that I feel like I am 85 instead. Well, that’s all for now. I will update gain soon!

Red Skies at Morning-A Sailor’s Fair Warning…

So its been a few days. All was going well. I finally caught up with an old friend yesterday. We went to Skeeters, the local bar, to have lunch, catch up, and watch the Eagles game(they won by the way).

After the bar, we headed to the driving range to drive a few balls. All and all it was a great afternoon. Later that night my wrist started to hurt and cramp up, but I blew it off as probably being from the driving range. My boyfriend, Jack, and I went to the movies that night to see Couples Retreat with our friend Jimmy and Tiffany Robb.

As the movie went on my entire body began cramping up. By the end, I was in so much pain I could barely get myself in and out of the car. Once home, I took some medicine and went upstairs to get changed for bed. The pain was so restrictive and horrible, that I could not even get my own sweatshirt off to get changed. I had to have Jack come up to get it off for me.

To me, asking for help is embarrassing. I have come to realize that it is going to have to be a part of life. There are days when I am not at my best and I need help. It doesn’t make me a bad or helpless person, everyone needs help in some way shape or form sometimes.

So I woke up this morning, or should I say afternoon. I never sleep in very late, so right off the bat I knew something was up. I slept until 1:00pm. I was groggy and in pain. I could not move at all.

To make a long story short, I still haven’t been able to get out of bed and its now 1245am. My joints were so swollen and my whole body just ached and I couldn’t move not even roll over without a huge discomfort.

It makes it so much more annoying since I am out of medicine and can not get it refilled until I get a new insurance card, which they are taking there time sending out even though I have stressed the fact that I need my perscriptions. My doctor seems to be no help either. Everytime I call and need him, he is never in the office. Its very frustrating and I can’t wait until everything just finally works out.

Here is to hoping tomorrow is a better day. As long as I am able to get out of bed, it will be a step up from today. I will keep you updated on my progress. I say progress because I am trying to stay positive. So here’s to a better day!

Take that, Rewind it back

So yesterday afternoon I wrote about how I had been having some pretty good days. All that changed out of no where last night. I had been doing laundry and cleaning around the house all day yesterday. At around 7:00pm I went upstairs to grab another load of laundry when my legs started cramping up. By the time I brought the laundry down and folded the clean clothes and carried them back up, I was hardly able to make it all the way up the steps.

I laid in bed and within a matter of 5 minutes I was in so much pain I could not even roll over or change positions without being in agonizing pain. My back, legs, hands and arms were all swelling and throbbing. Stabbing pains would run up and down which ever part of my body I was trying to move. I also started getting a fever and a headache.

It wasn’t until around 9:45pm, after I had taken some pain medicine, that I started to feel somewhat better. I was able to move more, but I was still slightly achey and had a headache.

Today I am feelig fine. It just goes to show how flare ups can come on out of no where. Often times they are unpredictable and can be dibilitating. I am just glad for the strong support system of family and friends that I have.

“Out of difficulties grow miracles.” – Jean de la Bruvere

Running Down a Dream

Well so far so good. The weather has been beautiful and my joints haven’t been bad at all. When the fall weather first came it was not god. My hands were so swollen, I could not move them out of a fist position. Though I am not really able to spend time outside enjoying the nice days, I am just happy that it is not raining.

The sun creates a chemical reaction within my body and causes serious flare ups. Anytime I am out in the sun I need to wear sunblock. Even if I am just going out to drive in the car. And even sunblock does not stop the flare ups. I am not suppose to be out in the sun at all. But I love the outdoors, so I usuall just take the risk and know that I;ll be expecting a flare up within the next 2 days. Its a risk, but sometimes its worth it.

Well nothing exciting is really happening, so I am going to go and play with my puppy. Lilly is her name. She is a Beagle/Dachshund mix. She is almost a year old. She keeps me active, which is great. Without her, I would probably be quite depressed and stay in bed all day. She forces me, even on bad days, to at least get up and walk around for a little while. She is a life saver!

Well enjoy the day!

This is the story of a girl…

It was November 2, 2008. I couldn’t breathe and was having chest pains for over a week. I went into the ER at Lourdes, and was soon admitted. I spent the next two days going through numerous tests and exams and waiting to hear results of scans and blood tests. I was on oxygen to help me breathe and there was talk of draining the fluid from my lungs. I was scared.

In the months prior to my hospital stay, I had been dealing with a number of symptoms. Hair loss, weight loss, exhaustion, an odd rash on my nose, severe sunburn, swollen joints, severe joint pain, nausea and headaches just to name a few.

The doctors appointment came 2 days after I was released from the hospital. LUPUS. The doctor said all of the test results and my signs and symptoms pointed to this. I didn’t know what this was, what this meant for me and my future, and I didn’t know if Iwas going to be okay.

Lupus is an auto immune disease. There are several different types, but mine affects mainly the connective tissue in the body. What this means is that my body often times does not recognize certain connective tissue cells in my body as being good. Therefore, my body goes on the attack against them causing inflammation and pain. When I was in the hospital it was because my body had attacked the lining of my heart and lungs. This caused inflammation and fluid around the two organs. More often times, it is my joints that are affected. Mainly my fingers and wrists will swell and get stiff and painful.

Since being put on medication, I have been much better. They started me on high dose steroids to take down the inflammation. Slowly they are trying to ween me off of them. In the meantime, I am also on Plaquanil. This is supposed to take the place when the steroids are gone. It is supposed to lessen the amount of flare ups I will have. I am also on many vitamins and supplements to keep me healthy and to help my hair grow back.

Living with Lupus is a day by day adventure. There are good days and bad days. It is a disease of “flare ups.” This quite simply means that some days I will be perfectly fine, and other days my symptoms flare up. On days like this my joints will be swollen, I will be extremely tired and worn out, often times I will get headaches and nauseated. The severity of these symptoms are also unpredictable. I may only have one of the symptoms on one day, be fine for the next couple days, and have all of the symptoms the next day. You just have to be thankful for all of your good days, and take the bad with a grain of salt, knowing there is a good day in your future.

I want to have this blog to document my life with Lupus and also to help anyone else out there who is dealing with the disease themselves or for those who know someone living with the disease. Not every entry will focus directly on the disease, but be more of an outlet for me as I personally deal with all of the changes and effects of the disease.

Please feel free to ask questions, post your own stories and share any information you find here with family and friends.